Friday, April 29, 2011

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

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?

Wednesday, April 27, 2011

Brava to Woman's Day Caregiver Guide

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.

Friday, April 22, 2011

Recruiting Help During Family Celebrations Noursishes Caregiver Spirit

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 ( 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.  

Tuesday, April 19, 2011

Cash in the Attic – with a Twist: Money Management

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.

Friday, April 15, 2011

Tips for Communicating About Tough Topics

 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.

Wednesday, April 13, 2011

Pack Differently on your next Caregiver Adventure

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

Friday, April 8, 2011

Mission Possible Part 2 - Ways to Encourage Those Receiving Care

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 90th 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?....

Wednesday, April 6, 2011

Mission Possible Part I - Finding Your Motivation as a Caregiver

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.