Status
Not open for further replies.

Mariak

New member
Joined
Jan 1, 2014
Messages
6
Reason
Loved one DX
Country
US
State
CA
City
SD
I'm so worried about my dad. My parents live in a second story condo. He was diagnosed with ALS 2.5 years ago. I immediately encouraged them to put their place on the market, but he was still walking well (his case began with loss of upper body strength), and plus this diagnosis was tough to take, so I'm sure they were in some level of denial. This is their dream retirement home, nothing super fancy, but they love it and it’s tough to let go. A year ago as he began to struggle more they finally did list their home for sale, but their area has been very slow to recover from the real estate downturn. They haven't gotten a single offer. They have dropped the price. They have open houses every week. The place is in very good condition, nice area, and according to my real estate friend who checked comps, the asking price seems fair. They are holding out for the spring season, which is by far the busiest real estate time in their area.

Meanwhile, though, by now my dad can barely walk. He is becoming virtually a prisoner upstairs. They have looked into a stair lift, but the only type the building can accommodate would require transfers in and out of chairs for two different segments, and he can barely lift himself as it is. (The building stairwell can't accommodate the type of lift that carries a wheelchair.) I don't think it would be worth the large investment for something he won't be able to use much, when they may really need the money for moving expenses and converting their vehicle. He somehow is still dragging himself up the stairs when absolutely necessary, but I know he can't continue like this for long. My mom is much smaller than him and can't lift him. They don't have the money to move until they sell this place, nor can they afford to cut the price really drastically. I hope this spring real estate season really does pick up, as they are counting on, but in the meantime I worry what will happen when he needs to get out, whether for doctor’s appointments, an emergency like a fire, or just getting out for basic quality of life. My husband and I live out of state and have been flying in every 4-5 weeks to help, but due to jobs and family (we are also caring for my husband’s mom with cancer here) we can't be with them to help through the day to day stuff. We've talked of renting out their place and them renting elsewhere, but that is complicated too because if a tenant backed out on them they could be stuck paying for two places. I'm just not sure how to help or what we can do. We do have some financial means to help a little, and we have offered to help with expenses, but they also don't want to accept help. Argh.
 
I faced a similar situation. I was going to have my downstairs bathroom remodeled (handicap) since he was having trouble going up the stairs. For some reason he decided not to do that at the time. We would put it off for later. I also inquired about a stair lift and we were going to have to do transfers. He was getting weaker and that was not going to be feasible. Never in my mind did I anticipate he would become bedridden. We now have a hospital bed in the den downstairs so he can be with everyone when the family comes over. He watches TV all day. This is all he has to look forward to. As terrible as it sounds, not getting all of those things done was a blessing. It would have been a wasted expense, Not to mention the confusion involved.
 
My parents moved the hospital bed in the den as well. Surely there is a room downstairs you can repurpose. Don't spend the Money or get reemed in the real estate market as you have no idea his time left and the expenses you face.
 
Same kind of thing here, we are simply turning the entire lounge room into a hospital room. Too quickly if you spend money making changes it just doesn't last long enough as the disease progresses past that change anyway.

I hope they can sell soon as it would be the best solution.

We tried to sell our place and it ended up being 5 months of stress I didn't need and we didn't get a sale.
 
The day we moved my husband to the downstairs and out of the upstairs bedrooms, he did not talk to us for 3 days. He didn't want to admit it, but he needed to not be upstairs. We converted a den into his bedroom, and we use a small downstairs bathroom. We did not convert the downstairs bathroom to handicap, luckily, since he is way past that now. But we did but a bidet on the toilet.
Has your mother thought about what she is going to do to help him out of bed, or to the bathroom, etc, since she can not lift him now? It is a tough subject to talk about. Good luck to you. I bet it is very hard being so far away.
 
The condo is entirely on the second story. I wish it were as easy as moving a bed to a downstairs room, but there is no downstairs. That is the whole problem.

Thanks for the kind thoughts & replies.
 
As a short-term solution, if she can find a helper when he wants to leave the condo, there are fireman-type nylon sling/gurney options for a one-flight carry, just as would be used by firefighters were there a fire. Since he can support his head/neck at this point, I'm assuming, I would look for a type that can be configured for a seated position, which is obviously easier.
 
I would bite the bullet and rent a place that is handicapped accessible before it takes the fire department to get him out of the place, or he falls down the stairs trying to walk or you mom is seriously injured.

that is more important than getting the sale, if you can help financially until the condo sells, you could take the money you loaned them back after the sale.
 
I can totally empathize with these frustrations, as I still have stairs which I can no longer manage. We put in a stairlift (rented), but it gets used with great difficulty and extreme energy. I have my name on various lists, but things move so slowly here. As a result I seldom get out, and have to work daily to keep my spirits up, and hope alive.
I would definitely check out accessible rental places as soon as can be; the ALS society or other community services may help with finding a place. Renting out the condo may work if you have time to screen the renters carefully (e.g. Able-bodied seniors, etc.)
Good luck.
 
I was diagnosed in July and my legs are the issue right now. I still walk but the stairs are not easy. We live in a two story house. We thought about moving the bedroom to the dining room but we only have a very small half bath on that level. We just purchased a ranch condo and close in 2 weeks. We will put our house on the market as soon as we move out. I hope it sells really fast! A condo will be better for my husband too. No outside maintenance. We both still work and he does most of the stuff around the house now. It's too hard for me to do laundry and grocery shop. I am thankful that we were able to buy and then sell. Maybe your parents could rent the condo and they could rent a place.
Good luck.
 
We are in the same place as gjbuddy, we are building a small single story house with wide hallways and doorway and a roll in shower. I can still manage stairs--barely but, know it is going to get worse. We found a community where all outside work is done for us--for a fee of course. I am also very thankful that we had the resources to go this route. We told are children the house was there inheritance. We hope it will increase in value.

Rick
 
I agree with gjbuddy. Having everything on one level has made our lives so much easier, in a difficult time. We were able to sell our house, as it was in an area close to schools, and backed onto a park. I had built it 27 years earlier, and loved to keep it up with reno's and landscaping. As it turns out my son and a busy had just started to look into buying as they felt renting was wasting their money, so I offered ours at a good price, since we would not need to use a realtor, and they went for it. We were able to build a new house with 36" doorways, and an open concept so that my husband has free run in the house with his power wheelchair. I had ceiling lifts installed right away, and as it turned out that was a good thing, as he has progressed quite quickly. We have been very blessed.

Maybe your parent's condo is in the price range that will sell quickly, one never knows.
 
Thank you for all the replies--it's a big help to see how others have handled or will handle this situation.

affected & mrvaughan bring up really good points that underscore just how clueless we are at this point--that we could make modifications that he could progress past needing. For example, I didn't realize that there is a point past needing an accessible restroom. I had just always thought that once it got too tough for my parents to manage alone, that we would hire a caregiver for help to help lift him to the restroom and other daily activities. We have cared for two terminally ill family members before, but never for someone with no ability to move.

Is there any sort of online resource for knowing how to plan for the coming steps, practically and financially? We do go to periodic ALS doctor visits, but they are around 6 months apart and are a whirlwind and so much happens in the time in between.
 
Zoohouse can you please explain to me about ceiling lifts and where they can be purchased. These might be a good idea for our house.

Thanks,
Rick
 
Check on the ALS Association's website. They have some pretty good resources to tell you what's coming. Everybody progresses at a different rate. Also check with your ALS social worker, they are a fund of information.
 
Status
Not open for further replies.
Back
Top