Who's taking care of YOU, the caregiver?

When I read all the posts here, I feel so inspired. So many family caregivers sacrificing their time, efforts, and sanity every day to help provide dignified, loving care for their parents with Alzheimer's or dementia. I salute you all!

At the same time, I'm concerned. I hear the frustration and burn-out in many posts and want to ask: who's taking care of the caregivers? This topic is my passion, and one I blog about frequently.

If you don't put yourself at the top of the caregiving pyramid, you won't be able to provide good care for your loved one. I discovered this a few years ago, while caring for my dad after he was diagnosed with vascular dementia. I was running myself ragged and burning out quickly. I decided I had to re-arrange my priorities and put myself first, no matter how selfish it felt.

One of my own self-care strategies is to take a walk every day. Some days, I can only manage 15 minutes, but other days I can get in an entire hour. Just being outdoors and breathing the fresh air lifts my spirits.

What do you do for yourself each day to help avoid burnout?

Report post

12 replies. Join the discussion

I would say "no body"
Now I am suppose to get my knee's problems fix. I better off wait till I have time.
Just life is not for me to control any more !!!!!!!!!

Report post

Sometimes I also feel like Elsie, and when I do, I know that I will have to be the one to take care of myself. I try to exercise and just do nothing sometimes, then I don't feel so deprived.

Report post

I love your screen name -- perfectly suits your photo!

Report post

lemonzest......really very nice to hear that some one had the same feeling. I am not fear to face what will happen in future....I think we all just have to live day by day to pass through the difficult time, and our life as a care giver are very uncertain. My love to you all and be brave.

Report post

I would imagine that all 24/7 caregivers feel deprived and depressed at times. My husband and I have been caregivers for about 12 years with only a 6 month break. We took care of his Mom with Alzheimers until Feb 2006 when she passed away here at home and when my Dad died in June 2006 we realized my Mom was suffering from something so we had to move her here with us and she is still hanging in there. She was finally diagnoised with Alzheimers in August of 2006 but being physically healthy was a lot more difficult to deal with than my Mother-in-law. Since I am an only child there is noone to give us any releif in her care, and YES I sometime have self pity parties, not very often but the constant careing for others gets me down. I have to remind myself that it won't go on forever and I have to take one day at a time. I do thank God for my computer.

Report post

Elsie, your feeling are shared by a lot of us I am sure. Working through the depression and taking one day at a time is all you can do, but DO NOT feel any guilt for your honest feelings.

Report post

Thank you all for replying to my post. I really think the issue of how caregivers take care of themselves is a crucial one. I'm sorry to hear so many of you feel unsupported for one reason or another. I hope each of you has looked into community resources that may be available to provide respite care so that you can take time (and I'm talking as little as half a day) to focus on yourself.

Today, I spent most of the day with my mom. I'm lucky that, at the moment, she requires very little in the way of "care." However, having taken care of my dad in my home for 9 months before dementia took him, I understand the huge burden of family caregiving. And I know the time is coming when Mom will require more and more care, so I'm taking advantage of this "light caregiving" period.

Yesterday, I took a long walk with my husband to unwind, had a glass of wine, and watched TV. Isn't downtime wonderful? Sometimes, as Lemonzest said, just being alone and doing nothing is the best recipe for stress relief.

I'm sending peaceful thoughts to each of you and hoping you find a way to do just *one thing* today for your own enjoyment and care. You deserve it!

Report post

Agree with your basic thesis and strategy. One thing I do that helps is to play the detective game: when something goofy or aggravating occurs I try to back up the time line and to discover WHY it happened. Such usually helps me to do better--she put panties on backwards because there was no lable. Easy to fix. Also, like you I try to find the positive in everything and we laugh a lot together because even if the disease-gremlins were the cause some stuff is pretty funny. CPD

Report post

I was just reading a new UCLA health policy brief that indicated less than 14% of family caregivers ever take advantage of respite care. Yet it's such a crucial self-care strategy for caregivers.

I think it might be because many carees simply refuse to go, or it's impractical to take them (for example, if a loved one has an intractable illness like ALS). I know even when my dad was in the later stages of dementia, he was still aware enough to know when he was being "babysat" (his words) by a paid caregiver. I couldn't imagine, at the time, convincing him to go to an adult day program. And simply taking him and dropping him off there against his will obviously would have been morally questionable.

I just keep thinking there must be a better way for caregivers to receive respite care for their loved one than being required to drive them to a program that their senior loved one might hate. But I haven't come up with a solution yet! LOL (In other news, I'm also still working on a way to bend the time-space continuum so that caregivers have 28 hours in a day. ha ha)

By the way, I run caregiver-specific news headlines, such as the UCLA study I referenced, on my blog, The Cheerful Caregiver. I invite you to check it out, if you're so inclined. The link is included in my profile information. :-)

Report post

I would imagine that one of the reasons more caregivers do not take advantage of professional respite care is the expense. I remember when my 5 children were little and we had a little extra money ... it would be enouigh to either go out for dinner OR pay a babysitter not both and with the economy the way it is I find myself there again.

Report post

I agree with you there, cvinson14. I know in my community there are respite programs that are free based on income qualification, but I discovered that if all their free spots are already filled, you're still out of luck.

It's sad to me that so many family caregivers seem to have no family or friend support. At least when I had my dad living with me I could call upon my sister (who lives out of state) or a family friend (here where I live) to stay with Dad for an hour or even half a day so I could get some respite. In fact, the local folks were delighted that I asked them for this favor, and I am just waiting for the opportunity to "pay it forward" by doing this for someone else.

Report post

I'm one of the lucky ones that have my family, who do give me respit care, I'm sure I would be climbing walls if I didn't have them. I only wish I could trust his children when they come, I just don't trust any of them so I don't leave them alone other wise I would go away for a few days, they will be here in Nov.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support AFA

Help the Alzheimer's Foundation of America reach its goals and support people like yourself by making a donation today.

Donate to the Alzheimer's Foundation of America

Discussion topics

Links and resources from AFA

Community leaders

Disclaimer

Information found on the Alzheimer's Foundation of America Support Community should not be considered a replacement for consultation with a qualified healthcare professional. Any views or opinions expressed on this site are not necessarily those of AFA.