To move or not to move... I don't know what to do
I don't know what to do… We looked at a house this evening that would fix a lot of issues. It is in a neighborhood with an HOA. They mow the yard and shovel the driveway and sidewalk. For me, the big deal is that the primary bedroom is on the main floor. I have osteoarthritis and it isn't going to get better. The house is near where we live now, so DH won't get lost as easily than if we were moving elsewhere.
DH just keeps saying it will be so much work for him. I keep reminding him… "so much work for us." I mean, who will be doing it when he can't anymore? He is annoyed that I want to do this and I just don't know what to do. I have to think of myself, too.
Comments
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Someone on here once said, ask yourself if this is where you can see yourself in Stage 8 and let that be a part of your decision making. If I were in your situation I would probably sit down by myself and make a pros and cons list. Most of the time the answer has come to me when I do this exercise. It isn't always which side of the list is the longest. Sometimes the answer is X because as I am writing the things down I realize one or two things are really what I care the most about and if that isn't honored I will be unhappy with my decision. Sometimes it shows me I already knew the answer but the exercise gave me confirmation. I am sure others will have great suggestions and Keep us posted.
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I am in the midst of fighting the same battle. While DH claims to understand the need to move "eventually", he thinks "eventually" will be in 10 years. Members of my in-person support group reminded me that people with Alzheimer's cannot recognize their limitations, he would never agree to move, and I needed to be the one to make decisions based on what was best for both of us. Shortly thereafter, I met with a realtor and we are in the process of getting our house ready to sell in the spring. I think seeing all the hard work that has already been done towards that goal has actually helped DH realize he is no longer capable of maintaining the house and moving to a maintenance free townhome would relieve a lot of stress on both of us.
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I'm weighing a similar decision. My DW and I are in our dream retirement home, mortgage paid, walking distance to the beach in the San Francisco Bay Area, and just inland from world class hospitals and universities. Our close friends, neurologist, other critical specialists, and a great adult day program are all nearby, but her sister and extended family are all in Tucson and Phoenix. When DW eventually needs in-patient memory care, a nursing home, and eventually hospice I know she and they will want to be close. These folks have said they will step forward and help with visits and support, but we'll have to be local.
I asked DW whether she wanted to move to Tucson and she said "No". From her perspective the best time to move would be after she no longer knows or cares where home is. Perhaps when she's in memory care.
I want to think we don't need to move yet but then I realize we're both as healthy as we'll ever be today, and logic tells me the time is now. I've never wanted to live in the southwest but I remind myself that I'm the one who still has the ability to choose.
A lot for me to think about, definitely.
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"These folks have said they will step forward and help with visits and support, but we'll have to be local." Sadly, rarely happens in most families. And if she is placed you won't need the literal heavy lifting of providing 24/7 care. And she may not remember them .
With Prop 13 and today's mortgage rates would be difficult to move back to Calif. . Her saying "No" is a gift to you if her relatives try to guilt you with 'oh we want to see her ' —they can fly over and do that now.
Decide on where you want to be in Stage 8. Until then , offer a list of b&b when they come for a visit. Or Zoom visit, if that doesn't upset her.5 -
I agree with others that the decision is where you see yourself at stage 8. Any move should be moved sooner than later because of the difficulty of moving a person with Alzheimer’s into a new home and area.
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Be careful about moving away from your current support system of doctors and close friends. You will have to totally re-establish medical care and friendships. Making new friends in a new community with a disabled spouse may not be that easy, and if what I've read on here from others who post is true, family may say they will help but when it comes down to it, how much will they really be there? Will they drop what they're doing and come over to help when you get sick? Will they help with bathing etc because she refuses for you? Will they be there more than coming over once a week to visit?
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@Call me Gram
Another vote for moving to the home in which you picture yourself in Stage 8. Relieved of caregiving, you're not likely going to develop a sudden interest in lawn care and snow removal, are you?
When I moved my parents out of their homes in MD and FL, they were unhappy in a lovely 55+ apartment. I found a place that is exactly as you describe; you're not moving to Lady Slipper Lane, are you? The age-in-place design of the home and the amenities (pools, gym, activities, clubs, etc.) offered have been ideal for my mom in stage 8. The first-floor primary suite was safer for dad as his visual processing and physical strength become unreliable.
