So What about the Caregiver?

When I was designing this site, I made a list of pages and tried to think of all the things caregivers want to know about. Doctors, insurance, nursing homes, medications, legal issues, financial planning, research… After I published a few posts, I realized that I never included a category for posts about how caregivers can be good stewards of their own health. This omission perfectly mirrors reality for most people who are taking care of a family member with dementia.

According to the Alzheimer’s Association’s Facts and Figures report, there are nearly 15 million Alzheimer’s and dementia caregivers providing 17 billion hours of unpaid care. Facts and Figures finds that caregivers not only suffer emotionally but also physically. Because of the toll caregiving takes on their own health, Alzheimer’s and dementia caregivers had $7.9 billion in additional health care costs in 2010. More than 60% of family caregivers report high levels of stress because of the prolonged duration of caregiving and 33% report symptoms of depression.

This year my mom didn’t miss a single doctor’s appointment or a blood test because I made sure she went. But I was three months late getting my annual mammogram and it took me six months to call my doctor and schedule my own physical. People keep giving me all sorts of helpful ideas about how I could manage things better and get more done. But honestly, if I had an afternoon free I’d spend it reading a really good novel in a room with no phone or TV. Maybe, maybe, if I had a few extra bucks, I’d get a massage.

It took me almost a year to figure out that if I didn’t schedule — as in mark it on the calendar and contract a caregiver — time to take care of myself, I would shrivel into an emotional slug that only woke up to worry. Now I make sure that every month I take at least one weekend off when I can spend time away from my mom and enjoy the company of others I love.

Time apart is really good for both of us. Mom likes the caregiver who comes to look after her while I’m gone. It gives her a chance to socialize with someone new. And I am happy to see her again when I return refreshed by conversations with fascinating people who are full of ideas. I really love my mom, but now and then I want to talk to someone who will remember what I said for an hour, even if it’s only because my statements were ridiculous. It’s not easy to take time off from caregiving. I have to write pages of care instructions in advance, and jam three days of chores into one. But it’s worth the extra effort because I know I’ll appreciate the sweeter aspects of this crazy life much more when I return.

3 Responses to So What about the Caregiver?

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    • April 5, 2011Wow! I cannot tell you how many times I have weantd to hide behind the covers or how many situations I have faced with a pounding heart. Strangely enough, the situations that I really feared were never as bad as I thought they would be. And the situations which were really bad always took me so much by surprise that I didn’t have time to worry before acting.

      • that her book club had just met and discussed Still Alice . Spoiler Alert! The meemrbs of the group were upset that Alice’s husband left and took a job he was offered and thought he was terrible for doing that. The social worker told her book club that she knows a dozen people, the meemrbs of our group, who have not left, but are loving, caring for, and supporting their spouses despite the challenges. It’s just like everyone here. We’re all sticking it out and doing our best even on the toughest days. Although I wish the circumstances were different, I feel honored to be part of this incredible group of people.

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