Should we move?

MaGary

 Looking for advice on whether to move to be near our children and grandchildren now that my husband has been diagnosed with ALZ.  He is in the early stages.  He drives, plays pickleball etc. but has many problems.   He agreed to move but the process of looking for a new home 9 hours away from our home of 31 years is very stressful for him.  I am torn between moving now while we can still enjoy the new house, warmer climate, the grandchildren or waiting because knowing this lack of the familiar stresses him out.  The children want us to move so they can help out and will not have to fly back and forth to see their father.  We hope to find a one story home, which we don’t have now.  My husband had a major back fusion operation last year and this has led to some mobility issues. He is very cautious around stairs.  I am afraid that moving may cause him to decline more quickly.  But it may be enjoyable for him to be near family and to downsize.  Any thoughts would be welcome. 

 

MaryG123

Where would YOU like to live MaGary?  Your husband will struggle to adapt, but you’re the one who’s life will turn upside down in the coming years, and you need to be as secure as possible.

Laurie1282

My HWA and I are in the same dilemma.  Luckily, I bought a second smaller, one-story home near our kids and grandkids when he was first diagnosed.  It is halfway across the country, and he doesn't want to leave our current home of 35 years. My husband cannot drive anymore, but still gets along pretty well. I recently came to the conclusion that I need to do what will be best for me as the disease progresses.  He cannot make good decisions anymore, so I just have to do it. He may not like it, but pretty soon he isn't going to care so much.  That sounds crass, but it's what I have to think.  I will be a better caregiver with the help of our family nearby.

jmlarue

Hard decision - so many a variables to consider. I agree wholeheartedly with MaryG - where do you want to live out the rest of your days? I chose not to move because the idea just stressed DH too much. Now, he doesn't even recognize this home of 32 years. We could be in China for all he knows.

One thing you may not have considered is that a PWD eventually struggles with the noise & chaos of family gatherings, especially if young children are also in the mix. If you're thinking this move will allow him to enjoy birthday parties, family dinners or BBQs, Christmas & Thanksgiving celebrations, or school recitals, etc., just know that there may come a time when he will not be a willing participant. My DH (Stage 6e) no longer recognizes his kids or grandkids and acts like he's wearing a hair shirt for any get-togethers longer than 20 minutes.

Finally, you need to have an honest discussion about the sort of "help" you can expect from the family you're moving closer to. They don't have any understanding of the sort of help caregivers will need as the PWD declines. Families where both spouses are employed and still raising children face the challenge of finding free time in their schedule to take over as caregivers so you can get away for a few hours to care for your own needs. Often times, when family says they want to help, it doesn't include cleaning up a LO who has become incontinent, or wanders off, or asks the same questions for hours on end. It's difficult to predict whether your DH will remain easy to care for as he declines or whether he'll have difficult behaviors that drive people away. I would suggest you have these hard discussions so everyone has some understanding of the concepts of hands-on help vs. just being supportive.

If you do decide to move, I would suggest you do that soon while your DH can still actively participate and be a help instead of a hindrance. My opportunity to move evaporated over a year ago. Trying to downsize and move now would mean dragging my DH every step of the way. Doing everything on my own is too overwhelming to even consider. 

Faith,Hope,Love

I've been wondering about moving too.  We live in Florida, and we don't have any family or friends here.  The only family I have left, is in New Jersey.  My sister and niece live there.  I love them and would like to be near them, but not sure I want to live in New Jersey.  We're pretty used to Florida weather. The house we currently live in is two story, and too big for just two people.  And there is a lot of property to take care of.  There are several retirement communities around here.  I'm thinking about downsizing and making a move to one of those.  I hate to think of leaving this house.  I love it so much.  But maybe I need to be realistic in my thinking.  I don't know.  I've started cleaning out a lot of stuff to donate.  It's all that stuff we thought we had to have and now it's just become a burden.  Maybe I'll be able to decide once I get more of this stuff out of here.

Ed1937

When jm said you need to let them know what to expect, she was right on the money. You wouldn't want to move thinking of all the help you will get, if it isn't going to be there. But if you decide to move, I also think she's right in saying to do it before he gets much worse. Of course the time will come when he won't care where he is, but that could be a very long time from now. Also consider where you want to be when your caregiver duties are over.

