2023 Grateful 45: The long goodbye

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:

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 parents
for 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
My friend, the lovely JG, makes activity blankets and mufflers for people suffering from dementia. She’s busy working on Alzheimer’s UK Make or Bake fundraiser and posted about it in the last few days. She’s making one square a day in the month of March and when she puts them together, she’s selling them with all profits going to Alzheimer’s research or donating them to someone who might benefit from them.
I donated. But I had to ask what good an activity blanket (aka a twiddle mat or a fidget quilt) or a muffler does for people with dementia. I wasn’t making the connection. She kindly sent some photos and an explanation.
An activity quilt with images of a fire truck and a fire helmet and hose beside the front door of a fire station in one corner. In the middle panel is a series of pictures of cakes with a set of keys pinned to the blanket. Then an aprop with a safety pin holding a metal spoon. There's a felt book of cats and a picture of a bible. Below in a strip of six images of james and preserves.
This is an activity blanket I made as a memory jogger for a lady whose late husband had been a firefighter. She loves baking and preserving and loves her cats and her bible. I try to add tactile, visually stimulating elements and sometimes a little puzzle. These are good because they give the person something to focus on in a very scary world.
A colourful muffler with strings of beads inside and out to fidget with.
The muff is handy for cold hands (dementia folk often have cold hands, and always fidget). The muffs are good for anxious patients too. I always have some fidgets inside the muff to keep the restless hands occupied.
Am grateful for the lesson and for now being more aware of it all. I’m especially grateful that there are people doing what they can to raise the money needed to further research into dementia and its causes and cures.
 

6 Responses

  1. 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.

  2. 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.

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