confused about need for facility vs. in-home care

[lisaann1170]

I'm getting mixed messages from people on our "ALS team" and I thought I'd get some opinions from all of you who "get it."

My dad is a patient at a VA ALS clinic and I'm generally pretty pleased with the care he's received. The VA social worker is telling my mom that he is eligible for 30 days of in-facility care and Mom is encouraged to take advantage of the facility care. (She has in-home help 10 hours a week now.)

One of the CNAs who visits told Mom yesterday that "ALS patients don't live at home." Grrrr.... So, some of the CNAs are telling us that he should be put in a facility.

On the flip side, the local ALS association recently hosted two "talks;" one led by a man whose wife had ALS and he coordinated her in-home care, and the other led by a rep from Medicare who discussed options for financing in-home care.

So, I'm not sure which way to turn. Should we be considering a care facility? Should we be researching more home care? Obviously, Dad would much prefer to stay home, but Mom is overwhelmed. I can help some, but she needs more.

I'm interested to know how others handle care once the PALS is unable to walk, transfer, feed, toilet, shower, etc without assistance. Honestly, I don't know of any ALS patients in a facility, but then again, I haven't been looking! I assumed most PALS stayed home, but am I being naive?

 

[indigosd]

Lisa, my understanding was that the VA would pay for 24/7 in home care or at least something comparable. You may want to address this to sadiemae or zenarcher. Honestly, most PALS are taken care of in their home. Why in the world would a CNA taking care of your Dad in his home say such a thing to your MOM? I think that I would find another CNA to replace her asap. Obviously she does not like the situation-I think that the Social Worker was talking about Respite Care for your Mom to give her a break. Have you looked into Hospice care or any of the state programs that assist with home care? There is an excellent web site online called VA Watchdog.org Your Dad has many excellent benefits from the VA, you just need to know what they are and how to access them. hugs, Kay Marie

 

[Katie C]

OK.. here's what I took from your first statement... are they perhaps encouraging your mom to take advantage of in facility care to provide her with a respite? I know I sometimes I wish I had that option... just a couple days to catch up and decompress. There's a nearby assisted living facility where my mom lived until she passed away that offers 5-day respite visits, and I am seriously considering it, even if it is out of pocket.

 

[ZenArcher]

Show your CNA the following: YouTube- Living With ALS

Also your father should be rated 100% and getting SMC R2 which for a vet and spouse works out to about $7800/month. That additional money is specifically for paying skilled care. If he isn't contact your local PVA right away.

Note to David: YouTube tags aren't working

 

[lisaann1170]

Thanks all! I think my confusion comes from figuring out what is "usual care" (although I know that's a tough question).

I agree that I think the social worker is encouraging Mom to take advantage of the facility care so she can get a break. I think my mom is interpreting it as a long-term solution, though...particularly after the CNAs comment.

Thanks, ZenArcher, for the link! I think I need her book!

 

[suev2003]

Hi,

My uncle was diagnosed with ALS, and did need extensive care in a facility, so he and my aunt moved into an assisted graduate care facility, with apartments leading up to inpatient care. He died 2 years ago in a hospital, but only was there for about 2 weeks before death. My aunt took care of him prior to that time, in an apartment. However, he was very thin for the last year (he only lived 20 months after diagnosis, but lived into his 80's, so that is understandable.)

I have a question for anyone reading this post--I am having an EMG this week due to a persistent muscle twitch in my innter thigh, up toward the knee, 24 hours a day, every 2 seconds. I am worried about a herditary link due to my maternal uncle dying of ALS. I have some weakness in the thigh while driving, but can walk without a problem so far.

I am also worried about the diagnosis leading to a greater need for disability insurance, long-term health care insurance, etc., and being denied this insurance. Anyone have any experience in this area? Did anyone have the same initial symptom of one twitching muslce that just won't stop?

Suev2003