nursing homes

[jaketheo]

I would like to hear comments regarding PALS experience with living in nursing homes. Does anyone have any idea as to the percent of ALS patients living in a long term care facility.

[hboyajian]

I have no experience with this, as my dad stayed at home with my mom. The only thing I can tell you is that there are very few facilities that will take a person on a ventilator, and those may be hard to get a place in when needed. My dad was not on one (ventilator), but I did look into it in case he chose that option. At the time, doctors/social workers all insisted that it was impossible for a person to be cared for at home on a ventilator. I have since learned that this is not completely accurate information. I do not know if there is similar resistance at many nursing homes for dealing with other equipment such as bi-paps, cough assist machines and PEG tube feedings. In any event, the cost for specialized care is enormous.

[beaner1]

Hi,
This may be slightly off topic, but I do have a question about nursing homes too.

My husband is a PALS, and I'm finding it more and more difficult to care for him. It doesn't help that he is very uncooperative - I would like to get home care but he refuses. I haven't had more than 4 hours of sleep in months, and I'm so tired I don't know what to do anymore - still working full-time (average 60 hrs wk - management so I don't have a choice!). I was wondering about a personal care home - what are the criteria for accepting a patient? I do have medical benefits, and I'm in Canada so cost isn't so much of an issue.

Any suggestions would sure be appreciated.
Thanks,
Beaner

[Carlos1970]

Hi,
I've been living with ALS going on 3 years. In October 06 I moved into a long term care facility, I'm only 37 so it was quite an event at the home. They are used to having an older clientele. Fortunately in Canada (Montreal to be exact) everything is covered by our universal health care, but so far it hasn't been too bad. I have more interaction with the staff than the residents. As far as equipment, it's not bad but I still deal more with the team at the neurological hospital. It did take 6 months and a lot of research to find the right place.
Carlos.

[Al]

When I went to the Rehab Hospital for a week to be set up on my Bipap in 2005 there were a couple of vented ALS patients living there and I talked a couple of times with one and he seemed content. Being in the fire business for quite a while allowed me to see the inside of a lot of nursing homes and some are crap holes. Choose wisely.
AL.

[Tom]

Jaketheo,
In response to your question about nursing homes and ALS patients in them, based on my experience in Texas, Houston area, there weren't many. We finally got my Mom in law in one after checking quite a few of them. Grandpal is quite correct; some are bad, so do your homework. We've had to educate the staff on what ALS is and how it works, as most of them had never heard of it. When we got my Mom in law in, we heard the nurses say, "You don't look sick, so why do you need help getting up, walking, etc." It took a little time and patience, but now they understand much better, and do a really good job with her. When you find one you like, I would ask the management if they're versed on ALS and what it takes to care for a person with it. If they don't know, educate them. Ask lots of questions and keep asking until you get the answers you want. Stand fast and God bless. Tom

[CindyM]

My advice is to do all the above and when you settle on one be sure to visit often and during each shift. You want staff to see that this resident is surrounded by caring family. The point being if your relative gets to the point where he or she cannot communicate his needs, the staff will jump in. They do it for everyone anyway but the way you treat your loved one sets the tone for how quickly they respond and how much effort they put to the task. It doesn't hurt to take a tray of goodies to the staff once and while, either. Anything that sends the message that says: "I love this person and appreciate what you do for my loved one." regards, Cindy