Do You Have "Caregiver Dementia"?
I’ve talked about my friend Sarah before, and I want to talk about her again, because Sarah has had one of the most difficult, most heartbreaking jobs anyone can take on. When Sarah was 48, her mother was diagnosed with “possible Alzheimer’s” dementia. It was a huge shock, because her mother was only 68 at the time and in moderately good health. Sarah was devastated.
Sarah and her mother have always been very close. They lost her father when Sarah was only in her twenties, and she’s always felt it was like her job to look out for her mom. So early on she decided that she was going to take care of her mother at home no matter what.
The first year wasn’t too bad. Her mom had good days and bad days, as you might expect. On the good days she was almost her old self. On the bad days, things were…not so good. But as time went on the good days got fewer and farther between. And as s caring for mom took up more and more of her time, Sarah’s friends and extended family fell away. Before she knew it, caregiving was a 24-hour, one-person job.
She stopped working, choosing to live on her savings and stay home with mom. The time eventually came when just leaving for an hour to go grocery shopping was nearly impossible. And then one evening she called me in tears, convinced that she, too, was showing the first signs of dementia and wondering what on earth would happen to them both.
When you’re caring for someone else, who’s caring for you?
That day, mom had been having a rare good day and Sarah had managed to slip out to the grocery store. She quickly picked up the items on her list and hurried to the checkout, anxious to get home — but when she pulled out her checkbook to pay for her purchases, she realized she had no idea what day or month it was.
To her horror, she realized she didn’t even know what year it was. And the more she tried to recall, the farther the numbers slipped from her mind. Embarrassed, she asked the cashier for the date and, and once she heard it, the month and year came rushing back. But the incident left her shaken.
This is a classic example of what I like to call “caregiver dementia.” It’s not a medical diagnosis, and it’s not a form of real dementia — it’s the result of stress, lack of sleep, and the burden of caring for someone you love through the worst part of their life. I don’t call it “caregiver dementia” to make light of the actual medical condition, but to highlight the fact that it has very real symptoms.
Taking care of yourself too isn’t selfish — it’s essential
When Sarah called me that evening, she told me the episode at the grocery store was just the worst in a long string of episodes that had left her worried. She was forgetting things, like where she put her car keys or if she’d turned the stove off. Some days she couldn’t remember if she’d given her mother her medicine or not. She was having to write things down so she didn’t forget them. And she was terrified that this meant she, too, was showing the first signs of dementia.
I asked her how long it had been since she’d had a break. How long since she’d been able to leave the house for a few hours and just be herself? How long since she’d had a solid night’s sleep, or eaten a real meal? How long, actually, since she’d done anything other than care for mom?
The answer was, not in a very, very long time. And that was the problem.
I was able to reassure her that all her symptoms could be directly related to stress. Sarah is tough, and proud, and she felt like asking for help would be abandoning her mom. Like many women, she’d had it drummed into her head since childhood to always put other people first, even if it hurt her own health — that doing something for herself was selfish.
Nothing could be farther from the truth. Caring for someone with a chronic illness — especially someone with dementia — is incredibly stressful. It takes a huge toll on both body and spirit, and taking care of yourself first is a vital part of providing good care for the one you love. After all, if you’re chronically run down and drained, you’re no good to anyone. You can’t care for someone else if you have no energy to give.
Asking for help isn’t weak, it’s smart
Together, we looked into ways to ease the strain. We discovered there was an adult day care only 10 minutes away, and it was very affordable. We looked into home health services, and found an organization that specialized in Alzheimer’s patients. We enlisted friends and neighbors for occasional short shifts of half an hour or so. And today, Sarah is feeling much better.
She takes her mom to adult day care two afternoons per week now. This gives her time to shop, to run errands, or even to go have coffee with a friend. A home health aide comes by three evenings to help out. After lunch most days, a friend or neighbor sits with mom while she takes a nap, leaving Sarah free to take a walk, meditate, or just settle down for a little while with a good book.
And Sarah always knows where her car keys are now.
• If you feel you’re suffering from “caregiver dementia,” there are 3 important things to remember:
• It’s not selfish to put yourself first sometimes. Instead, it makes you a better caregiver.
• It’s not weak or disloyal to ask for help. Caregiving is a job that’s sometimes just too big for one person.
There are many opportunities for help out there, such as home health agencies, home meal delivery, and adult day care — and it’s ok to use them.
None of us are cut out to care for another adult round the clock for months or even years on end all by ourselves. There’s no shame in getting help, and if we put aside the guilt we know that our loved ones would tell us to take care of ourselves too.
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