Because I CARE

What you Learn Makes a Difference - a followup post

2012-02-17T10:35:00.000-05:00

Even when the news isn't good, sharing plans for the future can bring people closer to their loved ones and ease fears.

After talking with some caregivers in the last two days, there definitely needs to be a follow up to my last post that covers the time when what one learns as either a patient or a caregiver is not good news.

Who likes bad news? No one, of course. Particularly within the realms of health, many people work under the assumption that denial is easier than knowing a difficult time may lay ahead. I realize I am an optimist and always look for the good in a situation and not everyone is like me, however, I still feel that information is empowering. When a person is empowered with the tools they need to make decisions for themselves and their loved ones then they feel better about any situation no matter how dire the prospects.

So many times I've seen situations where there are regrets because people didn't take steps they could had they had the knowledge that was within their grasp. By facing reality and making even tough decisions, a person (and their loved ones) can navigate a difficult time with a sense of peace that does not come when the decision is made to do or know nothing about your health situation.

You already know that medicine is an imperfect science, yet some people rely only on information that is generalized by the necessity of that imperfection. Let's take cancer for instance. In any cancer situation, a doctor looks at the type of cancer and does his or her best to match the rest of the health of the patient with what appears (generally) to be a best course of treatment. The fact is that it may or may not work. Now, let's say the cancer doesn't respond as the doctor and patient had hoped. Sometimes whether the doctor recommends a chance in course or the patient does, it's necessary. If a patient and their loved ones don't know what's going on, they can't make decisions or be their own health care advocate.

Now, worst case scenario. No treatment seems to be working. The patient wants to stop treatments. The cancer is still there and maybe worse. What's a patient or caregiver to do? Go home and pretend nothing is wrong and struggle through whatever comes along? No. Find out the next prognosis (best idea of what is most likely to come) even if you don't think you like it.

If it means admitting that yes, your earthly life (or the life of a loved one) is coming to an end, then even that knowledge is empowering. A vast majority of people do not have a choice in how they spend their last days, weeks, or months of life. But this patient does. That's power. It's power to find space for the bucket list items, it's power to reconnect to family members and say what needs to be said, and it's a time to prepare the way for them so that they don't have to manage the business of death by themselves. By handling things like updating wills and all that "getting your affairs in order" entails, you leave your loved ones a gift. They know that they are following YOUR wishes, which brings peace and comfort when you aren't there offer that to them. Isn't that better than knowing inside your heart that the end is coming and doing nothing about it? Many people feel better if they're taking action rather than letting things happen to them. So instead of focusing on the dying, focus on what you can still do to make a difference. Doing so may help reduce some of your own fears about the dying process.
Is this what anyone wants to do? No, of course not. But truly, dealing with any information is all in how you look at it. Some make look at a poor prognosis as a 'death sentence.' I encourage you to look at it as a 'how to spend the rest of your life' sentence.

So if you (or a loved one) have received the news that their health outlook is not good and perhaps life is drawing to a close, here is a list of things to look at and address with those you love.

Is my will, healthcare power of attorney (proxy), DNR (do not resuscitate), and durable power of attorney in order?

Have you asked about hospice care - either in your home or at a 'hospice house?'

Do the people I care about know where I want my last days spent? (its okay to change your perspective on this as time goes on)

Have I said all the things I need/want to say to my loved ones?

Have I given or planned for the distribution of my personal belongings the way I wish? (sometimes a will does not cover personal items you may really want to go to a particular person - a car, jewelry, photo albums, and special personal collections) Along these lines, consider giving those items away now, while you can see the joy they bring to your loved ones.

Have I told my spouse and children, what kind of funeral I'd like? Remember that funerals and memorial services are for the living. If they feel they have done right by you, then they will offer peace and comfort, rather than add a burden of guessing the answers for how to plan.

Lastly, what if you haven't gotten a prognosis of life coming to an end? Why are you waiting to get one? Working through the list above is empowering at any stage of life... its information, and it's empowering.

What You Learn Makes a Difference - for the Caregiver and the Patient

2012-02-15T14:39:00.000-05:00

Information doesn't have to be digital to be helpful!

What are you learning? Have you or your loved one faced a health challenge by pretending it doesn’t exist? We all know someone who has. How are you educating yourself about your needs? The fast pace of medical advances challenges us, the consumers of medical care, to educate ourselves. Learn about your condition and ask that doctor questions. No matter what stage of life you are in, the better you understand your own body, the better you and your doctor can create a winning team to avert medical crises and maintain good health.

Gone are the days when anyone should get away with having the Dr-God mentality. Do we want our physicians to have all the answers, sure. But it's just not a reasonable way to approach healthcare anymore when we have so many resources available to us. Every person and every body is unique. By matching your body and its needs to information available, healthcare becomes more proactive then reactive.

If you or a loved one area dealing with a health crisis, arm yourself with information. Does the thought of Google-ing the dozen lettered diagnosis your doctor's just dropped in your lap make you want to run and hide? You're not alone, but if you let your fears overtake you, you're losing out. Some doctors discourage internet use with concern that their patients will not interpret the information they receive accurately, increasing fears. But if what you learn empowers you to ask questions, and you get answers and a better perspective on your care. That also inspires more confidence in what your doctor recommends, then everyone wins. Some doctors encourage internet use, knowing that if a patient takes time to educate himself or herself when they are ready and aren't just relying on what can be learned during an office visit.

Not secure with Internet search engines? There are medical libraries in many hospitals with librarians who will help you find more information. Community libraries are also a good start. The key is to get some information and start processing what you learn.

I'll give you some tips for gaining information and support from others, such as in support groups, in a future post, but for now, I want to encourage you to seek information. Read any information the doctors give you about your condition and let them know how that information sits with you. There are so many things that your doctor doesn't and can't know about you and there is the gap that only you, an empowered patient or caregiver, can fill.

For example: You have been diagnosed with cancer and have started chemotherapy. Dehydration is a concern and it's listed in the drug information sheets you're handed by the infusion nurse. If you read about the possible side effects, like dehydration, you can recognize the symptoms before they land you in the hospital. Take that one step further. Instead of just assuming you need to drink more water, you talk to the doctor about what other things you can do to help prevent dehydration. Gatorade? What if you don't like it? Are there other options? Ah, the doctor mentions that melons are great for not only getting necessary fluids but also in balancing electrolytes? Electro whats? It's okay if you don't know all the terminology. What does matter is that you're discussing a proactive approach to maintaining your
overall health instead of reacting to something that can be prevented.
Oh, melons - Watermelon? Love it? You know to stock up before your next round and plan some fun snacks. You're taking charge of what you can. You can't make the cancer go away on your own, or predict your body's reaction to chemo, but you can be armed with information to make choices that make a difference.

Once you start learning about your condition, share what you're learning and your response to the information with your loved ones who care. Sometimes they don't know when or how to talk with you about what you're going through or what your caree is going through but they want to. Sharing what you've learned opens the door to bonding and building a support network for your specific needs.

New Year, New You - WHO is on your support team?

2012-01-05T09:58:00.000-05:00

So what does an owl say? If you look at this little guy, he looks a bit surprised, perhaps caught off guard. Many caregivers do the same when asked WHO they have supporting them.

Who is your go-to person for help and support in a crisis? If you have a crisis plan, then you’re prepared and worry about uncertainties will not weigh down our outlook. But it’s not about a plan of action for a specific crisis. Really, you wouldn't exactly call it a crisis if you'd prepared for it now would you. Being prepared is about having people around you who can be counted on to help. Note I say people, not person. Building your care TEAM is an essential part of effective caregiving, not just for the person needing care, but for the sanity of the primary caregiver.

Primary Caregivers (PC’s) take on many duties they never think about. Usually, far more than they should to maintain a healthy life balance, but that topic will be covered later. If you or a loved one are a PC, then take time to sit down and write down all the tasks accomplished in a day or two. Be detailed.

Then ask the tough question: What if I/she/he can’t do them.

(For the rest of this thought, let’s assume you’re the PC)

Can’t? What can’t I do? If c-a-n-t seems like a four-letter-word that does not exist in your vocabulary, read this carefully. We know you - those caregivers who refuse to acknowledge their human bodies that get sick or for various reasons become unable to be in charge of absolutely everything. You’re overstressed and running on empty already. How do I know? I was one of them. The majority of take-charge caregivers get that way because they have had to at one point or another - as a survival skill. Perhaps it was an emergency situation where no one else could or did step up to pull things together and now everyone looks to you for the answers.

Breaking down the daily tasks of your caregiving role will help a you realize how much you are doing, and shed light on certain tasks that can be handed over to others and when a hand off might be the winning play of the game.

Could laundry duty be handled by someone else? Maybe Mom or Dad is in assisted living but you insist on taking the laundry home to do rather than use the laundry service offered? If the service really won’t work, who else could do that laundry? That person just might be the one to go grab clothes to bring to the hospital for Mom so you don’t have to leave her side to do it. Or, the cousin who takes over laundry duty might not spend the night in the emergency room, but by having her involved more, you feel better about calling her to take your kids to school when you’ve had to.

Tax time is looming and the statements are coming in. Do you handle all the mail? Could the bill paying and sorting through tax documents be passed on to someone else who is great with numbers? They might find valuable deductions or see estate planning issues you’re too tired to look for.

Transportation - do you have to handle it all? Go through the list of physicians or regular shopping and see if any are the kind someone else can manage. Perhaps it’s the annual trip for teeth cleaning or a few grocery runs. Having someone else who knows how to get Mom or Dad in and out of a car easily will help ease your mind if they have to be asked to manage other trips because you have to schedule an appointment for yourself on grocery day or if you need to stay home with a sick child.

Be aware that you may be holding on too tightly to the enormous task list you face each day. Sometimes it’s out of fear of the failure and sometimes a fear of success - someone else's. It can be hard to hear that someone else can do what you’ve been doing out of love. Remember you’re still an MVP (most valuable player) who keeps it all together. But letting others run a few passes in the game now and then will let you be stronger when you have to take on the next big play.

Take time to build your WHO list - this week!

New Year, New You

2012-01-03T10:41:00.002-05:00

I was recently asked to write an article for the new issue of All About Seniors which is an incredible resource for services catering to the needs of seniors and caregivers, put out by Striped Rock Publications. I share the piece with you here and will be fleshing out its five main points in upcoming posts. There are so many ways to make this year a positive one, even if you're a harried caregiver wondering how you can possibly make it through another year of the long road you've been traveling. My hope is that by sharing a new perspective for the new year, you will find a.....

New Year, New You

Opening the pages of a new calendar gives people a moment to pause and take stock of how they are filling those empty spaces. For many, they’ve just closed a calendar filled with unexpected happenings. For seniors and caregivers, those are often health issues that took up much more time as well as emotional and physical energy than they ever wished to make room for. Sometimes we don’t have choices as to the challenges we face. But the good news is that we do have choices with how we face them. Here are a few ways that seniors and caregivers can designate space on their calendars and in their busy lives for taking proactive steps for making those unexpected challenges more manageable in this, a new year.

Who is your go-to person for help and support in a crisis? If you have a crisis plan, then you’re prepared and worry about uncertainties will not weigh down your outlook. For seniors, perhaps it’s time to get the children involved a little more. For adult caregivers of aging parents, perhaps it’s time to check in with the siblings or friends to get everyone on the same page for where things stand now.

What are you learning? Have you or your loved one faced a health challenge by pretending it doesn’t exist? We all know someone who has. How are you educating yourself about your needs? The fast pace of medical advances challenges us, the consumers of medical care, to educate ourselves. Learn about your condition and ask that doctor questions. No matter what stage of life you are in, the better you understand your own body, the better you and your doctor can create a winning team to avert medical crises and maintain good health.

When are you taking time for yourself? Everyone needs something of their own. Whether it’s getting your nails done once a month, taking an art class, or planning time when no one else is making demands on you, schedule ‘me’ time, now. If you can’t work in a large garden any more, plant a flower box. Find options for activities you enjoy that you can do. For seniors, it’s understandable to mourn the things your body may not let you do anymore, but take charge by finding new interests or building on old interests in ways you can still connect with them.

Where are you gaining support? Build a community for support and encouragement as your life flows through the year. For some, this centers on church or religious connections. Others look to senior activity centers. Some are part of the growing online support groups. Plan time for building those networks, and if you don’t have one yet, find one and schedule time for nurturing the connection.

Why and How are you doing the things you do? Check your motivation for how you approach people and activities in your life. Are you doing them because you want to or because you have to? Can you turn your perspective around a bit and find ways to make things you have to do, things you want to do? Adopting a more positive way of approaching your life will make the whole year seem brighter and more manageable despite the challenges that may come. Try writing a theme for each month and focusing on that as you approach your daily activities. Consider how you might use the themes of love, adventure, kindness, creativity and gratitude to guide you through the months ahead.

When looking at your new calendar, the key word is ‘new.’ Give yourself a break. Don’t be so hard on yourself this year. We all wish we could do more. Personally, God’s never delivered me the 28-hour day I’ve requested for years and He hasn’t let me turn back time to all me to fix things I wish I’d done differently. But we all have now. Make the most of it. Let the hurts and frustrations of the past stay there and use what you’ve learned to set a new tone for this year.

Caregiver Considerations for the Holidays: Part 2 - Gifts for Seniors

2011-12-21T12:40:00.000-05:00

Finding gifts for seniors is hard. I've always been amazed by the way many seniors have simplified their lives, many without realizing they're doing it. In part it comes from the comfort of falling into daily living routines. Developing routines is often a luxury caregivers, specially those with children, rarely have so it can be a difficult concept for some to grasp. Seniors also have a way of simplifying the things around them. Even the 'pack rat' types tend to use the same tools for daily living, whether they enjoy being surrounded by the 'stuff' of their past, or not. So they don't 'need' or 'want' another kitchen or gardening tool, and some are frankly so picky, they won't wear the new slippers you buy them because they aren't just like the worn out comfy ones they wear now. The 'new isn't always better' mindset often challenges those purchasing gifts for their beloved seniors. For many seniors, novelty items like IPads and cell phones truly don't have the joy that a new pair of socks do. It's hard for those of us managing with our younger 'gadget' generation to imagine. It's also hard when we ourselves still like modern surprises to appreciate the simplicity of new socks in the favorite brand we've always worn. So what do you give your beloved senior? Here are a few ideas:

Spend time thinking about your loved one's lifestyle:

Some are loathe to admit that finances are tight. Some are up front about it. In either case, you can identify ways to meet the needs of daily living if you're willing to look for them. There's where you can help by gifting to meet needs but in a way that maintains dignity.

Does Dad complain about the price of his favorite snacks? Make him a basket of his favorite goodies. Put it in a small laundry basket he can carry when you notice he has trouble managing the large one.

Does Gran avoid going shopping with you when she used to love to pick out clothes? It may be that she doesn't have the money or mobility she used to, or both. Give her a gift card for the store along with a handmade coupon for the ride to get there. You've met needs (for financial and mobility support) while letting her maintain her dignity.

Does Mom often 'run out' of necessary household items then have to scramble for change to reimburse you when you pick them up (or not offer to do so at all?). Then a gift card to a store is a good thing and think of throwing in the gas money and time to get her there.

Who doesn't bemoan the cost of gas? It may not seem like a 'real' gift, but a gasoline card can give your beloved senior the freedom to go somewhere he or she has wanted to go.

Gift certificates for movies, art classes, or ticket to a theatre show in town may give your loved one the luxury of entertainment they've not considered for themselves because they aren't part of their daily living routine. Such gifts can give them a refreshing change of pace.
Have you noticed that no one in the family will eat Aunt Sue's cake anymore because of the cat hairs in it? (Really, that's happened- Aunt Sue forgets that the cat sleeps on the counter and can no longer see the cat hairs!) Tell Aunt Sue you'd like to give her the gift of doing some baking for her this year. Set a time where you come to her house and she provides the ingredients. You clean up the kitchen and cat hairs while baking with her. The time together as well as the pride she has by bringing that cake to the family gathering (or garden club meeting) is a gift (for all!). Make a cute gift certificate for it - box it and wrap it!

Is cleaning the house a chore? Surprise mom with a gift certificate for a carpet cleaning, or your own coupon book for chores that are likely easy for you to do but most difficult for her. Consider coupons for: cleaning out the fridge, organizing cupboards, dusting the ceiling fans, replacing light bulbs, and attic organizing days. For your own sanity but a fun but important note across the bottom: this coupon is valid only with 1 week's notice of redemption.

Does Mom forget important dates? Don't just give her a calendar, put the important family dates in it for her!

For caregivers, giving the gift of time off-duty is priceless and becomes a two way gift. The giver and recipient both benefit. One woman, caring for an ailing husband, had health challenges herself. The woman's son brought her Christmas decorations out of the attic, but did not offer time to put them up. The friend, who'd wanted to find a way to help, offered to come put up the tree and 'watch' the husband, while her caregiving friend ran some needed errands. Though not wrapped in a box with a bow, this was definitely a gift. Offering caregiving friends respite coupons for a couple of hours at time is priceless.

When it comes to giving gifts to seniors, it's not about the gadgets, the cost, or even the novelty of thought. Being aware enough of their world and its needs is gift in itself. And if all else fails... try the socks.

Best wishes to all for very Merry Christmas and Happy New Year!

Caregiver Considerations for the Holidays - Part 1

2011-11-18T12:37:00.000-05:00

Connecting with Seniors during the Holidays

Before you head into the express lane for holiday planning, take time to consider the concepts of re-wrapping and re-gifting as ways to connect with special seniors in your life.

Re-wrap your priorities to include the seniors in your life. They can miss the joy of the season by not engaging in the hustle and bustle their bodies seem less equipped to handle than in years gone by.

Family members and friends, traveling in the fast lane of the holiday hustle, often leave seniors behind during this season.Family gatherings can feel strained or obligatory for all, leaving the heart out of the events that are shared.

Food, faith and fun are key concepts when reorganizing how you plan for your holiday season to include your seniors. A major key is thinking and planning head to make it work.

Make an appointment for your senior to come over for a cookie baking day. Many families already have 'baking days' but in the hustle and bustle they can leave grandma, grandpa, an aging aunt or neighbor out of the recipe. Set up the cooking area to make accommodations if needed. Move the cookie dough rolling into another room if Gramp’s wheelchair can roll there more easily. Add a pillow to the stool in the kitchen so Aunt Sue can help with sprinkles. The stories that will flow over the icing are sure to add flavor to every cookie, and the day.

Before planning that big holiday meal, share the stories of how the food traditions and favorite recipes traveled down the family tree. Call up the relatives from a distance or plan an interview time for relatives nearby. Let children help make recipe cards to share with family members. Setting time aside for children to start a recipe books with Grammi’s special holiday treats in mind will create a legacy they in turn will gift to their children. Grandma might not be able to do the baking anymore, but will enjoy tasting the treats her grandchildren made from her recipes!

Just as you might have to dig for recipes, seek the deeper meaning of how your aging loved ones connect with the season that centers upon faith. Use family discussions, phone calls and special outings to enjoy the spiritual connection to the time of year - far away from shopping malls. Plan ahead to attend specific services that hold meaning for your aging loved ones, whether they are held at your own church or not. This provides a source for connecting with the past while planting memories for the younger generations where the focus isn’t on presents.

Plan a day where you ask an aging loved one (even the in-laws) what his or her childhood traditions were for celebrating the spirit of the holidays. Re-establish or re-live those traditions. In today’s traveling society, we often miss the connections to our faith roots. Plan a trip to visit the church that Grandma attended as a child and let her tell you and your family how holiday celebrations were held there. A trip down memory lane can be an incredible gift to a senior.

By making an effort to plan time with the special seniors in your life into your holiday schedule, you’re participating in generational re-gifting and seasonal fun. Whether memories shared over cookie dough cut-outs, the stories told on a family outing, or the flavor of the recipes handed down through the generations, these no-cost gifts, shared between the generations keep giving.

Author's note: I'm interrupting the Hot Topics series to give you some thoughts for the fast approaching holiday season ... Hot Topics in Care and the Community Initiatives series will return though!

