Advice Needed

[LinCan]

Hi! I find myself with a dilemma. I have had some progression of spasticity and clonus to my second leg and some now presenting in my left arm after a pretty steady year. I use a walker in my apartment but am slow with poor balance. I have to move because of my stairs and here have only two options. I have a one-level accessible home to rent, living on my own but with help coming in two and possibly three times a day (help with meals, dressing, shower). Or a retirement home with extra care(one person assist). The main difference is that there would be someone on call at night at the home; in the other, I would have a lifeline button for falls, etc. I can still get to the bathroom, but am less steady. I am struggling with giving up my independence versus the comfort of knowing someone is there. (In the I dependent unit,I would have a close neighbour.). Any thoughts and perceptive s would be appreciated. I know falls can happen in either place, and I should apply for a PWC. , but am really confused and unsure.

Linda

 

[vickim]

Would you have transportation in the one level home? Does the assisted living provide transportation to shopping and dr apt? Make a list of the pros and cons of each and see which one has the better fit.

 

[ottawa girl]

Linda,

We here all face the loss of our independence. It's the crapiest of all - for me anyway.

The retirement home option means you wouldn't have to depend on neighbours or caregivers. You'd have housekeeping, company, activities, stimulation, emergency care and generally someone looking out for you all the time. We all know this thing we have doesn't get better - so in my mind, it's best to plan for the future. That being said, can the retirement home provide all of the personal care ( nursing?) you may require in the future?

In any case, you have to move. Question is do you want to move once, while you are in charge of your stuff or later when you may not be? Do you want to chose the place, or have a place chosen for you by the province if your situation changes down the road? Do you want to move once or twice? If you move to a suitable rental now and things change, it may not be feasible to stay alone long term and you'd have to move again. Alternatively, if you have the financial wherewithal to employ people 24/7 long term, then I suppose living alone could be an option.

For me, I'd be lonely and nervous on my own. I'd opt for the retirement home because I think I could still remain independent - but in a safer setting - and with more amenities and other perks.

I am very sorry you find yourself at this crossroad.

 

[LinCan]

Thank you, Vicki and Elaine! I would have one-person assist in the retirement home, so potentially would have to move again. I would also need to use my wheelchair and the elevator to get to the dining room for the room available. So far that's possible, but probably would need a small PWC in the near future.
It seems to be overwhelming at times, so many tough decisions, and adjustments with no really ideal answers!

Linda

 

[LinCan]

I forgot to mention. Assisted living people would help with daily stretches, ROM, while retirement home would not have that.

L

 

[olly]

Hi lincan.
What is your family/friends support network like?

If you have regular friends and family visiting and maybe able to get out then assisted living would be good.
Eventually if it gets to a point were its no longer viable you could then move to a retirement home.

If you don't have family/friends regular visiting then a retirement home would provide you with some company...other residents.
Could a pt visit you in the home to do pt exercises?
Don't see why not if doctors/nurses visit to tend to residents.

Think whats best for you,for your emotional well being as well as physical.

 

[Bad Balance]

While you will find very warm, friendly and helpful folks here, PLS is a very narrow slice of the NMD pie.

You might get more responses in the ALS forums.