My Mom was diagnosed with early onset dementia 2006-ish. I'm fortunate in that we are very close and didn't have any unfinished business, so caring for her in any way is something I want to do.
I am not her main caregiver and at this stage, we have been very fortunate to find a really loving place for her to live so we are not trying to care for her at home. We will run out of funds.....but right now we are in a very fortunate position. She is 81, not very verbal, and shaky on her feet, but otherwise super alert.
Here are some things that I've learned:
1) I used to lunch with some ladies in a memory care center. They were all at different stages of the disease but still able to converse. They enjoyed having company, hearing stories. They repeated themselves on 3-5 minute cycles but were still very present and bright.
2) Watching my Mom lose the ability to read broke my heart. She would write in the margins, trying to make notes, but they were illegible.
However, I can still read to her. Once when she was in very bad shape in the hospital I was with her for 12 hours or so reading from Winnie the Pooh, showing her pictures as she used to do - did I mention she was a children's librarian? At one point she said, something just shifted in my body, and by evening she was eating again. Love matters.
3) They do lose the ability to self-entertain, but they can enjoy movies, music, being read to, being taken places. We had a lot of fun at Target, with Mom in a wheelchair. You may just have to accept that sometimes they are not going to be entertained.
4) Sometimes I'll stare at my Mom trying to tell if she knows who I am, she does not like that. She is much better with being treated with humor and love, without demands on her mind.
5) There are a few specific difficulties when caring for them at home, especially if your person is mobile.
a) they can stay up really, really late
b) they'll leave and can get lost
c) they get bored and look to you for entertainment, sometimes every few minutes
d) but it is wonderful when you can fold them into family life. My Mom watched a football game with us, I'm sure for the first time in her life.
e) One day my Mom was feeling ornery and complained she had done everything before. I said oh yeah, I'm going to take you somewhere you haven't been. We went through a car wash and she was delighted.
And again, remember, love always matters.