ACTION NOTE: Caregivers, the enrollment/change period for Medicare coverage deadline is December 7th. Take time to review your loved one's coverage and benefits to see if they match their current and future benefit needs. Make sure you review all parts of the coverage to ensure the best hospitalization, general medical, and prescription coverage!

Hot Topics in Caregiving 3: Community Care Initiatives - Faith Community Nursing

2011-10-26T11:31:00.002-04:00

Most caregivers are thrown into the heat of the caregiving fire by an emergency situation and have little time to look for what resources are available. Take time to look ahead and see if any of the community care initiatives, reviewed in the next few posts, are available in your community and how you can access their benefits.

Faith Community Nursing (FCN): This concept has been, and still is, known by many names: Congregational Nursing and Parish Nursing and Church Nursing are just a few. But in 2005, the American Nurses Association changed to this standard term to better reference the non-denominational nature of the concept.

The practice of FCN focuses on the protection and promotion of health, prevention of illness, injury and disease, and alleviation of suffering within the values, beliefs and practices of a faith community.

The FCN definition above means there is no set “picture” of any FCN program, which is actually a great thing. It means that programs can be tailored to each community; and they are.

A faith community is a group of individuals brought together by shared beliefs.They are similar to a family and come to know needs within the group. A faith community becomes a starting place to offer help to those in need. FCN programs are non-denominational and don’t always have ties to a specific faith group, yet may be housed in a church, synagog, or temple, offering space for the ministry.They are programs that intentionally minister to both the health and spirit of an individual, while being nondenominational.

There is an interesting relationship that has developed between faith communities and medical practitioners. I’ll illustrate this by giving you a brief picture of FCN in my own community.

One of the two main hospital systems in our community realized that by having a link into the faith communities, they could help promote wellness, reduce unnecessary emergency visits (often by un or underinsured patients) and in turn, reduce costs, help the community, and let the community know how they can offer other services. Taking education and wellness initiatives door-to-door wasn’t where to start. But find a group of people already working together who know one another’s needs and you have a place to build a point of service within a community. Building service then builds reputation and then when medical services are needed, where do the patients go? In its simplest form, from this top (hospital system) down (to community) approach, it can be a marketing tool. But read on - it’s much more. What I’ve learned about the leaders in any FCN program is that they are CONNECTORS, linking people in need with services, becoming a hub for information flow. They are embedded in the community and know what’s available, and even more importantly, know how to access those services. It works in other ways too, as doctors will refer patients to the FCN programs to help them find additional support for their ongoing care needs.

Caregiver check: Call your local hospital to find out if they are connected with a faith community nursing program and ask what services are provided.

There are many FCN programs that do not have a connection to any particular hospital too. Community leaders will start programs or partnerships to unite care providers in different specialty areas to reach out to faith communities and facilitate wellness. There are many interfaith initiatives that use faith networks as a way to get information to community members about services available to them, whether free blood pressure checks, mammograms, or other preventive services.

Programs also start within individual faith communities when members of that community identify a need and seek resources for filling it. It may be diabetes prevention, blood pressure checks, or other forms of health screening. They then look to the larger community and its resources to fill the need. For example, if a church leader has been ministering to a number of congregation members who are suffering with uncontrolled diabetes, he or she may seek resources within the community to help address the issue at that church, not just for that individual.

Caregiver check: Call the church local to your caree, even if he or she is not a member, ask if they have any health ministries, what they are, and how you can plug into those services. If they don’t, ask if there are any that do. Don’t let a lack of connection to a place of worship hold you back. Church communities do welcome the chance to minister to others as an outreach.

Meals on Wheels, a nation-wide nutrition outreach program, finds its community home in many churches and reaches from there into the community regardless of any denominational or faith belief (or non-belief) of its meal recipients. Such is the same with faith community nurses. They realize that a faith community is a place to start in offering health and wellness services to others. In my community, the Mobile Meals program actually started a nursing ministry, hiring nurses to provide support to meal recipients. They are in turn, supported by the FCN leaders. In this case, the Mobile Meals nursing ministry has provided community case management services for 2,000 daily meal recipients.Though not all Mobile Meals programs do this, it's certainly a best-practice that is making a huge impact on many lives and one possible because of the FCN program.

Caregiver check: If your caree is receiving meals, ask the delivery person or agency if there are any other services that can be accessed in the community through their service.

Whether it is one volunteer in a specific church, a team of nurses offering services in many faith communities, or a hospital led program that has dedicated staff to filling healthcare needs within a community, all the models work to make a difference. They’re not going to replace a doctor or become your personal home health aide during a medical crisis. But they will connect you to services in your community.

So we know that FCN programs can look different, but what do they do? Let’s look at some scenarios:

In one case, a woman’s husband was dying and she needed respite care. Through the FCN program, volunteers in a local church willing to help were identified and trained through the FCN program. The volunteers then took the lead on scheduling visits to the home to sit and visit with her husband so that she could have a couple hours break time a few days a week. All were volunteers, yet it was the FCN coordinator who knew where to start calling to get the woman’s need filled.
A church member became concerned about the possible spread of flu with so many people gathering for worship during the height of a terrible flu season when vaccines were limited. The FCN program was able to get her educational materials about prevention techniques that could be shared throughout the church.
The Universal Medication Form (UMF) became available and used as a tool for reducing the number of errors in medication usage by individuals that was causing avoidable emergency room visits. FCN nurses worked within 100 different faith communities in their county to distribute the forms and teach people how to use them.
The FCN coordinators trained community volunteers willing to teach a teen pregnancy prevention program within faith communities.

Looking for Faith Community Nursing programs may be an answer to quickly connecting to resources within your community, and especially for long distance caregivers, may be the most efficient way to determine what is available when a loved one needs care.

The International Parish Nurse Resource Center offers a worldwide LIST (by State) of program coordinators.

Many thanks to Georgia Lanford and Jenny Holmes, leaders of the Spartanburg Regional Congregational Nursing program for providing me a wealth of information that I in turn have shared with you.

Hot Topics in Caregiving 3: Filling The Donut Hole

2011-10-06T11:58:00.000-04:00

Simply glazed, iced, or with sprinkles… donuts have holes. Education may help you keep from falling into a very sticky and expensive one or help you climb out of it sooner.

One hot topic for both caregivers and seniors is the Medicare Prescription Coverage “Donut” Hole. The simplest explanation is that this is the point at which coverage from Medicare part D supplement stops paying for prescription costs after a certain limit is reached and then the point at which it starts to cover them again. According to multiple sources, the amount not covered can be about $1400. Some patients never reach the hole. Others discover they’ve fallen into it when they go to pick up their medications from the pharmacy receiving a bitter pill to swallow. But it’s no joking matter. This can be a life threatening issue when seniors have to decide whether to pay their rent, buy groceries, or stay on preventative meds they can’t afford if they plan to eat. About.com offers a general overview of the issue in a June 30^th ARTICLE.

The bottom line is self-education and self-awareness. Sometimes it’s the caregiver that must be the one to step in and increase awareness in order to help prevent problems. If you’ve never asked your caree about his or her insurance coverage and limits, now’s the time. If you’re a caregiver who is not involved in the financial issues of your caree, then at least make the recommendation that all insurance coverage issues be reviewed with the goal of preventing unexpected bills.

Start with a copy of the insurance policy. Find out what’s covered, what’s not, and when there are any holes in coverage. If you don’t know the coverage benefits and limits, you or your caree can request that a copy of the policy (if one can’t be found) be sent to you so that you have the facts. Find out if the policy runs on the calendar year Jan-Dec, or some other term. If there is more than one insurance policy, find out where the coverage overlaps, and which company is responsible for the bill first. Check to see how this affects prescription coverage too. If two policies renew at different times then paying deductibles becomes confusing. Sort through these issues before you end up with an unexpected bill.

Next, review your (or your caree’s) medications. Find out what the policy you have does and doesn’t cover. How much do those meds cost monthly? Can generics be substituted to reduce cost? Do the drug companies offer discounts, coupons, or other support for patients with financial need? If so, what is the process for proving need.

Next look at an EOB: Explanation of Benefits. They come in the mail from insurance companies and they let you know where you stand. Compare your numbers to theirs and keep records. Keep receipts of what is spent both at the doctor’s office and the pharmacy in copays and deductibles. Find out what the dollar amounts are for the limits of coverage and when any gap is likely to occur. Some policies have higher premiums which reduce the size of the donut hole, but it’s often still there. Will you reach the hole before your coverage year renews? If so, can you put aside some money now to cover the gap?

A few things to consider:

Even if you review your current medications and feel you’re unlikely to hit the gap, consider the costs of medications that may be needed should a hospitalization occur - are you prepared?

It takes time to prove financial need when asking for aid from a drug company. The sooner you know what your need level is and what documentation is needed, the sooner you can get help.

Talk to your doctor about the issue. A standard medication for preventing certain health conditions may have alternatives. Don’t expect your doctor to anticipate your financial needs. He or she is there to treat you medically. Although some may ask about your coverage and be sensitive to the issue of medication cost, it’s not likely to be foremost on a doctor’s mind when writing your prescriptions.

Caregiver’s Golden Nugget 1: While you’re reviewing insurance coverage issues for your caree, look over yours. Whether or not you qualify for Medicare yet yourself, it’s important to understand your own insurance issues and what kind of coverage you'll need when you have those decisions to make.

Golden Nugget 2: While the terminology for deductibles, limits, and non-covered items are fresh in your mind, apply that knowledge to a review of all your policies - homeowners, renters, vehicle and long term care.

Hot Topics in Caregiving 2: Case Management

2011-09-22T14:02:00.000-04:00

Having served as a volunteer and untrained case manager for my parents’ health issues for many years, I learned much being thrown into the fire of the complexities of modern medicine. Most caregivers do end up in the management role, often with great frustration, but there is more help available for that role than many realize.

Professionals trained in case management can be hired to pull all the resources available together, making the most of the medical community you or your loved one can access.The catch is that most are not covered by insurance.That happened to be one of my soapbox issues offered to the recent meeting with Hallie Hurst who feeds such issues back to Washington.

Using resources efficiently should be of interest to all - and worth the investment. I have no doubt the savings of streamlining resources would more than cover the cost and thus should be included in Medicare and other insurance benefits, saving all money and time. Hopefully, this will happen, but in the meantime, such services should not be immediately discounted due to cost. Some medical practices have even started absorbing the cost of having an on-staff case manager to help their patients, so be sure to ask your doctor if s/he offers that assistance.

Geriatric Case Managers may offer a free consultation if you are considering using their services.The majority of GCMs, often certified in their field, do not have access to billing options that insurance might cover.

Whether or not there is an insurance company to be billed, it is wise to at least look into such a service. The National Association of Geriatric Case Managers helps link provides to clients. A recent ARTICLE by Reuters News agency highlights times when case management can be helpful. Consider the fact that geriatric case managers work with many clients and are local.That means that the longer they are in business and the more professional affiliations they have, the more resources they know about and can access for you.hey also know the right person to call within each office and which forms need to be filled out for what service. With the wealth of programs and resources available (they ARE out there!) it helps to have someone on your side who already knows what’s available and what’s worth your time pursuing. Consider the value of the time you’d have to take off work to handle all the issues that come up while starting from ground zero and trying to catch up.

The Distance Factor

Now consider the plight of long distance caregivers. Mom and Dad live hours or states away but you want to help. Deteriorating health or sudden illness has made it clear that they need assistance, but you have a full life no where near them and have no knowledge of their community resources.If they cannot afford case management services for themselves providing it may be one way you can help.

Case managers help prevent individuals from racking up “frequent flyer” points with hospitals.Industry professionals actually used that term to describe patients that repeatedly return to the hospital, usually through the emergency department, because their care is not managed and they are not able to do it for themselves.If an outside party can intervene and organize multiple types of care to address complicated health issues, there is a reduction in avoidable hospital visits.This means savings for the medical and insurance communities, a huge stress savings for patients and families, and better overall care and well being for the patient.

A note of caution: Realize that pricing for Geriatric Case Management services vary greatly by location and the types of services offered/needed.Try not to discount the idea by hearing of a base rate of $80 or more per hour, which you’ll find if you do a generic online search. Dig for what you can find in your (parents’) community and ask if they offer a free initial consultation. At the very least, you find a service you don’t need now, but might need in the future.You’ve done the legwork ahead of time and can prepare! At the most, you’ve found the answer for ensuring your loved one’s quality of life despite medical conditions you can’t cure.

Hot Topics in Caregiving 1: The Cost of Futile Care

2011-09-09T17:17:00.000-04:00

This week I attended a focus group meeting led by Hallie Hurst, field representative from Congressman Trey Gowdy’s office. Those of us in attendance each shared our insight from our various professional perspectives regarding senior care issues.The goal was to make sure that the concerns of the group were passed on to Washington - a wonderful opportunity! Over the next several posts I’ll get into those hot topics of care with you. Some we’ve touched on before, but now have a new light shed on them; others are new.

Today’s topic: Futile Care - It’s a term caregivers don’t want to hear, but it is an accepted term within the medical community. It refers to looking at the “big picture” and death, challenging areas for caregivers.

Nancy Dereng, who works with Community Outreach for Interim HealthCare, who has long been an advocate for Advance Directives (ADs), mentioned the high cost of futile care in medicine. The reference was that if more education is done regarding ADs and what the actual dying process involves, the more people would make choices that don’t involve trying every last medical technique or procedure at a time when they simply won’t make a difference in the big picture of the outcome for the patient. The cost is high for hospitals, insurance companies, as well as Medicare and Medicaid programs, not to mention patients and their families. But what also struck me was the great emotional cost attached to futile care. Nancy's seen it first hand, and works hard to educate people of all ages about options that make a difference.

Are you tying your doctor's hands?

Nancy later shared with me the two main reasons that futile care happens. One is the threat and fear of lawsuits. It’s hard, she explained, for a doctor to say “there’s nothing more we can do.” That's emotionally hard to say and to hear, but in this day and time, there are things that can be done, whether or not the reality indicates they’ll made a difference. The availability of options is the second reason.

A point for patients and caregivers to consider is this: do you want to tie your doctor’s hands and force them to continue aggressive care measures by pressuring them to “just do something” when it’s your emotions that are talking and not a realistic view of the long term impact? If you say “do something” many physicians feel obligated to try something, even if they don’t feel it will make a big enough difference on the outcome. The lifeline you want isn't there. But, they don’t want a lawsuit. Just because something can be done doesn’t always mean it should be done. Unfortunately, the legal climate of our society doesn’t always make the differentiation between ‘can’ and ‘should.’

For Nancy, it comes down to weighing the benefits with the burdens of care. That's the discussion point. If a frightened caregiver or patient feels there could be a benefit to trying one more procedure, they often don’t consider, don’t ask, or don’t want to know, what the burden may be.

ADs take away some of the guess work and in many cases, futility. Understanding when a feeding tube is a real help, or simply a way to prolong the inevitable (with potentially more trauma to the patient), is important. All adults, whether they are seniors, caregivers, or not (yet), need to look at ADs. My favorite program for working through is process is called Five Wishes. Talk with your loved ones BEFORE they ever become an issue of decision making in a medical care situation.

Caregivers need to look at how they approach physicians as well. If you bring rope with you to tie their hands, you may well be making the situation harder for yourself, your family, and your loved one. Instead, give your doctor permission to discuss the burdens of care options when he or she may not feel 'safe' to do so. Ask what they are. Ask what the doctor sees as the big picture and long term prognosis. If you foresee a time when your emotions may get in the way, consider talking with the doctor, with your caree present, before it factors into decision making.

I have been there. It isn’t easy. During one hospitalization for my father, I told the doctors I was concerned that the time might be coming when we’d need to say ‘enough is enough’ and look toward comfort rather than curative care. I asked them for honesty when that time came, and, if needed, a reminder I’d asked for that. One doctor appreciated it, saying he wished more caregivers would tell him that. Another said he understood, assuring me that he did not feel that time had come yet. A third, looked at me blankly and said, ‘okay.’ Dad’s ‘time’ didn’t come then, but did a few weeks later after yet another hospital stay. He was discharged to come home with hospice care. We all knew the decisions that were made were for my father’s best interest and so did Dad. We'd had the talks. Could the doctors have tried one more surgery? Perhaps. If they had though, it would have been an example of futile care involving a surgery that would have come not just with a cost in dollars to his insurance companies, but a much heavier cost to him, for the physical and emotional trauma of 'trying one more thing' and for his loved ones watching.

Caregiver Golden Nugget: While you deal with these issues with those you care for, deal with them now for those who care for you. When you ask Mom or Dad what they want for end-of-life care, turn right around and let your spouse, your kids, and your best friend know what you want.

Closed Doors: Important Opportunities for Caregivers

2011-09-02T09:50:00.000-04:00

One closed door.....

In the example I gave last week, a woman used a window of opportunity to access care for her husband after he’d come home from a hospitalization and she realized she could not care for him in that environment. Even after being home for nearly two weeks, he still qualified for rehabilitative care based on the recent hospitalization and related diagnoses. Let’s look at what can happen next.

Because his underlying diagnoses are degenerative conditions, there is only so much that rehabilitation can do. Improvements might be made. Can he come home again? Perhaps. But what if he can’t? Many people find themselves in this precarious caregiver situation questioning what to do next when the rehab of their loved one gives them a window of opportunity to reassess the care environment and long term picture.

For the vast majority, the desire to ‘go home’ is what drives success in a rehabilitative setting. That’s a good thing. But what happens when the caregiver, perhaps a spouse or adult child(ren) realize that coming home won’t be the best option even if gains are made during rehab? Let’s face it - that’s often a heartbreaking decision to be made. When the reality finally hits that home care is not the best care option, it can feel as if a door is closed. Many caregivers feel they have failed. Then factor in the added guilt-inducing factor when the caregiver knows that care elsewhere will make his or her job easier. Ouch. Did I just admit that? How could I say such a thing? Have you heard those words in your head? If you’re in this situation stop beating yourself up. That closed door will open new ones.

Dealing with the disappointment that it can’t be at home is one thing. Blaming yourself for reality is another. Realize that when the door closed on home care, you have an opening for another way to provide care. Your job, whether taken out of love or a sense of duty, hasn’t stopped. The value of what you have to offer hasn’t lessened, in fact, it’s increased. The only thing that has changed is the environment in which you offer care - the picture looks different; but the need for what you have to offer hasn’t.

Now your work is to find the best care environment away from home. Only you, the experienced caregiver can do that. You are quite likely the only one to know all the nuances of care for your loved one and be able to find the best way to fit those into a facility care environment. Perhaps your caree loves music and the new environment must be one where music can be played, where CD players are allowed, and the singing of hymns is encouraged. Perhaps you need to find someplace that allows patient/residents to play a community piano. Perhaps you can find a place close to home, or more central to other family members wishing to visit. Does she need an environment that offers social activities? Or a weekly church service?

Opens new ones....

Does it matter that you’ll finally get rest that’s probably long overdue? Yes! This is a chance for you to recover (and quite possibly from offering in-home care for too long). As your loved one strengthens in rehab, and perhaps a long term care facility, you need this time of restoration. Reconnect with the things of your life that have been put on hold. When you, the caregiver, have a chance to build up your strength, the quality of the care you have to offer, no matter where it is given, improves.You'll find new energy and strength you can use when giving care in a new setting.

Windows: A Caregiver's Salvation

2011-08-24T10:39:00.000-04:00

Windows can bring fresh air into difficult care issues

I recently learned of a woman caring for her husband who brought him home after a hospitalization only to discover that his care needs were more than she could manage. The concept of “rehab” care had not been discussed by the hospital doctor or by any discharge planner. Since the wife had already been caring for her husband at home and the issue that brought him to the hospital was resolved, he was cleared to go home.Yet like most people who leave the hospital, he wasn't as strong as when he went in. That was complicated by the fact that his overall health issues were degenerative.

