Housing Issues Maybe?

wose

Thanks everyone for the warm welcome back. We live in a 3 level townhouse and I’m not sure what to do about our living situation. He has lived here for 45 years and me 15. Should I try to renovate it for easier access or do we move to a one level place? It’s only the two of us and as someone here said “The Calvary Is Not Coming” I plan on keeping him home with me as long as possible.

Pat6177

Wose, this is a very individual question. I’ll just tell you my circumstances. My DH was diagnosed in 2020 with mixed dementia (ALZ and vascular). He’s now 79 and is somewhere in stage 5. He has balance issues and sometimes gait issues. We live in a 1740 sq ft townhome, all on one floor. Over the past year, DH sometimes can’t find various rooms in the house. I’m glad we’re in a small house that’s all on one floor. I can often hear when he is on the move and can go check on him. And since I often have Pandora going on my phone, it makes it easier for him to find me. He’s getting frail and I worry about him being able to walk around the house, specifically going to the bathroom. So I’m glad we’re all on one floor. If your DH wasn’t able to do the stairs anymore, would you be able to arrange it so that he could live on one floor?

wose

Thank you, I can turn our half bath and closet on the main floor into a full bath, then we should be ok. The more I think about it, that might be better than a relocation. He is 75 and I’m afraid he might be more confused. Thx for listening. It’s hard when there’s no one to bounce ideas off💙

charley0419

I’m in same situation as Pat , moved from 3 level of 39 yrs to over 55 community,it’s the move and at time is COVID, that really made the illness come out. My point one level , I’m in gated community, no basement know where she is at all times. Just sold her car yesterday not a happy lady as still wants to drive.

brs

My DH and I moved from a town home 1 year ago to a ranch style home. I'm very thankful we did, physically for him and mentally/emotionally for me. He is able to navigate daily living much easier and I'm fortunate to spend time enjoying my favorite hobby - gardening.

Ed1937

We moved from a 4 bedroom cape cod with a full basement and 1/2 acre lot to a smaller ranch with no basement. This was before dementia showed up. We moved because she was having a hard time with stairs because of her back. If we hadn't moved, it would have been much harder to handle the problems with dementia.

If you were to stay put, would you be able to stop him from having access to the stairs? There are a lot of things to consider.

midge333

We moved from a two story with basement to a single story with basement. It has worked for us. In the future, I will have to add a gate to prevent my wife from going down to the basement.

trottingalong

We live in a small two story home with both bedrooms and full baths upstairs. We will not move from this home, so I’m looking at extending our half bath to include a shower. The difficulty of even considering selling and moving is too much for me and the stress on him would be unbearable. We live in a small neighborhood in the redwoods in a small town. He walks our dog every day and the neighbors all know him. The downstairs is so small, it’s perfect for us. I think it’s a personal choice we all make eventually and there is no right or wrong.

Sitemsek

We have been in our home nearly 10 years and thought it was the perfect solution because it's a custom ranch with only one step into the front door. The problem has become the flight of stairs from the garage into the house. My wife has been walking around to the front door but with winter upon us now that could be dangerous. As I type this, a stair lift is being installed so she can safely get from the garage into the main living space. She's is stage 4 and was hesitant about the stair lift but she eventually agreed (with a little pressure from me). I have no doubt that once she uses it a couple times she'll be glad we did it. Good luck with your decision.

gampiano

Hi there,

Converting to first floor living is going to be necessary eventually, so good idea there. I echo Ed's comment regarding access to the stairs. This was difficult to do in our house. i had to block the stairs with furniture--not ideal. Most of the time my husband was content to be one one floor. There were times even in late stage 7 that he would fight with me about the stairs being blocked, because, of course, he didn't realize that he was incapacitated. Staying in a familiar place is probably a good idea if you can swing it.

Kibbee

Ours is an older two story house, but there is a bedroom, full bathroom and laundry on the first floor. Nice deck out back overlooking woods and a river, easy to roll DH’s wheelchair outside for some nature time. We recently added a wheelchair ramp from the deck, and had the driveway repaved so it is smooth sailing out to the street for longer walks / rolls.

