Thursday, July 26, 2012

Caring for the Caregiver, Part 1 - The Ripple Effect

On Tuesday, July  31st  at 5:30 PM,  I’ll be sharing the message “Caring for the Caregiver - Even When that’s Yourself” at the Rosecrest Community in Inman, SC.  The topic is part of a free series of seminars offered to help caregivers.  I’m proud to be a part of it. Thankfully, there is a growing trend for support for caregivers, but I do feel we’re far from where we could be as a society and nation in response to the tremendous numbers of caregivers, most of whom are unpaid family members who juggle much more than their role as a caregiver.

Let’s look at the three topics offered in this one series to see how we can broaden our own approach to supporting caregivers in our lives. Any health concern is like the pebble tossed into a pond.  The effect ripples outward.

The first session was Dementia and Its Impact.  Any diagnosable disease has an impact far beyond that for the patient alone.  Let’s look at who might be involved and what their needs might be.  A patient can use this as a guide for interacting others or others can use it as a guide for developing their thoughts in how to support those in their lives dealing with these issues.  For each of these categories guide your thoughts will a simple fill in the blank.   If I were the  A of a person diagnosed with  B, I would need/want _____. 

A1. spouse                               B1.  dementia               
A2. child (adult or youth)           B2.  cancer (seemingly treatable)
A3. only child                           B3.  cancer (untreatable)
A4. grandchild                          B4.  diabetes
A5. extended family member      B5.  Heart disease/heart attack
A6. employer                            B6.  Stroke
A7. employee

Is it selfish to look at the needs of those who aren’t the person diagnosed?  No, it’s realistic. When the whole picture of a person’s life, related to his/her diagnosis of a disease, is looked at and addressed, the patient can receive better care and support.  Fears can be relieved and quality of life improved.

Example 1:   An elderly widower has just found out he has seemingly treatable cancer. His only child (with a husband, two kids and a full time job) lives 100 miles away.

If you are that adult ­child, you might want reassurance that you can help meet your parent’s needs while still meeting the needs of your household family. Dad, or his adult child, or the medical care team can take that reality into consideration when moving forward in developing a care plan.  The child wants to help but is geographically limited.  What resources are available for providing necessary care?  

Walking through these scenarios and life realities ahead of time are much better than the alternative:  the pain and confusion of finding out out six months (after Dad’s been diagnosed) later when a call comes from Dad’s neighbor saying he’s been hospitalized with a side effect for a treatment you didn’t know he was having for a disease you didn’t know he had. Likely, he didn’t want to ‘worry’ or ‘bother’ you. But now, trying to juggle your love and concern with the class projects, carpool, and work deadline, you’re scrambling to breathe and find a direction. 

If you put yourself into the roles and circumstances listed above, you’ll gain an awareness of your own life and how health issues can cause a great impact but you can also see how you may be a caregiver in ways you wouldn’t expect.

Example 2:  If you were the employer of a person just diagnosed with diabetes, you’d need to know how it would affect his/her performance.

You run a fairly small company with 40 employees.  You find out that your sales manager has diabetes and only came to know it after a weekend visit to an ER.  You want 1- to know how to help keep him healthy and on the job, and 2- to support him and his family, and 3 - how to keep your insurance premiums to a minimum, and 4- how to keep sales moving forward.

Don’t worry, I’m not that na├»ve. I know there are lots of companies where it’s only #3 & #4  that matter to those in charge. But really, the employer is a form of a caregiver because it’s he or she who controls the job that provides your health insurance and the food for your table.  Even though detached from the hands on care of taking you to appointments or picking up your prescriptions, he or she is giving care.  If you’re the patient, ask the questions to answer your boss’s questions.  If you’re the employer, take time to try to see a situation from your employee’s perspective and look at more than a bottom line.  By doing so, you might just come up with broader perspectives and plans that help your whole company thrive (flex time options, cross training programs, etc). 

Many people are involved when a health threatening diagnosis is made. By putting on the shoes other people will wear in the midst of a health care crisis, or trying on ones you might one day wear, you're better prepared to meet the road of life ahead. 

We’ll talk about Caring for the Caregiver more on Tuesday night and I’ll follow up with a post that highlights tips for lightening the load for others - or yourself!

Friday, February 17, 2012

What you Learn Makes a Difference - a followup post

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.

Wednesday, February 15, 2012

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

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. 

Thursday, January 5, 2012

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

 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! 

Tuesday, January 3, 2012

New Year, New You

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. 

  1. 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.
  1. 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.
  1. 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.
  1. 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.
  1. 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.