Should We Move?

WIGO23

This is my first post. My DH was diagnosed last April with ALZ. We are both retired and in our early seventies. We live an eight hour drive from our daughter and across the country from our son.

DH no longer drives because of navigational issues, has short term memory issues, trouble following directions at times but overall we are coping and learning to navigate these new changes and losses.

I would really like to hear from those of you who moved to be near family after this cruel and scary disease came into your lives.

Our daughter, whom we are very emotionally close to, wants us to consider moving near her and her husband so they can help with care. They are childless by choice, both professionals and we likewise have a great relationship with our son-in-law.

Any experiences both positive and negative you encountered in making such a move would be most appreciated.

I will add that we have a small circle of friends who have dropped off noticeably since DH’s diagnosis. We have lived here our entire lives and leaving seems extremely hard to imagine but I cannot stop wondering is it the best for both of us?

ThisLife

Our son and only living child asked us to move cross country so he and the family could help more. That didn't work out-active teens and high-powered job. Had some friends of mine that were helping a bit where we were, and I had a good social life there. Others here have had good outcomes moving to be near family. One thing that has struck me here is the question - Where do you want to live when this is all over? I believe I would have made a different choice if I had considered that. Please keep in mind I'm just one person.

KathyF1

I think moving near family is wise. My husband is stage 5, we live on a large farm in a remote area with very few friends. We moved here 10 years ago and after he started having symptoms it became harder to socialize. We now have a contract on the farm and are moving to be near my mom and sister. I’ll still be able to have my horses (thankful!) but it’s a much smaller farm. But we’ll be 5 minutes from family, and have more resources for good in home care too. For us it was the right decision. The isolation here is not good for us. Praying you’ll make the right choice. But my suggestion would be to strongly consider making the move.

WIGO23

https://alzconnected.org/discussion/comment/187100#Comment_187100

https://alzconnected.org/discussion/comment/187101#Comment_187101

Thank you for your story. One of my concerns is we would be moving from a large city with lots of good medical care and home care options to a much smaller community. It is a college town that has some good medical resources but not on the level available to us now.

WIGO23

https://alzconnected.org/discussion/comment/187100#Comment_187100

i appreciate your candor. Even though I feel our daughter and son-in-law are willing to help, I have the concern that they may not really have the time they think they do. I seem to be able to think of many reasons why it would not work out as expected. Finding reasons that support it working out come to me less often.

jfkoc

I would go where the best care options are. Make a trip and investigate Drs and facilities.

Kat63

I made the decision to move from Ohio to Texas to be near our daughter, SIL, and grandson 2 years ago. It was a major decision and my DH was stage 5 at the time and could not help with any of the aspects of the move, but I knew it was the right decision for us as knew our daughter would be good help with everything. We enjoy going to all our grandson’s sporting events and pick him up each day from school and help with getting him to practices etc. This involvement has been so good for me, as gets us out of the house everyday, it helps our daughter and SIL and helps me mentally and DH can do all of this with me. So moving was the right decision for us, but everyone’s situation is different.

WIGO23

https://alzconnected.org/discussion/comment/187122#Comment_187122

Thank you for sharing. I am very glad that it worked out so well for you both.

WIGO23

https://alzconnected.org/discussion/comment/187113#Comment_187113

Thank you for your thoughts: Care options are certainly one consideration.

Jeanne C.

We were in the middle of a move when my husband's dementia became apparent to me. Looonnnggg story, but he ended up in the hospital literally the day before we moved. I beat myself up a lot, thinking the move had triggered the dementia (which is obviously not the case). But here's what I learned:

Yes, the new locale and stress of moving was hard on him.

It really didn't matter as far as help goes - my family is pretty spread out. And I'm pleasantly surprised by how often my sister comes to help out.

The benefits of this move, such as better cost of living and a good care system (from the state, Easter Seals, and the Swank Memory Center), far outweigh the detriments.

In the end I'm in a house I love with a good support network. I recommend living where you want to be and make the rest work for you as much as you can. Good luck with your decision.

LJCHR

We moved to an independent living facility when my DH was diagnosed. It was same city just more security and friends in the facility. I wanted to move to find myself security if I outlive my DH. I am 74 and he is 81, so odds are I will. He agreed with the decision and he loves the place as much as I do. There are over 100 apartments here, underground parking garage and many more amenities. We are in same city as our children.

