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alzheimers, caregiver burnout, caregiver stress, caregiver tips, caregiving, dementia, mara botonis, when caring takes courage
I’m extremely pleased to bring you a 3-part series entitled The Dangerous Dance with Stress and Guilt, by Mara Botonis. Mara is the author of “When Caring Takes Courage”, available on amazon.com. She is also the founder of Biography Based Care and is a strong proponent of person-centered care. You can learn more about her work at http://biographybasedcare.com
In Part 1 of the series, Mara shares some surprisingly simple ideas for managing stress. The beauty of these tips is that they don’t require you to leave your house, ask anyone else for help, or spend any money.
Caregiver Coping Strategies Part 1 of 3: Managing Stress in Minutes
by Mara Botonis
We’ve all heard the numbers, we live them. We know that according the Alzheimer’s Association’s latest Facts and Figures Report (2014), nearly 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias.
We’ve also learned and live the impact of providing that care. The Facts and Figures Report shares that “due to the physical and emotional burden of caregiving, Alzheimer’s and dementia caregivers had $9.3 billion in additional health care costs of their own and nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high, and more than one-third report symptoms of depression.”
Few realize the day to day reality of caring for someone with Alzheimer’s and dementia and as a result, the suggestions of well-meaning friends and family can sometimes leave us feeling more alone than ever. I don’t know how many times I’ve heard someone suggest to an at-home Alzheimer’s caregiver that they go “take a break” or “get out of the house” and see a movie, get a pedicure or massage. I want to pull this person aside and give them an “instant in-service” on what it means to care for someone that may require such close supervision that you wash your hair only once a week because you feel you can’t risk being in the shower that long. I want them to know what it feels like to jump out of a deep sleep at every little noise because it might mean someone you love is getting into something dangerous or trying to get out of the house. I want to tell them that in later stages of the disease, a person with Alzheimer’s or dementia can require even more supervision around the clock than a newborn baby, because someone with Alzheimer’s is far more mobile and capable of finding trouble without even trying than a little one is in their first few months on earth.
So the question then becomes how can we manage the stress of caregiving? How can we manage it in a way than fits into the reality of our day? How can we make stress relief a more accessible activity that fits into what little free time we have, doesn’t require the participation of others to “cover” care for us and yet still is effective enough to make a difference?
I wholeheartedly believe that caregivers need and should get a more extended break for hours or days, a few weeks if possible each year, not only for their own health, but also to support them in being better caregivers. I have a whole chapter in my book, “When Caring Takes Courage” that talks about Adult Day Care, Respite or Short Term Stay, Home Health Care and other programs to help caregivers access to quality Alzheimer’s care for their loved one when needed. We know from experience that the kinds of breaks described above are not always possible.
Below are some of the most popular and practical ideas I discovered from other caregivers while doing research for the book. What I liked best about the ideas listed below is that they don’t require you to go anywhere, buy anything or ask anyone else for help, because sometimes these actions are not an option.
1) Be OK with doing something for you. It is NOT self-indulgent to take a few minutes for yourself. You are the only one that will make sure that it happens and if you don’t think you’re worth it, it will never happen. So first things first, give yourself permission to do something that is just for you.
2) If you can record and watch favorite TV shows or movies while your loved one is napping or sleeping, great. If not, have your favorite music ready to go for situations where you only have enough time to listen to a favorite song. We can all find just a few minutes, so make them count. Pick songs that bring back memories for you of favorite people, places and times in your life.
3) Quit “saving” the “good stuff” for guests. We all have the good dishes, guest towels, pretty soaps and sheets. Things that we erroneously think are too good for us to use. Quit it! Stop saving these household treasures for times when others are visiting and enjoy them yourself. I caught myself dusting the good candles because I had had them so long without ever lighting them that they were starting to fade in color and scent. I finally (and safely) chose a time and place to let myself experience the candles the way they were meant to be used—I enjoyed those few peaceful minutes so much, I vowed never to dust candles again. And, I also started to let myself use the fancy lotion and good perfume.