However, it soon became evident that his care needs were more than she could provide. She was among the fortunate who already had a relationship with a social worker who had been involved with her husband’s care. The social worker was able to tell her that there was a ‘window’ option she could consider. There is a certain amount of time after a hospitalization where a patient can be eligible for rehabilitative care. It’s a window of time. At first, she was told it may be 14 days, but the social worker would confirm. Later she was told it was 30 days. When the caregiver heard of the 14 day time limit, the she knew she had to move quickly. She had the help of the social worker who knew how to start the process for qualification quickly. It was handled through Medicare and he was placed within a few days.

There are a few different caregiver nuggets to glean from this example.

First, involve others in your caregiving team. Caregivers should not go through their duties alone. Whether you’re dealing with private insurance, Medicare, or VA health benefits, determine what kind of social work services you can access - and use them. It may be that the benefit falls under counseling or mental health benefits. If so, don’t let that ‘label’ for ‘mental health’ stop you. Even if there is a co-pay for such a benefit, again, try to work out using it. It may be that it’s “Dad’s” appointment, but you go with him and get the information too, or share part of the session.

Make sure the social worker is one that deals with your specific area of need and is not just seeing every kind of patient. Granted, they’re trained, but some specialize in geriatric issues. Many “geriatric case managers” are licensed social workers. Getting insurance to pay for their services as “geriatric case managers” might not work, but, applying for payment or authorization of services based on social work/counseling may. This is when a little time and work on the front end of a situation pays off with lots of time saved later on.

The next nugget is to look for windows. Many people assume that once discharged, a patient cannot receive services or referrals from the hospital. Whenever you leave a hospital setting, make sure to get the discharge planner’s card. This is the person who comes in to see if you need home health or any other services. You may only see this person once, but learn to recognize this role. If problems arise after a hospital stay, call that person. Let them know that home care is not working and ask if they can help you find other options for care or secure more services. It might not be a rehab placement, but it might be the addition of home health services to help with bathing when your loved one has trouble with that and you can’t do it yourself until he or she gets stronger.

Windows are helpful. Caregivers don’t know all the windows they can open to get fresh air into a stressful situation. By involving others in a care team, not only can they educate you about the windows available to you, they can help you opened them.

Golden Nugget for Caregiver: When your caree is in the hospital, ask the staff to run a TB (Tuberculosis test) upon admission. The results of a TB test are required before a patient can be placed in any kind of skilled care facility and they take 2 days to get results. Even if you don’t anticipate a rehab stay, as the situation above illustrates, you need to be prepared. If you leave the hospital before the test results come in, plan to go back to the records department (with healthcare POA in hand) and ask for a copy of the results. The results of the test are only considered valid for 30 days. Whether you think you need them or not, getting them may save you time when you need it the most.

Financial Abuse of the Elderly - Part 5 - Final Notes

2011-08-12T16:15:00.004-04:00

Is it time for help?

Delving into financial exploitation of the elderly has been a challenge. I’ve heard and read story after story of terrible cases where seniors who deserve comfort and security have had it ripped away from them by family members and strangers. It is a serious problem. As a final note in addressing this issue, I want to take a step back and remind you that the open door for such often comes when a senior can no longer keep up with their own finances. Do they want to admit they’re having trouble balancing a checkbook? Quite likely, no. Financial independence is something is something they’ve held as a measure of pride for the majority of their lives. If it’s your parents, they don’t want you to know they’re having trouble. It’s not easy to admit that you need help at any age, let alone break down the leadership roles you’ve held for most of your life.

Indicators That It May Be Time for Help

Past-Due Bills are piling up or Mom says people are calling to tell her to pay a bill she thought she’d already paid.
Mom or Dad keeps claiming to not have enough money. Sometimes they are fine but saying such is an indicator they aren’t feeling as secure as they once were.
Financial patterns change: is Dad giving more or less in the way of financial gifts?
The solicitations for donations are out of control. This may mean Dad’s been sending out a lot of donations meaning more will come as his name is shared on mail lists.
Mail order boxes are regularly appearing. Some seniors don’t need to shop ‘til they drop but take comfort in TV/Catalog ordering. Feeling they can buy things can nurture a sense of independence even when then items are needed. Retail therapy affects seniors too!
A hospitalization occurs and no one is coordinating the ongoing payment of regular bills like the mortgage/rent, utilities, etc.

Family members can step in and help. The key there is maintaining respect and communication while offering help. Try not to let judgment cloud your sensitivity to a parent’s insecurity or discomfort with a need for financial help. If your family dynamics do not include someone willing, able, and trusted by all to step in to provide the help needed, consider a financial manager. These professionals are helpful when family members disagree about who should be the one to step in and help Mom with her finances after Dad dies (a common time when financial management becomes an issue). Having an ‘outside’ party responsible may ease tensions between siblings/parents who cannot find peace with handing it within the family circle.

The cost of financial management services will vary depending upon what intervention is needed, whether it’s the management of an investment portfolio or balancing a checkbook when the only deposits come from Social Security. Take some time to compare your fear of the expense to the fear of what could happen if even limited resources aren’t managed effectively.

Tips when looking for an elder financial manager:

Research availability, services, fees
Ask for references and follow up by contacting them
Review your preferences for monthly reports
Determine if tax issues need to be addressed by a different professional
Assess the limits of the service provider (some may not be certified to a level to provide investment advice, but can still help with some of your needs and put things in order so that you can take the right information to an investment adviser)

I’ve recently had the pleasure of meeting Amy Carrick of CARRICK CONSULTING. She offered a glimpse at the complexity of many senior financial issues as well as some simple steps for solving them. She is a Certified Senior Specialist and a Dementia Specialist. She recently did a radio interview (listen to it by clicking on the link on her "About" page). The interview focused on scams targeting seniors. She’s also dealt with a wide range of financial management issues for seniors and the disabled. Though she said it’s an extreme case, one client actually brought her boxes filled with six years’ worth of mail that had build up for an aging adult unable to manage sorting his own mail. Not knowing might be necessary information for getting man’s affairs in order, she had to go through it all. But with her eye for detail and knowledge of what was important, she managed the task and helped her client.

Caregiver Golden Nugget: When you find there’s an issue of care that you’re not comfortable dealing with, give yourself a pat on the back instead of a guilt trip. Many caregivers beat themselves up if they can’t handle all the issues that come up. But realizing your limits is a gift to all. It’s there that you can take action and make a positive difference. If you’re just not a numbers person and don’t feel comfortable helping Mom manage her finances, Bravo for realizing it! Now you can do something: find the right person who can.

Financial Abuse of the Elderly - Part 4 - The Legacy Lottery

2011-08-05T08:42:00.000-04:00


Scammers prey on those wishing to leave a cash legacy

Many times letters and calls come in saying a senior has won or can win a significant amount of money. Remember the old adage “if it sounds too good to be true, it probably is.”The window for scammers comes from the deep desire seniors have to either secure their future or leave a legacy to their loved ones. Often their worries or desire to feel valuable by being generous with others will lead a senior down a path they might not otherwise follow. Insecurity can wreak havoc with judgment. If a person does fall victim to a scam or thinks they may have made a poor choice, embarrassment often keeps them talking about the issue and getting help if lured into a trap.Consider the following:

Scam 1 - A ‘winning’ letter or phone call comes in from a person claiming to be ‘an agent’of the IRS, Federal Trade Commission, or businesses sounding like legitimate or government offices. A. They may be claiming there is a ‘problem’ with your account that needs to be cleared up. B. They may calling to say you won a prize but need to pay the taxes/fees first.

What to do?

If a phone call, ask for the contact person’s full name, phone number, and employee number along with their supervisor’s number. Write them down. If you can’t write it down, tell them to mail the information.

Why? If a caller is not willing to mail you the information or pressures you to take action now, it’s likely a scam. They may be trying applying pressure with a ‘limited time’ for prize redemption, followed by a fee requirement to ‘redeem’ the prize. They are looking for a credit card number so that processing can “begin immediately.” Though not all ‘prize’ calls are lotteries, remember that in legitimate lotteries, it’s the winner who makes the contact to collect their winnings. Lotteries don’t contact you. If they do, it’s likely you never entered in the first place and you’re about to be scammed for the cost of shipping or insuring your prize.

Scam 2 - Wiring to Help

Beware of anyone asking you or a loved one to wire money in order to redeem a prize or in an effort to ‘help’ another person bring their money into a US account from a foreign country. This is a common scam that targets the elderly. Seniors want to help others - it builds their feeling of self-worth. If they think they might earn a helper’s fee in the process, it feels even better. There are many email (and phone) scams offering to pay a person a portion of the money for helping with transaction. Watch out for requests to wire money for any reason or give bank account information to anyone saying they need to ‘use’ your account so they can deposit into it. A related scam involves people claiming to hold the inheritance from a 'long lost relative' and they need your account information to send the money to you.

Scam 3 - The Intelligence Game

Another scam is one that preys on a senior’s ability to feel ‘smart.’ A game of some kind comes in the mail or through email. Players ‘win’ the right to move onto the next level. Their intelligence is validated. They ‘win’ several levels and then there are fees for playing the next levels where prizes are awarded. Somehow, they never quite reach that ‘winner’s’ status though and they’ve willingly paid for the chance, often multiple times.

Caregiver’s Golden Nuggets:

The biggest thing to keep in mind here is that if you’re worried about a loved one falling victim to a scam, ask yourself ‘why?’ Do you think Mom is worried about her financial security and could be lured into such? There is the issue. Talk about long term security.

Do you think Dad’s self esteem is falling because he doesn’t feel he has a legacy? Encourage him to realize that his legacy has nothing to do with money.

Look for the reason for your concern and you have found an opportunity to strengthen your bond, help your loved one relieve insecurities and fears, and develop a positive attitude toward the future.

If you think your loved one is a ripe target for scams, take time to talk about it but tread lightly so he doesn’t try to dig in his heels and try to prove himself with an “I’ll show you I know what I’m doing,” mentality.
One gentle approach is to bring up concerns with an outside reference. “Wow Mom, I heard/read about a scam going on now. I can see how people would be taken in by it. It’s scary.”

Financial Abuse of the Elderly - Part 3 - THE DONATION DEBATE

2011-07-29T11:44:00.000-04:00

Now we’re moving from financial abuse of the elderly in the home to abuse and exploitation coming from outside sources. It will take a few posts to just get the highlights of this complex issue out, so I highly encourage you to dig deeper, especially if you feel you or a loved one is at risk.

The Donation Debate

Junk mail often brings validation to the aging

One thing that makes the elderly a more ready target for financial exploitation is that they want to be useful and helpful. Whether it’s by mail or phone, solicitations from legitimate and non-legitimate organizations claiming to need help gives a senior’s self esteem a boost. Perhaps they’ve been incapacitated and can no longer participate actively in service to others but hey, they have a little money, why not help? Some feel that giving to others financially is the only way to contribute to society and they feel a weight of responsibility to do so. Telemarkers and Scammers know this well.

Add to this the fact that many seniors have hearing and visual impairments. The small print isn’t visible and the ‘small print’disclaimers offered by phone callers are said so fast that even those without hearing problems have trouble understanding all that was said.

If you’re the caregiver and you feel that your loved one is at risk for such, talk with him/her about donation boundaries. Ask your caree to set up a limited amount for yearly donations to outside charities and keep a log of what was given and when. This can be done to track donations for end-of year deductions, and even if your senior does not itemize, this often seems a reasonable request. If multiple request for payment come in, then you’ll spot them and have the evidence to share with your loved one.

At one point, my father received multiple ‘bills’ for a donation he’d committed to over the phone. Tracking payments became difficult for him and when we realized he’d ‘paid’ his donation three times in one year, we knew something had to be done. He realized then that the organization was not as reputable as he’d thought and he stopped giving to them.

Caregivers struggle with the fact that for many seniors, the mail is sacred. For some, it’s their only link to the outside world. Mail from anyone on the ‘outside’ of their shrinking world feels like a validation of their importance. Some caregivers will try to be the ones to sort through the mail before their carees so that junk mail and unwanted solicitations for donations could be disgarded, before ever reaching the hands of their caree. But often this is impossible or a point of contention for caregivers and carees. Asking for limits and to be allowed to help can relieve tension.

Ask your caree to put all donation requests in a single pile or basket that you help him/her go through once a month. While you or s/he makes the decisions and writes the checks or has you write them, put them in the donation log.
When calls are made asking for phone donations, ask your caree to tell the caller that either 1) s/he handles all donations through church, or 2) I only give to organizations willing to mail information. If a caller don’t want to mail you a request or more information, it’s likely they just wanted to get you to give them your credit card number. Don't 'buy' that they want to save mailing costs... they're paying for people to make those phone calls!
To limit the number of solicitations coming in, make sure your loved one is on the national DO NOT CALL registry. This limits phone calls both for soliciting donations and sales. Make sure that both home and cell numbers are placed on the list. http://www.donotcall.gov/
You can also limit the amount of ‘junk’ mail and donation solicitations coming in the mail by at http://www.directmail.com/directory/mail_preference/faq.aspx to get information about how to get your name and address removed from many direct mail lists.
The Direct Marking Association also provides this information for consumers who wish to be taken off mailing lists. When you register, your name and address are placed in a "do not mail" file which is updated monthly. DMA members are required to update their lists at least quarterly, and some do it monthly. Businesses who are not members of the DMA may also take advantage of this "do not mail" list, so registering with the DMA will reduce much of your junk mail. Register online. You may also sign up online at the DMA's website. There is no fee for online registration. Visit:: https://www.dmachoice.org/dma/member/regist.action DMA says this option is quicker than by postal mail.

Register for the Mail Preference Service by mail. Send a letter plus a $1 check or money order to:

Mail Preference Service
Direct Marketing Association
PO Box 643
Carmel, NY 10512

Click here for their simple mail-in form, www.privacyrights.org/Letters/jm1a.htm.

Caregiver's Golden Nugget: These resources can work for you too and help you clear out your mail box and stop getting unwanted sales calls!

Financial Abuse of the Aging - Part 2

2011-07-22T13:41:00.000-04:00


Do hired caregivers have access?

Just after bringing up the topic of financial abuse of elders, a front page story of my local newspaper featured the arrest of a paid caregiver who had stolen thousands of dollars from her caree by writing checks and using a debit card from her caree’s account. The caregiver was hired from a very reputable company to provide in-home care while the caree was living in a senior residential community.

Last week I didn’t touch much on the hired caregivers, but focused on the home front. However, often strangers we hope to become trusted helpers become part of the home environment. When hiring caregivers from agencies or from word-of-mouth referrals, ask for references and check them out. Take the time.

The amount of employee screening varies between agencies, so when hiring a caregiver using a company, ask how they screen and check their employees. Find out what their policies are if an employee is found to be defrauding a caree and check liability. A background check done at the time employment is made doesn’t keep that person from becoming a first time offender if the right opportunity arises, so it is important to be proactive. If you are hiring privately, do your own background check.

Some family members are so relieved to find an agency to help; they feel they will ‘hurt the feelings’ of the staff by asking about such policies. Always remember that if you are hiring a caregiver, he or she is your employee. If you’re going through an agency, that agency is your employee. Remember that for agencies and private duty caregivers, this is a business. Treat it as such.

Often, in the rush to find help for in-home care after a hospitalization or other emergency, family members are just relieved to find someone to help and don’t take time to ask important questions. That’s just when the door for potential abusers is opened.

When family members live far away from their aging loved ones, having a debit or other card accessible to a caregiver may be a necessity. If so, consider the following:

Have a contract drawn up that the caregiver(s) signs acknowledging the appropriate uses for the card.
Have an expenses log that must be filled out for each purchase.
Reduce the number of bills coming into the caree’s home by having them forwarded to the person who can handle the finances.
Have bank statements sent directly to the person who will be monitoring accounts, not to the caree’s home where they can be ‘misplaced’ or ‘lost.’
Remove the need to have a debit card on hand by having a cash allowance and recording system for purchases and monitoring receipts.
Write PLEASE CHECK ID above the signature on credit or debit cards.
Plan monthly trips to help run the general shopping errands for personal items, reducing the number of trips a caregiver needs to make and fill Mom or Dad’s car up with gas so it’s ready for use. (See Nugget Below)

Just establishing these practices, even if it seems like overkill, will send a message to any potential abuser that you and your loved one are not going to be easy targets.

But isn’t this the person you are asking and trusting to care for your loved one? Yes. In the case noted above, it was the caree’s son who caught the funds missing from his mother’s accounts. Though the article didn’t say, it could be that his mother was receiving very good care for her physical and emotional well being and until the bank statement came in, there was no reason to suspect a problem. Again this reinforces the need to have someone financially trustworthy, and perhaps slightly removed from the immediate care situation, monitoring where money goes, when it goes, and for what purpose expenditures are made when the elderly are no longer able to do this for themselves.

If a new/potential hired caregiver truly has the best interests in their caree and their job, they won’t hesitate to sign contracts, review policies you establish, and be conscientious. If any potential hire, even from an agency, balks at the rules you establish, find someone else.

There are times when it works well for a caregiver to have a debit card to a caree’s account; however, it is essential that a set of checks and balances be in place to monitor the situation. As mentioned last week, not even family members will be so conscientious and consider use of debit cards and cash left in wallets as ‘payment’ for their help.

Finances in care situations should always be laid out clearly so that all parties involved are aware of expectations and boundaries.

Golden Nugget for Caregivers: Many times, hired caregivers use a caree’s car to drive him/her to doctors’ appointments or shopping. Two points to consider here. First, the car needs gas. Think of either making sure the car is filled weekly/monthly yourself, or if the caregiver is allowed to use a card fill up the car, make sure you’re following up to verify that only the one car is being filled. Point Two: Check with your loved one’s insurance company to make sure there is coverage for a new driver or that the caregiver’s insurance will cover driving another person’s vehicle. Check the insurance limits to make sure that will not be a financial disaster waiting to happen.

Financial Abuse of the Aging - Part 1

2011-07-15T09:56:00.000-04:00

Now we’ll get into the financial aspects of elder abuse which come on two fronts. First we’ll tackle home base then we’ll get into the attacks from the outside world.

We’ve all known people in our lives who are users. Whether they are also physical abusers, or not, they take advantage of situations and people around them for gain. Let’s face it - some of them are family members.

On the home front, a conscientious caregiver needs to talk to their aging loved one about finances. The sole purpose is for the caregiver to facilitate the caree’s wishes and long term security. If you’re getting involved for any other reason, please check your motivation.

Unfortunately, some family members assume they should have control over a caree’s finances for the wrong reasons. There are also friends, when there are no family members available or willing who will step in and offer to “help.” Check everyone’s motivation. If you do not feel that your parent is being wise in his or her choice, talk about it. Family issues get sticky. But here are two points of fact that can help you take personalities out of the heavy issues.

A person with a durable power of attorney can make financial claims. If that’s not someone you feel can trust to be around your wallet, make some changes.

One woman who was given durable power of attorney for her godmother called the credit card company asking to have a card issued to her on her godmother’s account. She offered to send a copy of the documents to the company. At the time, her godmother was just coming home from the hospital and was being cared for by an in-home caregiver. The goddaughter was not present but for infrequent visits, however, in love and trust, the power for delving into finances was given to her. Thankfully, the credit card company called the godmother who wisely told them no, she did not want her goddaughter to have a card. But A- the credit card company could have just accepted the goddaughter’s claim and B- the godmother might not have been well enough to have answered the call from the company and therefore accepted the goddaughter’s claim.

Checking accounts can and should have two people listed as account holders with the bank even if both names do not appear on the checks. It allows someone to pay another’s bills if that person becomes incapacitated. But remember, both people listed have authority to make withdrawls and transfers from the account. A person with a durable POA can do that too even if not listed on the account. When social security, pension, or other automatic deposits are made to an account all those who have access can get to that money.

