Things to do

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JennyC

Distinguished member
Joined
May 3, 2016
Messages
232
Reason
Loved one DX
Diagnosis
04/2016
Country
US
State
NY
City
Queensbury
Its getting a bit awkward when I visit mom now. Normally we would talk a bit and then when she wasn't able to talk she would play on her ipad and I would mess around on mine, usually we would be playing Words With Friends back and forth.

Well now she can't talk very well or very long at all, I tell her she doesn't have to talk back when I talk to her so I can just tell her stuff but she still tries and then can't talk and get frustrated. She can hardly use her iPad anymore but doesn't want help and she doesn't really like to watch TV so she just sits there and then I feel bad if I go on my iPad or something. So we end up both just sitting there.

Any ideas??
 
Just being present is a lot, when things get to this point. When my mom got to this point, I would just talk to her and include details about what was going on with my kids and family.

I would also try to hold her hand (touch is crucial), and be involved in making her comfortable during my visit. She liked chocolate shakes, I would always bring one and help her ingest it.
 
Does she have insurance that can provide the Tobi device? If not the Gleason group might be able to help.
 
Maybe you can read a wonderful book to her.
 
Do you have any old family videos you could watch together? Or - have old photos put on one of those digital frames and she can watch the old memories scroll by all the time. We did that last year and had to order the frame online. It is wonderful and is a conversation starter for all who walk in the room. Maybe nonverbal, but there is always something for her to look at. Our kids contributed current photos of their activities too, so it is a way to keep up with everybody. Easy to add to whenever you want.
 
Does she have insurance that can provide the Tobi device? If not the Gleason group might be able to help.

They actually loan them out for free at the ALS center here but she won't borrow one, she says there are other people that need them more and she doesn't want to take it away from them...I tried explaining that there were like 10 of them at the center not being used but I got no where
 
Do you have any old family videos you could watch together? Or - have old photos put on one of those digital frames and she can watch the old memories scroll by all the time. We did that last year and had to order the frame online. It is wonderful and is a conversation starter for all who walk in the room. Maybe nonverbal, but there is always something for her to look at. Our kids contributed current photos of their activities too, so it is a way to keep up with everybody. Easy to add to whenever you want.

We do but they make her sad, remind her of "who she used to be" and then she starts crying and cant stop.

The digital frame is a good idea to look into.
 
Jenny, Is your mom on an antidepressant? It might take the edge off and allow her to enjoy living a little more. I know these ideas might be hard for you to discuss with her, but maybe the doc or someone else could approach her with the idea. Does she live at home?
 
"Read a book together" either with you reading or a narrator...watch a movie or concert...binge-watch a series...most everything is available online; you don't need Netflix. The free National Geographic channel and many others have awesome docs. Etc.

Skype with family/friends who are out of town, not just to be talking heads but for them to show her things -- new puppy, kids, nature walk...the best cure for retreat is basking in what is outside her walls.
 
I would like a nice foot massage. If you have an apple TV you can connect it to her television and project your iPad onto the TV and still play words with friends or anything else. That way you both can watch. You should be able to get an apple TV for about $60. I do that with my brother to show his pictures I have on my iPad. You could take some video or pics on your iPad and show them to her every time you visited.

Audible books are good, too, because you can really relax and just listen. Does she like comedy? Download Billy Crystal or Ellen Degeneras books. They will make anyone laugh.
 
Thanks for bringing up Apple TV, Kim -- I was thinking of just that when I mentioned channels. That would also provide a bigger screen for Skype, Facetime, etc. Don't forget YouTube and Googling titles for lots of retro TV streams without the commercials.
 
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