A while back, I had three episodes in three different countries, where I swore blind I didn’t do something or did something else. I’d have bet my paycheque (if I had a paycheque) that I was right. It turns out that I was wrong. Each time. It happened over a relatively short period and by the time the third incident rocked around, I was seriously concerned. I dread the long goodbye. I dread dementia.
At the time I was watching the sitcom Ranch. SPOILER! Beau had just proposed to Joanne who then disappeared and came back with the news that she’d been diagnosed with early-stage Alzheimer’s. (Note: Dementia is a general term for a decline in mental ability severe enough to interfere with daily life, while Alzheimer’s is a specific disease.) It was heartbreaking to watch.
I had a test done and I’m fine. Or as fine as my version of fine can be. Whew.
Fast forward a few years…
When the universe sends three signs all pointing in the same direction, I figure I have to say something.
The first sign
I worked on a book recently that had a chapter in it about early-onset dementia (when it happens in your 40s or 50s – this was what I was worried about) and it, too, was heartbreaking. I hadn’t consciously thought of how society treats people with dementia. How they lose agency in their own lives. When it publishes, I’ll let you know. It’s a must-read if you’re thinking about ageing and nursing homes.
The second sign
Then, I saw this, by Rachael Wonderlin*:
The long goodbye
If I get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things.
1. If I get dementia, I want my family to embrace my reality.2. If I think my spouse is still alive, or if I think we’re visiting my parentsfor dinner, let me believe those things. I’ll be much happier for it.3. If I get dementia, don’t argue with me about what is true for me versus what is true for you.4. If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.5. If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.6. If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.7. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.8. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.9. If I get dementia, ask me to tell you a story from my past.10. If I get dementia, and I become agitated, take the time to figure out what is bothering me.11. If I get dementia, treat me the way that you would want to be treated.12. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.13. If I get dementia, don’t talk about me as if I’m not in the room.14. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.15. If I get dementia, and I live in a dementia care community, please visit me often.16. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.17. If I get dementia, make sure I always have my favorite music playing within earshot.18. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.19. If I get dementia, don’t exclude me from parties and family gatherings.20. If I get dementia, know that I still like receiving hugs or handshakes.21. If I get dementia, remember that I am still the person you know and love.”
The third sign
6 responses
I went on the Alzheimer’s walk with my father for 10 years, and slowly discovered most of those 21 points, but they it’s a valuable checklist for everyone – we could all be touched by dementia in others, or ourselves.
I doubt anything can prepare you for it really – you have to walk the journey with someone, as you say.
The ancient Greeks knew about dementia – he that the gods love dies young.
There’s some truth in that, Bernard. As my mother would say – there are worse things in life than death.
I have the same dread Mary and it took me years to remember what my mother was like before Alzheimer’s. I love “the long goodbye”and saw firsthand how pointless and upsetting it is to disprove their beliefs. Great to see you at Christmas.
Yes – I’ve heard friends talk of losing their parents twice…