There are plenty of cases where using/abusing adult family members prey upon the elderly.They move in or move near and ‘borrow’ often. Many offer to ‘help’ with such account setups then drain the family member dry. Others simply get the aged to turn over income checks to them in return for ‘services’ such as running errands. If you feel your aging loved one is being financially abused by another step in. Help him or her find a financial advisor, a counselor, or other outside party who can help determine the reality of the situation. This is where having a relationship with a banker who can offer advice and guide you is most helpful. It’s often that outside source who can help that person ‘see the light.’ It may mean that they learn how to tighten the reigns on accounts and access while setting up a per service amount for things that family member does for them, or they realize they need to restructure their finances to better serve their own long term financial security.

Bankers can make notes (sometimes called flags) on accounts as to who may not have access to account information and money or when there is an issue of concern.

One caregiver knew a sibling with insecure finances was coming into town to visit their father while he was ill. She was concerned that her brother would try to access the parents’ bank accounts while there. Despite thinking all was set up properly, she took the extra precaution to alert the bank of the situation so that there was no question in her mind that the brother could not make a claim.

In cases like family visits, it’s sad but true that sometimes financial documents like checks, bank account statements, and wallets (and purses) need to be put away. Tell your loved one you have concerns and ask them to find a place they are secure with in ‘hiding’ their information. There should be a ‘safe’ person who knows where it is, but protection is key. It is difficult to bring these topics to the family table of discussion. In all likelihood, your loved one probably knows (or suspects) already and your support in finding solutions to potential problems will be a relief. Get it out in the open and deal with it before a family financial user becomes an abuser.

The National Committee for the Prevention of Elder Abuse offers a great article about the financial abuse of the elderly.

An Uncomfortable Topic....Part 3

2011-07-07T12:55:00.000-04:00

Where do you call for help?

As difficult as this topic is, we have to realize that elder abuse happens. If we raise our own level of awareness and that of others, my hope is that we can help someone in need.

As the bruising example in the last post, suspicions of physical and/or sexual abuse may be complicated by underlying condition. Yet if suddenly an elderly patient is receiving medication for a sexually transmitted disease never before diagnosed, alarm bells should ring. Caregivers such as children who live at a distance from a parent who is in a care facility can monitor things such as medication changes and follow up with doctors. Some of the easiest victims of abuse (any kind) are the ones whose family members seem out of sight. But living at a distance doesn’t mean you can’t be involved and monitoring the care situation. Another sign of physical or sexual abuse may be bloody clothing or bedding. If an elderly resident’s clothing and bedding are always washed by the care facility, it is difficult to discover. It is also difficult if an abuser is a family member and the victim lives in their own home. The emotions tied to family abusers over cause the victim to protect the abuser more than himself or herself. This is where surprise visits are useful to both the local and long-distance caregiver. If family members live out of town, find someone you trust to make occasional check-ins with your loved one. A long distance caregiver can even hire a care agency to do independent evaluations of their loved ones and report back to the family members.

For the elderly in care facilities, each state offers ombudsman programs can help residents resolve suspicions or problems with care facilities. An ombudsman is an advocate for residents (and family members) to help ensure quality and “reasonableness (see last post)” of care. AARP has a great article that offers more details about the use of an ombudsman for ensuring safety of the elderly.

Unfortunately physical abuse of the elderly can happen at the hands of family members. In one instance, a drug-addicted adult child moved back ‘home’ using his elderly mother’s apartment as his crash pad. He had no problems pushing or shoving her around and kicking her out of her own bed. She didn’t feel safe. What were her options? Often the elderly feel they have none and suffer extensive abuse before it is discovered, if ever. But there are shelters across the country beginning to address the needs of the elderly in such circumstances. Abuse in the home is domestic violence - a criminal offense. The police can be called in to address domestic violence cases against the elderly. Unfortunately, the mental image that comes to most minds for domestic violence is not an 80 year old great grandmother or great grandfather and many do not report abuse fearing they will not be taken seriously.

Thankfully, the need for specialized services for elderly victims of such are beginning to be identified and resources are becoming available. AARP shines a light on the Weinberg Center for Elder Abuse Prevention located at the Hebrew Home at Riverdale in the Bronx, N.Y., the nation's first elder abuse shelter in a long-term care facility.

As wonderful as it is, we have 49 states that do not have a Hebrew Home. Thankfully other such centers are being developed. But how do you find them?

If you suspect abuses such as the ones listed above or others, contact the Adult Protective Services agency in the victim’s community which is often connected with each state’s department of health and human services.

National Committee for the Prevention of Elder Abuse

also suggests:

The Eldercare Locator (800-677-1116) directs callers to senior information and referral telephone lines in their communities.
INFOLINK (800-FYI-CALL) directs callers to the closest, most appropriate services for victims of crime, including crisis intervention, assistance with the criminal justice process, counseling, and support groups.
The National Domestic Violence Hotline (800-799-SAFE [7233]) links callers to domestic violence shelters, other emergency shelters, legal advocacy and assistance programs, and social service programs.

Next Up: Financial abuse and exploitation of the elderly.

An Uncomfortable Topic ... Part 2

2011-06-28T10:21:00.000-04:00


Abuse concerns come when least expected

Elder abuse is a complex issue to tackle. Unfortunately, it’s more common than many believe. Now I’m a firm believer that a person can find the statistics to support almost any claim and the statistics I found are quite varied and I could frankly terrify you with some. But let’s put the numbers aside - I’d rather talk about people. The fact is that elder neglect and abuse is out there and it may be affecting someone you love.

My hope is that if you’re reading this, the thought of such has been far from your mind. You’re the caregiver who has been bending over backward to try to offer the best care possible to your loved one. But if as in my last post, with "Ellen” and her mother Mary, if the thoughts are coming to mind that something is just not right, this may help.

Also, as a conscientious caregiver, you may be just the person who can help a friend to ease fears or take action with a bit more information than just suspicions shared over a cup of coffee.

In the next few posts we’ll look at some types of abuse, signs of abuse, and what can be done to stop abuse.

The World Health Organization offers this definition:

“Elder abuse has been defined as a single or repeated act, or lack of appropriate action occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person. Elder abuse can take many forms including physical, psychological and sexual abuse, financial exploitation, neglect and self-neglect,medication abuse, abandonment, scapegoating,and marginalisation of older people in institutions or social and economic policies.”

For our purposes, we’re not going to address social and economic policies. We’re going to look at what can be going in within a home or facility environment. The basic issue here starts with one of trust.

reasonable or not?

Whether care is offered in a personal home or a facility/institution, there is the assumption of trust that a certain level of care will be maintained. One issue that causes caregivers grief is “reasonableness.” It’s one of the widely defined terms that factors into any care situation.

Is it reasonable to expect that mother will not have bruises on her arms?

Yes.

What if mother is on medications that cause her to bruise easily?

Bruising, to levels excessive to a ‘healthy’ person, would be reasonable depending on the circumstances.

The definition of reasonable changes with a person’s physical condition and all the different factors: underlying health issues, medications, and mobility concerns that factor in.

This is where it’s important to get the facts, such as Ellen did where her mother was concerned.

In her case, was it reasonable for her mother to not remember having eaten meals?

Well, the next question to ask would be…

Did her mother have dementia or memory issues?

Not to her daughter’s knowledge.

Then no, it was not reasonable for her mother to not remember having eaten meals.

Next course of action?

Verify meal plan and see if there could be an onset of dementia.

Such was very difficult for a long distance caregiver and most certainly the signs of possible neglect or abuse are incredibly difficult to discern from a distance. However, when you take in the ‘reasonable’ factor, many caregivers second guess their suspicions only to suffer terrible guilt later when they find actual abuse has taken place.

The key to discerning truth - be involved and ask questions. If you, or your loved one, are not satisfied with the answers, ask more questions.

Next up: where to go for help

Note: Due to family vacation schedules and additional research time needed for this series, I did not post last week but will be back on schedule now... thanks for your patience!

An Uncomfortable Topic ... Part 1

2011-06-17T10:37:00.000-04:00

I’d like to start a new series on a topic that’s uncomfortable for all caregivers - elder abuse. I’ll share with you a story told to me to give one example of the unexpected abuses that often happen to the aging.


Is it time to address neglect or abuse?

I met a woman (we’ll call her Ellen) who was traveling with her family. She shared that she’d recently brought her 81 year old mother (Mary) to live with her after she’d experienced an abusive situation at the hand of Ellen’s sister (Sally).

Ellen lived in Arizona. Sally in Nevada, and their mother, Mary, in Las Vegas with her second husband. Ellen and Sally’s stepfather died and it was decided that it was time that Mary have someone to live with for support. She’d been through a long haul caring for her husband and it had taken its toll. Mary also had several health issues of her own, particularly back pain.

With Sally living close, Mary moved in with her and Ellen helped get her settled at Sally’s. “I told Sally that she needed to do this for our mother,” Ellen said.

The move was traumatic, yet all proceeded and Ellen would call and check on her mother regularly. Over time, red flags started popping up in the conversations. Mary didn’t remember eating but remembered dreaming about eating and waking to find herself chewing air. Her bowels weren’t working properly. She’d had a lot of back pain and though Sally had taken her to the doctor, the medicine seemed to been knocking Mary out.

When Ellen asked Sally about the issues, Sally was defensive. “Look, I never asked to be a caregiver. There’s food in the house, she can eat when she wants and I’ve taken her to the doctor.”

Please note: This story came to me from Ellen’s perspective, gleaned from several hundred miles away through phone calls. But hers is not an uncommon situation for long distance caregivers.

Ellen suspected neglect and abuse. Yet her mother should be safe with her own daughter, Ellen’s sister, right? When Ellen confronted Sally and none of Sally’s take on the situation gave Ellen peace of mind, and the disturbing conversations with her mother continued, Ellen took action. She went to Nevada to pack up her mom and bring her to Arizona. Though the transition was again difficult, Ellen knew she’d made the right choice. By the time of her mother’s ‘rescue’ Ellen and Sally were not on speaking terms and now, many months later, they still aren’t. Claiming her sister’s difficult personality as a contributing factor, Ellen is at peace with where things are because now she knows her mother is safe.

“One thing I did was slowly wean mom off all those meds with the help and advice of a friend who was a nurse. Mom’s mind cleared quickly and she could tell me more of what happened and tell me how she was really feeling,” Ellen shared.

Ellen found new doctors for her mother who did thorough checks and found the cause of the back problem - tiny fractures in her back (something that is more common in the elderly than many realize). According to Mary, the doctor she had in Nevada had just given her pain medications without a physical exam or x-rays
and scans. She never knew what medication she was on or why.

Now, Mary is on very little medication for pain, taken as needed. She eats planned nutritious meals and her digestive troubles had cleared. When I met Ellen, she was traveling with her mother and a niece and all were having a great time.

So what does this say? Unfortunately this scenario isn’t uncommon. Whether Ellen’s take on the situation was exaggerated or not, I don’t know, but I suspect not with the additional details she shared.

If you have stories to share, please do. Here are some questions we’ll look at in weeks to come.

So what is elder abuse?
Where does it happen and what does it look like?
What can be done to prevent it?

Gifts to share – Keeping eyes off ‘self’ helps keep a positive perspective throughout the aging process, Part 3

2011-06-10T08:39:00.000-04:00

Remember that the goal of this series is to remind all that giving to others helps take the mind off self, while strengthening feelings of self-worth and independence.

Perhaps you aren’t yet in the position where you call yourself a caregiver, or, your beloved senior is very independent (let's call this level 1 care). You start noticing that s/he is beginning to retreating from the world. As people age, the tendency is that their worlds become smaller based on a closer knit group of friends, activities, and interactions. Some they feel their bodies changing and not being quite so obliging to an adventurous spirit.

For me, the awakening to the small-world concept came when my mother announced one day “Well, we’re done traveling.” We were having a simple conversation about interesting places to see one day and that comment stopped me dead in my tracks. At the time, I was just entering peak travel years, thinking of places I’d like to see and see with my husband and children. My mother seemed to be saying “we’re done living.” Sometimes our definition of living differs from those we care about. For me, living and dreams of travel were synonymous.


Delivering meals to others - a way to give back

For Mom, living meant other things. Being involved in her community had become more important to her than travel. It’s about priorities. The red flag for caregivers comes when there are no more priorities being made. Whether from grief over a spouse dying, or loss of friends, participating in activities that make a person feel connected to others while having a sense of accomplishment are very important. Help your loved on take their eyes off themselves and become involved. Doing so before their own physical limitations may set in establishes a positive behavior and will encourage problem solving to continue those activities when some start showing

up.

If you find your loved one starting to retreat from life a bit, first talk about it. Start reminding her that she’s got many talents. Sometimes getting involved in volunteer work takes a boost of confidence. Then take out pen and paper and get to work:

List interests - build ideas
List skills - build ideas for community connections
List friends’ activities - positive peer pressure can go a long way
List family activities - grandchildren are great motivators!

Now let’s break these down just a little more.

When you build a list of interests, dig deeper into how those interests may find outlets in volunteering in the community. If Mom likes to read, ask her if she wants to participate in the ‘adopt a shelf’ activity at her local library.
Mom may be an excellent typist. See if she’d like to volunteer a couple of hours each week to type up the church newsletter or bulletin. If it’s all done on computer and her skills came from years before computers, it might inspire her to take a class so she can apply her skills in new ways.
What do her friends do that she thinks is cool. Really - everyone pays attention to what their peers are doing - it’s an ageless concept. Does her neighbor work at the Soup Kitchen every Friday or deliver Meals on Wheels? Could Mom get a partner from her neighborhood to deliver Meals on Wheels?
See what volunteer activities Mom might want to do at your son’s school. If she doesn’t live near you or other family members with children, encourage her to check out the local elementary school volunteer program - she helps a school and she’s ‘up’ on the latest interests of children the same age as her grandchildren.. It gives them something to talk about! Or check out a foster grandparenting program.

Staying busy and involved helps keep the mind and body active. It helps stave off a mental and emotional retreat that often comes as people fear the limits the aging process might impose. Try to encourage your loved ones to stay active… and put the living into their lives.

Meals On Wheels is a national program where people of all ages take hot meals to elderly, often who are shut-ins and have no family members to help them. This is a great venue for seniors who can be active to give back.

For more tips and ideas on senior volunteering check out Senior Corps.

Gifts to share- Part 3 – Keeping eyes off ‘self’ helps keep a positive perspective throughout the aging process

2011-06-02T17:02:00.000-04:00

Level 2 Care: Senior does not drive or limits driving


Let someone else take the wheel....

Often a caregiver feels that coordinating a social life or volunteer activities for a loved one with limited or no ability to drive is impossible. Not so. In fact, coordinating such for a senior can free time the busy caregiver needs to handle some errands or tasks on his or her own and foster new circles of support.

One example is my mother's. She lost the majority of her vision when she was in her early 60’s. She still had an active mind and many abilities but could not drive. My father took her to the crafting meetings held at a church in town. She could no longer sew, but could help stuff the animals the sewing group made to give to children in the pediatric ward at the local hospital. Her skills and willingness to help were needed. Feeling that she had something to offer was important to her sense of well-being and self-esteem. When deliveries were made to the hospital, others in the sewing group picked her up to go along. While she was involved in crafting activities, Dad ran errands and spent time researching at the local library. It worked well for them, but what if you’re a harried caregiver and aren’t in the flexible schedule retirement stage my Dad was in?

As in Mom's case, it may be that there are others in the group who drive who are willing to pick up those who don’t. Social bonds can also form that extend beyond the volunteer activity. Often the connections made during volunteer work extend beyond the focus of the group and serve to offer support to the group's own members. By that I mean that if you take Mom to a Saturday service group at a local church, she’ll meet people there with whom she’d feel comfortable in other situations and who may be willing to pick her up. Letting others take the wheel when your loved one can't is an important option to consider. It frees you up to attend to your life needs and fosters valuable peer interactions you simply can't provide. Mom going shopping, attending concerts, or going out for meals with these new friends may be an added benefit that comes along the way.

How to get started: Help your loved one find his or her outside interests by asking about hobbies from their youth. What classes did Mom enjoy most in college? What sport did Dad love in high school? By spending time delving into joys of the past, you brainstorm possibilities for enhancing the quality of life now. Call ahead to potential volunteer agencies to set up the right connections and find out when the related groups meet. If you find the group meets during the day when Dad can drive, great! If not, you can brainstorm with your support group ways that you can facilitate getting him to those meetings. Offer to be chauffeur for the initial outing or two. Having you along may help ease social concerns as well as navigation fears. It’s very likely to be an interesting adventure for you, too. For instance, if Mom wants to talk with the head of volunteers at the local theatre to see if she can help with costuming, you’ll get an insight into a local community organization you may not have had time to investigate before. Once the initial contacts are made, Mom has her outlet, both for socializing and feeling needed and productive and the theatre has a seamstress!

Golden Nugget: Take note of the new friends and contacts your caree is making and keep a list of their contact information as well as who might be able to help in a pinch. These peer groups will often provide support for you, the caregiver, if your loved one ever has a health crisis. At the very least, these new friends will want to know if Mom can't make it to a meeting and might need their encouragement!

Gifts to share- Part 2 – Keeping eyes off ‘self’ helps keep a positive perspective throughout the aging process

2011-05-26T18:11:00.000-04:00

Marlu and Buddy’s story (Part One) was an example of making volunteerism work despite and intense level of caregiving and cognitive decline volunteer, which I called Level 5 caregiving. For the purposes of comparison, I’ve broken down other care levels with tips on how to encourage the senior you love to continue to give back despite challenges faced by having an aging body.

Care Level 4 : Caree has mobility issues, may or may not drive.

Just because a senior needs a walker, cane, or other mobility device to make movement easier and safer, doesn’t mean his or her mind and hands can’t perform volunteer tasks. Use those mobility aids to help you get out and make a difference! Look for jobs that don’t require great deals of movement. Many organizations welcome the help of someone to sit down and write, type, or address newsletters, or other clerical tasks. Sorting books to put on carts to be returned to the shelves at a library or being a Children’s Storytime leader at the local library might be a perfect fit.

Care Level 3: Senior has vision, hearing impairment, may or may not be driving.

Many seniors withdraw from social interaction when hearing and visual impairments are everyday challenges. Just as family members and the senior find coping strategies, those can be applied to volunteer settings too, enabling your loved one to stay active and involved.

So what do you do at home when vision or hearing is a challenge?

For the visually impaired, make sure the lighting in the volunteer venue will work for the tasks at hand. If necessary, find magnifying tools to help with tasks. For example, a senior with VI (Visual Impairment) can still help address invitations for a fundraiser but may need to use pre-printed labels instead of writing them by hand. If reading to children in an after school program, a magnifier may be the answer. The tool will also fascinate the children and teach a lesson or two. “I may need help, but I still want to share with you,” is a powerful message that doesn’t have to be spoken.

My mother lost most of her vision in her early 60’s but still had much to offer. Though she couldn’t drive, or sew anymore, she joined a crafting group and helped stuff the animals they made for children at a local hospital. In her case, she received an additional benefit with the social connection and friendships in the sewing group.

When hearing is an issue, make sure the work takes place in an appropriate setting. Background noise and the acoustics of a room may cause problems, particularly if the volunteer needs to hear directions or responses from others regularly. If hearing aids are used, this can still be an issue, as hearing aids may need to be adjusted for use in different locations. Sometimes moving the site where the volunteer work is done
(addressing envelopes at home rather than in a noisy office) helps. The type of work a senior can do may or may not be affected by hearing loss as long as the directions for the task can be offered and clarification gained as need. Make sure written instructions follow any given orally.

Regardless of limitations a senior may feel, look at what areas of life (and in the home) are not physically challenging and try to find a community connection for the same or a similar activity. If sorting and folding laundry is a doable task, consider volunteering at theatre group needing help with costume inventory. If gardening and planting flower beds is therapeutic at home, try offering to put in some beds at another location - maybe even doing it for another senior who couldn’t do it for himself.

Up next: Conquering the driving issue when encouraging your caree to stay active with volunteering.

