support for having a parent with dementia

alexisbrookks

hello! i’m not sure if this is the right place for this, but i’m just looking for support and guidance in my current situation. i’m 20 years old, and my mom received a dementia diagnosis a few years ago, during my high school years, after persistent memory issues. as anticipated, years after this diagnosis, her mental capacity is slipping. although this has been noticeable, i’ve moved back home this past spring/summer and am now seeing the full extent of her memory loss when it comes to day to day tasks, and other activities she was previously able to do. although she’s not at the point where i’m a caregiver, i was hoping anybody had any advice on how to cope and grieve with this loss, while still appreciating the time and memories i will have with my mother. thanks:)

SusanB-dil

Hi Alexis Brooke's- welcome to 'here', but sorry for the reason. I have found much advice and commisseration here. Yes, this is the place.

'this' disease does bite!! It is called 'the long goodbye' because, you are correct, our LO is still with us, but they are not the same any longer. That hurts. There are books that may help you, and there's a thread on that. 'The 36 hour Day' is very helpful. This forum has helped me the most.

Enjoy some time with mom. Take some pictures. Maybe do some journaling. Is there a favorite park or coffee-shop you both like so you can take a picture there?

Early-onset is especially heart-breaking. I'm sorry you are dealing with 'this'.

Emily 123

Hi alexisbrookss,

It's difficult because the losses creep up, so feeling sad for your person and for the losses you'll both experience is a long, drawn out process. Because of that, it's important to keep some time and space 'away' where you do normal things for yourself.

The attached pdf was really helpful for me in understanding how alzheimer's was affecting my mom. There are great videos out there on Youtube as well.

understanding-the-dementia-experience.pdf

https://alzconnected.org/discussion/65171/books-about-alzheimers-disease#latest

If trying to recall family history doesn't push your mom too much ask her to share some family history with you and make sure you have a way to capture it. I had my mom identify people in old photos while she could still remember who was in them, and tell me the stories behind some of the things that she had from her side of the family. Take videos and pics of her and of you both together. As her abilities slip she may find it easier to just sit and relax, and that's ok too—she might like the company, and you can do something you like to do while you sit with her.