Help with downsizing

Nancy Anne

DH was diagnosed 3 years ago with mild dementia. Is slowing forgetting increasingly and very confused. Doesn't know his way when we drive in a familiar location. We live in a large home and although I think it's time to downsize, he is unable to make that decision. He says it will be too traumatic. He is very comfortable in the current home. Our daughter lives 50 miles away and wants us to move into an apartment closer to them. How do I convince him this is for the best.

jfkoc

It seems that almost all of the decisions we are faced with are double edged.

The pro of moving could be that your daughter would be of great help to you. Unfortunately that is not a given. She has her life to live and may not be of much help push comes to shove. Please look at that realistically.

The other thing to consider is that a move from the familiar will likely be very disruptive to your husband. You have already noticed confusion when he is in a familiar place. I hope when you say he does not know his way that he is a passenger and not driving. He is simply not able to drive anymore and that is based on reasons other than his getting lost.

A third thing to consider is his medical care. Will you need to find new Drs?

What is your plan B for placement. Yes, you may really need to do that. Compare the facilities where you are with where you may move to.

A n additional consideration is will you lose your support system....friends, activities. How much effort are you willing to put forth into creating a "new" life?

Look carefully. Weigh out the pros and cons but I guess the bottom line is that when you line up the pros and cons and make a decision it is still a crap shoot.

We can but hope for the best.

Please do keep us updated and in the loop. We are here to offer ideas and to lend a shoulder to lean on.

-Judith

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Ed1937

Judith said just about everything I would have said. Decision making is now on your shoulders. It's fine to let him think he is involved, but final decisions have to be yours. Just be aware that a move could be cause for him to bring on new symptoms that may disappear with time. I'm glad she mentioned that you might not have as much support as you think. Many people who move to be near family for support find out that it just isn't as beneficial as hoped.

If you decide to move by your daughter, is she in the same state? If not, some legal papers might need to be made again if you move. And while speaking of legal papers, have you seen a CELA (certified elder law attorney)? If not, this is something you really need to do before long. Putting this off could wind up costing you thousands of dollars.

Elshack

Of course you know your DH's condition will only worsen over time. I echo others' advice and make sure you see an elder care attorney, have wills drawn up, power of attorney for financial and health. Even if you do decide to live closer to your daughter be sure it is a place that has independent living along with assisted living and memory care. We moved to such a place 4 and 1/2 yrs ago and my DH went from our apartment to memory care 10 mo ago.

harshedbuzz

TL;DR Make a plan to be where you want to be as a widow. Do what is best for you. This is your decision and your needs are the important ones here-- not your daughter or your DH.

The answer to this is going to hinge on a lot of factors. I'll share my story as a daughter who coerced her parents to move back to the area in which they raised me. My parents were 79 and 83 (dad, the PWD) and I was 60 and retired at the time.

My first question is why the daughter wants you to move nearer her. My primary reasons for moving my parents was 1) mom's safety and 2) my convenience. Getting my parents access to better medical care was a bonus; they had almost no continuity or coordination of care. My parents split the year between a golf community near the beach (3 1/2 hour drive) and a 55+ community in Florida (a 2 1/2 hour flight). My mom almost died with dad as her advocate. She went into autoimmune liver failure and was the color of a school bus and when I called he told me she was either napping or was mean and divorcing him. I knew she wasn't well from the few calls I'd had with her but was still alarmed when the hospital called me as an emergency contact after realizing dad wasn't firing on all cylinders. While my mom had a busy social life and friends in Florida, there wasn't anyone so close that they would have checked in after she'd missed a couple days of Aqua-size classes.

If you have real friends and/or family who look after you as your safety net, then you might not want to move. Since she was busy as a caregiver the first 18 months there, she never really connected with her neighbors. The neighborhood was built 23 years ago and the original owners are mostly gone and have been replaced by folks in their late 60s/early 70s to whom she is kind of invisible. But at the same time, her former social network in Florida has dispersed in the last five years since dad died; a few friends passed and others moved to be nearer their adult children.