Gifts to share – Part 1: Keeping eyes off ‘self’ helps keep a positive perspective throughout the aging process

2011-05-18T16:36:00.002-04:00

Marlu Taylor has helped her
husband continue to give back
to others despite his 7 year
battle with Alzheimer's Disease.

Everyone has gifts. Using those gifts to help others in turn helps seniors feel productive at a time in their lives when their bodies often feel limited. In fact, volunteerism can help seniors not only stay mentally stimulated but help slow the onset of frailty (see article).

Even if the time comes when a senior needs to stop driving, it is still possible to be an active volunteer. For caregivers, it may seem one more thing to do on an already strained scheduled, but with a bit of initial effort to coordinate activities, the long term benefits for both caree and caregiver can be great, regardless of the level of care your caree requires for himself. The positive effects of giving to others, despite physical limitations, are contagious and powerful.

For a few posts, I’ll break down senior volunteerism into categories based on care levels, starting with those who have the most intense care needs.

Care Level 5 (intense): Senior has cognitive issues, does not drive

By the time cognitive abilities are an issue for daily living, many caregivers give up the idea of encouraging their loved one to be involved in the ‘outside’ world. Daily living seems enough of a struggle. But there are ways that seniors with memory issues can give to others and feel good about what they can do, receiving a vital boost to their self-esteem and perspective on life. The positive effects of giving to others, despite physical limitations, are contagious and powerful.

The following example is offered with my sincere thanks to Marlu for sharing with me. It helps us all remember that an important job for caregivers is empowering our caree, and keeping our eyes open for the blessings that come when we do.

Buddy and Marlu Taylor, of Spartanburg, SC have been dealing with the affects of Buddy’s Alzheimer’s for more than seven years (See " Love's lasting embrace can overcome life's obstacles," by Kim Kimzey). Marlu has been dedicated to keeping Buddy informed, but also active. Despite his diagnosis, he continued doing volunteer work outside their home as long as he could. He tried volunteering at the local hospital, delivering newspapers, but the room numbers, locations, and managing the task weren’t a good fit. Then he found his ‘job’ at Animal Allies, which in turn made as much impact on the staff there as it did Buddy.

“It’s not just one way. The people Buddy worked with felt good that they were helping him feel productive. He’d go to his ‘job’ every day and it meant so much to all involved,” explained Marlu.

Then Buddy started painting “memory rocks.” The activity helps him with hand/eye coordination and Marlu reminds him that what he is doing helps others learn. The rocks are painted purple and white – the signature colors of the Alzheimer’s association. Marlu shared the rocks with the SC Lieutenant Governor and others advocating for funding for respite care vouchers.

Buddy carries the rocks with him and gives them away.

Marlu has been surprised at the reaction of the recipients and the power his gifts hold.

Buddy Taylor's painted rocks
decorate the bird bath area in the
Memory Garden at the
Alzeheimer's Association office in
Spartanburg, SC. His gift to the
garden serves to remind visitors
that everyone has something to give.

“You can see the expression on their face and how clearly they

are touched. It’s not about

what is offered.

They realize the significance of Buddy still wanting to offer something to another person despite his own limitations.”

Now Buddy needs extra support to paint the rocks. Placing a
canvas under the rocks he can no longer hold, Buddy is painting
canvasses which will one day be turned into Christmas presents.

As Marlu explains, “It's okay that he can't do some things, it's about what he can do. It’s all about having a purpose in whatever way works.”

When Reality Strikes - Accepting and Managing the Hurt

2011-05-13T16:52:00.000-04:00

Your lifesaver in difficult times may
be different than the one your caree uses.
That's okay!

When a loved one is dealing with a major crisis, we read the books and pamphlets, we Google. We listen to the doctors and think of people we know who have dealt with those issues before. We gather the information and prepare. Even the worst diagnosis can seem manageable for a while - when it’s not in your face.

It’s important to remember that no number of books or conversations with friends will change the harsh reality of when what you read is what really happens to you. Sometimes it’s bad. Sometimes it hurts. And sometimes the caregiver can’t make it better - at least not right away.

For those of you who are parents, you likely know what I mean. It’s a harsh reality when parents feel the sting of the pain they can’t take away from their child. It’s often the same with the caregiver/caree relationship.

Some caregivers grab a life saver by looking for the logic of a situation.
Well, that’s what the book said would happen. Let’s get beyond this.
It’s only temporary.
It’ll be easier the next time. We’ll know what to accept.

Are those platitudes we are throwing out to our carees? They may sound like it - empty, and hollow, but really, they are lifelines we’re throwing out to ourselves as much as our carees. We want to believe something other than what is right now, especially when ‘right now’ hurts.

We can’t make the hair grow back. We can’t force the sickness to stop. We can’t bring the energy back.

So what can we do?
Call it what it is.
It’s bad. Sometimes just acknowledging how bad we feel gives us the space to deal with the pain and move forward. Sometimes it takes a while. But one thing that is constant in all of it is change. The worst will change. Sometimes it takes longer for the caree than the caregiver to accept a new reality. Sometimes it’s the other way around.

Once we allow the reality to settle in, we can take some actions to ease the hurt we and our caree feel. Likely, there will be a difference between how a caregiver deals with the pain of reality and the caree does. That’s okay, as along as both are willing to give each one the space to feel what they feel. Trying to force your caree to share your lifeline just isn’t fair. It’s yours. Try not to push, but just be there in whatever way works.

The best thing you can say or do when times get tough? Sometimes, nothing. Sometimes just hold your caree’s hand, or remind them that you believe the hurt, the baldness, the sickness that are part of the fight are worth it - they’re worth it. And if they’re not ready to hear it, that’s okay.
When your caree does reaches for a lifesaver, whether it’s the one you offer or one they find on their own, your job is to help them hold on to it.

Blood Counts and Levels - Part 2 - A Time SAVER!

2011-05-06T17:07:00.001-04:00

I recently spoke with Karlene Fenderson, a center manager for LINCARE and found what all patients and caregivers need - a TIME SAVER!! She was sharing about an in-home PT/INR testing kit/program that her company offers in partnership with their sister company,mdINR.

In Part 1 of this series, I mentioned that PT/INR levels monitor the thickness of blood.

For some, coming in weekly or even less frequently, for just a finger stick, is a hardship. Think of managing a wheelchair, arranging transportation, trekking across town, and waiting in the office for both the check to be told ‘stay on your current dose.’

Though sometimes there is a regular doctor checkup and bloodwork to do be done at the same time, there are still plenty of times when only the PT/INR needs to be checked. Now think of sitting in a chair at home, doing your own finger stick (similar to a diabetic’s glucose monitor) and making a phone call report your results, then getting a call back from your doctor with any directions for change in medication. The device used is the same as those used in doctors’ offices and through home-health agencies. Wow - much easier with great amounts of time (and gas money!) saved by in-home testing.

This wasn’t an option when I was caring for my parents, but it is now, and, it’s covered by insurance. Would I use such a service now - you bet! So what happens to make this work?

1.“Medicare wants a patient to be on the therapy for three months monitored by a physician before starting to test at home to ensure safety, then provide for weekly testing,” explained Fenderson.

2. An order is needed from the physician and authorization from the insurance company is received, then the service started through Lincare and MdINR (or another providing agency). They get the approved tolerance range for the patient from the doctor. (note: some in-home testing companies use doctor ‘norms’ rather than those specific to the patient which may cause additional follow up calls).

3. A clinician comes to the home to give training to the patient and/or caregiver(s). (check how long it takes to schedule this)

4. When the patient tests, he calls in (or reports online) the results, and if outside the tolerance range for him, contact is made through the physician’s office for directions for change in medicine dosage. (Check to see the specific follow up plan for the company you consider.)

5. If a patient doesn’t call in results each week the monitoring company should follow through to check on the patient. (Ask the company you are considering how they follow up and what happens if you don’t call in).

“One strength of the Lincare MdINR program is that we’re connected to 1200 centers nationwide,” Fenderson explained. That means you can take your test while on vacation and can receive the same follow up and feedback without having to plan your vacation time around a trip to the doctor’s office for just that one test.

Author’s note: Please know I received nothing from Lincare or Md/INR to mention them. I simply heard of a resource and wanted to share it with you. I encourage you to do your own research too and consider all options for in-home testing to find what will work best for you.

Blood Counts and Levels: Part 1

2011-05-03T17:02:00.000-04:00

Knowing important information stored in
your blood can help you be a better
partner in your own care.

It’s something extremely important to our survival yet we rarely see it and certainly hope not to... our blood. Depending upon what medical condition you are managing as a patient or caregiver, it’s important to find out just what the doctor is looking for when drawing all those vials of precious fluid from your veins!

Why should you? Aren’t "they" keeping track of it all?

I’m big on empowering patients and caregivers with information. They spend more time in the front lines of their own care than a doctor ever can. An educated patient and caregiver are a vital link in successful medical care.

As people age, they are more likely to have issues with blood thinning or thickening. For people with DVT or Deep Vein Thrombosis; Atrial Fibrillation (A-Fib); Pulmonary Embolism; mechanical heart valves, and other medical issues, it’s extremely important to monitor PT/INR levels. In layman’s terms, that’s the thickness of the blood related to its ability to clot. If it’s too high, the blood is too thin and there are higher risks for bleeding. If it’s too low, the blood is too thick and clotting can happen when it’s not supposed to. Monitoring these levels and treating with what many call “Coumadin Therapy” reduces the chance of strokes and heart attacks. Coumadin is the usual drug given to thin the blood. The generic is called Warfarin. Various amounts are given determined by the monitoring of the blood levels. When a doctor wants the PT/INR levels monitored, it’s VERY important to follow through. By doing so, you reduce the chance major health crises.

Another important time to know what’s happening in your blood is when receiving chemotherapy. Blood is drawn quite often during cancer treatment. You should know why. If your white cell count drops, you’re at higher risk for infection. Your doctor or nurse should tell you when to stay away from crowds, the grocery store, or sadly the grandbabies, but if you monitor your own white count, you can ask if it’s low enough that you need to be more cautious in other circumstances the doctor may not consider. Let’s face it - how likely is it for the doctor to ask if you’ve bought tickets to a play at the theatre and that may not cross your mind as a place as germ filled as a grocery store. You might not even remember it right away, but telling the doctor of any 'unusual' (nondaily) plans will help him/her plan your care. And yes, people having chemotherapy do such things when they feel up to it! But remember, though you may feel able to go out to a play, your blood may not be ready. And it can’t tell you.

White blood cell counts aren’t the only things that doctors look for, so when you have your blood drawn, ask for details. It empowers you to be a partner in your own care.

Golden Nuggets for Caregivers: Ask for a printed report of blood tests. Make notes about what are the big things to look for and ask what all those numbers and letters mean. Believe me, a report generally looks like an advanced level algebra problem with numbers and letters all over the place, so ask for explanation. Put copies of the reports in your caregiver’s notebook. If your doctor’s office won’t give you copies or explain them to you - it just may be time to find another doctor’s office. Now, if it’s the lab staff who won’t provide it, don’t leave your favorite doc - just let him or her know what you want and address the issue through the office management.

Grace Space: Life, and Caregiving, are in the Moments

2011-04-29T13:55:00.000-04:00

Grace Space is what happens
when busy caregivers still
catch the birdsong...

Today’s topic is what I call Grace Space. Caregiving issues are totally non-denominational and have little to do with any specific religion, other than how a caregiver’s faith drives his or her actions ‘in the field.’ But today, let me delve into the realm of grace.

My hope with Because I CARE and every opportunity I have to speak to individuals and groups about caregiving is that I help others find Grace Space amidst their caregiver duties.

I know that some people find themselves in the heat of caregiving wondering how they ended up there. Some resent being caregivers and have many “why me?” moments. Many caregivers receive an emotional beating each time they try to help their caree. Not everyone sees caregiving as an opportunity. Perhaps for them, Grace Space is even more important to find. But all caregivers need it. The good news is that it’s easy to find.

Start with realizing that you’re not alone. There are others out there who are willing to help, whether it’s to give much needed advice, a nudge to finally set some worries aside with action, or tips for making tasks easier. Hopefully you’re getting bits of all of that here. I can’t exactly help you with the pile of laundry building up because you don’t have time to do it, but I can remind you that some Laundromats have drop-off service and will wash and fold for you. The fee for doing that once in a while is worth it - and gives you grace space.

It’s easy to get so bogged down in the daily details of care that you put off the obvious things that will take the weight off. If you’re disorganized with all the information coming in and get a headache every morning trying to sort through the duties of the day, quit beating yourself up for it and find some tools to help (hint - start the caregiver’s notebook). You’ll find grace space in the moments you’re not crazily digging through your purse trying to find the appointment card you stuck in there - Grace Space is that deep breath you take when you actually make it to the appointment on time.

Simply by removing some of the details, the weight is lifted and even the smallest bits of time are opened up. Those precious moments when you actually breathe = Grace Space.

It’s whatever lets you reconnect with your children, spouse, friends, and yourself.
It’s having those few moments to actually take time to get your hair done and breathing enough to actually enjoy the scalp massage.
It’s what opens your ears to the birdsong around you as you head out to the car on your way to the hospital.

Life is in the moments. But if you feel constantly overwhelmed by the details, there is no space for the moments that matter - the ones that keep us going. What's helped YOU to discover your Grace Space?

Brava to Woman's Day Caregiver Guide

2011-04-27T10:18:00.001-04:00

Sitting in my doctor’s office, yes, taking care of myself for a change, I did what most people do - I scanned the magazines. What a gem I found in the March 2011 issue of Women’s Day. Brava (the feminine form of Bravo) to the publishers and editors for offering such a great guide for caregivers. Below are some of the articles and links. It was great to see the article about Important Paperwork that addressed the series I covered in Are You Gambling? and The Will parts 1-6. The Real Life stories were inspirational and stories anyone can relate to on some level. They start readers thinking about what roles they would take in their own family situation. The Survival guide offers tips I’ve been encouraging caregivers with with for years, plus some new ones! By far for me, the most significant was the 6 Common Money Questions which did an absolutely fabulous job of walking through all the money issues including a heads up about the new Community Living Assistance Services and Supports Act (CLASS Act) working its way through legislation now. The article points out that it’s still a work in progress with an October 2012 deadline for it to become a workable part of our healthcare reform, but the best news is that the needs of the aging are not being ignored and that there are efforts to look toward the future. For those in the thick of caregiving finances now, there are plenty of great tips and concise explanations for the ins and outs of money matters.

Real Life: Going from Wife to Caregiver by Gail Sheehy’s

Real Life: 3 Generations of Caregivers by Phillis Greene, D.G. Fulford, and Maggie Sherman

Important Paperwork for Aging Parents by Mary Hunt

Caregiver’s Survival Guide by Gail Sheehy

Caretaking Tips: 6 Common Money Questions by Mary Hunt

Ten Helpful Resources For Caregivers by Mary Hunt

Because I CARE is all about sharing good information in the hopes of helping caregivers and future caregivers. It can be a tough road, but is most definitely a worthwhile journey. When those of us who have traveled those roads (and found the potholes) share tips, we make the journey easier for someone else. It brings about what I call Grace Space... I'll share about that next time.

Recruiting Help During Family Celebrations Noursishes Caregiver Spirit

2011-04-22T09:28:00.001-04:00

Can Gran help with the egg dying while
you cook the dinner?

Easter is one of many religious holidays where generations come together.

Remember the reason of this time of celebration. Rebirth and renewal of spirit can come to your caregiving role too. How do you want to make it new? How do you want to breathe fresh life into a situation where you feel out of control or stressed? Family gathering times are great for getting those who live far away involved and increase their awareness about what issues you, as a primary caregiver, deal with regularly. By having others in 'the know' you begin to get some much needed support.

Maybe now is not the time for everyone to descend on the childhood home and expect Mom to be able to host the family meal. Some caregivers end up nearly killing themselves with the effort to continue celebrations in the style "Mom used to do" when the reality is that Mom isn't up to it anymore. Perhaps you’ve known that for a long time, but the long-distance members of the family just don’t ‘get it’ yet. You don't have to be the one to make the holiday fit the picture in the collective family mind. If you're a harried, tired, and stressed out caregiver, this may just be your opportunity for a real break while building awareness of the need for additional support. Let the family know you'll be meeting at a restaurant and everyone pays for their own meal if they want to get together. If a few fusses are made, good. Awareness is building. Stand your ground.

New word for today: caree - the person you care for.

Have you already shifted the location of the annual family gathering to accommodate Dad’s needs now that Mom’s gone? Here are some tips for involving your caree and other family members in celebrations:

Ask Mom, Dad, or Gran to write down the family traditions they remember from their childhood while the ham is cooking. If writing is a problem, have them dictate the stories to a member of the younger generation, or plan time for interviews that another family member videos.
Ask another family member to brainstorm ways to keep your caree involved. If it’s bringing Mom over to sit at the counter and help dye eggs with the kids while you cook, have that family member arrange transportation and set up the activity.
Ask another family member to take Mom to Church services or events. So that you can have time to spend nurturing your spirit while Mom is still having quality family and faith time.
If your caree is wheelchair bound, being stuck in one room while the family action happens elsewhere is frustrating. Designate a family member to be in charge of transport duties for the day.
Is getting a new Easter outfit a tradition? Let someone else take Gran shopping or help her pick out the outfit to wear to dinner. Ask a family member who has come 'home' for Easter to help Gran get dressed for the day or help with transportation.
Let another family member help Dad be involved in the annual egg hunt. Check out Uncle Joe's golf bag. He just might have one of those attachments on the end of a club that helps to pick up balls - try it on those plastic eggs so Gran doesn't have to bend down. This brings up the idea of re-purposing one item used in life for effective use in caregiving. It's a topic we touched on in yesterday's radio show (http://www.blogtalkradio.com/caregiving with Denise Brown) and it's one we'll be looking at in upcoming posts, so if you have items you've repurposed for caregiving, let me know and we'll share!

Give yourself a chance to be renewed during this special time of the year. Passing off some of your care duties now may bring great support later and give you a chance to refresh your Spirit in the process.

Cash in the Attic – with a Twist: Money Management

2011-04-19T09:47:00.000-04:00

I once thought that the story about my husband’s grandfather stashing money in cans in the cellar was just a unique tale about the effects of the Great Depression on a certain generation. But I’ve heard another story just this week about money stashed for safekeeping in a shoebox in a closet. The folks involved weren’t part of the Depression Era, but their parents likely were. Whether or not it’s common in the generation of the aged now, I don’t know, but it definitely points out one serious issue connected to caregiving. Money.

Caregivers (I’ll use the adult child scenario here) need to understand that their parents have been handling money for all of their 50, 60, 70, or 80+ years. On top of that, they were the ones providing financial security for you. Rarely is any individual ‘perfect’ in managing money. So, when the hot topic of can Mom and/or Dad still manage their finances on their own comes up, several factors come into play. One is independence. The other is insecurity. The third may be trust. All three issues need to be addressed in order for any caregiver and their loved ones to forge a shared approach to managing money and protecting or creating financial security.

Independence: As long as they can, let Mom and/or Dad handle their own affairs. If you start seeing or hearing red flags, like fusses about bills not getting paid on time or stacks of mail piling up all around the house, it might be time to offer help. The Golden Nugget for caregivers here is the word OFFER. If you charge in like an elephant, the potential for success drops significantly. It may be that there is a natural time to step in and help, such as when a parent is in the hospital or recovering from surgery and the bills still need to be paid. Make sure to approach this topic respectfully.
Insecurity: If Mom and Dad haven’t been the best financial planners, then they may be very insecure about any of their children becoming involved. If you find resistance to helping, particularly when you see a strong need for it, then consider approaching the issue from a standpoint that eases insecurity. If it’s the stance that you yourself had to learn ‘the hard way’ or perhaps getting someone from the outside to help do a financial review, finding a way to step out of what they may perceive as an opportunity for negative judgment may ease tension. Many banks will (for a fee) balance a checkbook for an account holder and they have representatives willing to see what other services they can offer. Having a financial advisor come in to do a complementary evaluation might help. The financial advisor will often do that free consultation in the hopes that they become the go-to person for future investments (such as when your parents sell their house to downsize and need a safe place to put the money). They'll also often come to your home for such a review.
Trust: Let’s face it. In some families, there are some who are good with money and some who aren’t. There may also family members who can’t be trusted to ‘help’ Mom and Dad with finances. It’s a sad but true fact that caregivers need to be honest about. Find out what will help your parents feel comfortable and go from there. Caregivers beware: they may still not want you helping, even if you know and they know you can be trusted. Remember: if your goal is to help facilitate their security, work to push your personal feelings aside and help them make connections to whatever services are needed to reach that goal.

