Living situation and stairs

[kashi]

I am pretty newly diagnosed and have had symptoms about a year and a half. Still can walk about 50 yards or so and have started using a cane. My wife and I live in a 2 story house with the living area upstairs. I would really prefer to stay in our home we designed and built. We do have a small bedroom downstairs. I am not planning at this stage to do feeding tubes, permanent breathing devices and hope to just get into Hospice when possible. So the question is do you think I can stay in my home with the stairs or should we move to a single story home. Thanks for sharing your experience and thoughts.

 

[Nikki J]

How small is the bedroom? You will need some room to use a lift and for your cals to move around the bed to help you. Also they will probably sleep there too. What about the bathroom? If there is enough space in those rooms it could work. Is there another space on that level that could be a living room. It would be pretty grim to just hang out in the bedroom. How is the exit from the house?

I ended up moving. My house did not work and could not be converted to work. One level living is a lot easier. If you do decide to move do it now. I wish I had not waited

 

[Bike Mike]

I was in a similar situation recently, having a bilevel home. We have decided to stay, getting stair glides, but also knowing that I won’t be able to use them for the duration. I remodeled a half bath on the ground floor to have a zero entry shower accessible sink and bidet toilet. I am also of the no-trach/PEG mindset and open to hospice. We’ll use the family room as my bedroom.

To each his own, no right answer. If you do decide to move, I agree with Nikki that the sooner the better.

 

[Eliza B]

Hi,
I have similar situation at home. I am installing a lift.
Have you considered a stair chair?
Depends on your budget.

 

[Fourogaras]

My bedroom is on second floor…installed stair chair for a lot less than we thought it would cost. LOVE it!

 

[Mana]

We moved to a one story home built to ADA standards (wide doorways, zero entry shower,etc) installed more hand rails, ramps, etc.within 6 months of diagnosis. It was exhausting physically and emotionally at the time. We loved where we were living. Two and a half years later, my PALs is nearing the end of his journey, surrounded by loving family in a comfortable, safe space. The very first thing on our gratitude list is that move.

 

[Finndoodle]

I really feel for you. We are basically in the same situation. Our house is over 100 years old bedrooms and bathroom on the second floor. We recently bought a townhome. We will be moving into it trying to squeeze 25 years of living in a three-story house into a townhouse is no easy task. I am so worried about my husband falling down the stairs. He is very unsteady on his feet. He was diagnosed seven months ago with bulbar onset. I hated to give up my house in the beginning. I was really planning on keeping it and hoping we could stay here, but it basically seemed impossible after some rapid progression. Living on one story will be so much better. It has been difficult as the packing and planning has basically been all on me, but I think in the end it will be well worth it.

 

[KimT]

I moved and so glad I did. I moved to a large 3/3 condo and gutted it. Everyone parks on their own floor and the common areas are all accessible with ramps. I'm on the first floor. The remodel took about three months, but so worth it. I tiled the whole thing and took out thresholds so I can walk or wheel throughout. All doors were recut to make them 36 inches. When I moved (2016) I had no idea how slow my progression would be, but I'm so glad I did it and I've been enjoying the heated outdoor pool most of the year.

The bad part was that I had just remodeled my other place a couple years before so my investment was pretty much a sunk cost.

I had no trouble divesting myself with stuff. My relatives and friends were more than happy to take things off my hands and I'd rather give them nice things while I'm here than have them inherit.

I've made a lot of good memories here.