Downsizing While Caring for a Spouse with Alzheimer’s — Has Anyone Done This?

mcboschi08

Hi everyone,

My dad (65) has Alzheimer’s and is slowly declining. At this point, he can’t prepare meals beyond grabbing something simple, and he needs help or reminders with personal care like shaving and showering. His speech and understanding are very limited, and while he’s still in good spirits, his independence has decreased quite a bit.

One of the biggest challenges for our family is that my parents’ house is very large, expensive to maintain, and a lot for my mom to manage on her own. My sisters and I live nearby but also work full-time, so most of the burden falls on her.

We’ve started wondering whether it would make sense for them to move into a smaller, more manageable home. My mom worries that she’s waited too long—that moving my dad now could make things worse since the environment would be unfamiliar.

Has anyone here gone through a move at this stage?

• Did it help in the long run with caregiving and stress?
• How did your loved one handle the transition to a new home?
• Any advice on whether moving sooner vs. later made a difference?

We want to plan carefully and make the best decision for both my dad’s well-being and my mom’s ability to keep up with everything. Any experiences or insights would be so appreciated.

marier

I made the decision to downsize from a very large home with a huge yard etc…in the early stage of my DH disease. He was at stage 4/5.( age 69) I knew I could not continue to care for him and keep the large home and property up . Something had to give. I bought the new home, did all the packing/unpacking and arrange the move. It was a lot and I am glad I did it. This house is easy to maintain and close to church, shopping, doctors and public transportation. The one thing I kept in forefront of my thinking was for my future and what type of home and location I would be needing. The new home has given me more time to care for my DH, way less maintenance , less taxes and less cost of utilities.

Yes, I miss the old home but still glad we moved.

Maru

I think that one of the best pieces of advice for something similar was that the caretker spouse should do what will make them happiest. While you dad will con-in-tinue to decline, hopefully your mother's health will not…although caretaking does wear you down. In the end think more about where your mom will be happiest.

Food for thought for you as I see that you care enough to take action… Last week our 3 local children andI met. Although my DH has ALZ, they were also concerned about me…my health, what the stress was doing to me. So, they wanted us to work as a team in figuring out what to do. One of them found someone to come and clean the house on a regular basis, one was to go to the dr. with us and ask for Home Health Evaluation (they offer a lot of sevices}, another will find resouces for companion services, another will address door security so that DH cannot go out without me knowing it, a better door cameral system, a personal health system for me in case I have an emergency, they all volunteered to come and sit with their dad/father-in-law if I was going to be out for a couple of hours, they offered to have meals sent. I am probably forgetting things. I think you have the point. You mom may be so overwhelmed with things that she may not know how to help herself. Talk with her, make a plan. If finances are not her thing, help with that. Make sure that she has a POA in place as well as Medical POA.

Cathy coconis

https://alzconnected.org/discussion/74207/downsizing-while-caring-for-a-spouse-with-alzheimer-s-has-anyone-done-this

hi I am in a similar situation, but I have to decide for my DH and I. I like the advice you have received. I don’t have time for our property and all other things. But my husband keeps saying, I’m never moving from this house. I haven’t even brought the topic up. I know he is comfortable here, it’s familiar. But I need to think of the future for myself also.

I’ll take any advice if a caregiver has had to handle this, how they’ve approached their spouse.
Good luck with mom & dad

Timmyd

Have you looked at the cost of bringing people in to help with managing the current house? I have known people who are fortunate enough to have the resource to use paid help so that they can stay their larger home. It is only going to get harder for your parents. If they are not financially capable of paid help to stay in the current home, then there is no better time than now to start planning the move to a less expensive residence. To be blunt, money means choices, so consider what choices your parent's have.

Biggles

We made the decision to downsize and move closer to our daughter & her family. DH was early stages of VD although I could talk to him it was really just verbalising my thoughts out loud so in the end my decision. Our daughter helped us find a new house with specific requirements from me. I found this was crucial for our personal likes. eg I didn't want to be in a school zone, didn't want to be near a busy shopping centre, wanted a treed and green area, and close to the sea and yacht club.

I had to organize everything, selling our home, purchasing the new place, dates and timing for removalists etc it was extremely stressful, especially when we had packing boxes everywhere. Keeping my DH mentally in a good place was hard.

We were lucky that we could have a same day settlement for both properties so we didn't have to have interim accommodation. Very well important.

I also think its important to keep all your old and familiar goods and chattels. Familiarity is important especially in the bedroom and living room. No new exciting new bedspreads etc.

It's a lot of work, get as much help as you can because you will be needed to sit and take care of your DH’s needs.

It took us longer to settle in than I expected but I think it was worth it.

I wish you heaps of luck.

SDianeL

https://alzconnected.org/discussion/comment/254618#Comment_254618

I did not have to makes this decision but did have others. It depends on what stage your DH is in whether to discuss with him or not. The Neurologist said it’s best to move sooner than later. If you have DPOA you do not need to discuss with your spouse. Many times we must take control and make the decision based on the needs of both and the safety of the PWD. You could try a fib of some sort. I would hire movers. Maybe take him on a short trip as a diversion. Then make up a fib about why you’re in a different place when you return. I would post your question as a new topic so you will get more replies. Use the plus sign to create a new post.

AlzWife2023

https://alzconnected.org/discussion/comment/254598#Comment_254598

You must be a spectacular mom to have such great children. Congratulations! I agree that spouses/moms in this situation get overwhelmed with the daily stuff and the psychological and emotional burden of simultaneously losing a partner (because they're not your partner anymore; they're your patient) and becoming a FT caregiver, strapped to the house, hostage-like; having to do all the chores, etc. I know because I am that spouse/mom and my kids worry about me, too. Maybe not enough! Ha!