Please note: this topic does not only apply to the parent/child caregiver roles. This is a key when one spouse has to start helping with finances with the other has been doing it through all the married years. It also applies when someone who does not have family who can help needs to look to a friend to help.

Tips for Communicating About Tough Topics

2011-04-15T17:04:00.000-04:00

No matter how close you are to those you care for, in the heart of caregiving, tough issues need to be addressed. Let’s face it - it’s not the issues we fear as much as the answers we might get to our questions. So just how do you talk? And what do you talk about?

The biggest issues that arise in caregiving are: money, insurance, lifestyle goals, end-of-life care issues, and wills/estates (assets).

Sometimes it's a case of the finding
the right moment to talk without
distraction, or finding the right family
member to broach difficult topics
related to care, lifestyle goals, and
being prepared for the future.

Consider which of the following might work in your situation.

1. Make a list of the issues you feel need to be addressed. Ask other family members to do the same. Compare lists, prioritize.

2. Decide if a family meeting will work best for your dynamics and geographical issues. Have a list of issues ready and knock them out one at a time if you think the group approach will work for your family. If not, designate a spokesperson to bring the issues up and discuss whether issues of concern will be approached individually over time or brought up all at once. If over time, have a goal for when the issue or issues will be addressed.

3. Consider passing the buck. Really. Perhaps someone else in your family is the best one to start the topics rolling or ask for a family meeting. Don’t feel guilty if you are not the person to start this process. Everyone can have a role in bringing the family together. This also may be a good way to involve a sibling who lives a distance away from the care situation. Carving out a whole family hour when your brother “Joe” comes for a visit might be that open door you need, or Mom and Dad might be more receptive to talking about a topic if it comes from Joe.

4. Plant seeds. As long as you’re not in a crisis, need-to-know-now situation, it’s okay to not deal with everything in one sitting, or even get to the point right away. Dealing with one issue at a time might make it easier on you, but look at the issues and prioritize them. Maybe you read an article, or purposely find one, that brings up an issue you feel needs to be discussed.

Read the article in their presence and comment on it
Mail them a copy
Bring it up in conversation after you’ve read it

5. Remember your goal - peace of mind for all of you. Be careful to remind your parent and yourself that your goal is not to control but to help everyone gain peace with issues and wishes and goals before they might become problems. But what happens when you don’t like the answers you get? No one sees eye-to-eye? Try to see it as a good thing. It gives you a place to start working out solutions to issues that you have seen as potential problems.

6. When dealing with a hot button issue, try to remove other distractions. Trying to bring up living wills while the grandkids are trying to get Grandpa to play ball or Mom is only concerned with grocery shoppoing is not likely to produce results.

The Process: When you do talk, maintain an attitude of active listening. Repeat what others in the discussion say, calmly. This validates their feelings and lets them know they've been heard, and gives you a chance to clarify and process the information before responding. If you don’t like the answer to a question or concern, breathe. This is not the time to start an argument. Either say nothing, or “Oh, I hadn’t thought of that,” and let it go - for now. Give yourself a chance to digest the information. You may need time to hit the Rolaids and fume with your spouse or friends about “how could my parent(s) think that???” but the key is still that you’ve opened the door and into the discussion again when you, and they, have had more time to think about it. For the vast majority of people, this is reality they will face with more than one issue. Resolution, even if it is agreeing to disagree on a topic, brings peace - and takes time.

Golden Nugget for Caregivers: broach some of the topics of concern you have about your parents and their care with your own support network, likely your spouse or friends. They might have insights that will help and if not, they at least know what you’re dealing with and can be there for you if you need to decompress (or celebrate) when you get answers to issues that have been concerning you.

Pack Differently on your next Caregiver Adventure

2011-04-13T11:11:00.000-04:00

Caregivers swim in new waters when
roles change... pack to suit the needs
of the new adventure.

Once a caregiver, always a caregiver? Often true. In many families, the caregiving role is revisited. When a primary caregiver steps up, that person becomes well versed in the ins and outs of medical situations and dealing with a unique set of circumstances. In a family with several children, it is true that usually one becomes the caregiver to a parent with hopefully the others providing whatever support they can. Basically, someone has to coordinate. So what happens when the role of caregiver is needed for the other parent, or a parent-in-law? Those who are most experienced in caregiving are often called on, or simply volunteer, to take on that role again. I’ve heard some caregivers say “it’s my brother’s turn, I did this for Mom, he needs to do it for Dad.” If they can work that out, great. But I want to drop an idea out there for those caregivers who find themselves stepping back into that role.

Test the waters of a new
care situation by
talking through the issues
with those involved.

You might have to pack differently for this adventure.

Jayne cared for her mother for several years before her death. When her mother’s health was failing, Jayne did it all out of necessity. Her father had died years before and there were no siblings. When her mother-in-law was diagnosed with cancer, she volunteered to help with whatever needed to be done, however, she wasn’t sure how to step in to offer care. Her father-in-law was very capable and willing caregiver too. Should she just barrel in and take charge?

Jayne was headed on a new caregiver journey. Add in the differences in personalities, the fact that there are several other adult children in the family, and the in-law factor. Jayne is definitely swimming in new waters.

The point here is that no matter how experienced a caregiver is, every care situation is different. The good news is that some elements of caregiving are the same. Keeping information organized, building communication skills, and understanding that transportation issues, finances and legalities, and mobility are all things that may need to be addressed, are common. The answers and actions needed may be different, but an experienced caregiver has a place to start helping by offering insight about the common issues.

Will a caregiver take the primary role the next time around? Not necessarily. Others may want to step forward and have the experienced caregiver become more of a resource person. Test the waters, talk it out. If Dad is perfectly able to drive Mom to appointments and take notes, then it may be that their son or daughter-in-law is not needed at every appointment. What does Mom want? Caregivers need to be wary of becoming know-it-alls and remember that the knowledge they have gained in previous care situations may not be needed now. They also need to realize that medical processes change over time too and what is expected with one type of treatment may not be the same if a similar type of treatment is offered five years later. There will always be new things to learn.

As always, the most import element to success in any situation is quality communication. Open the door for discussion about the topics that need to be addressed, then be willing to listen before starting to map out the dynamics of a new caregiving role you may be stepping into.

Coming next: Tips For Successful Care Communication

Mission Possible Part 2 - Ways to Encourage Those Receiving Care

2011-04-08T16:02:00.001-04:00

Watching the youngest
generation reach their life
milestones is a common motivator.

Receiving care is difficult for many, particularly women who have been hard-wired to be the caregivers of their own families. So when a health crisis occurs, finding motivation to push forward toward the unknown, and an unknown that likely involves letting others help care for you, is a huge challenge. Caregivers need to find what motivates their loved ones to fight the necessary healthcare battles. Some patients begin this process by saying they’ll fight because that’s what the doctor says they need to do, or because their family says they must. Warning: The ‘want’ has to come from within the heart of the patient. “I want to teach my granddaughter how to bake cakes so I need more time,” is a very different perspective. The will to live can only come from within.

Could having the chance to do this
be your loved one's motivator?

Ask the loved one you’re caring for what they want to life for. There is no wrong answer here and it may take a while before the answer comes.

Golden Nugget for the Caregiver: If you have to wait for this revelation, this will be a difficult time for you, because you are coming to the situation from a different perspective.

When the answer does come, be accepting of whatever that motivator may be. Remember it’s your loved one’s motivation- you don’t even have to understand it. If the motivation seems so outlandish – Mom wants to skydive for her 90^th birthday (and in truth, that might be possible depending on your situation) - that may be her way of either not wanting to share at the moment, bringing humor to a tough situation, or simply aiming high (yes, pun intended). Accept it. Use it. Let it be the thing you talk about during the many times you wait in doctors’ offices. Buy a sky diving magazine and bring it to the hospital. Get her a subscription.

The key here is that if a person doesn’t have anything to strive for, any health battle, no matter how curable or not, will not be won. Finding and supporting motivation is essential.

Perhaps motivation comes from making it until Christmas, a family wedding, seeing the grandchildren grow up. Kids and "Grands" as well as other family members can help with dream building and goal setting too.

This isn’t Mission Impossible, though sometimes you might wonder when the going gets rough. When those times come, consider enlisting the help of tangible reminders of the survival mission. If it’s the grandkids, have them write personal notes to Grandma sharing how brave they think she is for working so hard to fight her cancer. If it’s a granddaughter nearing graduation, have her send an early picture of her in a cap and gown, thanking Grandpa for wanting to be there for her graduation. It may just be a drawing by loving grandchild that helps remind grandma that there is someone very special she wants to spend more time with. But use this with caution - such reminders of love should not be used as hurtful 'guilt trips.' The suggestion for love letters from young motivators came to me from a very wise friend. She also mentioned the idea of presenting a loved one with a locket with photos of those she’s fighting to watch reach their own milestones in life. If it’s one more Christmas, make an effort to shop for or make a special new ornament for the family tree. If it's an upcoming wedding, pick up a bridal magazine to Gran can feel a part of the process. Sometimes that little something to hold helps the visions of a brighter future come back into focus when health challenges cloud our view.

Another Nugget: I love the way the AARP magazine and website encourage active living. I'm definitely a live-life-to-the-fullest advocate. Would you want to win your health battle so that one day you can do these?....
http://www.aarp.org/travel/destinations/info-04-2011/adventure-travel-destinations.html

Mission Possible Part I - Finding Your Motivation as a Caregiver

2011-04-06T08:29:00.002-04:00

Having a clear motivation is an essential tool for surviving
the emotional rollercoasters that come with caregiving.

Finding your motivation for giving care can be a very real struggle.

When giving care to a loved one, sometimes the tasks at hand seem overwhelming and endless. By having a clear picture of why you’re doing what you’re doing, you move forward through the tough times rather that getting stuck by wondering “why am I doing this?” For some caregivers, their only motivation comes from wanting to show their own children how they will one day want to be cared for. In the most difficult of care situations, that can be an excellent motivator. If you're saying right now that "I'm doing this because I'm the only one" or "because I have to," it's time to re-work your motivation.

For me, the end was my motivation. No, it wasn’t about getting to the end. It was what I wanted to feel at the end. I knew that what I wanted most was the sense that I’d done all I could. I didn’t want regrets.

I well remember the night standing in the hospital room beside my mother’s bed when a call came in from her surgeon. “I’ve reviewed the scans over and over again and had my colleagues check them too. I think we need to go back in and see what is really happening.”

So many thoughts ran through my head. No. Not again. She won’t make it. And, How can we go through this again? When will this roller coaster of emotion end? I don’t know how much more I can manage. Then came a bit of guilt. I realized I had acknowledged my own feelings of exhaustion, while she struggled for her life.

What pulled me back up off the floor I’d sunk onto while taking that call was the motivation I’d had all along. Had I done all I could? No, not yet. That was what did it for me. It had to be about her. At the time, I didn’t know I had less than 48 hours before that mission ended. The fact was that mission wasn’t over and I needed to stay the course.

What’s your mission in caregiving? Is it to know you’ve done your best, or to help your loved one reach his or her own goal? For some it has been: Dad wants to make it through one more Christmas and I’ve got to help make that happen, or Mom wants to go on that dream trip and we’re going to make that happen for her. Often your mission will be tied to your loved ones, but make sure it's not tied to emotional baggage, too.

If you’re using the caregiver role to prove your worth to someone else (perhaps a parent who has always seemed so critical or siblings who’ve never seemed to realize you have become an adult) you’ve headed into a danger zone. That’s when you need help from a professional to sort through the contents of the emotional baggage you've carried into the caregiving role. What you think you need to come from the caregiving role, perhaps parental acceptance, may not be the reality. Maybe you only need to accept yourself. It is very easy to project our needs for love and approval onto a caregiving situation, but doing so only opens doors to disappointment. Check your motivation.

Look at what you’d like to see happen when the end of the caregiving season arrives. It is hard to think about, but necessary. How do you want to feel when these hard times are over? “I want to know that……” is your starting place. Finding your mission as a caregiver is an important part of accepting the role and the challenges that come with it. Motivation builds on a clear mission.

Taking Charge Part 2: Three Steps for Creating a Medical History

2011-03-31T14:41:00.001-04:00

If you feel aggravated when having to answer the same questions when moving from doctor to doctor, you’re not alone. But even in what seems like a waste of time, there is a bit of logic one doctor took the time to explain. He was the third doctor we’d seen in one morning on the way to a specialist.

“We do this to combat human nature. People forget,” he said. He pointed out that in his interview with us, he received a detail of Mom’s medical history we’d not put on the form he had in front of him.

Point made, lesson learned.

Having a detailed medical history in hand will help reduce the stress of answering repeated questions or filling out forms because the answers come more easily when have gone through the process of digging into the past yourself, on your own time. Writing a medical history down before there is a medical crisis, or at the onset of a new treatment, is even better.

Step One:

Break down your medical history into different areas (try using a separate sheet of paper for each heading):

Asking questions about
medications your loved one is taking
or has taken is a good way to start
breaking down a medical history.

· Medications: Start with your current list of medications. Write down the condition you take it for, the doctor who prescribed it, and how long you’ve been taking it. Now take a step back in time. Were any of those medications a replacement for another? Why the change? Once you get back to the start of a medication supported treatment, you have a condition to document. Record medications you once took, even if you don’t take them now. This may help you remember an allergic reaction you had.

· Conditions: Write down all the conditions you are or have been treated for. Ulcers? Diabetes, depression? List each condition, the doctor or doctors treating it, and when it was first identified.

· Surgeries: List any surgery you’ve ever had. If they don’t come to mind immediately, check out your body in the mirror after a shower. Are there scars there you’d forgotten about? What caused them? Again, travel back in time. When did you have the surgery? What was the condition causing the need for surgery? Who was the doctor? What hospital? When did the condition start that caused the need for surgery. Check your Conditions list to make sure you’ve listed that condition. Were medications tried for ‘curing’ the condition before surgery was considered? List them on your Medications page. Even if the problem was solved by surgery, list the condition. It’s part of your history.

· Tests: record all the recent medical tests you had, the condition the doctor was looking for, and the result. For example. CT scan of abdomen. Pain in side. Dr. X suspected appendix.

· Bones: As one ages, those bones that have support the body for decades can start to wear out. Bone injuries over the years, how they’ve healed, and any lasting effect, can impact current situations, even decades after the original injury.

· Allergies: Allergies may not be to medications alone, but to things like the latex in gloves, the dyes used for certain scans. It is essential to know allergies and the types of reactions to those allergies.

Step Two: Keep these medical history sheets out over several days or even weeks. Work on them when time permits. Don't work on it so hard at once you increase your stress. When you think you're finished, re-write the information in a format that makes sense to you – generally putting this information in chronological order starting with the most recent works the best.

Step Three: Make copies of your history and keep them with you when you head to a new doctor’s office. Update your history regularly - once you start you'll find that you remember more and more as time goes on.

When it finally is done, everything you and your doctors need to put the lessons learned in your past, to address your need in the present, and bring you to the healthiest future possible will be close at hand.

Two Golden Nugget for Caregivers: While you’re helping an aging loved one create their medical history… do yours! And remember caregivers, letting your aging loved one work on this over time gives them something to do that is helpful, and may take a strain off you!

Taking Charge Part 1: Documenting your medical history helps streamline communications; assists long term health

2011-03-29T08:11:00.001-04:00

Today’s medical scene requires active participation by the patient. The more a patient does to become a leader in his or her own care, the more successful the outcome. Yet that success actually begins with stepping back in time by creating and accurate medical history.

Despite what you may feel on some
days, you're not as old as the
Coliseum in Rome,
but you do have a history
that's important to uncover.

We sat in the tiny cubicle in the ‘recouperative’ area after my mother had an endoscopy where the doctor had just looked down her throat and into her stomach to see what might be causing her current condition. The curtains parted as the doctor came in and thankfully gave us the ‘all clear, no signs of a problem.’ He looked Mom over, making it clear he wanted to talk to her.

“I didn’t know you’d had a …….,” he said, looking to Mom, who like me, was baffled by the long medical term he used followed by a brief description of removal of part of her stomach.

“Oh, I put that on the pre-op form,” I jumped in, a bit defensively. But the details, occurring before my birth, never seemed important.

Even groggy, she was able to elaborate that yes, she’d had a procedure that removed part of her stomach and cut her Vagus nerve because she’d had a benign tumor in her abdomen the year before I was born. Tumor, partial removal of stomach. Yes, those details might have been important before the gastroenterologist (doctor who specializes in the digestive system) looked through his scope to find much less than he’d expected. I started to feel guilty that I’d not been more attentive to that detail of her medical history. As I had been for several offices and procedures over the course of five years helping care for my mother, I’d filled out all the forms. But not only did I not have the million dollar word for that procedure, I’d only written in ‘stomach surgery, approximately 40 years ago.’ That happened to be all I knew. I thought the importance of surgical information was mainly to determine if a patient had ever had anesthesia or surgical problems. I was wrong.

It would have helped the gastroenterologist to know she had a stomach tumor in her history. Knowledge of medical history is essential to breaking the code of any current condition or complaint. Even if the information doesn’t seem important to you as the patient or a caregiver, it’s essential for connecting doctors of the past, present and future so they can offer the best care possible. It’s up to the patient or caregiver to fill in the information gaps with every physician.

The key is to record a medical history in a form that the patient and/or caregiver can understand and use when communicating with doctors. But rushing to fill out a medical history, while waiting in a doctor’s office, is not the time to create a complete medical history.

Next Up: A Step-By-Step Plan for creating your own medical history summary.

Golden Nugget: On the book website, http://www.whenyouragingparentneedscare.com/ , you can print forms, such as the surgical history that you and your loved one can work on over time, and carry with you when you go to new appointments.

Forgiveness - let the baggage go to forge a better caregiving relationship

2011-03-22T12:21:00.000-04:00

What emotional baggage are you
carrying into your caregiver role?

Let’s move from journaling about tough topics to addressing one directly. Forgiveness. That old phrase “forgive and forget” doesn’t really work, does it? How often do we really forget the issue that caused us to learn to forgive? We learn, we move on. That’s about the best a human being can do. We learn that we’re all human and that people make mistakes and sometimes those mistakes hurt others.

In the role reversal that comes with caregiving, there is often a great need for forgiveness.

When caring for an aging parent, an adult child sees their parent in a whole different light. Sometimes that light is colored with pain from past hurts. Recall the many times when you were growing up that you told yourself, “I’d never speak that way or say such a thing to my child!”

For those of you who are parents, now consider how many times you have caught yourself actually saying or doing those very things. Being a parent is a reality check for our perceptions about how we were parented. When the situations reverse, and we have to start using parenting skills in our interactions with our own parents, emotional baggage often surfaces.

Sometimes we grow past the hurts of our youth and they don’t affect our role as caregivers, but more likely there are at least some issues that linger. Now the reality check becomes “Are your interacting with your parent based on ‘now’ or ‘then’?”

If there are deep emotional scars from childhood, a caregiver needs to address them, whether it is with the parent they care for or with a professional counselor or pastor. Unfortunately, when many caregivers are thrown into the position by medical crisis and time is already limited, healing relationships often gets put on the back burner. Resentments build and opportunities for healing are lost.

