Things People Who Have Dementia/Alzheimer’s Wish You Knew
If this is part of your life story, please share your insights! What would you like the rest of us to learn? What should we know about people in this community? How would you like people to interact with you? Should people ask questions? What’s the best way for people to learn about this? Do you have any resources (books, movies, YT videos, etc) that will give us greater understanding and empathy and kindness toward people who experience the same things you do?
If you’re not on this journey, we welcome you to listen, learn, and ask respectful, good-faith questions! Open-ended questions are highly encouraged, as they give people the space to share their unique experiences in their own words. While this is a safe space to learn about things you’ve never experienced, please remember to be sensitive, and avoid sharing harmful stereotypes or debating someone's lived reality. If you have a question, ask it with empathy. If someone gently corrects you, please be open to learning. Let's have a gentle, fun, friendly conversation where we support one another, because it takes all sorts to make a world!
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I’m adding a taglist to start, but this post is open to absolutely everyone! <3
@jesusredeemedme2425 Thank you for tagging me ❤️
@jesusredeemedme2425 Looking forward to this thread 💜
@jesusredeemedme2425
My Uncle had it and it's hard, everyday it's difficult to see him deteriorate.snd forget us. It hurts more than words can explain, but they moment when he has a small window of clarity and remembers, it's heartwarming. It's one of the hardest things to see someone you love go through 💙
@Amanda84 My grandmother had Alzheimer's. You're right about how painful it is to watch them deteriorate.
I'm sorry your uncle went through this. 💜
@mytwistedsoul @jesusredeemedme2425 @Amanda84 my grandmother has dementia and it hurts too much seeing her health deteriorate. The last time I got to see her, she told me to ask my grandfather to drop me at the airport. My grandfather passed away years ago. I was shocked and had to sadly leave with that memory.
@trueconfidant123
😔
I know exactly how heartbreaking and confronting this is 🩷
I hope you know though the love they have for you can never be broken or diminished 💙
@Amanda84 thank you. Although I've never had that connection with any of my grandparents, it's still a terrible feeling.
@trueconfidant123 (offers safe hugs) 💜 It's a cruel disease.
@mytwistedsoul
It is.
I was a caregiver for my mom when she went through Alzheimer's. Is it okay to share what I learned in caring for and loving my mom in her Alzheimer's Disease journey and how to care for her with empathy? If not, I totally understand.
@creativePenguin5558
Absolutely fine to share 🩷
Yes please! Absolutely <3
Here are a few things I wish I knew in caring for my mom with Alzheimer's Disease.
They are extremely scared especially when first diagnosed in the early stages. Reassure them no matter what you will always be there, always visit, etc.
Try as best you can to roll with the narrative they have in their head instead of continuously confronting them with the reality. Easier said than done I know. Often confronting them with the reality just causes them more distress. If it is not hurting anyone including themselves just roll with it.
Remember that you too are human as the caregiver and you will hit your limit and it is okay to take care of you too.
If they accuse you of doing something you know you are not doing simply walk away. Make some excuse. Oh mom, I just remember I forgot to pick up x at the store. Even if you just walk out the door, drive just out of their sight a few feet down the street if you come back in 5 to 10 minutes they will usually forget about the argument all together and will move on to a different topic all together.
Even if they no longer remember who you are which is one of the most heartbreaking pieces of all, they will always remember even if deep in their soul how you treated them. Keep treating them with love and kindness. It matters while not holding yourself to perfectionistic standards.