I have been looking at newer ranch homes, but prices and taxes are eye opening, to say the least. Plus the lots are tiny, bare lawns, with not a tree in sight. A condo sounds good, but purchase prices are often as high as single homes, and HOA fees are in the $350 to $600 per month range. Yikes. I keep thinking that for the amount of the HOA fees I can hire a lot of yard maintenance and fix-it folks for my existing house.

wose

https://alzconnected.org/discussion/comment/194162#Comment_194162

Thank you, I love the idea of the ramp out to the deck. We also have a deck off the living room. Our condo fee isn’t too bad at 250 and you’re right about new housing one level. It is unavoidable these days. TY

LaneyG

I agree with others in that single floor living is best. If you can accomplish that where you are that’s great I think.

For some PWD big moves can involve a difficult period of adjustment. We lived in our colonial home for 25 years. We decided to move 2.5 yrs ago when the house became too much to care for as my husband began to decline. At the time he was at beginning stages. We both agreed on the move and our new home which is perfect for our needs. Now in moderate stages he suddenly decided he wants our house back. He says the people there have no right to be there and wants them out. After explaining and reminding what we did he blames me for selling without his ok and forging signatures. He gets irate about it. Now he wants a new house. This has become a daily issue.

harshedbuzz

@wose

First floor living is easier for sure. But there are other factors to consider. I did move my parents out of 2 single-story homes with HOAs that managed almost all outdoor maintenance into a 55+ apartment complex which suited me well but was too small for my parents to be comfortable and finally into a lovely twin-townhouse with a first-floor primary suite with a walk-in shower big enough for 2 in a 55+ community. IMO, the most important factor to consider is where you want to be when you're in Stage 8.

Some things to consider:

Does it make financial sense to move? Moving is expensive and difficult to pull off if you're 24/7 caregiving a PWD. Especially a PWD who is on the more challenging side of symptoms. Between paying for the real estate agent, transfer taxes, minor repairs and certifications as well as paperwork, it might make sense to stay where you are. You could probably put in a lovely bathroom with a roll-in shower for less than a move would cost although workers in the home could upset him.

Mom and I pulled off the move from MD to the apartment which dad was in rehab-- we drove down for the day and got things they'd need immediately like clothing and meds, mom told me what she'd want to get rid of, move into the apartment and into storage. I supervised packing, coordinating with the Realtor (who was just awful) for repairs and staging, unpacking at the apartment and storage so mom could keep dad calm at the new place. I also managed the settlement when it sold. We told dad it was a temporary place to stay while he saw his new doctors. When I moved them into their new house after the apartment they hated, I put them up in a hotel for the weekend and enlisted my niece, her then boyfriend and my son to set the place up so it was ready to live in. LOL, mom still complains about how I set up the kitchen-- it's been 6 years now.

Mom told him-- against my advice-- that she sold what was his dream house in MD. I spent a couple moths smoothing that over but he became stuck on me having sold it for less than it was worth. Ugh. Fortunately, she didn't do this with the sale of the FL house letting him think he was renting it out. I managed that sale which was much easier because I had a great professional in FL and we sold it turn-key so I only had to go there once to collect personal things and ship a car. I filled a PODS which arrived at mom's new house before I managed to get home. It was great.

Some PWD do suffer a progression moving out of their current home and routines. Dad didn't seem to, but he was used to moving at least twice yearly. By the time I moved him into the house where mom still lives, he believed it was in FL most of the time. And also that all the homes on the street were his.

What does keeping him home "as long as possible" mean to you? Some people have a mental line in the sand which will trigger a move into MC. For some it might be the point where he'd need 24/7 supervision which limits your ability to get things done. For others it might be incontinence. Some people are willing to accommodate a spouse at home until they no longer recognize their spouse or home as their own.

