Downsizing to a new house?

Crkddy

My DW is 4 years into EO diagnosis.  Her health (other than mental) is good, and she is still able to enjoy take-out lunch to the park and strolling afterwards.  I am looking to relocate to a smaller home, but I'm worried how this would affect her.  Any thoughts or experience to share?

Nancy Anne

I am also concerned about downsizing.  My DH says it would kill him.  It's too much for him to handle.   Our home is large and almost 30 years old.  It needs work and he is not capable of doing much anymore.  If you have had this experience and you did make a move, how did it go?

Any pointers on how to handle this are welcome.

jmlarue

I considered a move when my DH was in the early stages of dementia. However, I was cautioned by his geri-psych that major changes like this often have negative effects that I might not want to invite. I decided to take the half-step of purchasing a small vacation home in Arizona where we could escape the brutal winters here in the North. The plan was to live in AZ from October to April and live in our WA home in the spring and summer. The 1st year, he endured the new house, new neighbors, and strange surroundings about 3 months before he started demanding we go home. I tried it again, planning just a short 30 day vacation there in April. After a week, he would ask several times each day, "Isn't it time for us to go home?" I tried this a couple of more times before finally giving up and selling the AZ property. My DH was like a cat on a hot tin roof if I took him away from home. It was really tough living with the high anxiety and restless agitation, with a side order of paranoia. As much as I would love to downsize, I can't consider it. I dread the day he needs to be placed in a care facility. I fear he will be exit-seeking and demanding to go home until his last breath.

Jeff86

I gave very serious consideration to moving.  We live in a large-ish old house, three stories plus basement.  DW really loved this house, but she is ever so much less aware of her surroundings, and I became concerned about her future ability to deal with stairs.  

I consulted with her neurologist, who weighed in against a move.  In the neurologist’s clinical experience, PWDs often experience a setback or progression from the confusion a move can cause.   I ultimately decided that we would remain in this familiar environment.  

Fast forward a few years, and here we still are.  DW has been able, with help, to continue to negotiate the stairs.  So far.   But not out of the woods—not sure what the future holds on this front.  

Battlebuddy

  We were in the process of downsizing when my husband was diagnosed. We had sold our house a month before , and were  in an apartment temporarily. The move was very hard on him .  We had done it partly to reduce his stress from the big house and yard. It helped reset our finances too. I guess I never worried too much about the decision because we had already sold the house and were moving to the next town over.   

    But after diagnosis we relocated a thousand miles to be near his family. That move was very positive . It worked partly because we had lived there before and my husband lived there in high school. but I think  it’s best to do it in the early stages. As time goes on it gets harder and harder to get them to leave their routine. 

    We also ended up buying a vacation home ( more like a very simple bungalow) it was great fun to do that together and I will be able to live there once he is gone. But my experience has been very similar to others on this post. His desire to go there and enjoy it has shrunk as the illness progressed. Toward the end he would enjoy the trip over, but after an hour wanted to go home. He now is bedbound.

         

    

     

harshedbuzz

Crkddy-

I moved my parents back to the area in which I grew up. My mother almost died with him as her advocate; they had to move. My parents were already splitting their time between their place in FL and one on a golf course in MD so I had a pretty good sense that moving dad wasn't going to greatly impact the progression of his disease. FTR, I had noticed personality changes in dad as early as 2008 and significant memory issues by 2008; he was diagnosed at the end of 2016 in the middle stages.

I moved him a lot. In 2016, they moved north to MD in early July. Dad had a psychotic episode in late August and the local hospital was useless, so mom got him in the car and met me in Philadelphia where he was admitted and diagnosed. From the hospital he was turfed to a SNF for rehab for 7 weeks during which time I set them up in a nice senior apartment complex near me. They both were unhappy in the apartment. It was only about 1100 sq ft and too small for them. Mom sold their house in MD in December and decided she wanted a "real house" so I found her a cute carriage house twin in a 55+ community (all exterior and lawn care is included as part of the HOA fee or additional assessments) and moved her there in February of 2017. I also rented out her FL house to generate income and eventually  in late 2017 as a rental in that area didn't generate enough profit to make sense given the hurricane risks.

Dad did progress and I can't say for certain this didn't hasten the progression of his disease, which is an organic process, but it did reduce the burden on my mom which allowed her to be a better caregiver which kept dad home with her until 2 months before he passed. My advice would be to do what works for you. If a smaller house would make caring for your wife simpler for you, do it.