This is how we made it happen.
My first piece of advice would be to leave your DH out of the decision-making. He doesn't have the skill set to make a reasoned and informed decision. He's likely too apathetic to agree to something that requires effort and lacks the empathy to care whether it's better for you and your achy joints.
I moved my dad a lot that first year around his diagnosis. From the place in FL to MD, from MD to the hospital where he was diagnosed, then on to a rehab in PA and the apartment. After we sold the MD house, mom bought the place where she lives now. I learned the hard way to keep dad in the dark as much as humanly possible. It was kinder and easier on all involved.
The move to the apartment happened when he was in rehab. We didn't list the home for sale until he was moved out of it. He left rehab and came home to a new place we presented as temporary while he saw his new docs in Philadelphia.
When they moved to the house 5 months later, I picked the community for them. Mom and I toured and she selected the model/unit she wanted and then she brought dad and his brother (who was in on our plan, to sing its praises— dad really trusted his brother). Brother talked about how nice it was and what a great investment it was. They stayed in a nice hotel for the weekend while my niece and I oversaw the move. By the time they came home on Sunday evening, the house was turnkey ready to live in. Dad did not participate in any of the purges of stuff or decisions about what was kept. We temporarily stored some things, so when he carried on about me stealing his things or throwing them away, I could pull up pictures to show him the inside of the storage unit.
My second piece of advice would be to excuse him from the chaos of moving. If you can afford to, it would make sense to move into the new place before staging and selling the old one. The spares you trying to keep it "ready to be shown" with people living in it and having to leave while other's tour.
If you have family or friends you can enlist, I would come up with a plan to have them supervise the move while you visit a friend for the weekend or go to a hotel to celebrate a birthday or something. If you don't have people, perhaps you could throw money at this and pay the movers to unpack.
Dad really liked his new place better than the apartment, but you don't have that dynamic. When dad would lament leaving his places in MD/FL, we'd counter with what a great investment the new place was and how smart he was to find it. He liked making money so this appealed. In your specific situation, you could make the move "on you" and frame it as doctor's orders.
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To Chris D…Consider this decision to move carefully. You are already living in your dream home, you are established with all the doctors you need, your wife doesn't want to move. You have local support from a network of friends. That will become critical for you, the caretaker, as time goes on. You are considering a move because sister and extended family say that they will be supportive. The sad reality it that as a POD get worse, very few people want to come around and even fewer will actually help. Please forgive me for butting in and giving unwanted advice. I've been on this site for 2 years and have seen so many comments about family and friends who say they will help but never do…and then the comments on how critical it is for the caretaker to maintain social connections. Your world will get smaller and smaller; you will need a friend to lift you up.
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Thank you for sharing your experience… it is very helpful!
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While she was still in Stage 4, I moved my DW and I to her dream home in her dream location. I never really thought I would want to live up here and did it all for her. Once we moved, I realized that this house and location were actually her gift to me. Being near a beach I could quickly and easily access for my own respite while caregiving helped save me. Having that same beach to walk now while I'm trying to recover from caregiving and the loss of my DW has been another gift. She enjoyed the location for about a year, I think. Me? I'm going to love that I live here for a long, long time.
Definitely, definitely make this decision based on what will most likely help you survive the caregiving and a place you can see yourself in Stage 8. I'm with the others that family claiming they will help wouldn't be a strong enough reason for me to move.
I will say, I approached the move myself all wrong. I had such denial in the early stages, I thought I could still act like superwoman and take it all on. I packed, I drove a moving truck, I did all the unpacking and setting up the house. If I had to do that all over again, I would hire packers to pack and unpack boxes. At least I was smart enough to hire guys to move things in and out of the trucks. But man, had I forgotten how hard it is to move and I had wildly under-estimated how little my DW could participate in making it all happen.
Hugs.