I agree that you need to consider where you will feel more secure if you outlive your DH but the medical facilities is a big part of getting older.

However, being close to children offers so much love and support. I would suggest that the sooner the better for DH adjustment to new home.

Best of luck to you in your decision.

WIGO23

https://alzconnected.org/discussion/comment/187127#Comment_187127

Thanks ever so much. I expect the move might be harder on us both later as he experiences more loss, should we decide to move. My heart often says, “stay home, don’t move” but my head says, “move near family to share the care and he can see our daughter more before he may not know who she is”.

WIGO23

https://alzconnected.org/discussion/comment/187129#Comment_187129

Thank you! Friends who have offered any advice have said, “if you are going to move, early on is an easier adjustment for your LO than later”. But then they have not actually been caregivers—just know somebody who knows somebody….

I admit I am worried about my own adjustment too.

[Deleted User]

The user and all related content has been deleted.

Joe C.

We moved when DW was in early very early stages of this journey, actually when I was just becoming aware there was something going on. Our move was within the same geographic area and was just a downsizing move. That being said there where a lot of little challenges that I never anticipated. Things like using a new stove, microwave, dishwasher or the shower were really difficult for DW.

Being near family that can offer support is a huge benefit on this journey so that would greatly outweigh the small issues of adjusting to a new environment. Just be aware that even small thing will be a big change for your husband.

harshedbuzz

I moved my parents when dad was finally diagnosed with dementia.

Below, in no particular order, the good, the bad and the ugly.

Before even considering, all parties need to define "help". Is help mowing the lawn and dropping off a lasagna or is it regular dad-duty with diaper changes as needed? Or somewhere in the middle? A couple with two demanding careers may not have the time to give you much in the way of meaningful help. I moved my parents in the fall of 2016, dad died in 2018, I had a short break right after that but mom's needs have escalated as she hit her 80s and I am back to supporting her "independence" just about full time.

Who has your back? At 72, you are old enough to have a sudden medical crisis that would require someone to advocate for your care in a medical setting and keep your husband calm and safe without his preferred person. The incident that finally convinced my mom to get dad diagnosed and agree to move back to the area where I live was an illness. Mom developed an autoimmune liver failure while they were at their place in FL. She was sleepy, confused and the color of a school bus. When I called to check in, dad would tell me she was napping, or out with friends at the pool or divorcing him. He couldn't comprehend how sick she was and became angry she wouldn't cook for him, so he frog-marched her through Publix where a neighbor who was a retired RN realized the trouble she was in and got her to the ER. I got a call from the hospital as an emergency contact only because a colleague from the PCP office recognized her and had his staff track me down. She nearly died. I spent 10 days caring for them and then had a niece come down to work remotely for another week.

If you don't have the legal documents to act on DH's behalf, now is the time to do that. You'll want to name your daughter as your POA and to make health decisions for you rather than your DH. He doesn't have to know that.

I also believe in putting your needs first. Where do you want to be when this is over? My parents' friends in both FL and MD did drop off although mom did maintain a few girl-friendships. My mom was in her late 80s when she moved but she was too busy to really socialize initially. Around the time she was finding her feet after dad's death COVID hit and everything shut down. Not long after, she stopped driving because of vision issues which make it hard to take advantage of volunteer opportunities or hobbies. She's 85 now and basically has been unable to find a social group. She lives in a 55+ community and most people are closer to you age or a bit younger. The other residents kind of ignore her; when we both go to the pool they chat me up like I'm a new so I think it's an age-thing. She's very lonely and I can't fix that. She'd probably be lonely anyway. Her FL friends have either died or moved back to live near their kids and the few friends she knew from here or where she grew up are all either dead or so disabled themselves getting them together is difficult. When she was younger, she could have joined a church, the exercise groups at the clubhouse or the different activities but the walk is a bit far now and she doesn't want to pay an Uber.

I moved my parents from a medical desert and very uneven care to a metro area with world class care. For my dad, great medical care was unimportant once we got a comprehensive evaluation the memory center had nothing to offer. It was great to have access to a geri-psych for him. Mom is medically complex, so the ability to put together a top-notch medical team has been a benefit to her.