JJ401

Should we move? It’s a question I have been pondering lately. We have already downsized once. We are now in a small 1960s ranch. The size is perfect, but how much longer will DH be able to continue the outside upkeep? Plus our one bathroom is small and not handicap friendly. Where would we go?

We are near our kids. My kids are good emotional support. His kids — I don’t expect to receive any aid or emotional support from them.

I’ve started to have some home repairs done (with an eye toward resale). DH doesn’t see, and hasn’t seen, anything needing to be done, for several years. I’ve discovered that if I just contract for it to be done, he doesn’t object. So things are now being done. When the workers show up, he hides and plays solitaire on the computer until they leave. He’ll then admire the work and say they did a good job.

Should we move? We won’t right now, but someday, probably not that far down the road, we will. I see a one floor, two bedroom, condo in our future.

Should you move? Look carefully at your options and make the decision that is best for you.

KathyF1

I’m in a similar situation and I chose to move to be near my sister and mom. We have no family here and as much as I love our farm, I’m realizing the isolation is not good for me or him. Yes moving is stressful but having the support of family makes it worth it. We found a small farm ( I have horses) just 5 minutes from mom and sister and the town- which has better resources than here, another plus. I think you have to think of the reality of how hard it would be to care for him without the support of family. Prayers are with you!

Ernie123

I would suggest you think about the long term, which may not be that long depending on how fast the disease progresses. Providing care at home will become increasingly demanding and being close to family who can help is a plus. But also consider what care facilities may be available in the eventuality that providing care at home becomes more that you and your family can do. Everyone hope to keep their loved one at home as long as possible, but advanced stages can bring aggressive and delusional behaviors that cannot be managed at home safely. Researching what MC facilities are in the area should be part of your plan. Also, your needs as a caregiver are very important. Having family nearby can be very important for your social and emotional well being. If your LO is moved to a facility care eventually and you are alone, being close to family and grandchildren could be a real lifesaver for you.

Pat6177

If you anticipate that your LO will go on Medicaid to pay for long term care, then you should compare Medicaid in your current state to the state you would move to. Maybe talk with a CELA in the state you would be moving to.

MaGary

Thank you.  Luckily we have long term care insurance and will not be on Medicaid.

ThisLife

My therapist has reminded me again and again that my H's quality of life is going to go down no matter where we live or what I do. Decisions need to be made with an eye toward the quality of my life. 

Do you have a social life and support where you are now? Where do you want to live after dementia? What do your children mean by "help out?" What do you envision? What do they envision? Needs to be discussed in detail. Take a realistic look at their lives right now (work, lifestyle). This is probably not going to change. Which area offers easier and cheaper access to daycare, in-home care, or MC?  Doctors for PWD?

I moved at DS request so we could be closer to the family (includes 2 grandsons), and they could help. I had friends, social life, and a job. Help for/with H is nonexistent (though intentions were good.)  My H is unpleasant, so we have been included in three family meals in 10 months. I have no way to make new friends or socialize because H cannot be left alone. Daycare and in-home care seem to be difficult to access here. I now know, this is not where I will live.  Knowing what I know now, I could have downsized where I was at. Ask good questions and do some research or better yet ask they family to do some research.

harshedbuzz

MaGary-

I moved my parents closer to me when dad was initially diagnosed. Mom almost died with dad as her advocate, so it made sense to move them back to where they raised me.

While I was happy to be relieved on the long drive to see them in MD during the warm months and the flight to see them in FL during the winter, it was a big loss for my mom and a lot more work for me to have them local and enmeshed in their live(s) to the degree I am now. I was in my early 60s, married to an easy-going saint and my years as a SAHM-advocate for my son with autism were winding down as he transitions to a more independent adulthood. I had the time to do this without taking too much away from my little family. If your kids are younger and busy with careers and younger kids, they may not be able to offer much in the way of hands-on help.

I would ask what their offer means. A weekly visit and help with shopping? Will they stay with dad so you can get a break, or will they be hoping you watch their kids? 

In your shoes, I would advise you to assess where you want to be when this is over. Do you have friends and a social life you'd be leaving? Making friends in a new community as an senior can be hard. My mom did pretty well at 67 in FL where everybody seems to be from somewhere else and happy to meet new people; when I moved her back to PA to a nice 55+ community as an 80-year-old it did not go as well. People here are from here and already have rich social lives with no desire to make new friends. When I take her to the pool on weekends, a few "younger" folks will try to engage me but not her.