A couple of weeks ago, I did an interview with Denise Brown who does some great work coaching and encouraging caregivers. She’s been presenting a series on forgiveness at http://www.blogtalkradio.com/caregiving. The stories shared are personal from caregivers who have faced struggles because of issues in the past. They’re not how-to’s but real people talking about real hurt they’ve overcome while caregiving. In my interview it was hard to share details about my mother’s alcoholism and how it affected us. But the main point I wanted to make was that caregiving is an opportunity to work through those issues as an adult, not the hurt child, and forge a better bond with someone we love – or want to love in new ways. In our case, somewhere along the way we moved past a lot of the baggage – hers and mine. I learned that the influences affecting the child I was were not the influences on me as an adult. Did they affect me and the person I’ve become? Sure. But did they need to dictate how I functioned while caring for her? No. That was a choice.

Because I was willing to look at it that way, I received an incredible gift – my mother. A series of health crises opened a window that made it possible for my mother to beat the addictions that had controlled her life. She both freed and found herself at age 66. Because she was willing to let me into her life as a caregiver and we looked beyond the past, I had the blessing of being there when she became the Mom to me that I’d always wanted. Though I knew that Mom, for only four years, to me she is still one of the bravest and strongest women I’ve ever known.

The past is only important in what we learn from it and how we choose to let it influence us.

Golden Nugget for the Caregiver: You can choose to check your own emotional baggage at the door, but remember the person you care for may also have theirs. Their baggage is not likely about you, but might affect how they interact with you. By showing them how you leave yours at the door you can help them leave theirs there too!

Writing for Problem Solving, Positivity, and Stress Relief

2011-03-18T13:51:00.000-04:00

Now let’s stretch the journaling idea a bit. Let’s take from the cozy thoughts of recording fun and sacred memories to using it as a tool for reducing stress in the senior/caregiver bond.

Start with a notebook.

Open the page so that there are two 'clean' sheets facing you.

Put the heading, POSITIVE on one page, and write a positive thought.

On the other, write the heading CHALLENGE and list one challenge you face with the person for whom you are providing care. For our purposes today, let's say it's "Mom".

Because communication is the biggest challenge caregivers face, using an 'active' journal can be a tool to address issues of concern while holding on to positive and loving thoughts.

A caregiver or senior can write down issues of concern or frustration, helping to relieve an immediate stress on a paper or in a notebook. It is then shared, so that a conversation over an issue of tension can be started. Set up guidelines for use such as dealing with one issue of concern at a time.

Mom writes in the journal.

Positive Page

Mom to caregiver daughter: I really enjoyed the dinner you brought me yesterday.

Challenge Page

Mom to caregiver daughter: I am always worried we’ll be late to appointments.

Response

Positive Page

Daughter to mother: I'm glad you enjoyed dinner. Maybe we can go out to eat sometime soon.

Challenge Page

Daughter to Mother: It would help us be on time if you could be dressed when I come to pick you up. (Neutral answer, no accusing!)

The scenario above gives the writers a place to address a single issue rather than a growing list of frustrations they may be having. How might the caregiving daughter’s response change if either of the following comments were let in the journal next on the challenge page?

Mom: I can’t get dressed before you get here because I always have trouble with my buttons.

Mom: I’m never sure when you’ll get here.

Immediately, solvable issues come to light without confrontation during the heat of frustration.

Golden Nugget for Caregivers: Taking the journal home before reading it is important. It provides distance from any concerns raised so that tempers don’t flare in defense.

“Writing can pull together information so that you take something that may be stressful and begin to think of it in a new way,” explained Kara Bopp, PhD, a professor of psychology at Wofford College, in Spartanburg, SC, when describing the effectiveness of journaling.

By including a positive comment for every one where you address a challenge, you help retain a balance in communications. Stressed caregivers and seniors both tend to focus on the negatives. By including positives you hold on to the larger perspective of love and care. The positive message can be as simple as an "I love you" or "thank you for being here for me." Sometimes, both the caregiver and senior involved need that reminder. Seniors feeling as if they are a burden often feel unworthy of the love they are receiving when they are cared for. Caregivers often fight feelings of inadequacy and failure when they want to 'fix' situations that cannot be fixed. Getting that reminder of love and care pulls both parties back to the heart of the matter - the love and care in the relationship.

There's a great book out called 14,000 Things to Be Happy About by Barbara Ann Kipfer. If you can't come up with a positive comment for your journal (and let's face it, there are times that is difficult!), consider picking up a copy. If you or your loved one are really stuck in negativity, get a copy and keep it beside your journal. You can also record happy memories in the 'positive' side of your journal.

Journaling can help maintain balance for those giving and receiving care.

Journaling Part 3: Connecting from a Distance

2011-03-15T08:29:00.000-04:00

I’ve been reviewing journaling as a tool for connecting with aging loved ones. But what happens if you live too far away to help start a journaling project and fuel the fires of encouragement to keep it going?

Ideally a senior takes the initiative to start writing on his or her own, recognizing the value his or her stories can have. Some senior activity centers and churches host workshops or writing groups that help encourage seniors and help them feel empowered to start their journey into authorship, improved mental conditions and more positive attitudes about themselves and what they have to offer. But if that isn’t an option in your community or situation, seniors can certainly write independently. Some are great at computer journaling, others don’t want to step foot near a keyboard. Find what encourages the senior you love and care for.

If distance prohibits you and your children from facilitating an ongoing multigenerational journaling exercise here are a few tips:

Journaling by phone can help keep
family connections strong

Phone assignments: You can pick up a copy of a journal with memory triggering prompts. Have your kids call once a week to give “Gramps” his assignment. Ask him to read what he wrote from last week’s assignment. If he’s a computer whiz, let the entries be sent via email or let your kids show you and Gramps how to Skype. (Really, I had my own daughter show me how, so I’m not making fun of anyone here!) Doing the journaling interviews can be done across the miles. Think too, that this could well become a favorite family time, or a sacred time for your kids to have with Gramps while you’re busy getting dinner ready or other tasks.

Call a local church. Talk with the youth minister and see if you can set up a time for some of the youth group members to visit with your parent to record living history and help “Gramps” journal. Even if you aren’t a member of the church, reaching out builds your own support network. Most churches are willing to help community members who aren’t members. If you are not geographically close and setting up a youth interview program for “Gramps” feels like one more task you don’t need on your plate, think a little about the long term impact. In those weekly or monthly visits, “Gramps” is being entertained and he’s giving back to others. It’s also a time you don’t have to fill for him, and therefore may be a break for you, and you know someone is with him for that time period.

Caregiver Gold Nugget: There’s an added plus. Building a relationship with an area church group will also give you another set of objective eyes in case you need to verify concerns you may have. This is particularly helpful when offering care long distance. Perhaps all of a sudden you notice Gramps doesn’t seem to be connecting in conversation the way he used to when you call to check on him. Someone who’s been visiting with him weekly, when perhaps you can only make monthly visits, can offer support for you and give you feedback you may need when you call the doctor with your concern.

Journaling, Part 2: Creating Legacy

2011-03-10T08:42:00.000-05:00

This entry from one of the legacy journals I gave my dad,
tells only a bit of the story. I never heard whether
he got that 1941 Buick convertible.... But I do know
about the littlle red Triumph he zoomed around Paris in!

Writing for legacy

Every senior has a wealth of life experience that should be recorded for the next generation(s) to learn from. For me, reading the entries in my father’s legacy journal in the weeks after he died was bittersweet. I loved seeing his handwriting again and ‘hearing’ him through the words I read, but held in between many of the written lines were the shadows of more stories I knew I’d never hear. So I encourage caregivers and their families to be involved in the journaling process with their loved ones which can make the experience even more meaningful.

For reluctant writers, consider a focused journaling experience. Like a legacy book that guides the writer. Or, create a personal journal that is topic centered. “History Through My Eyes” is a project that can encourage seniors to offer personal insights on historical events that have happened during their lifetimes, leaving an invaluable legacy no history textbook could replace. Granchildren, nieces, nephews, etc, can list things they are studying in school and take turns visiting “gramps” to interview him, writing down his tales or even taking the journaling activity into audio or video format.

A different twist could come with “Technology Through My Eyes.” Now many seniors thrive on microwaveable meals yet were also from the generation insisting that their children stand ten feet away from the ‘contraption’ the first time it was used in their homes. Interviewees can make lists of technological tools they use everyday and record “gramp’s” response to them or his tales about how those albums he plays are really not just giant CD’s.

My, how times have changed…. “Working Man (or Woman)” could detail life lessons learned through the various jobs a senior has held during his or her lifetime. Detailing the kind of work they’ve done, why they took the job, who whey worked with, what insight they gained and life lessons learned can stimulate memories and conversations never before held with family members. This is fun for younger generations too whose modern interpretation of what hard work is may be challenged!

Or think of Money Matters. I often remember my father telling me he could go to the movies and get a pop for 15 cents. Yep, cents. Think of the conversations that could be had when the cost of entertainment, cars, and groceries are shared.

Presenting Gramps with a bound journal (decorated by a grandchild perhaps) with a request for him to fill it may be a great idea, but for Gramps, it may be daunting. Perhaps he’s never been a ‘writer,’ or is insecure about his penmanship, spelling, and grammar and has concerns about who would read what he writes. Or, he may have some physical problems with eyesight or hand-eye coordination that make it difficult.

Getting multiple generations involved in the project can be the key to success. But what if Gramps doesn’t live nearby? What if time is a factor?

Next up: I’ll share some tips for expanding your caregiving team so that such activities are possible, even if you, the primary caregiver, can’t lead the effort.

Journaling, Part 1: A Multi-Use Tool for Engaging the Minds and Hearts of Seniors, their Caregivers and Family

2011-03-08T10:53:00.000-05:00

Catch precious memories on paper
before they disappear.

Though a picture can be worth a thousand words, a word can bring forth a multitude of memories no camera ever captured. One memory shines mental light on others, as the sun captures the sparkle of dew drops on a spider’s web.

Writing has been proven to be a valuable tool for seniors, their caregivers and family members - it's a way to catch those dew drops before they disappear. Whether in a group setting, such as a therapeutic class, with a journal sitting beside a favorite chair, or through a wide-eyed grandchild taking notes as tales are told, the written word unlocks doors to the past, engages the mind in the present, and leaves a legacy for the future.

“In

America

, we have focused on keeping our bodies healthy, but not our minds. Thinking in new and different ways is what we look at for with a quality brain workout. Writing provides that,” explains Kara Bopp, PhD, a professor of psychology at Wofford College, in Spartanburg, SC.

Bopp is co-creator, with writer Jeremy Jones, of the Living Words Program (www.LivingWordsProgram.org) designed to use creative writing as a tool for stimulating seniors mentally and socially.

Writing to stimulate the mind and spirit

In group workshops, Bopp and Jones have guided seniors through their fear of a blank page to a believing in themselves (self-efficacy). Her program has proven beneficial for seniors at varying ages and those with early onset Alzheimer’s. In group settings, certain writing prompts then become tools for socialization when seniors start to share their stories with others.

Many senior activities, designed to create social connections, encourage fairly superficial types of interaction. Writing takes these relationships further, where memories and ideas attached to heartstrings often emerge and become celebrated among peers.

Bopp also explains that when seniors experience success with their own written words, they take that positive feeling home and often seek to duplicate it in other environments.

Though admittedly not all memories written are meant to be shared, writing then becomes a tool. Writing is a tool can be used in numerous ways – whether stimulating the mind and memory, relieving stress, or creating a legacy, we’ll look at them together in this post series.

Resources:

Exploring Our Lives: A Writing Handbook for Senior Adults by Francis E. Kazemak

A Mother's Legacy Journal: A Family Treasure for Your Children by J. Countryman (Hardcover - Apr. 15, 2004) - Bargain Price

A Father's Legacy: Your LIfe Story in Your Own Words by Jack Countryman and Terri Gibbs

Personal Note: Several legacy style guided journals are available including ones to encourage a ‘grandparent’ perspective. When my father died, I discovered the copy of A Father’s Legacy (referenced above) that I’d given him several years earlier. I was able to make copies of what he’d written for all of his grandchildren- a priceless legacy he left for us all.

Moving May be a Necessity When Seeking Quality Care

2011-03-03T10:46:00.000-05:00

Your widowed mother has had a fall in her home. Her hospital stay is nearing an end with therapy needed. You're bombarded by decisions that need to be made. With the help of the hospital discharge planner, you select a skilled care facility that you feel will be the best placement for Mom until she can return home. She is moved and care begins with physical rehabilitation. But soon you realize that the situation is not ideal. What comes next?

A move may be necessary if a rehabilitation
placement is not meeting the patients' needs.

Decisions for recuperative and rehabilitative care are made quickly and are based as much on bed availability or cost as any other qualification. This is a point of great anxiety for caregivers and their loved ones. All want to make the best decision, but time is often a factor that limits our ability to 1- feel comfortable with the decision and 2- ensure that the placement is truly the best option.

What may well be 'the best placement option at the time' may not be the best placement for the entire time that recouperative or rehabilitation is necessary. Caregivers often feel that they have no other options, or, likely exhausted emotionally and physically by the recent ordeal they have shared with their loved one, are resistant to accept that a change is needed.

This becomes complicated further when a parent complains about the care being offered. Those complaints may be grounded in truth or the overwhelming desire to 'go home.' This only magnifies the stress on a caregiver who is trying to discern the reality of the situation.

To take some of the emotion out of your re-evaluation of a care plan for your loved one, try asking yourself some questions that will help you see objectively if Mom's placement is really the best for her and if a change or move is needed.

1. Is she being encouraged to help herself to the extent of her abilities?
2. Is she feeling supported by the staff? Are there any signs that she is not being respected as a person.
(negative comments from staff?)
3. Is she being kept clean?
4. Is therapy being received at the designated times and for the length of time recommended by the doctors?
Is she or are you being given progress updates?
5. Is the staff available to speak with you and answer questions? (Keep in mind, that it's always better to ask for an appointment when your questions may require time to research the answers (ie- look extensively through charts))
6. Can you 'pop in' to see that the care offered your mother is consistent? Do this, to make sure that the level of care does not change during the course of the day.
7. Are all safety measures being used consistently?

If you feel that these issues are not being addressed, it may be time for a move. First, take your concerns to the staff of the current facility. If they are not addressed or answered to your satisfaction, realize that you and your parent have the right to seek care elsewhere. It does involve work, but can be done. You may have to approve the change through insurance or may need to be willing to pay more out of pocket in a different placement. Research is important. Talk with your mother's doctor or call the hospital's discharge planner back to ask for a list of other potential facilities for care. Ask for recommendations based on experiences they've had with other patients. Visit the facilities you are considering for a new placement. While the current placement may not be ideal, it may fit the need to give you enough time to make sure that any change made will actually be an improvement.

Remember that care choices are just that, choices. You (and your loved one) have the right to make the choices that best meet your needs.

Goal Setting for the Dying – and the Living

2011-03-01T09:33:00.000-05:00

Ryan Jorgensen | Dreamstime.com

Being a cheerleader lets joy
be a part of life's finish line.

I intentionally left “the rest of the story” out of my last post. Recall the dying man given perhaps days to live. His family gathered, arrangements made and the goodbyes prepared for. Days passed…. No death. The son who lived several hours away had to return home. This brings up an eternal mystery of life and death - time.

The doctors gave the family a picture of what to expect as the pancreatic cancer overcame their loved one. As the father moved through the stages, the family gained comfort from what seemed the ‘normal’ progression. But what didn’t fit ‘normal’ was the time frame of his actual passing.

The will to live is a powerful influence for all ages, yet its mystery is often most evident in those who are facing their last days. The man given ‘days,’ lived weeks longer than anyone expected. Diagnosed in October, the family had their most meaningful Thanksgiving together… and Christmas. The man’s daughter said that toward the end, he would ask, “Is it Christmas yet?” Clearly, he had a goal.

Sometimes when we know about a person’s goal we can become a part of the joy in reaching it. We do that every day with those close to us. We encourage our children, spouse, and friends to tackle new challenges and reap the rewards. It doesn’t matter what the goal may be, we’re there to encourage. As caregivers, when a loved one has a goal for the end of their lives, the encouragement is much more difficult. We don’t want them to reach that goal. Their goal means our loss. So what is a caregiver to do?

Embrace your loved one’s goal. If it’s “make it through one more Christmas,” try putting some of your anticipatory grief energy into making that celebration the most memorable yet. What are the special memories and traditions that can be revisited? Who else could be brought in to help with the celebration of fully living life? Instead of focusing on this being the ‘last’ holiday or month, or week, look toward making it the best.

When you refocus your energy on the positive, it doesn’t make your sadness or grief disappear. But it gives you something more positive to direct your mental and emotional energy toward. The thoughts of ‘lasts’ will come, as will tears along the way, but by focusing on increasing the quality of the time, when the end does come, you have an extra bit of grace for your own grieving process. You’ll know you did all you could to make the finish line spectacular. You cheered and provided the support needed to give your loved one that sense of pride in reaching a goal. You've given that person a gift by sharing their goal. You are not cheering your loved one toward death, you’re cheering on your loved one’s desire to make the most of every moment of living.

Time Perspectives for Long Distance Caregivers

2011-02-23T09:07:00.001-05:00

We all tend to have a love-hate relationship with time which is only magnified while caregiving. Add miles to the equation and heartache often results.

Time doesn't change... nor does its
challenge to caregivers...

In talking to a young woman who recently lost her father, she noted one particular issue that caught my attention– the effect of the time factor for long distance caregivers during a crisis.

This woman's father had been diagnosed with pancreatic cancer.A month earlier, he’d had a full checkup, receiving a clean bill of health given his age and previous health challenges. The new diagnosis surprised everyone. The disease was moving swiftly. After all his doctors consulted, they advised the man’s wife to call the children. This was only days after he woke up ‘not feeling quite right.’The daughter lived nearby but the son lived hours away. The family gathered and the news was shared.

With the doctors giving him perhaps only days to live, his family felt they had literally one business day to get his affairs in order. The dying man was able to give his family direction in how he wanted things handled, including what casket he’d like, and what details needed to be in his will. Trudging through their shock and grief they did it all – in one day. The son stayed on, waiting. He stayed, and stayed, and stayed. Eventually he was put into a situation no one wants to deal with. He had to return to work and his life hours down the highway, knowing he might not see his father again.

Miles add to caregiver stress.

This is an awful issue that many caregivers face. There seems to be no right course of action. I’ve talked to many who have provided care for loved ones at a distance who have shared the pain of guilt magnifies every emotion involved. Here are a few steps to take to help relieve some of the pressure:

1. Talk it out: When life is ending or health challenges make you feel that you might miss your chance to say something important, don’t wait. Say what needs to be said. Leaving issues unresolved increases stress and makes grieving more difficult. If you are fearful that bringing up a sensitive topic might upset your loved one, realize that it might be on his/her mind too. Or, once you’ve cleared the air, you can tell them how much it meant to you to be able to do that. That in turn, gives them a valuable sense of peace.

2. Admit it: Admit to your self that it hurts to be in this position. Sometimes admitting the pain that you feel as a caregiver relieves pressure. Too often, caregivers paste that smile of “all is fine” over their inner turmoil and push their feelings aside. Those feelings only fester – let them out.

3. Stay connected: When you have to leave your loved one, make sure you feel as comfortable as you can about your ability to stay in the information loop. Talk to the others involved in care to set up your lines of communication. Perhaps now is time to add that texting or email plan to your cell service so you can get updates more regularly than you’d have time to otherwise. You can always cancel it later if needed, but the extra money spent in the short term may buy you a sense of security that will help you cope.

4. Create your safety net: Long distance caregivers need a support system too. You need your boss and friends to know what you’re going through and be ready to help when time comes. Knowing that key people in your life are on alert to support you when you get “the call” brings peace of mind.Whether it is setting up a work-from-the-road or a leave time flexibility plan with your boss, or backups for your carpool duty, give yourself the support you need to be the caregiver you want to be.

We can’t change time, and in crisis situations we can’t do much about the miles between us and our loved ones, but relief from pressure, guilt, and anxiety can be part of your plan as a long distance caregiver.