My friend moved with her own dear mom who had dementia. She wanted to add a small in-law suite to her current home but it wasn't able to do so without stairs which would have been an issue. She decided to build in a new community with a first floor suite for mom. It worked out wonderfully well for them. My friend was surprised to find that several of her new neighbors were moving in with a PWD in their in-law suite. 

My mom's in stage 8 now and very happy in her little house. She has lovely neighbors and all manner of shopping, dining, activities and amenities to which she can walk as she is creating a new life alone. She dropped the ball on her own self-care while she was taking care of dad and ended up losing the vision in one eye and the ability to drive- so walkability turned out to be a more important earlier than I expected it to be. 

If you do move, my advice would be to do as much as possible without your DW's input which is likely to be very stressful for her. I did most of dad's moves behind his back-- he simply didn't have the skills needed to participate. His impaired spatial reasoning really dogged me-- he insisted I could park 3 cars in his one-car garage if I just tried hard enough. He had 5 bedroom sets and wanted to keep all of them for the 3 bedrooms he believed he could create upstairs in the new place's 6 x 12' utility closet.

I did go through a charade of touring the carriage house with his brother singing its praises after mom signed the agreement of sale. I don't know if it helped but he was happy with the house. When I did the actual move from the apartment to the house, I set my parents up in a hotel for the weekend so they returned to the new house live-in ready. Within a week dad thought he was in FL and that he'd chosen the previous owners' ghastly paint choices. 

As always, YMMV. But moving didn't seem to harm my dad and it helped my mother in countless ways as a caregiver and after.

HB

dayn2nite2

If YOUR life is made easier with a move, then move.  Now.

Berryette

A year ago- I decided it was time to downsize.  I was nervous about the change and what that would do to my DH.  But I was more nervous about him trying to do things outside on the farm and getting hurt.  I felt like a "smaller world" would be better and safer for him.  The buying process was a little scary- we had picked a house and then one day he got extremely agitated and said that the house was not safe for him and why would I want us to move there.  As if I were trying to hurt him.  He began describing a house that was not the one we were going to buy.  Nothing I did or said would calm him down.  So I decided we would stay put.  A couple months later he asked why we hadnt bought that house.  I explained it all- he did not remember any of what he had said.  Im making a long story- sorry.  Anyway- we did buy it and he is so very happy.  He thinks we have lived here forever!!  He always comments how the house suits us.  I can tell he is very happy.  It could have gone the opposite way- and I am not sure what I would have done then.  But thankfully now we have a home he is in love with and I have a house that isnt killing me to keep up with.  Good luck in your journey.  I will be praying guidance for you.

Quilting brings calm

Neurologists and other experts will tell you that changes such as this will negatively impact PWD- at least temporarily.  That’s true. However caregiving eventually takes up so much time that home maintenance and cleaning falls by the wayside. Sometimes you can’t leave your partner’s side because you need to keep them out of trouble or they want to shadow you all day.  

Sometimes the current home is unsuitable for people with walkers or wheelchairs. Maybe there are open stairs in or outside of the home.  Maybe there are outbuildings with dangerous items in them.  Or cornfields that a PWD who wanders can get lost in.  

It’s also possible that downsizing gives you additional money to take care of your spouse, or moves you closer to friends, family or other resources.  If you are 12 hours away from family as my parents were, it’s hard to get help.

If you feel you will need to move, the sooner the better.  

easy23

Crkddy - I think you should check with a CELA for medicaid planning purposes. You might be creating more joint assets if you downsize.

LadyTexan

Before we had a diagnosis, but when it was clear there was something wrong with DH, We moved a couple of times for a couple of reasons.

We lived in a small rural Texas town where DH had established himself as a successful realtor. I worked 75 miles away in the state capitol (Austin). I was driving 150 miles round trip every work day. When DH could no longer effectively practice his chosen profession, there was little practical benefit to staying in the rural town. I wanted to continue my State of Texas employment in order to meet retirement eligibility. To eliminate my commute and to be near better healthcare services we rented a small apartment in Austin. We subsequently sold the vintage house in Lampasas.

DH was miserable in the small apartment. When the house in Lampasas was sold, he often spewed angry comments at me for "taking away his house". But I felt in my heart it was for the best. He was safe in the apartment. We lived next to a park. The neighbors were great. Plus we had much better healthcare resources which we definitely needed. And most importantly, my office was very close so I was easily available to DH and I was able to satisfy retirement eligibility with my employer.

