January 18, 2021 at 6:45 pm #17498Dagmar MunnKeymaster
There are many reasons why a pALS would need to move into an assisted living or group home. It might be due to living alone and having ongoing progression of symptoms. Or, a couple might want less housekeeping responsibilities and more caregiving help. Or financial considerations, or a combination of a whole bunch of reasons. No matter the ‘why’… suddenly, the pALS is confronted with many decisions and ‘what-ifs.’
- If you have already made “the big move” – – what tips can you pass along to others?
- If you are in the middle of deciding – – what are your questions and worries?
- If you know of any helpful resources – – please share them with us.
January 20, 2021 at 6:04 am #17505Ahmed YusufParticipant
My brother’s ALS is somewhat advanced, as he is wheelchair bound, but still has some hand control and no swallowing difficulties.
We think we have found a better alternative to Assisted Living (AL), at least for now.
Assisted Living can be expensive, in north Florida $3,000+ for the room, meals and very basic services. Then, there are additional care packages, an extra $100 per month for help to enter and return to bed, several hundred for dining assistance, commode assistance etc. Very soon the amount reaches $4,000 per month for a very cramped room.
Even with the high price, we found the quality of services to be irregular and so often lacking that we had to hire an outside personal assistant.
To get better care and surroundings we purchased a 3-bedroom condo – mortgage, association fee and utilities total about $1,000 per month.
To accommodate an expense-sharing disabled partner, two of the rooms form a 600 square foot housemate suite (large bedroom, private bath, visitor/media room, computer station and walk-in closet). We will lease the suite for $3,600 per month, covering all utilities, WiFi, laundry, meals, 8-hours of helper services and full use of kitchen and dining area.
I installed a motorized remote-controlled front entry door and roll-in shower. Outdoors, the surrounding are beautiful with great security.
We have regular physician visits, paid by Medicare, and nurse visits as part of hospice.
The price may seem expensive; however, we have 8 hours per day of helper services. At AL you won’t find someone in your room for 8 hours per day, not at that cost, to help with grooming, bathing, commode, feeding, laundry, mobility, etc.
So, the helpmates will share expenses and avoid AL with more room and more services. For 6 months now, things have worked very well. We hope to avoid a nursing home by increasing the helper hours to 12 or more. But, that will be decided later.
The difficulty right now is obtaining a housemate. There are great pools of candidates served by the nearby ALS and neurology clinics which also have Multiple Sclerosis, Muscular Dystrophy and stroke clients. However, the clinics and government agencies won’t help, due to HIPPA liability fears, although they all agree that such shared-cost arrangements are an important unmet need.
So, we are now just beginning to advertise through Zillow and other rental services, and will let you know as things develop.
January 20, 2021 at 11:42 am #17512Dagmar MunnKeymaster
Ahmed, this is such a wonderful and unique solution! A condo for ALS patients that even has been modified for their special needs. Do keep us apprised of your progress. This could be a model for other pALS.
A few years ago, I read of a group home for pALS somewhere on the East coast. I’ll try to find out what happened to it, and post a link here.
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