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Hey Chris,
My DW was the oldest of 6 kids and had 14 nieces and nephews. They will maintain that they are the closest family in the history of the world and no group of people love each other more than they do. Only 1 family member me helped out, because I begged her to. I will be grateful to her until the day I die.
I ended up flying her up or paying for her gas when I needed respite. In the last 2 years, she came almost monthly. I'm in far northern Cal and she's in the Bay Area. Though it cost me a bucket of money, it worked. I got what I needed in support, the sisters got to be together, my wife got to live in her dream home and location, and I found out I loved living here and this beautiful space gave me something to be grateful for during the utter misery of being a caregiver of a person with dementia.
Hang in there!
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Two and a half years ago we moved from our hometown of 72 years to be near our daughter (three states away) after my DH was diagnosed with ALZ. It has been a mixed bag of emotions since. It has been ridiculous trying to find new doctors we trust (still a work in progress). We have no friends here in spite of trying to “break into” this community. Once people recognize DH has memory issues, they become skittish. Sometimes our daughter and son-in-law give me a break of a few hours but I am left alone with no friends and no place to go. They are both busy professionals and even though they are willing to help, their time is limited. I knew all these things were a risk but I thought there might be more good to be found than downsides:
Personally, I am lonely, isolated and very unhappy here. My DH seems content enough because he really doesn’t remember where we live now or where we lived before.
I have no idea if there is any place to live that would make this nightmare easier. In my heart, I doubt it.
If we had not moved, I would have always wondered if moving would help. What I think I have learned is that just coping is the best you can do. Where you live may or not help your journey. For those of you who do move, I hope it helps. For those of you who stay where you are, I hope it helps.9 -
Thanks for sharing. There is never a catch all answer for any of us on this journey. The only thing that comes close is " it is never easy".
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I agree with Victoriaredux… if you don’t want to live in the southwest don’t. Think about where you want to be. I agree that the help may not materialize.
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Thank you for the support. It means a lot, and was much more than I expected!
A theme in so many of the comments on this thread was an emphasis on my well-being as the caregiver, my need for friends and support, and thinking ahead to Stage 8. No matter how hard I try I seem to underestimate all of that - and to downplay what seems to inevitably wait for my DW and us at the end.
@Victoriaredux
Hadn't thought of Zoom but it's something we all understand though maybe not love. I'm already preparing a bedroom for a guest - just need to buy a bed. And as far as moving out of California goes: yup, that's a one way trip (at least for our budget).@BethL
The thought of building a new network of specialists for her and me has been overwhelming. It's not enough to have a doctor or program - you want a great one. And it's not just the doctors we need today, it's the referrals to the specialists and programs we'll need in the future. The people we work with today know and care about both of us. (We're lucky, I know.)@Maru
I have experienced that sad reality already as my DW gets worse. It's hard to be close with a PWD as she changes and slowly loses the ability to communicate.@CindyBum
It's a great reminder - her elder sister can afford the flight at least some of the time, and I'd love to fly her nieces or grandnieces fly out if they'll come. I've already cleared out the spare bedroom that had been an office plus storage. I just need to buy the bed for in there.@WIGO23
Several of our doctors have truly been guardian angels. They could not be replaced, though I know from experience that while there are no guarantees, others can appear. Just coping is about all I can do, a lot of the time. Getting respite time while DW is at a day program helps, as does an in-person caregiver support, and this on-line forum.3 -
Wow, there are lots of really insightful comments here. I didn't see mention of DH current state and that could make a difference for you. None of us knows what your right answer is, but I like the idea of thinking ahead to the end of the Alzheimer's trail. However, I have been giving thought to the future too (DW maybe stage 5/6) and although we are in a condo now, I am not sure if this is the area I want to stay in. But I wouldn't move now because of medical care, family here, and good MC options. Let me also say though, that condo living isn't always as good as it sounds. "No more shoveling, lawn care, roof repairs" sounds good, but with monthly fees rising 5% a year, sometimes more, it would quickly make one reconsider. Also, some associations haven't started planning early enough for reserves needed for roof repairs siding, etc. So, you could run into assessments. All that said, if you know the area where you want to live and it won't disrupt DH care, plus has a bedroom on the ground floor for your future, it could be a good thing. But maybe you can find something without an upstairs at all. Eyes wide open and best wishes for a good resolution.