Consider the quality of care available in each place. It's great that you have a LTC policy, but availability of care can really vary. Where my parents lived in MD, there was only one nearby AL/SNF with a 3 star rating from Medicare within a 30 minute drive. When I placed my dad in PA, I drove by 11 facilities with higher ratings on the way to the place we picked and they've since built 2 more. 

I moved my dad while he was in a SNF for a post-hospitalization rehab stay. Mom and I decided. We did not consult dad-- we created a fiblet about doctors wanting him close by why they figured out why he was weak and tired pointing out that we had better doctors locally than he did. I moved some of their stuff from MD to an apartment near me and mom listed the house for sale. When it sold 5 months later, she wanted to buy a house so I found a cute place in a very walkable place with all the amenities for her. After she signed the agreement of sale, we took dad to tour it which left him thinking he'd made the choice which made him happy. The weekend of the move, I put the pair of them in a nice hotel and scrambled with my niece, DS and a team of movers to get the house ready to live in. I don't think dad could have handled the stress of the move and making choices about what to keep, donate and where to arrange things. 

In the time around the move, I did all of the logistics-- staging, moving, dealing with Realtors, packing, shipping vehicles, gathering medical records from 3 states and creating a new medical team for them here. (Mom has seen 14 different specialists in the last calendar year/dad had 6 when I moved him) Once here I had to register cars, arrange insurance, get them registered to vote and such. Unless your DH is easygoing, getting this done will require assistance. This sort of thing would have been overwhelming for my mom, especially if she had my dad in tow given that he was in the mid stages. 

HB

jfkoc

and.....do check out the quality of medical care where you might move to

elainechem

My husband had EOAD. We had lived in a rural area for 26 years. I made the decision to move when he was in the middle stages of the disease. My husband didn't want to move, but it wasn't up to him anymore. I had to have him in a safer home closer to services. After a couple of years in the new place, he completely forgot that we had ever lived anywhere else. 

Moving closer to children is nice if they're going to help you with caregiving. Often times, they do not. Just before we moved, I started bringing in help for a few hours a day, one day a week. I increased the number of days paid caregivers came in gradually over time. That made it possible for me to care for him. Our children couldn't help because they had their own careers and families. 

I recommend moving earlier rather than later in the disease so that they can adjust to the changes. And move where it would be best for YOU. 

Beachfan

We downsized and “moved”, although the distance was less than 1/2 mile. Our home (3 stories, 4 br, 2.5 bath, on a huge lot with extensive landscaping) made downsizing a no brainer; moving was a necessity.  We renovated the first floor of a carriage house on my daughter’s property - - no steps, 2 bedrooms, small and cozy.  Shortly after, our son moved back home from out of state; he is 2 blocks away.  We didn’t move with the intention of enlisting help.  “Help” worked full time with families, pets, and activities.  I found it easier to care for DH alone, but family was always nearby for support.  

To me, the difference was in having the grandkids nearby.  Prior to DH’s placement, they provided a nice diversion to caregiving.  Once DH was placed (November), having 7 kids, ages 7 to 16 within walking distance became a constant source of entertainment.  Truth be told, I am now the “help” and it keeps me busy and young at heart.   If I were all alone, I think my story would be different.  

You have received a lot of great advice, opinions, and food for thought.  I don’t envy your task, but wish you well.  It is a monumental decision; I would just caution that it’s possible that you will be alone someday and where would you like that to be?

Waldorf

I would recommend very much that you move now as it will get it more difficult as he declines. After 3 falls and 2 badly torn rotator cuffs, I decided we needed to move quickly. My DW was in a long slow decline with dementia. We lived in a 2 story with steps to go into the garage or outside. I moved the laundry room from downstairs to upstairs for safety purposes lugging the basket. In hindsight this only increased the amount of work and frequency of step travel. We moved into an over 55 community, one story, no basement, no steps except for door thresholds. She now has a problem navigating the 2" thresholds because of depth perception. It took about 3 months for her to learn where the light switches are and after 1.5 years thinks one of the bath rooms is next to the laundry as it was in the old house. We are now 10 min  away from one daughter and 20 min from the other. They fill in when I need to grocery shop or have other errands to run. It would be much harder without them. I waited to long to make the change and often wish I would have made it sooner,

MaGary

Thank you so much for your story. It was comforting!  So glad you can enjoy the grand kids.

MaGary

Thank you!!!