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I meet a lot of care partners who look after individuals living with dementia. The recurring theme amongst these care partners—many with varying backgrounds and experience levels—is that they all feel tired.
Caring for a person living with dementia is not the same thing as raising a healthy child. Yes, babies are exhausting, but babies grow up into children who, in the very least, allow you to sleep more than 3 hours a night. People living with dementia do not get better as time goes on…they get worse.
I’ve had people say to me, “Well, my mom took care of me, so now it’s my job to take care of her.” Sure, yes, it is your job to care for her, but that doesn’t mean you have to be with her every second of every day.
I don’t hate this AARP billboard, but I don’t love it, either. Roles do change, and often adult children or a spouse/partner will end up caring for someone they didn’t anticipate taking care of. The problem that I do have with this billboard is that it imbues caregivers with guilt. Or, at least, it makes me feel that way. When I see this billboard I think, “Wow, I need to make sure I’m there for my parents the way they were for me!”
As I think that, though, I realize that there is no way I could be there for my parents the way they were for me. I’m a healthy adult now. I was a healthy (and relatively easy) child and teenager. Taking care of a person who is sick, and will only get sicker, takes a village. It’s not the same as having one or two people raising a healthy child. It’s about a group of people—a family, a home care agency, a dementia care community—working together to care for someone.
Care partners already feel an immense sort of guilt. I just did a presentation in front of 100+ people. A woman asked me, “But how I do get rid of the guilt for moving my husband into a care community?” She bit her lip to hold back tears even as her voice cracked. “Because you did what was best for him,” I said. “I know this is true because you’re here, learning more about dementia. You wouldn’t be here if you didn’t care.”
There is no competition to see who is the best care partner. There is no “winner” here. It’s about keeping yourself in the right mindset and the right place in your own life. You can’t care for someone else if you yourself are not healthy.