Nursing homes that don't take ALS patients?

[PamelaSue]

In a different thread, someone mentioned that they couldn't find a long-term care facility that would take an ALS patient. Is this true? Do nursing homes refuse ALS patients? I am a pALS with no spouse or family to care for me, so eventually I will probably need in-patient care . I currently live independently, but am trying to plan for my future needs, whenever those needs come to pass. I'm sure that I won't be able to afford 24/7 in-home care when the time comes.

Anyone have any experience with long-term care facilities and ALS patients?

Pam

 

[momofsixkids60]

Dear PamelaSue,

I just came out of the nursing home and am planning on re-entering as soon as I qualify for the nursing home medicaid. We live in a small town and there are 2 nursing homes. Neither have had a case like mine. I was also the youngest patient they had ever had. (51). When it comes to the facility itself, overall was not a bad experience. The food was the horrible institution food that most of the time because I was a "feeder", I was fed last and the food was cold. They had daily activities.they had a beauty shop. Activities for me were useless. Bingo, ball toss, dancing,etc. Not for someone who no longer can use any limbs.

I suggest to you, that you check each and everyone that you may want to be in. I didn't have that choice, mine was a rush. You will very seldom see nurses, only at med times and the CNA's will be your caregivers. 85% will be caring and there for you, its that 15% that will make your life a living HE<<. If you don't like them, ask for a different group. Good luck and GOD bless.

 

[brooksea]

Pam, it differs state to state. In our state there are no nursing homes, that I know of, that will care for a patient on a vent. The closest is in the next state over and they have a horrible reputation. That is why Steve Saling (from GA but now in Boston) and his father have lobbied our state to make an ALS residence. I know it's far away from you, but you might want to inquire about the Leonard Florence residence in Boston. It is for ALS/MS patients.

 

[Dave C]

PamelaSue = Jen and i live in IL and there was only one that we found that would accept her as a patient. Wasnt the diagnosis so much as the vent facility.

 

[Henny Penny]

PamelaSue- I have worked in Long term care since 1994 and have cared for several ALS patients- vented and no vent. There are very few Nursing homes that will take vented patients. Unfortunately the reimbursment from medicaid is awful, and the cost is high- chronic care hospitals will take vented patients, look in your state for chronic care hospitals or rehabilitation hospitals. Best of luck.

 

[Susan10]

I think I'm the person who originally made that comment. In checking my options, it was recommended by a senior care specialist who is helping me with my retirement that the Baptist Village would be great b/c I could take a small apt while I could live independently (well, at the time we were talking, last fall), move to asstd living on the same campus and eventually into the long-term care. Howver, on my tour, it was obvious they were discouraging me from going further, with comments like "you better talk to the people in the lobg-term care area to get an answer", "Gee, I can't remember the last ALS patient we've had." and - very cryptically - "we would have to evaluate you at the time of need to see if your level of care would meet our criteria". In 11 yrs, they had 1 pal and it was obvious they didn't want to repeat that experience.

 

[mkwong]

The Leonard Florence residence in Boston sounded really good. I applied last year but after submiting the forms, they told me that they don't take people on ventillators. Strange.