August 13, 2015: About a year ago, on July 29, 2014, to be specific, I wrote a post about the fact that my Mom counts. I said this among other things:
“…she surprises me every day with what she can do, and how resourceful and resilient she still is even in the late stages of Alzheimer’s disease. She inspires me with her strength, courage and determination. The sheer power of her will and the force of her personality are something to behold. We have struggled through this life together and apart and I see her (and myself) more clearly each day. I appreciate the time we have together now, heart wrenching though it may be.”
A year later, Mom still inspires me despite her decline in the capacities most “normal” people think count most. But I’ve learned there are a whole slew of other things that also count – maybe even more than everything else. Things like deep connection. Things like looking death and dementia straight in the eye. Things like taking a single step then another and another, reaching out and touching a shaking hand, making tea for two and eating wafer-thin ginger snap cookies.
If Mom is awake, which she mostly is not during our restricted visits, she counts to a rhythmic three when I help her to stand up. Sometime she can take a few steps, each one of which is like swimming against the tide or climbing her own Kilimanjaro. Each step counts.
Today, I sat by Mom’s side for two hours as she slept. She and I are at the mercy of forces about which we can do nothing but bide our time. One thing I count on is that everyone’s time runs out sooner or later. So it will be with us and them. Maybe Mom was was counting sheep as she slept today. Maybe she was counting her blessings, as I was mine. I know one thing for sure: neither of us was counting our pennies because you can’t take ’em with you go and if you can’t use ’em to do good and create happiness here and now then what’s the point?
Another thing I know for sure is Mom still counts. We both do. So do the millions of people worldwide who have dementia. So do the millions more who will have it tomorrow and the next day and the one after that. So do the millions of other people who are care partners now and who will be care partners in the future alongside the millions of people living with dementia. It’s the hardest thing any one of us/them will ever do.
We all count. And we deserve better.
Mom died two years and four days after I wrote this post.
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Presentations on Alzheimer’s and caregiving sparked by my book Mashed Potatoes in My Salad: An Alzheimer’s Caregiver Memoir spark conversations at the layperson’s level and in settings often overlooked. I am thankful to be a catalyst and an advocate. For more, see more at http://www.eunicelsykes.com
Good for you Eunice and congratulations on your book.
You are so right we all deserve better, but especially them. Beautiful post.
Yes. Especially them <3
Your words keep me going, thank you Susan.
Thanks for telling me Kat. Nice to know you’re still out there. If I can help you in any way, just get in touch <3
You certainly do count! And your family is lucky to have you around as an advocate for your mother, even if they clearly do not recognize it. I hope I never going through what your mother is (although children of Alzheimer’s patients all fear this) but if I do, I pray I have someone like you to watch over me.
Thanks Heidi. The fact that there are few real advocates is part of the problem. And the whole system is broken in a whole lot of ways for a whole bunch of reasons. If we want better, we have to makes sure it changes before we get there…
I’ve just begun watching a Teepa Snow talk on hospitalization. It’s divided into 10 segments; first one is here: https://www.youtube.com/watch?v=1qfC3gE2LRo&feature
She has great insights, ideas and suggestions of how we might move forward with this aspect. I highly recommend all of her stuff 🙂
Amen and amen…
Yep and yep 😉