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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.
3 thoughts on “Caring for yourself + why I don’t love these billboards”
This is so true. I used to feel that I had to be hear 24/7 everyday for mum who has severe Alzheimer’s but ended up making myself ill. Now dad has had the same diagnosis and my ‘me time: is even more important. I have had a two week break while my sister takes over every year for thr last few years. I rent a flat in Brighton and spend all the time just chilling and being able to do what I want without having to think about anyone else. Even having a long bath without having to listen out for any problem is an absolute joy. This year I am having a second break just after Christmas so I don’t have to wait a year between breaks. It’s the most important thing I can do not for me but my parents too. If I get ill I can’t care. We carers really do need do put ourselves first sometimes.
Yes! I’m so glad you’ve been able to do that this time around. You need to care for YOU, too!
Don’t be afraid to ask for help! My husband has dementia and I work part time 3 days a week. I have asked family and friends to come over on the days I’m at work and spend time with him. At first everyone was eager to help but that dwindled. So I had to set a “schedule “ to make sure that someone was actually going to show up! This has helped me so much. Because I know that he is engaging with people and not just sitting around the house.