I agree with all the advice you've given.

Maru

https://alzconnected.org/discussion/comment/254651#Comment_254651

I was not a spectular mom,I was young, ignorant and selfish but I did love them to pieces. I think that love covers a multitude of sins. I am fully aware of how very blest we are and give thanks to God for this gift that so clearly I do not deserve. If your kids are worrying about you, you did something right. Good luck ( and prayers) for you in this awful journey.

Robert1320

https://alzconnected.org/discussion/74207/downsizing-while-caring-for-a-spouse-with-alzheimer-s-has-anyone-done-this

Yes. We did it and downsized to a 55+ community where there's a lot of understanding & support for and by senior citizens. It also has many helpful amenities.

In many ways it's like we moved into an independent living home.

JulietteBee

For what it's worth, I would suggest you & your sisters help mom to locate an independent living facility. I believe moving into another house, smaller though it may be, will just be giving mom NEW troubles.

At this point in dad's journey, mom needs as many things to be taken off her plate as possible.

I moved my DM 1 year ago. I believe she was in stage 3 or 4. She cried throughout the 6 weeks of packing, moving, and unpacking. She had desired to "die in my own house." Three kitchen fires later, along with worsening physical health, living alone was no longer feasible.

After looking for many years to find a larger house for all of us to comfortably live together, she was not pleased with anywhere.

Her IL apartment complex provides meals, transportation, activities, outings, utilities, and weekly housekeeping.

Though each apartment has a full kitchen, mom has no need to ever cook again.

Your dad's safety is paramount, but your mom's happiness is the goal. Now for you to decide how best to mesh the two. All the best!🙏🏽

sandwichone123

Remember that if you consider hiring in-home care, you are taking on the job of managing employees (whether hired independently or through a company). You'll be responsible for monitoring performance and dealing with absences.

harshedbuzz

When dad was finally diagnosed in the middle stages of the disease, I moved my parents nearer to me in PA. They'd been snowbirding between the MD beaches and FL and I don't think the bi-annual migration between places hastened his disease, TBH.

Most of the work, physical and logistical of dealing with 2 homes and all their contents fell to me. I consulted with mom around the bigger pieces, but mostly she focused on caring for dad while I worked behind the scenes. We accomplished this by moving them first and dealing with the sales and downsizing aspects later. Many PWDs are loathe to part with anything and don't appreciate the need to move or make things easier for the caregiver, so including them just makes for more work and upset.

You said-

Has anyone here gone through a move at this stage?

I did. Dad had a psychotic episode that landed him in the hospital and then rehab. By the time he was discharged, I'd moved them into a beautiful apartment. Six months later I moved them again because mom wanted a house. I really wanted a CCRC for them but mom wasn't ready. Dad wouldn't have passed the interview process at my first choice but there were others that would have offered them a place. Mom now admits this probably would have been better for her socially.

Neither liked the 2-bedroom apartment. It was lovely and not much smaller than either of their houses, but the open layout and lack of patio was much missed. They both liked the house better. I chose a community that includes exterior maintenance and lawn care. It has all the amenities and is .25 miles to a shopping district with grocery, wine, pharmacy, salons, Talbots, Chicos, banks and a couple of restaurants. My goal was to find a place where mom could age-in-place in stage 8 (after dad died).

• Did it help in the long run with caregiving and stress?
  Not as much as I'd hoped. I mean, mom already had her lawn and maintenance hired out and bi-weekly cleaning. Dad was very clingy and became uncooperative around care which wore mom down. Also, many spousal caregivers see part of their role as protecting the legacy of their LO and may not be sharing how much hands-on care she is doing around bathing and toileting.
  
• How did your loved one handle the transition to a new home?
  He didn't like the apartment but that was mostly about having his autonomy taken away. Early in his dementia, he feared I'd take over his life and rob him of his independence. FTR, I did take over but it was the dementia robbing him of autonomy not me. He'd purposely avoided putting plans in place for this eventuality. I don't think either move hastened his progression.
  
  He transitioned well to the new house. He enjoyed homeownership and the amenities like the pool and clubhouse. TBH, as he progressed, he believed he'd built the house and sometimes thought he was in FL.
  
• Any advice on whether moving sooner vs. later made a difference?
  If your mom wants to move, sooner might make sense.
  
  

We want to plan carefully and make the best decision for both my dad’s well-being and my mom’s ability to keep up with everything.

Who is "we"? This is mom's decision as it impacts her the most. Does she want to move? I would defer to her wishes unless you feel she's so overwhelmed she's neglecting her own wellbeing in which case a day program, respite caregivers or a MCF might be more effective at supporting mom than moving out of a house she'd rather stay in. She may be one of those people who will treasure the home and memories she shared with her DH.

I am Team Caregiver on this one. Dad's terminally ill. His reaction to a move is less critical than doing what is best for his support person. If I had a dollar for every person here who has been saddened by a spouse or parent standing in the home they've occupied for decades— sometimes built with their own hands— and begged to "go home" I could enjoy a nice spa weekend.

One thing to consider is that while a move to a smaller house may lighten mom's load in terms of rooms to keep clean or a smaller lawn to mow (both of which can be delegated to others), it won't ease the burden of dad's care needs which may become more than she can handle when incontinence starts or if dad wanders or develops sleep issues that make life at home unsafe. If you're thinking a move now means mom will be able to keep dad home until the end of his days just know it might not work like that.

Good luck with whatever decision is made.
HB

AlzWife2023

https://alzconnected.org/discussion/comment/254668#Comment_254668

I was a very young mom and I thought I was perfect at the time but looking back…jeez—fortunatley, like you said LOVE SAVES THE DAY.

MargeSimpson

https://alzconnected.org/discussion/comment/254743#Comment_254743

Thank you for sharing all this information!