You'd want to have a frank discussion about what "help" means to each of you. Is she willing and able to roll up her sleeves and stay with dad so you can get to appointments, see friends or just be alone in your own home on a regular basis? What are her thoughts on toileting, incontinence care and bathing as his condition progresses? Or does helping mean she'll drop off groceries each week or a few prepared meals?

When I moved my parents, I agreed to help. I did all of the logistics of the moves and lot of the physical labor as well. I got my dad diagnosed and cobbled together a medical team for each of them and attempted to obtain their medical records from 3 states. Mom sees 16 medical specialists currently for a laundry list of conditions. I oversaw the repair, staging, listing and sale of 2 homes after moving mom into an apartment near me while dad was in rehab. I moved the contents of one house, removed personal items from the other and had vehicles shipped. Neither of my parents were happy in the apartment. It was a very nice place, but 1000 sqft of mostly open concept space wasn't great for them to get away from each other.

As soon as we sold the golf course house (4 months after moving into the apartment), I found a cute home in a 55+ community about 20 minutes from me will all of the amenities they enjoyed in Florida and a HOA that includes all exterior maintenance. I picked the place because I thought it would be a nice compromise for my mom after dad died. The neighborhood is very walkable; she has vision issues that prevent her driving so being 1/4 mile from the grocery store, bank, drug store, restaurants and Talbots is a good thing. After she signed the papers, we took dad to tour and let him believe he selected it. He was pretty disoriented to place by that point and thought it was Florida half the time. For the actual move, we put them up in a local hotel for the weekend and worked our butts off to move everything, unpack and set up kitchen, baths and bedrooms. It was ready to live in when mom brought him to the house.

I would not include a PWD in any aspect of moving- not exploring the idea, not deciding on where, not deciding what to keep and what to jettison-- nothing. Sadly, they no longer have the executive function or reasoning skills to be a part of the process. Asking them to do what they no longer can will only serve to raise anxiety and make the task harder for you. Move them into the new place and then tidy up the loose ends behind their back.

A lot of people say that any move will hasten the progression of dementia. TBH, I did not really notice this in my dad, but he'd been changing venue every six months for years.

Good luck with whatever decision you make.

HB

Denise1847

Hi Nancy Anne,

I believe everyone has covered the factors in your decision. I would only add this consideration, based on my own experience. I live on the water overlooking a creek and view of woods with lots of waterfowl and critters all around us. It is wonderful place. Yet, awhile back, I considered moving because I was afraid I wouldn't be able to handle what is coming with my husband and maintenance on the house. I luckily came to the realization that I was trying to run away from my fears of taking care of things on my own. The reality is that whether I moved or stayed, I would be taking care of things on my own. Our minds sometimes can confuse issues and, if we aren't careful, we will initiate the wrong solution (at least my mind does this). As a previous post said " where do you want to live after you become a widow?" I know my family expresses their concern and they appear once in awhile, I am basically in this alone. I am trying to become more equipped to handle the progression and take care of the home I love. Sometimes, we retreat from a battle to gain strength, but then you come back and keep fighting for your life. Learn all you can from these posts. They are my friends and have given me the insight to prepare for the journey ahead. I no longer feel like a victim but a warrior as I have done all I can to be prepared for the battle and I plan to succeed with God's guidance. Please consider your desires and motives in your decisions. You have just as much right to be happy as your DH. Good luck and God bless you in your journey.

Nancy Anne

Thank you all for your caring and insightful thoughts. Yes, it is a journey and prayerfully I will make the right decision on whether to stay or go. Looking at it from the perspective of where I will be happy when I am alone has given me even more to think about.

mrahope

I can definitely relate to what you are saying. I have just made the decision to move about 200 miles to be closer to my son and his family. They have been exceptional in showing up. DS has attended all neuro appointments via FaceTime. He's already researched healthcare for us in the new location. But still I worry.

