Hi - new here

[KevinH]

My father in law was diagnosed with ALS last month. He was already an amputee in a wheelchair, so we may have missed some early symptoms. His disease seems to be progressing rapidly. Two months ago he was having slight trouble with his hands. Today (October) he can barely use his hands and arms.

The speed of progression has caught us off guard. It has bee difficult to find services and help with care and costs on such a short term. I am here in hopes that others can help us navigate services and care and ways to help his quality of life.

Thanks for reading,
Kevin

 

[rmt]

Sorry to welcome you here. But I'm glad you found this forum because the people are amazing!

Is your father-in-law a veteran?

 

[lgelb]

I am very sorry. What kinds of needs does he have right now, that could be addressed with equipment or other adaptations? Does he have any problems with speech, eating, breathing?

Best,
Laurie

 

[KevinH]

No issues with chewing and swallowing, but he is not able to feed himself. His speech is a little slowed most of the time. He was given a wheelchair that he can control with just a finger - but he is having great difficulty with that. Right now he needs help with almost everything.

I spent time talking to medicare today, and it sounds like they will pay for full time home health care if his doctor says he needs it. I don't know what the problem is - does his doctor not know that or is perhaps he refusing it? He would probably also qualify for hospice care - but again his doctor would have to order it. I'm a little puzzled - I would think that if a doctor diagnosed someone with ALS he/she or a social worker could help the family find the care they need. It doesn't seem like that happened here.

 

[lgelb]

There may be an issue with terminology here. Medicare only pays for physician-ordered and Medicare-allowable "home health care" that is skilled care, like home health nursing, PT, SLP, and OT visits -- not "custodial care" that is assistance with the activities of daily living. If he is eligible for Medicaid in his state, that could provide some home care.

You cannot be reimbursed for hospice care (which is similarly a part-time effort) and home health at the same time. It's one or the other.

Once he signs on with a hospice agency, he will not be eligible for new equipment because agencies get paid a flat rate for hospice care and don't want to be involved with new DME. So you want to make sure he has every big ticket item he needs before that. If his breathing and eating are OK, he probably does not meet the traditional "six months or less to live" requirement for hospice care at this point, anyway, though there is some wiggle room when it comes to ALS.

Does he have adequate family caregiving resources?

 

[Mary2]

Hi Kevin, I am sorry to learn your father in law has ALS. In GA, the GA ALS Association has some grant funds they are able to administer to some people to assist a little with home care coverage. Maybe the AZ ALS Foundation has a grant or knows of a grant.