Living Facilites

[GolfR]

Hi All,

My dad has had ALS for about two years now. His left side has been mostly affected - his left side "doesn't work" and he can't stand anymore. His right hand is the only limb that he can use and that is slowly fading. Fortunately, he has been unaffected from the neck up, so he can still eat and his speech is fine. He lived in an assisted living facility for the past year, but had an accident and broke his left arm and now they won't let him return because they say they can't provide the level of care he needs. He's been bounced from the hospital to a skilled nursing facility (which was awful - they disconnected his call light and he called 911), to a transitional care unit (which was great), to a psych ward (for depression - this was awful), to a board and care in the past week. The board and care said they could meet his needs, but they could not transfer him and just left him in a chair for 2 days. He called 911 and is back in the hospital...my question is, are there any facilities out there? Board and cares can't meet his physical needs and skilled nursing facilities smell like death. I'm at a loss for what to do. He's at the hospital now and they're trying to get rid of him. Obviously finances are an issue.

I'm sure it'll come up, but I live in a tiny apartment, and he also would never go for it because he doesn't want to be a burden.

Any comments are appreciated.

 

[lgelb]

The only specific SNF I've heard about in connection w/ ALS in Cali was near SD, which I gather is too far.
Apart from the Cali nursing home guide and the CMS ratings, have you:

1) asked the local/regional ALSA and MDA for recommendations?
2) asked the transitional care center that was good, the same question?

 

[Nuts]

Wow. Just wow. Thank goodness your dad is willing to dial 911. Unfortunately, you've already experienced the problems with trying to place ALS patients in care facilities. Perhaps someone in CA will know of someplace that can handle ALS patients--but you are not going to get one-on one care in a facility. Eventually he will need skilled nursing, and if in home care is not an option you need to start visiting snfs until you find one you and he can live with. This is a miserable disease...

 

[GolfR]

The only specific SNF I've heard about in connection w/ ALS in Cali was near SD, which I gather is too far.
Apart from the Cali nursing home guide and the CMS ratings, have you:

1) asked the local/regional ALSA and MDA for recommendations?
2) asked the transitional care center that was good, the same question?

1) I have not. I will reach out, although most point to SNFs. I have not seen one that is even decent.
2) This is another issue, the case managers are all terrible (maybe I'm being harsh, but I've dealt with about 10 at this point). They all bring flyers with the same crappy facilities and board and cares. It feels like none of them understand what ALS. I had a case manager talking to me like my dad couldn't speak for himself...I just wanted to slap her and say "uh, my dad has ALS...he can hear, speak, and is 100 times smarter than you". One of them asked him to lift his leg...I've come to the conclusion no one knows what ALS is. They hear about it, but they don't know.

Especially with the board and cares, it feels like the administrators pay these case managers to recommend them. The administrators promise they can meet your needs, but they can't. They're use to people with mental issues who aren't even aware of the horrible care they receive. My dad will go insane.

 

[GolfR]

Wow. Just wow. Thank goodness your dad is willing to dial 911. Unfortunately, you've already experienced the problems with trying to place ALS patients in care facilities. Perhaps someone in CA will know of someplace that can handle ALS patients--but you are not going to get one-on one care in a facility. Eventually he will need skilled nursing, and if in home care is not an option you need to start visiting snfs until you find one you and he can live with. This is a miserable disease...

He doesn't need one on one, but he does need people who are trained on how to (and be physically strong enough, many caregivers have been sub-5 foot women who are unable; my dad is only 127lbs at this point) transfer a person from a bed to a chair, etc. The only people who can consistently do it are the staff at the rehab facility. Skilled nursing will just leave him in bed all day, which he can't stand.

 

[lgelb]

It is the transfers that takes it usually out of the realm of skilled care. Still, I wonder, if you/he has the means, if you could place him in a CCRC and then employ your own aide within that.

Often but not necessarily, the best CCRCs are Methodist, Presbyterian, Lutheran, Quaker, along those lines.