Our long term goal was to buy a small house in the town where my parents and siblings lived so that I could have support while we travelled the dementia highway. While we had the apartment, we bought a small cottage and had it remodeled for what we anticipated our future needs would be, e.g., easy maintenance, few steps, roll in shower, enhanced lighting.

Shortly after retirement, we moved into the remodeled cottage. It was just in the nick of time to handle my DH's agitation, reduced mobility, and avoid the increasingly expensive real estate market in Texas. My husband became disoriented several times when we first moved into the cottage. He had some set backs that resolved over time. He came to love the cottage. Because of the well planned modifications, I was able to keep DH home with in-home help and eventually hospice.

A big benefit to the town where we relocated was the support of my family. A big drawback was the lack of mental health services that my husband needed during a crisis. 

It was not an easy transition. In the end, it was more beneficial than the difficulties we encountered. 

LadyTexan

I encourage you to consult an elder law attorney. I did regarding our planned purchase of the cottage to determine how it might impact medicaid eligibility in the future.

OrganizerBecky

We moved just about a year ago. We had lived in a split level house and I was tired of hauling groceries and laundry up and down stairs. We sold at a great time and found a duplex on the other side of town. The duplex has 2 beds and 2 baths, kitchen, dining, laundry on the main floor and a bed and bath and a loft upstairs. No basement (which is a gamble in this part of the country). 

Our daughter graduated from college about the time we moved and lives in the upstairs at least for now, so she has some privacy.

I managed the whole thing - sale, purchase, financing, hiring movers, etc. It went very well and I'm glad we did it when we did. 

DH is stages 4-5, so I'm glad I didn't wait. In the old house, he would use the microwave and the stovetop, but he doesn't here because they stove and MW are different (electronic instead of knobs on the stove). Other than that, he's acclimated well. 

harshedbuzz

OrganizerBecky wrote:

In the old house, he would use the microwave and the stovetop, but he doesn't here because they stove and MW are different (electronic instead of knobs on the stove). Other than that, he's acclimated well. 

O'Becky-

When my dear friend built a new house with an in-law suite so her mom could live with them, she parked her mom's little countertop microwave on the counter of her top-of-the-line chef's kitchen. The little Panasonic was a real contrast to the sleek Wolfe and Subzero appliances-- she never once used it and swore it wasn't hers.

My friend also had her gas dryer retrofitted to run on electric at considerable expense (more than the cost of a comparable new model she bought to replace it for the owners of her old house) because her mom still enjoyed doing the laundry. She never touched that either.

Still she loved living with her daughter and seeing her grandsons and their friends.

grmajo

My DH is still in early stages of AD. We moved 2 years ago (at the beginning of the pandemic!) to a small house that is 3 blocks from our youngest child. I appreciate having help close by. The house is easier for me to maintain. The move was not without problems but I had to make the decision that was in both of our best interests. I've never regretted the move. I frequently make comments about how much I love this house. He now also makes those same comments. I know that my attitude has helped him to adjust. Each person's situation is unique, but in our case downsizing was the best solution.

Do what is best for you. 

KathyF1

I too am in the middle of trying to decide whether moving is the right choice. We have no family here, my sister and mom live 6 hours away. My DH is in stage 4-5. We have 100 acre farm (hard to leave). I’m searching for a smaller farm near family. This farm will go on the market next week. So far to be honest the work involved in getting ready for photos has been brutal. Managing my husband is a full time job! He shadows me constantly and just wants to go to lunch. Has no tolerance for me working because it’s not fun for him. I’m trying to get the help I need but that’s not easy! I do think if I endure the process of moving it will be better for DH and me. He loves my family. And the in home help available is much better in my sister’s town than it is out here. Trying to look at the big picture.

Old89

To add to the discussion.   We are moving.   My wife is about 3.5 years from diagnosis somewhere at mid stage.   We have a very large maintenance intensive home.   I do not leave her alone.  She is not a behavior problem but she believes I, her husband of 47 years, is now her brother and does not want me living as her husband.   I am emotionally exhausted.  During a serious surgery a few months ago, I bled internally and nearly died.  Then I realized I really need a durable plan for assuring that she is safe, secure and engaged if something happens to me.  

So we are moving to an independent/assisted living facility in separate apartments.  That way I honor my obligation to be supporting her and keeping whatever relationship there is and making sure she is properly cared for although I am not concerned because it is the best facility I could find in our large metro area.  

It is not what I want, but Alzheimers constrains choices.  I know she will have some struggles with this now.  But given the odds I could die before her (her physical health is excellent) it could easily happen later.  It will only get harder.  