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DH (early stage 5, from what I can tell) became so distraught about moving that I dropped it. The new house would have been about 1/2 mile from where our home is right now, and it could have solved some issues (like mowing when we are traveling to visit family, not having to climb the stairs multiple times per day, etc), but it's not worth the stress it was causing him. DH couldn't bear the idea of going through his things and getting rid of stuff, or dealing with the process of moving.
I realize that all of those tasks will be my job when he progresses, but it is what it is. I think it might be easier to handle it myself later, than having to deal with DH processing it right now. So, I threw in the towel.
I'm praying my knees will hold out as times passes.
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For those thinking of moving here’s something else to consider.
My DW eventually needed to go into Memory Care. She was there for three and a half years before she past away. I live in the San Francisco Bay Area, the cost of a MCF here is astronomical. When she needed placement, I actually considered moving to an area where an MCF cost half as much. In the end we didn’t move and the overall cost was far more than it would have been in a lower cost area.
So if you think a MCF is in your LO’s future, and you’re thinking of possibly moving from a high cost of living area to a lower cost area, or vice versa, you might want to factor in the issue of the potential cost of a MCF.
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This decision is a very personal one and everyone's situation is unique. I moved DH cross country, closer to my son's family. We left family behind, doctors and a home we had remodeled and lived in 40 yrs. DH's health has declined rapidly in the past yr and it was important that he could understand and sign documents for the home sale. We are starting over with Drs and switched to original medicare. DH doesn't like Drs and only goes once a yr. I realize he will decline further and will one day be gone. This move was more about me and what I need, both now and in the yrs ahead. I need to be closer to the younger grandchildren who we've only seen a couple of times a year. Now we go to football games and get to watch them grow up. We bought a house in a quiet wooded neighborhood with a view of a small lake from our front porch. When DHs world shrinks further and we stay home more, we can look at the geese and ducks on the lake and see the fireflies in the woods from our back deck. I can't change DH's prognosis, he's going to decline here as well as in CA but finally doing what I need to do to allow me to find some happiness in this long terrible ordeal. Being here will help me in stage 8, it's where I want and need to be. Was it a heck of a lot of work? Absolutely, without a doubt the hardest thing I have ever done. I know in my heart it was the right move for us at the right time. I'm not trying to give advice to others but do consider yourself and your long term needs and happiness when contemplating this decision. Many of us have put ourselves last by necessity when long term caregiving. We will likely survive them and we need to think about happiness as well.
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You're right, the cost of memory care should be a factor in my decision.
I didn't mention cost of memory care in my post but it's on my mind. I've looked at the price for places within about 60 minutes drive, which for me would be San Mateo, north San Jose, and South San Francisco, and they are Astronomical (perfect word). That was part of my reason for considering Arizona.
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There are also smaller licensed homes - RESIDENTIAL CARE ELDERLY- that have up to 5 or 6 residents in a single family home. You can read their state inspection reports on line.
Depending on how social your wife is they can be a less expensive option. Easier to get a single room at them also. They maybe closer to your house for easier visiting.
[Not to be insulting but suggest watching a weather site daily for a while for the part of Arizona you are considering. Then look at the foggy morning and seagulls where you are and ponder if you'd enjoy the Arizona weather as much]1 -
I've just become aware of the smaller home-style places. Based on what we're seeing as she interacts with others in the day program she's attending now, what matters to her is there are enough people at about her level of her ability for her have as friends. She's supportive and kind with the ones in chairs or non-verbal, but to be happy she needs a peer group. So a smaller place could be very nice.
As far as Arizona weather goes, LOL! I'd never choose it for myself. I used to tease her about the insanity of living in the Sonoran Desert where there's no water. If the sun didn't kill you, the javelinas might, and the scorpions definitely would. Everyone hides in air conditioning all of the time, but I could sneak out for a run at 5AM to get ahead of the heat most of the year.
And it's the pelicans which knock my socks off, though gulls are cool, too. 😀
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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