I write a lot about the challenges of dementia caregivers…their high rates of clinical depression and anxiety…their loneliness…their daily stressors. This post doesn’t change anything I’ve written in the past, but I do want to acknowledge something.
Some caregivers are doing okay. Some caregivers are happy. Some caregivers are enjoying life and thriving.
That doesn’t mean every day is great. But is every day really great for anyone?
When I talk to caregivers, I make an effort to ask how they are doing–not just as a caregiver but as a person.
Sometimes I am probably more invasive than I should be when I ask, but I want to know.
How are YOU?
Caregivers are a diverse gang. Some are doing okay, and some aren’t. In all honesty, most are okay sometimes and not okay at other times. Others are trying to redefine what “okay” even means in their life at this point.
But then there are some that report that they are….happy. Or even very happy. Their world has changed, and they’ve accepted that, and they are living.
They write poetry. They participate in zoom book clubs. They go to tai chi. They play pickleball and ride their bikes around town. They paint and do crafts and enjoy working on household projects. Or, like a 90 year old caregiving friend of mine, they crochet potholders for friends.
Please don’t accuse me of naivety. I know that many caregivers don’t have the time or mental energy to do these things. I know that some caregivers can pay for weekly in-home respite care, and others cannot. An assisted living that specializes in memory care is an option for some, but not for others. Some caregivers are more privileged. I get that.
It’s easier to be a caregiver when you aren’t worried about finances. Just like any other stage of life, more money means more options.
And that helps.
Other things help, too.
Social support–sometimes from family. Or perhaps from others if family isn’t around or isn’t helpful. Maybe they make friends with the other wives whose spouses are in memory care.
With the opening of the dementia simulation house, I have gotten to visit with more caregivers, particularly individuals caring for their spouses.
And I have learned a lot.
This spring, a man who cares for his wife who has dementia said to me, “It sucks, but it’s happening. And I’m not unhappy. I am still a happy person.”
Sometimes caregivers tell me what they enjoy doing. Cycling. Going to dinner with friends. Watching movies. Oh, and my 80-ish year old friend who still likes to kick some butt at pickleball. I love hearing them talk about something that is not dementia. Even more, I love hearing them get excited about something.
A woman recently told me that her husband’s dementia wasn’t in the plan, but life was still good.
Why am I telling you this?
I write a lot about struggles of caregiving, and there is no shortage of struggle. Caregiving often negatively impacts the health of the caregiver. Rates of depression and anxiety are high, and we don’t provide enough resources and supports for caregivers.
But…if you are entering this journey…I want you to know that it’s possible to be happy as a dementia caregiver. I talk to caregivers who tell me that life isn’t what they expected, know that dementia can be a beast, and somehow in spite of it all find a sense of acceptance.
And even happiness.