4) Once a week, have at least one conversation with someone that is not about Alzheimer’s, caregiving or anything related to the disease process. Talk about whatever you want, for as long or as little time as you have, but it just can’t be about the disease. Best case scenario, you find time to talk to an old friend about happier times, or a neighbor on the way to your mailbox about the weather or your yard. Again, it doesn’t matter who you talk to, the length of the conversation, or whether that conversation takes place over the phone, online or in person. The important part is that is provides you an opportunity for a virtual verbal break from everything Alzheimer’s.
5) Plan time with your photographic past. Let yourself look through old photos of happy times. Times before Alzheimer’s entered your world. This is an activity that you can do with your loved one. Get out all of your old photo albums and pull your favorite photos from each to put into one place for easier access and quicker viewing when you need a little boost.
6) Carve out some alone time. I know this may be the tricky part. Alone time isn’t always when it’s convenient for us, but it can be created each day if you’re willing to be flexible. Set your watch or alarm to wake up 15 minutes early or stay up 15 minutes after your loved one is safely sleeping (not put to bed, but actually sleeping). Take advantage of this time to do just one thing for you. A lot of us necessarily pack this precious time period with chores that are easier to do when our loved one is not around because of the nature of the task, but at least once a week, fill this time with something that is just for you.
7) Consider joining an online community of caregivers. These groups are available 24 hours per day, are there for you when you have time to connect and are going through the very same things that you are. Best of all, if you don’t feel comfortable sharing any information, you can just “listen” and learn additional caregiver coping tips and techniques by reading what others write. Facebook, Alzheimer’s blogs and Alzheimer’s organizations are great places to find these online caregiver groups.
8) Reflect on your caregiving successes each day. We spend a big part of our day identifying new ways to cope with a devastating and progressive disease. When you fight a disease that gets worse and worse every day, you can forget to look for what is going better than the day before. Make yourself end each day reviewing what went right, what worked well and what the best were the best parts of your day. There is enough heartache and difficulty around us each day that we don’t need to give it any more attention than it’s due. What we need, is a little more space to realize that every day we get through is a success, every day our loved one was safe and well cared for is a triumph. No amount of stress or sleep deprivation has the power to take that away from you. You did it, you’re doing it and you’re great at it!
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What do you look forward to doing when you have a few minutes for yourself? Leave a comment; we’d love to hear from you, and your ideas will likely help someone else!
Stay tuned for Caregiver Coping Strategies Part 2 of 3: Getting away from Guilt and Grief. In this second installment of The Dangerous Dance with Stress and Guilt series, Mara Botonis will discuss the ongoing struggle caregivers face in the battle against our ever present foes – guilt and grief.
Also in the coming weeks, I’ll be giving away a copy of Mara’s wonderful book, “When Caring Takes Courage”.
Many of us have had a mentor at one time or another during our lives. They guide us, offer words of wisdom, and provide feedback on our ideas or problems. A teacher may serve as a student’s mentor, or someone in a more senior position at work may mentor a less experienced associate. The role might be formal or informal. There are no set rules, but generally the relationship involves trust, counsel, and mutual respect.
Those involved in this project know firsthand how frightening it is to hear the words, “You have dementia.” Imagine hearing those words, then being handed a prescription and told to “come back in six months.” In many cases, that’s exactly what happens. Chris Roberts of Wales describes being stunned and in shock, head spinning such that he didn’t know where to turn.
Harry is quick to encourage people not to give up, assuring them they do have a meaningful life ahead of them. In this digital world where Google has become our best friend, it’s vital for folks to realize that when they hit the Internet for information, they will likely be bombarded with material about the later stages of the disease. The disease isn’t JUST the later stages! Yet, there tends to be very little information out there about the earlier stages. This is where Dementia Mentors comes in.
The Dementia Mentors tagline says it best, “Mentoring, Motivation, and More. We Help You Rule Your Dementia.” I truly believe that is the key – rule it, don’t let it rule you. We didn’t do that with my mom. At that time, we didn’t even talk about it let alone think there might be a way to connect her with others who could understand her fears so much more than we could. What a blessing that would have been…
The Long and Winding Road... 