Medicaid plays into this as well. If you do not have LTC insurance and/or unlimited funds, you may need to rely on Medicaid as a safety net to fund a MCF or SNF. Assuming you are still alive, you would become a so-called community-spouse and allowed a certain level of assets as well as income on which to live. You would be allowed to keep the home (assuming you are on the deed-- check with a CELA otherwise) for your lifetime so long as it is under a specific value that varies by state. When shopping for mom's house, we purposely chose a unit that was under the state's limit. My current home-- which is downright modest by neighborhood standards-- would appraise too high I'm afraid. Best to check with a CELA for Medicaid planning.

Dementia-proofing can be done. Stairways can be blocked for safety along with the usual measures taken around securing doors and preventing kitchen mishaps. Mom's current home has a long staircase (she has 12' ceilings) to a second-floor guest suite and storage closet with a catwalk between. We didn't realize dad went up there when he was left alone until I went looking for something and discovered he had been looking for his bankbooks for evidence of my thieving ways. A secure baby gate he couldn't operate took care of that. Another hack that worked was putting a black floor mat in front of the stairs. Some PWD develop impaired visual processing so that a dark mat looks like a hole to them, and they'll avoid it.

Will the current home make sense for you as he's unable to participate in routine maintenance like lawn care, cleaning gutters, painting trim, etc? If you can do it yourself or afford to hire it out, then that might not be a factor. My mom's current house has a HOA that does all the exterior stuff except powerwashing, tree maintenance, driveway repair, mailboxes and gutters-- they plow, shovel, mow, treat lawns, mulch, and paint trim.

Is the community conducive to aging-in-place? Some communities have more resources available to support PWD and their caregivers. I know of folks who are very rural who don't have day programs, IRL support groups or HHAs available where they live and who may drive as long as an hour if and when placement happens.

It's a lot to think about.

HB

mrahope

Just putting in my experience FWIW. After my DH came down with a severe infection and high fever, I realized we had to move from our 3 story townhome of 15 years because it was about 14 steps out of the house to where our car was parked, and even supporting him I almost didn't make it to the car to take him to the doctor and ultimately, ER. I knew there was no way I could cope with a more severe emergency, and DS and DDIL were urging me to move to their area.

Amazingly, I was able to do this over a period of about 3 months time, selling the home by the end of the 5th month. DH kept telling me how much he hated the idea of moving from a suburb of a large city to a small, rural university town. He gave me a really hard time about it until we actually arrived. I was thunderstruck by this, but too exhausted to question it. He likes where we live now, and being on one level has given me a measure of peace of mind. Also, he didn't progress as some others did, but kinda maintained as he was. After six months he is progressing now, but no more quickly than he did in the other location.

I would say if you're going to make the move, sooner is better than later. Also, look carefully at access to health care in the new location. Check into every specialist you think you or your DH will need. That's the only thing that's been more difficult here. And I agree with the previous poster who said, consider where you want to be in Stage 8.

harshedbuzz

@wose said:

Thank you, I love the idea of the ramp out to the deck. We also have a deck off the living room. Our condo fee isn’t too bad at 250 and you’re right about new housing one level. It is unavoidable these days. TY

I have a friend who built a home with an in-law suite in order to care for her mom. She ended up with a massive house on a larger suburban lot with a HOA. She did add a deck with a ramp and getting approval ramp meant compromising on where it was because of the code requirements for ramps. In most places, this is going to be 1' of length for each 1" of rise. Her ramp had to drop from a first floor deck over a basement that was only partially below grade because of a hill. That made for a long ramp with switchbacks to meet the required setback from the properly line and also not block the egress windows in the basement. The plan went through several revisions before the township and HOA both signed off.

In the end, it worked out great as she could take mom on walks in her wheelchair along the community nature trail.

HB

wose

Thanks everyone, I’m going to read and reread all of your great ideas. So much appreciated when things are all jumbled up.

wose

https://alzconnected.org/discussion/comment/194235#Comment_194235

Thanks HB, that was so kind of you to help me see all scenarios 💙

wose

https://alzconnected.org/discussion/comment/194240#Comment_194240

Thank you so much for taking the time💙