New here, father has ALS

[beachbaby]

My father has ALS. I am his caregiver. It is really difficult. I have come to terms with the fact that I will be losing him, I think. The hardest part right now is dealing with how stubborn he is. He lives an hour away from me and by himself. He refuses to live with me or my Grandmother. He falls frequently and I am terrified that something is going to happen to him and know one will know because he is alone. I go up there several times a week and help him as much as he will let me. I can't imagine what this is like for him. Does anyone have any advice.

Thank you.

D

 

[hboyajian]

Welcome. Bless you for being a daughter who cares. This is a really tough time for you and your dad. He may be in a space right now where he wants to maintain as much of his independence as he can for as long as possible, and it is hard for him to admit that he's just about at the point where he can't do it anymore. Soon enough, he really will be dependent on others for his basic survival and personal needs. As far as getting around with fewer imbalance episodes, does your dad have (or would he be able to accept) assistive aids such as a wheeled walker, bath and toilet seats with handles to hold onto? Has he yet had an occupational therapist do a home visit to help him set up the things he needs? Also, there are personal alarm systems such as Lifeline ( an alarm on a cord that you wear all the time) that you can set off if you fall and there is no one near to help. These do cost, but maybe it is worth it to your dad to maintain his independence without the fear of being so compromised and not able to get emergency help.

 

[beachbaby]

Thank you

Thank you so much for your reply. I know that he is having a really hard time giving up his independence. He has a wheeled walker and assistance bars in the bathroom as well as a shower seat. He also has an electric wheel chair. He breaks down when he has a hard time opening a water bottle. He either gets insanely angry or sad. I just don't know how to handle this sometimes. He hasn't addressed what he wants me to do when he can't live on his own anymore, which is pretty much right now. He says that he will cross that bridge when he gets there. I never thought that I would have to be dealing with this so soon. I love that I have people to talk to that understand. Thanks for being here.

D

 

[CindyM]

Hello Beachbaby and welcome to the forum. As you've discovered, there is a lot of experience and empathy around here. Glad you found us. Cindy

 

[Al]

Hello beachbaby. You have to convince your dad that crossing that bridge when you come to it doesn't work with ALS. You have to be 1 or 2 steps ahead of it. Live for today but plan for tomorrow or next week. Getting assistive devices or help in now when you needed them last week doesn't work. Agencies don't work fast sometimes. Plan ahead.
AL.