This is kind of a downer question but, something that is on my mind, lately. How much longer will I be able to live, in my home, on my own?

I have my Annual PCP appointment, in a couple of weeks and so, I decided to make the perilous trip to my garage to see if my Minivan/scooter was in good working order. I did it, but when I got back into the house, I cried..

The whole experience was sooooo scary. I didn't think I would make it down the three steep stairs to the garage, into and out of the Minivan and then back up the stairs, again. I made it, thanked God and sat down in my scooter and bawled..

I should have moved into a more handicap friendly home, long ago, but wanted to stay here. Now you know why I don't go out very often..

The good news is, the MV started right up.. I wish Docs would do home visits...I'd pay extra....I'd even cook his lunch..LOL.

My DD has promised she would not insist that, I go to a home, but what am I going to do? Are there any other answers for me and others, who life alone, with MS? Any Ideas that will keep me in my home, will be greatly appreciated.

Aww, Sally......I know it's a scary thought to have to possibly leave your home. I'm sorry you're having to think about it.

Here's the first thing I thought of.....why not see if you can find a housemate? Someone that possibly has MS and needs (and wants) to be around someone else but who can also help you with your needs? The NMSS might have a program that matches people up.

My Dad did a similar thing before he became ill - but it was sort of reversed. He had a friend who needed somewhere to live, my Mom was in a nursing home so he had the extra room and loved having the company. It worked well for about three years. His friend cooked and cleaned and got her room and board free. She was a widow who had some health problems but nothing that kept her from doing the things he needed.....she was on SSI and her meds cost just about what she received in her check. So it worked out well for both of them. Once his heart problems got more serious we had to think about alternate solutions.

Maybe a similar situation would work for you?

Awwwww, dear Sally, I am so sorry. ((((Sally))))

You are so brave to have stayed there for so long. Bless your dear daughter for helping you to know that you won't be forced into any arrangement against your will.

I don't know if you remember Tabbico (from MSW). She wants to retire on a cruise ship! She had done some research and found that the price is comparable to living in an assisted center. Your family can visit at a reduced price.

I don't know if this would suit your situation, but it has always intrigued me.

Please don't cry. Makes my eyes leak just thinking about you being so sad.

I hope you feel better as you explore possibilities. Don't rule anything out: my dear Grandmother always said, "Don't let them put me in a home with a bunch of old women." She was quite old when she broke her hip and had no choice but to be in a nursing home. She absolutely thrived there!

Bless you, dear Sally, for your courage. I hope you'll find a solution that suits you.

Sally tears came to my eyes and heart when I read your post.

Because I know that I maybe in the same situation as you someday.
That is one of the reasons I am moving to Kentucky. The house I live
in now has a basement and that's where my laundry room is and pantry,
plus freezer and many other things that I need for everyday living.

I couldn't afford to buy a house that meets my needs here. They are
to expensive. That's why I bought a Ranch type home, so everything is on
the same level. My son is only 1/2 mile away from me and also my daughter
is moving to Kentucky.

I love where I live now and am going to miss all the friends that I have
made in the 46 yrs. I have been in this location. Also I am a little nervous
at the thought of finding different drs. and starting all over with them.

I am sorry I seem to have taken over your thread. But, I know we are
very close in age and just the natural decline of our bodies is bad enough.
Adding the ms, we are just one mixed up package.

I really don't have an answer for you. Just hope and pray that you
will be able to work something out.

HUGS TO YOU

Jappy

Sally, Jim and I have talked about this if something was to happen to me. The boys of course say they will care for their dad but we all know nothing is as good as living on your own and not with your kids. So, Jim has made the decision he will sell the house and go to live in an assisted living facility. BUT, there are several kinds you can look into. For example, there are assisted facilities where you rent a room and can decorate it yourself. There are assisted facilities where you have your own apartment and your cost is based on your needs (bathing, meds, etc). Look into this. Jim wants to live in his own apartment and have a nurse come in to set up his meds and bathe him and get him up. The nursing staff would be on call 24/7 for him as needed. The facilities we looked into have a nursing home on the grounds in case you get sick and need temp or full time care as well as pt services, etc.

In the meantime, to you because I know how scared you must feel. Jim worries too.

Hi Sally,

I am so sorry you are feeling this way but I do feel you and your thoughts. I have thought many times about this.....I a TRYING to make adjustments very slowly as to how I am going to be able to cope when the time comes that I can no longer make it up a set of stairs or make it into and out of the house it is a VERY scary thought I agree. A good cry does help at the time but it doesn't solve any of the issues we have ahead of us....but it DOES help....