If you don't have unlimited assets, I would compare the Medicaid guidelines in both places. The state to which I moved my dad does not allow Medicaid funding to be used for Memory Care. This means if we could not care for dad at home at some point, he would have to qualified for a skill nursing level of care to be placed. I think there are different limits for housing value for the community spouse as well. I would advise talking to a CELA if this applies to you.

Cost of living and availability of care options might be critical for you. It costs money to move even if the housing costs are similar in both places. Taxes in retirement might be different as well as costs associated with owning a car. Costs for home health aides and MCFs can vary a great deal and are generally tied to cost-of-living in the area. Five years ago, dad's MCF in suburban Philadelphia was $7200/month and a HHA from an agency was $32/hr. There's another member here whose husband went into a MCF owned by the same parent company in a more rural part of the state and was paying about $2000 less each month. At the same time, my aunt outside of Boston was paying about $10K monthly for MC.

If you do make the move, some unsolicited advice from someone who managed the sale of both my parents home, moved them into an apartment and then into a home when they were unhappy in a 6-month time period-

It's best not to engage the PWD in any conversation about moving. Full stop. PWD typically don't have the executive function or reasoning skills to participate by the time most caregiver decide to move so it's best to do most everything behind their backs. This is especially true if you will be downsizing or using this as an opportunity to jettison things related to a hobby like cars or woodworking that are now in the rearview mirror.

You don't need to even tell the PWD that the new living situation is permanent. Or that you sold their home. I told dad that he was in the apartment as a short-stay while he had some doctors appointments scheduled. Mom told him she sold the house in MD, against my advice. This led to agitation and a fixation on me having stolen money from him which I didn't need. He was so upset and aggressive around this he nearly ended up in a geri-psych hospital. We were able to get him a local geri-psych and on an antipsychotic medication which allowed him to remain home. When I sold the house in FL, I told him it was rented for the season and making him money which made him a lot happier. Because we downsized to a 1500 sqft house many things had to go, I stored them for a time between moves and when he'd be agitated about his stuff, I could show him a picture of the storage unit.

It's best to move the PWD into the new home in turnkey condition if you can. Seeing stuff packed, unpacked and such can be really distressing. Dad was in rehab after a hospitalization which meant we were able to scramble and get the apartment set up with things from the MD house and move him there right from the SNF. When I moved them to the 55+ community, they stayed in a hotel for the weekend and my son, niece and I worked with the movers to get the house ready to live in while dad emptied the minibar. It was a small price to pay to keep him happy and calm.

I broke my own rule on showing him the house. They both hated apartment living, so mom and I found a house after the one in MD sold. Once she had an agreement of sale in hand, she and my dad's brother (dad really valued uncle's opinion) took him to tour the new place letting him think he picked it which made him happy. Both the Realtor and mom's CELA suggested putting the house in mom's name only; this is something you'll want to discuss with the CELA.

TL;DR. I would say the move was the right decision for my parents even with the downsides. My mother would agree even though she still fanaticizes about running away to FL.

HB

JDancer

Welcome to the forum. I see you are getting a lot of great advice.

You mentioned your daughter lives in a college town, as do I. Depending on the size of the college, there may be advantages you haven't considered. My town has a myriad of resources and activities. The local health care system uses student interns and volunteers to staff programs. Students are available to hire for part time help. I have plenty of free activities to chose from when I can get away- music, art exhibitions. sports. Public transportation is better than most towns our size. College towns tend to be a wonderful place to retire. On the other hand, housing costs are above average.

Good luck making your decision.

Ed1937

WIG, welcome to the forum, but I wish you didn't need it. But as you can see, it's a great place if you do need it.

I don't think there is much to say that hasn't been said already. While it might be nice to have the absolute best medical facilities a block away from home, I wouldn't make the move based solely on that. Most people will likely do pretty well with having adequate facilities fairly close by. On the other hand, if you have a very difficult PWD, it would be nice to have geriatric psychiatrists available.

Some people have moved across country to be close to family for the help they would provide. Sometimes this works out pretty well, while others become disappointed because the help they expected just doesn't happen.

There are so many variables to consider, it is really hard to know what will work out best. You received excellent input from other members, and I hope whatever decision you make works well.

WIGO23

Thank you, everyone for sharing your thoughts and stories. It is most helpful to read them.