I am engaging her to a degree in order to build some enthusiasm over the project but I know downsizing 47 years of personal possessions is going to be the hardest part.  I think AL offers at least one advantage over a new home, which is that it is simpler in some ways and there are people experienced with these transitions.  I am hoping me being there provides her the continuity and security she will  need.   I hope the continuous care will allow me to get away once in a while.  

Care4Mom2

Reading everyone’s reply has been helpful to me. My husband and I are in the process of moving. He is on board with it and remembers most of what is going on. Like someone else posted, I have done it all — from taking care of the financial end, finding movers, working with the real estate agent, and the builder for our new house, figuring out each possible scenario if our house isn’t ready on time — you name it. My only concern is that if something — God forbid — happens to me, he wouldn’t know what to do. We have a few weeks before we move.

I thought I was successful in convincing him to sell his car before we leave. That may be an easier transition to stopping him from driving. He is having second thoughts about it though. That makes me feel guilty. He really looks at driving as independence. He is afraid that if he has more tests to determine what his condition really is that they will take his driver’s license away… So, driving really means something to him…

OrganizerBecky

harshedbuzz wrote:

OrganizerBecky wrote:

In the old house, he would use the microwave and the stovetop, but he doesn't here because they stove and MW are different (electronic instead of knobs on the stove). Other than that, he's acclimated well. 

O'Becky-

When my dear friend built a new house with an in-law suite so her mom could live with them, she parked her mom's little countertop microwave on the counter of her top-of-the-line chef's kitchen. The little Panasonic was a real contrast to the sleek Wolfe and Subzero appliances-- she never once used it and swore it wasn't hers.

My friend also had her gas dryer retrofitted to run on electric at considerable expense (more than the cost of a comparable new model she bought to replace it for the owners of her old house) because her mom still enjoyed doing the laundry. She never touched that either.

Still she loved living with her daughter and seeing her grandsons and their friends.

Thanks, HB - good thought! However, he sometimes doesn't know that the MW is over the stove and the toaster oven is on the countertop. I'm pretty sure if I put a different MW on the counter, it would only cause more confusion at this point. I'm glad it worked out for your friend and her mother. 

jfkoc

I have never read a post that did not say that a move had a negative effect on their loved one.

All you can do is to weigh the pros and cons and take your best shot. 

harshedbuzz

jfkoc wrote:

I have never read a post that did not say that a move had a negative effect on their loved one.

While I cannot state unequivocally that moving my dad did not in some way hasten the disease process, I also cannot say that it did in any way. In fact, the initial move resulted in treatment to improve cognition of his ARD. My parents split their year between the beach and FL for years. I would go as far as to say the purchase of the house in FL was probably an impulsive decision made during dad's early stages. I do know that moving my parents improved their lives dramatically. IMO, any decision made to support or ease the burdens on a primary caregiver will benefit their PWD. Mom just had more time and emotional bandwidth relieved of the logistics of maintaining 2 homes. 

Similarly, there are those who have found placement produced a positive effect on their LO. We saw this with my aunt. She's been living alone after her husband died well past a time when she could manage her IADLs and some of her ADLs. Her sister found her sitting in a cold dark house with a fridge full of rotted food. Guardianship was sought and auntie was moved to a high end MCF where she blossomed. She was that sweet, befuddled little old lady the staff doted on. She was the sort of PWD who had a sunny take on everything-- in her mind she was a newlywed living in the married student housing at Rutgers right after the war. A healthy diet, socialization, activities and the resident therapy poodle worked wonders. 

daisyflops22

I have also started looking into downsizing & moving. My thinking was that I'd rather do it while he can still participate in the process instead of waiting when he's more likely to be resistant to change. Plus, moving closer to my family will give me a support circle. He's no longer working, so mapping out the finance piece is a huge factor to consider.

ferashilt

My grandfather was diagnosed with Alzheimer at the same time that my grandmother started renovating the house. She asked a neurologist for advice, and the neurologist explained that a familiar place helps the ill person feel more comfortable, so if she wants to renovate, she should still keep some decorations that remind my grandfather he’s still in his house. Based on that, my suggestion is, if you want to move, try to furnish the new house similar to the old one, so it’s not completely new. My grandfather didn’t enjoy being outside during his last years, but he loved their garden, so he would spend a lot of time watching through the window. My grandmother decided to buy one of those glass doors that he can look through, something like this: https://doorsdirect2u.co.uk/product-category/french-doors/
Aside from this, she didn’t make a lot of changes in the house.