DEMENTIA Rules
A special note from an elderly person on the occasion of Dementia Awareness Week.
“In case I ever get dementia, I’ll file this list, to be hung on the wall wherever I live so those around me can remember these requests:
When you take care of someone with dementia, you lose them more and more every day. This long goodbye can be hard, but this list may make it that much easier for everybody.
1. When you come into my space, announce yourself.
“Hi- it’s …… your niece/cousin/good friend’
Refrain from asking ‘Do you know who I am???’ as that puts pressure on the conversation at square one.
2. I would appreciate it if friends and family could find a way to embrace my reality.
3. If I mistakenly think someone is still alive, or that we’re at my parents for dinner, let me believe those things. I’ll be much happier for it.
4. Try not to waste our time arguing with me about the difference between your truth & mine.
5. If I’m not sure who you are, what our relationship is or how important you are to me, hopefully I’ve made that abundantly clear in our earlier relationship - so hold onto that & maybe choose not to take it personally. I won’t be able to track timelines.
6. If I can’t remember how utensils work, don’t start feeding me - just switch me to a finger-food diet, and see if I can do that
7. If I get sad or anxious, hold my hand, listen & look in my eyes. That’s going to be hard as I won’t have the same awareness, but try not to deny what I’m feeling as unfounded. It’s real to me.
8. Kindly respond to me like the adult I am.
9. Find ways to support me to enjoy the things I’ve always enjoyed. To explore, read, visit the garden & the forest, listen to music, watch comedies and visit friends.
10. I may be good at telling you kooky stories from my past - maybe ask me?
11. If I get agitated, stay curious about what may be bothering me.
12. Kindly treat me the way that you would want to be treated.
13. Please have snacks. Even now, if I don’t eat, I get “owly”, and if I have dementia, I may have trouble saying what I need.
14. Try not to talk about me as if I’m not in the room.
15. Try to ease any guilt you may feel if you can’t 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.
16. If I live in a dementia care community, please visit me as a routine, and touch my shoulder, hold my hand & hug me as you always have, to make sure my body can feel that someone is there and someone cares.
17. Try to let it slide if I mix up names, events, or places. Take a deep breath. I’m not doing it on purpose to spite you lol.
18. Play music from my playlists - trust me, I’ll brighten up.
19. If I pick up items and carry them around, help me get them back to their original place.
20. Bring me to a get together on the regular if possible. Seeing & connecting with people has always been the most important thing to me
21. Remember that I still love to laugh & that it doesn’t take much
22. I am still the person you know and love, but with different capacities.”
7. If I get sad or anxious, hold my hand, listen & look in my eyes. That’s going to be hard as I won’t have the same awareness, but try not to deny what I’m feeling as unfounded. It’s real to me.
8. Kindly respond to me like the adult I am.
9. Find ways to support me to enjoy the things I’ve always enjoyed. To explore, read, visit the garden & the forest, listen to music, watch comedies and visit friends.
10. I may be good at telling you kooky stories from my past - maybe ask me?
11. If I get agitated, stay curious about what may be bothering me.
12. Kindly treat me the way that you would want to be treated.
13. Please have snacks. Even now, if I don’t eat, I get “owly”, and if I have dementia, I may have trouble saying what I need.
14. Try not to talk about me as if I’m not in the room.
15. Try to ease any guilt you may feel if you can’t 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.
16. If I live in a dementia care community, please visit me as a routine, and touch my shoulder, hold my hand & hug me as you always have, to make sure my body can feel that someone is there and someone cares.
17. Try to let it slide if I mix up names, events, or places. Take a deep breath. I’m not doing it on purpose to spite you lol.
18. Play music from my playlists - trust me, I’ll brighten up.
19. If I pick up items and carry them around, help me get them back to their original place.
20. Bring me to a get together on the regular if possible. Seeing & connecting with people has always been the most important thing to me
21. Remember that I still love to laugh & that it doesn’t take much
22. I am still the person you know and love, but with different capacities.”
Wonderful advice to share with all our loved ones now not later. Tom
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