been a while

[AngelaRenee]

So I haven't been on here in a while. I've been getting support by joining a als caregivers fb group. But somehow I'm not apart of the group anymore. Anyway I hope everyone is hanging in there. Right now we are trying to get a head mouse for a communication device for mom. We were told the insurance might not cover it if she is with hospice, so now we are just playing a waiting game. She needs a better transport chair, trying to get a tilt and sit chair. Ugh its frustrating. Waiting on hand splints and the insurance won't cover the multi podus boots.

 

[AnaMaria]

Hi!
My mom has ALS. I know how hard this is. Well meaning people ask "how is your mom doing?" and say "I hope your mom is better". They do not know.

My only comfort is mom is starting to accept this fate and is not angry and screaming and lashing out all the time anymore. She can still talk and has limited use of her arms. She decided not to get a ventilator or feeding tube. I dread our future.

Well, I could go on and on (you can read my post), as life is stressful. I found ALS association has been so helpful in providing equipment free of use. I don't know if you contacted them, but its well worth a try. The healthcare system is lacking, that is certain. I wish you peace and hope you somehow get what your mother needs to make her life easier at this point.

Ana Maria