Determining Your Own Climate of Care

2011-02-18T12:43:00.000-05:00

After posting for several weeks on legal issues, let's take a look at just our basic thought processes related to caregiving. I recently read the following:

There are only four types of people:

Those who have been caregivers.

Those who are caregivers.

Those who will be caregivers.

Those who will need caregivers.

When many people first begin to realize the truth of this concept, their minds often cloud with fear. But taking some time to let your mind wander through the clouds empowers you to determine the climate you'll face in the future.

Spending some time in the clouds helps you choose
your own climate of care.

Former Caregivers: Sometimes caregivers push aside the memory of the challenges they've faced and forget to use what we've learned to prepare for their own future or to help others. When you share your experiences with others, you encourage them in their journey. When you take the knowledge you've gained while being a caregiver and apply it to your own life and planning for the future, you gain a valuable sense of security. I've been through caregiving and I know I'll go through it again. That's another nugget for you. Been there, done that, doesn't mean you won't go there again!

In YOUR Future: I'm always thrilled when fully independent seniors pick up When Your Aging Parent Needs Care for the purpose of reading it and sharing the the topics in the book with their adult children. They're being proactive. They realize the truth that one day they will need support. Is it always easy to come to that conclusion? No. The idea that "growing old ain't for sissies" is true. But understanding that aging is not something that can be avoided, and planning accordingly, is smart.
It doesn't matter if you're 20, 50, or 80. You know how you want to be treated and how, if you ever need help, you'd want that help to be offered. Let someone know. If you see your grandparents facing safety issues in the home and wondering why they don't move to a smaller place or a retirement community, mentioning that to your husband might bring up a discussion of facility care you might need one day. Then the discussion about long-term care insurance might. If you decide that might be your best option, knowing that rates for long-term care insurance are much lower the younger you sign up might save you a bundle in the long run.

Current Caregivers: If you are a caregiver, don't forget to pat yourself on the back. No human being, let alone any caregiver, is perfect. Along the road you're traveling, you'll face doubt, fear, and insecurity. Are you making the best decisions possible? Questioning oneself is normal, but requires perspective. At any point of decision making, gather the information you can and once a decision is made, give yourself credit for having made the best decision you can based on all the information available to you at the time. The old adage "hindsight is 20/20" often haunts caregivers who refuse to give themselves credit for doing the best they can. Take heart, doing the best you can is all you have, and it is enough.

Future Caregivers: What if it suddenly dawns on you that caregiving duties will be yours one day? In contrast to proactive seniors, I often hear from people in their 30's, 40's, and 50's who say "Oh, my parents are just fine. I'm glad we don't have to deal with that." But ask yourself.... What will your role be if you get a call in the middle of the night that Mom or Dad has had a stroke? Are you, your siblings, your spouse(s) prepared? A few conversations held in non-crisis moments bring peace of mind to all who may one day take a primary or supporting role as caregivers.

Take the lessons you've learned through the tough times, facing the fears, and clouds of doubt. Remix them into a picture of a care climate you can live with peacefully. When you do, there may be many days of sunshine ahead, even when crises do arise.

The Will: Part 6 - The final chapter – when seasons change!

2011-02-15T10:08:00.001-05:00

If posting six times on the topic of legalities doesn’t drive home the point that these issues are important for everyone, please reread the posts!

Winter will turn into Spring
- change is constant

photo by David Loudon
Morguefile.com

For those of you who have addressed these issues in your lives and the lives of those you care for, here’s a final nugget for you. Change happens. Isn’t change one of the true constants in our lives? When dealing with legal issues, many seniors and/or their caregivers want to have the conversations, handle the legalities, and tuck those documents away never to see again until the unfortunate day of need. However, be aware that change does happen. When the seasons in our lives change, it's important to check to see if our legal documents need updating. If a person has been named executor of a will but discovers that work will take them out of the country for several years, you may need to make an adjustment. Or, what if an adult child’s life situation changes and he or she is not in the position to handle your affairs the way you’d like them to? In many cases, attorneys will guide their clients to have a primary person named as their legal voice (whether for powers of attorney or wills) and then have a second person named in case the first is unable to fulfill the duties.If that’s the case, remember that everyone involved should know that they’re involved, even if on the ‘second string’ of players, and know the details of how and when the players step onto the playing field.

A person’s wishes for bequests may change. If a separate list of bequests is made, it can be updated. If those bequests are specifically stated in the will, they cannot be changed unless the will is updated.

Remember that change affects even our legalities but by planning ahead, the effects of change on our comfort and security level should be minimal.

The WILL - Part 5: Are you de-valuing your greatest asset?

2011-02-11T17:27:00.000-05:00

The average person de-values their
greatest asset ...

One of the biggest misconceptions about handling legalities, particularly when it comes to wills, is our perception of ourselves and our assets. As mentioned in Part 1 of this series, changing perspective can make a difference.

I spoke with a delightful woman yesterday who said, yes, she'd heard everyone needs a will, but she never felt she had anything of value that needed the kind of protection a will offered. Though I was saddened by her response, I realized she needed that change in perspective. So I asked a few questions:

Did she own a home? No.
Did she own a car? One that wasn't paid for.
Did she have personal items that she would like to know someone would one cherish as a memory of her when she was gone? Yes, she might, but they weren't worth much.

In her mind, 'worth' was measured in dollars and cents. But the reality is that her will, and the act of giving authority to someone to handle things like closing out the payments on that car, is an asset worth protecting.
Might she like someone in her family to have the option to take over payments on that car?
Did she have any personal items that she wanted to share with her loved ones?
Who would make sure that happened?

As we spoke, she realized that her "life treasure" was not any one item or her perception of wealth, but the ability to control what she did have.
I asked her if there was someone in her life who would appreciated the honor of being asked to be the person to settle her affairs, to make sure those personal items found their new homes.
Immediately she started nodding her head.
One child would want that.
Even though this woman did not feel she had things of value, she began to change her perspective. Someone would need to handle her personal belongings when she was gone. Giving that control to someone is an asset worth protecting and a gift to the person who receives it. It says, I respect you and trust you with what I have. Thank you for being that person to me.
So who will you give that gift to? It's your priceless life treasure - worth protecting by having a will.

The Will, Part 4: What to do when there are no family members to support your legal wishes.

2011-02-08T09:34:00.000-05:00

Trust is the key element when
deciding who should handle your
legal affairs.

It’s sad but true that there are many people who have no one who is a significant part of their lives to take care of legal issues. But that doesn’t mean that assets and the power to make decisions should just be left to the doctor in charge, a court officer, or the fine print in the bank’s policy. There may be friends or extended family willing to lend a hand with legalities.

If you’re having trouble determining the right person to help you, ask yourself these questions:

Who would visit me, or who would I want to visit me, if I were ever hospitalized?
If I had an emergency in my home, who would I call?
If I needed to get a ride somewhere, who would I call?

Next, see if the people who come to mind, whether related by blood or not, are those you really trust to make decisions for your best interests, and if they are in a position to be of help if a need arises. A relative with shady business dealings is unlikely to be the best choice. An adult child with substance abuse issues may not be the best choice. A relative living a distance away without the means to travel in case of an emergency would not be the best choice either. An older relative with their own serious health issues may also not be the best choice.

Friends or church members/staff can fill these needs when there is no spouse, significant other, or family around, or when the family dynamics are such that there is no family member in a position to fill the need. You may find you need more than one person – one to handle your financial affairs, another your healthcare issues.

How to approach another person to handle your legal affairs?

Simply ask.

Explain the need and your desire to make sure your wishes are honored.
Explain what your wishes are in specific circumstances.
For financial issues: make sure that person knows that if they agree to be your financial back-up, that you’ll review with them where the account information, checkbooks, and your wallet are generally kept.
For healthcare issues: The Five Wishes program at www.agingwithdignity is one that is great for reviewing potential end-of-life decision making situations and helps guide a person with this process. Let the person you have chosen know who your primary care doctors are or where you keep this information listed. Hospitals may not be able to find records they need to help with emergency care if they do not know the name of the doctors to contact for records. Your healthcare representative can help with information flow in a time of need.
Explain what legalities are involved.
Explain any unusual or uncomfortable family dynamics that may be involved.
Give the person time to think and consider.
Once a decision is made, take care of the legalities. If you can, have that person come with you to handle things legally so they know where you handle your business and where you’ll be storing your documents. (See The Will – Part 3)

Make sure that those people you are close to, but who may not have been selected as the legal representative, do know who will have your legal authority if a crisis occurs. Make sure to let church staff and your primary care physician know who you’ve designated as your legal representative in time of need, too.

Lastly, relax. Once you have own support team in place, regardless of their blood relationship to you, you know that your wishes will be supported even if you can’t tell others what they are. That’s peace of mind.

The Will - Part 3 - Storing Legal Documents

2011-02-04T10:42:00.000-05:00

A Will, Heathcare Power of Attorney (Proxy), and (Durable) Power of Attorney do no good if they can’t be found at the time of need. Even caregivers who have been handling their loved ones affairs for some time may not remember where these important documents are because they generally are not referred to unless there is a crisis - out of sight, out of mind.

Attorneys will retain copies of client’s files for many years, but check with yours and your state regulations to find out for sure. But what if that attorney dies, or moves, or closes his or her business? What if the caregiver doesn’t even know the attorney’s name their parent used decades ago in another city or state?

Keeping up with legal documents is important whether they are your own, or belong to someone you care for. Knowing they are in a file ‘somewhere’ doesn’t get the job done either.

The bank safety deposit boxes have regulations about who has access to a box and when. In some states, at time of death, a safety deposit becomes part of an estate and cannot be opened until ownership or legal rights of access to the box can be proven. If the box is co-rented, the other renter would likely have access, but only during banking hours. What if you need that healthcare power of attorney when there’s been an accident and it’s the middle of the night?

Consider the following:

Having a fire proof safety box for storage in the home is a good resource. Still put documents in a plastic bag to protect from water damage. These come in various sizes, from small suitcase style boxes to large safes. Determine what works for you and keep it safely stored.
Have all legal documents in one place and tell the people who need to know where the key is kept.
Have copies made of the Healthcare Power of Attorney (Proxy) and have them notarized.

· Give a copy to family members who are authorized by the HPOA to make decisions.

· Take a copy with you when traveling. *

· Have a copy in the glove box of your car. *

*it is not a good idea to do this with your (Durable) Power of Attorney which authorizes control over financial issues.

Specifically for the Caregiver: While you’re supporting someone else’s will for their life and legal affairs, take time to do it for yourself! Handle these matters before a need arises and you’ll have peace of mind.

The WILL - Part 2: Preparation Saves Headaches and Heartaches

2011-02-01T10:30:00.003-05:00

You walk into an elegant room and sit down. A tall graceful gentleman approaches the podium in front of the gathered group of people. “I hereby begin the reading of the Last Will and Testament of….”

Folks, that’s a movie scene. It isn’t real life. When death occurs, one person, the executor, has to handle property distribution. The probate court in the county must be notified of a death and the existence of a will within a specific amount of time. Unless you’ve dealt with this before, and most of us haven’t, it’s a logistical nightmare at a time when grief impacts everyday activities.

Talk to your loved ones about the wishes for their personal property before the need arises. Save headaches and heartaches. Some things can be handled before a death occurs, thus saving estate taxes and other expenses. If Grandma wants her cabin to go to Uncle Joe, transferring the title to him now, or putting both their names on it, may save Uncle Joe some hassles down the road and help Grandma feel that all is taken care of. You may discover that an attorney will be needed to help handle things.

But what if there isn’t a lot of property? A list is still helpful, even if there isn’t much to put on it. Think of wedding rings and jewelry, family photos, furniture, and other items that will need a new home one day- it may even be the family cat.

A list of ‘bequests’ helps both of you. It is proof, when it is time to distribute property, that it isn't not your decision but your deceased loved one’s decision about who gets what. Probate officers may need to see that list and may have paperwork for the executor to make sure those assets are distributed. A list is most helpful when there are difficult family dynamics. Lists can be changed, but someone should know where the most updated one is located, even if they are not told what is on the list.

One family would occasionally take out a permanent marker during family gatherings. The parents would think of an item that would one day need to be passed on and together they would decide who wrote their name on the object. When those parents moved to a new home, one daughter asked if she could write her name on the wall. It was a joke, but when the parents pass, there will be no question of where the family items are to go and all are aware.

Now that you’re thinking, start doing: if you’re a primary caregiver and know you are the executor of your loved one’s estate, go ahead and check out the current probate rules for the county in which your loved lives, or ask them to check into it. By knowing what your loved one wants, and taking steps to ensure that those goals can be met, you’re providing peace of mind for both of you.

The WILL part I - Are you Gambling?

2011-01-28T14:27:00.001-05:00

Most people would not think they are gambling by doing nothing, but when you do nothing about having a will made, you certainly are. Caregivers are often the first to realize this need as they helped loved ones put their affairs in order.

What is a will? According to good ol’ Mr. Webster it’s an act of your wish, desire, or longing. It is of course also a “legal statement of a person’s wishes concerning the disposal of his property after death.” But better still is the definition offered by Attorney Art McQueen. “A will is simply the certificate of title – for your life,” he explained. No one would work hard to earn the money to purchase a car without being sure to get the title to it. So why would we put off getting the title for all we’ve worked hard for our lives?

This is a wonderful example of perspective. Ask someone if they’ve had their will made and you’re likely to get a gruff answer, if any. Death is a topic no one wants to talk about because most associate wills with dying. It’s a natural response given our society’s incredible drive to hide from the reality of our own mortality. But taking care of business is a part of everyday life. We know that if we don’t pay the power bill, eventually, our lights won’t turn on. If we don’t get our legal affairs in order, we lose control of them.

Caregivers often have a hard time getting their loved ones to face their own mortality and deal with legal issues such as will making, end-of-life care issues, and money management. Putting these issues into an unexpected perspective may be just the fresh approach needed to get the job done.

So what does this certificate of title relate to? It really depends on the person. That is why legal counsel is important. Attorneys will often offer a free consultation which may be what your aging parent needs to feel comfortable about starting this process.

Having trouble getting that parent in the door of the attorney’s office? Here are some tips:

Focus on one issue, the will – let the attorney discuss related concerns like powers of attorney and health care proxies. Bringing up too many legalities at once can feel like an attack to a person who already knows and doesn't want to admit that there are important issues they've neglected.
Don’t press to be involved – a parent might not want to discuss these issues with children until after a consultation or after the legalities are finalized.
Suggest non-family involvement – Encourage your parent to talk to others for attorney recommendations. This may open the door for your parent to ask questions that he or she might not feel comfortable asking you.
Provide resources – find articles about will making that you feel would be helpful and leave them with a parent with a gentle reminder that you hope they’ll look into this
Make sure your parent understands your motives. It’s not about you, it’s about your parent’s wishes. You cannot honor their wishes if you don't know them and have the legal support you need to ensure those wishes are met. Even if you, the primary caregiver, is not the executor of the will, you can offer assurance of your desire to support whatever your parent's wishes will be.

In the long term, taking care of business for one, gives peace of mind for all. Perspective can make all the difference.

Caregivers, while you're at it, check into your own will - it's never to early to get the certificate of title for your life too!

Long Distance Caregiving: How To Be There – When You Can’t

2011-01-25T11:11:00.000-05:00

What do CD players, travel pillows, cell phones and zany socks have in common? They're little ways you can have a big impact on a loved one who lives far away.

In our mobile society, it isn’t uncommon for caring family members and friends to live away from aging loved ones. So what happens when an illness strikes, there’s a hospitalization, or a complete transition in living circumstance? There are many ways to keep the connection of love and care strong, even if you can’t be on site to offer help and comfort. Here are some examples that can be used for distant caregivers as well as those nearby:

Comfort Care: We send care packages to our college kids and military personnel, but we can also send them for our aging loved ones who live away and may be facing challenging times. Consider a small neck pillow. Those hospital beds rarely feel right and just a little extra cushioning can make a difference. How about warm socks? Most hospitals offer anti-slip socks, but what about sending some in a favorite color, or personality-suited. There’s nothing like Gran being the only one walking the halls with bright red striped no-slip socks or slippers while she’s recuperating. Think of her smile when the nurses all stop to ask her about her fun attire and she can tell them her grand children sent them.

Easy Listening: Dad or Grandma in the hospital? Moving to a new living situation? Make a compilation CD of songs you have enjoyed together. Send or bring an easy-to-use CD player with it. Label the items you send clearly. If you have to, jazz up the CD player to make it easy to use. You can put a green sticker on the PLAY button and a red one on the STOP button to highlight them if vision is an issue. (You can even paint those buttons with nail polish). Send a CD of yourself or your kids reading or telling stories. Many churches will record their weekly sermons. Help make arrangements for those to be delivered. Not into CD's? Send a preloaded MP3 player - just check for ease of use and make sure the earphones are too difficult to manage- specially if hearing aids are involved!

Viewing Pleasure: Send a family DVD. Make a home movie of your well wishes. Have a bunch of old photos? Have them put on a DVD – or send a pre-loaded digital frame. (Again, label it and make sure it’s easy to use.) Send cards and photos - they are looked at over and over again.

Stay Connected: Send a phone. Many times during transitional care, phones are a problem. If you can send an inexpensive (and easy to use) phone with important numbers pre-programmed, you send more then the phone. You leave the message that you want to stay connected and you may relieve a concern for an on-site caregiver who is busy handling a hundred other details of care.

Caring for the Caregiver: With all these suggestions, make sure to run them past any on-site primary caregiver first to eliminate duplication. And while you’re at it, send that primary caregiver a thank you note and a gift card to his or her favorite coffee shop. It’s always great to feel appreciated!

The Power of a Bucket List

2011-01-21T09:42:00.002-05:00

Morgan Freeman and Jack Nicholson
The Bucket List
Warner Brothers, 2007

To me, any movie with Morgan Freeman and/or Jack Nicholson in it will be worth the price of going to the theater. A definite must-see is when the two joined forces for the movie The Bucket List, which came out in 2007. It’s a great movie to watch for people of any age, but I highly recommend it for caregivers and their aging loved ones. The movie has so many poignant and valuable lessons for living life to the fullest, letting go, not giving up, and making moments count.

I consistently encourage caregivers and seniors to make space in the busy-ness of daily life, health challenges, and caregiving to have those powerful moments and fully participate in them. Sit down with your loved one(s) and watch the movie. Laugh with it, cry with it, and let it have an impact. Whether you then work on writing a bucket list or simply joke about “hey, we need to put that on our bucket list,” it’s a tool for dreaming and remaining hopeful about the potential life has to offer. It’s a connection.

Does the bucket list include things that seem totally out of reach? Is Mom living in an assisted living facility and in a wheelchair with limited finances? Well, that cruise around the world on her list might not be possible. That’s okay. Use the bucket list to help you envision what IS possible. It may be a trip to the local water park during their ‘off’ hours can be arranged so she can dip her feet into the wave pool and hear the water will be all you can manage. Or, gather travel videos from the local library and have an in-home cruise around the world. Involved the kids and grandkids... fun for all. Even when you have to make adjustments to the origianal dream, the effort you’ve made will be appreciated and the memory of experience will last long after Mom is gone.

When my mother wanted to take a trip to somewhere she’d never been to celebrate turning 70, she’d already lost most of her vision and needed at least a cane, sometimes a rolling walker to help her get around. Hawaii and Aruba were both destinations on her mental bucket list. Thankfully she had the money to travel, yet the decision was made for Aruba because none of us felt that her body would do well with the long flight to Hawaii. Though she didn’t say she’d never go to Hawaii, she made the choice that would be a best fit for the time. Did we all know that she’d likely never go to Hawaii? Yes. Did we have to say it or make a big deal of it? No. A bucket list is, in its simplest form, a tool for communication. At its most complex, it’s a to-do list for an already overtaxed caregiver. What perception you choose to have of it is yours, but it’s a valuable tool to consider.

Connecting with others: If you visit the movie website at http://thebucketlist.warnerbros.com/ there are lots of photos, great music, and even information about creating a bucket list on Facebook that can be shared!