The advice to think of where/how you would like to live as a widowed person is good. I think I would feel happiest being near my grandchild, even though my current city is very rich culturally. The new community is a university town, so I am hoping to enjoy that. Truthfully, as it is, with DH so compromised, we rarely can take advantage of what our current city has to offer anyway.

It's a tough call. I wonder if I will be able to make friends in the new place, get in-home care for DH or if he will end up in MC because of the big changes. I feel like, for myself, I have to try.

SDianeL

My husband was diagnosed 2 years ago. We traveled full time in an RV. We parked it while he was being diagnosed. Once the diagnosis came, the Neuro Psychologist that did the 3 hour test said he needed to stop driving. I made the decision to rent a one bedroom apartment on my own after fully researching. Needed ground level, handicapped parking near the door, walk in shower. Found a place within a mile of his doctors. We moved into the apartment one year ago. He wasn't happy but has accepted it. He did have a few issues of where things were but we solved all those by putting his things on the counters and not putting them away. He did sign the first lease. My sister also has dementia and my brother-in-law advised me to immediately get a DPOA drawn up by an attorney and I'm so glad I did. In one year, he can no longer sign his name. I sold the RV and with the DPOA could sign for him. I just signed the lease renewal using the DPOA. Our options were buy a house, rent an apartment or move in with my daughter. I didn't want to have to take care of a big house and yard and moving in with my daughter wasn't an option. She works from home and our presence would be disruptive to her. I'm very happy with our apartment. One bedroom, manageable, and if something breaks I can just put in a maintenance request. So do what's right for you. I explained the options to my DH and he seemed to understand it was about my ability to easily care for him. You will need support. Read the book "The 36 Hour Day" It helped me a lot. I now have respite care come one afternoon each week to have some time to myself. I used to use a Pros & Cons list when I had a difficult decision to make. That might work for you. List all the pros of moving on one side of the page and then list all the cons on the other side. I our case, the pros outweighed the cons. Please keep us posted.

Nancy Anne

Thank you for your insight. I have been feeling so sad the last few days. It was the long weekend over the 4th of July and we did absolutely nothing. We live in Maryland, and it was rainy, hot, and steamy. We normally go to our lake house in the Finger Lakes in upstate NY. Our kids and grandkids were all there so it was best to stay home away from the turmoil. I missed it so much!!! Anyway, the pitty party is over. I just had to tell someone.

I plan to do a pros and cons list about moving. I have a large social group in our community and will miss that if I decide to move closer to my daughter. Thankfully, I can leave my DH alone for some hours now, but I know eventually I won't be able to. He is happy to stay at home so I can get out. I try to choose only social activities that mean the most to me to stay connected with friends. I know eventually I will not be able to leave him alone and will have to hire someone to help. It's just so sad that we can't do more together.

I am not sure if I am ready to go to an apartment since we have a large home. The move will be so difficult since he does not want to go.

One day at a time and with prayer and help from my family the right decision will be made.

Thanks for listening.

clndaniels

One day at a time is the way to go, but you also have to think of what is coming. We have gone through the diagnosis, not driving, being able to stay alone for a few hours, to having caregivers in the home for me to get sel time to a MCF to now approaching seeking a SNF. It is a long journey we have been having for over 6 years. We did have all the POAs in place which has been a blessing, but having to make all the decisions is exhausting both physically and emotionally. Hang in there! You can do it!

Denise1847

Dear Nancy,

I am so very sorry that you are having to be here. It sounds like to are pretty strong and already understand the mental and emotional challenges of this disease. Good for you to embrace the attitude of pity party then to push on and move forward. That will get you through this. Nancy, I first paniced when we got the diagnosis and thought we had to move from a place I truly love. However, I realized that I had to think long-term to when I would be solo - when did I want to be? Could I manage the care in my home? It sounds like to love where you are with a social circle etc. Like others have said, make a list of pros and cons but please put on the list what you would want for yourself in the future.