I deal with one day at a time now and try not to think about the depressing part of the future. Little by little I am making adjustments to keep myself independent. Thinking about my daily activiies and the "what if" is helping me to prepare for the future BUT I dont let the thoughts take over my WHOLE being, I stay positive most of the time and try and keep the future in part of my mind so as to make the adjustments.

Do you have an MS Society in your area that can help you with handicap ramps or moving the things you need to a better place than where they are now?

When the time comes, IF it ever DOES, you don't KNOW for sure.....somehow things WILL work out for the best for you.

Sorry you are going through this Sally. Try not to dwell on the bad parts, think GOOD things and good things will happen.....

I know this message may not have been so much help you are looking for but its all I have at the moment......


Joe

First, I would suggest thinking of ways you can make your home more user-friendly. Is there any way you can ramp those three steps? Or have fewer, less steep steps? (Say THAT three times fast) Some kind of device to help you transfer in and out of the van more easily?

Is there someone who could come and help you do the more "perilous" things on your list, or do them for you? Very few doctors make house calls, but visiting nurses do.

My grandmother would wait for me to come for my summer visit (two or three weeks) and send me up to the attic and down to the basement for stuff. I'd beat rugs and lay curtains out on the lawn to dry, things that weren't safe for her to do. Know any young people that could help?

I have a friend who has a knack for looking at every problem and saying "Hmmmmm" until she figures out a way either to do it, or to get around it. I'll bet you've got a little "hmmm" in you as well.

Praying for you.

Hi Sally.

Whether we have MS or not, these type of adjustments are often required as we age. Of course it seems to happen at a younger age for those of us with a chronic illness of any sort.

My Grandma out-lived 3 husbands, and the last 20 yrs she said "why am I still alive?". She was reasonably healthy into her late 80's, and even when she wasn't, she refused to go in a home.

My ex-FIL had to be put in a home in his 70's. We tried everything (including living with him), but he was still a danger to himself. When it got to the point where he spent more time in the ER or hospital then at home, we had to put him in a facility with round-the-clock care.

My biggest fear is SUDDEN disability that lasts. I've been paralyzed twice, and both times I had a significant chance of no recovery from the get-go. I did recover, fortunately . . . but knowing the kind of attacks I most often have, that IMMEDIATE scare is always in the back of my mind.

Most likely, you have time to plan and make adjustments. Unfortunately that may mean some hard decisions have to be made along the way, so that you may have a more "progressive" approach to less independence . . . but you do have some control over this as you go along. That is a better then the alternative though, don't you think? (Trying to look at the bright side )

This is hard, Sally, I know. I feel for you, and know these adjustments are not easy ones. We've had to make so many with this disease though (should I have kids?, should I go to part-time?, should I quit work? should I get a one-level house even if I am only 35 yrs old?, etc.). This is another adjustment.



Cherie

I made a first step...I have a local contractor/handyman, coming here tomorrow, at noon, to see what can be done, to make my inaccessible home, more accessible.

Things like ramps and grab bars and some bathroom remodeling and perhaps my carpet taken out and refinish my hardwood floors????

We'll see, when he gets here, what he can do and how much it will cost..

Thanks all for your helpful and caring responses..

Sal

I am so happy to hear you are being pro-active about your living situation. I truly believe that you will be able to stay in your own home for as long as you want with some work on the hardware!

I think the ramp will be the biggie. You need to be able to get out in case of fire and three steps down is not a steep grade, so it shouldn't be too expensive. Maybe you could just have a landing that extends to the door of the van so you can walk right to it and a short ramp that extends from the side to allow access to the garage and outside.

The bars are easy to install, the handyman just has to find the studs and screw them onto the walls where needed. Think about where you use the walls and other stuff to grab onto and put in railings and bars at a height that will work for you now and later if you find yourself sitting and rolling.

If you don't have a shower bench installed yet, think about how you will bathe and get in and out of the tub if needed. A fold out wooden bench can be installed without much retrofitting. It screws to the inside wall of the shower/bath and should be long enough to reach outside of the tub/stall so you can transfer and slide across it into the tub/stall area. A hand shower is easily added, even two or more if you need them!

I've been doing a lot of thinking about this very subject. I am trying to make my remodels user friendly with the objective of staying in my own home 'til I am dead. Everything I plan includes handicapped accessible, ease of use and cleaning!

Please keep us posted!
I am looking forward to seeing what you come up with!