Moving a person with advanced dementia to a new facility, any suggestions?

I had a similar situation with my mother. I didnt realize at the time how traumatic is was for her to be in a different setting. She regressed and 'forgot' how to do many things (showering, dressing, etc.). I wish I had planned to spend 5 days with her during and after the move. She needed lots of love and hugging while relearning some basics.

I have lived in Florida for 33 years and I despise it. The medical care is horrible and the facilities are in a major crisis. My father is 83 and he has has to be in skilled nursing rehab several times. They almost killed him twice. It was only my intervention that prevented the worst from happening.

We are working towards moving back to NYC to get great medical care and better facilities, if that ever became necessary. I would never even consider leaving him here, as he would almost surely die. Florida is not the place to be when you are elderly and sick.

I moved my dad who had fairly advanced dementia from WV to Michigan near me last fall. He had broken a hip, had surgery and gone through rehab.

I had concerns about moving him, being confused, readjustment and so on, not to mention a 12 hour drive. A medical transport was crazy money so my wife and I loaded up the car with all the elder stuff and drove him to Michigan to a great nursing home 5 miles from us. All things considered, he did pretty well on the trip. About killed us though.

It was an adjustment for him but I went over every day and helped ease him into his new place. He still thinks he’s in WV but that’s fine.

Except for window visits I haven’t seen him since March. He’s on hospice now, sleeping most of the day but not in any distress.

For me it worked out well but there are valid arguments to not move folks with dementia. Good luck with whatever you decide.

Imho, while I do believe that you've said you must move from NY to FL for financial reasons, it is going to be a big adjustment for your FIL, should you decide that he also moves to a facility in FL. Prayers and good luck sent to you.

So, it's going to be roughest of all on your DH, no?

If he were the sort of man who thought of elder care as something to be delegated to the women and children of the family I wouldn't make this point; but he's a son who's taken a sustained, active role in giving his father real quality of life. Covid has been a nightmare for people like him - I've just returned from a home where the 90+ year old mother has been in hospital for five weeks, and her husband and daughter were shredded by the experience - and now he's faced with the "sensible" option's being to leave his father in place and, essentially, to walk away.

I think, if I were you, I would leave the decision to DH. Gather all the information, all the pros and cons, together for him and then support his choice either way.

It may seem objectively as though there's little point in moving a largely unresponsive person with dementia purely in order to enrich his quality of life. But this may be something your husband could never forgive himself for leaving unfinished.

It's going to be stressful, or not, regardless of what decision you make. If you move and can't be close by to visit and check on things, you will have stress...if you take him and move him...that could be stressful if he has a hard time adapting...BUT you will be nearby.
Let me share a little story: A year + ago my father decided he wanted a stainless steel refrigerator. (I know what does this have to do with anything...I'll get there in a sec). Then he thought we should get a new cook top. Research on that led to discovering that the best rated built in oven was on sale...got a deal on that. Then of course the range hood didn't match...so we accumulated it all and it was sitting in our living room in boxes awaiting my arranging for the install which would be done all at the same time. Then COVID happened.
Last year we had two walls painted and mom with dementia was a nightmare. I was literally bodyblocking her access to the painter. She was miserable, obnoxious and sneaky. I had an aide hired for the occasion who was of zero help beyond a snarky "it's too bad you won't consider medication for her." So I really fretted about how we'd get all this installation done and keep her out of the way.
Well...the day came. I fretted and plotted plans to get her out or distracted for weeks. WEEKS. I burned SO much time, energy and brain power on it all. And you know what happened? She sat in the family room on the sofa reading or dozing for the entire time. Never came near the guys. Never interfered. Barely noticed them I think. And they were super efficient. Done in about 1.5 hours.
I worried for nothing. You may be too. Sometimes things actually do work out:-) Sending hugs and holding good thoughts.

My mother has advanced dementia, and wasn't handling hospital visits well (she couldn't answer questions, didn't understand instructions, ripped off the oxygen, bit the nurse). We decided to change her medical directives to "no hospitalization." The hospital visits were getting more frequent, and now she is doing much better and has been with "no hospitalization" for nearly a year. Regarding moving your FIL, it's best to be able to visit frequently (not always possible with COVID) and have parents close to you so that you can oversee their care. You may want to ask the new facility if you will be able to visit him. FL now has a high rate of virus spread. If you'll not be able to visit him, it might be better to wait before you move him. You may have to depend on others when he goes to the hospital after you move. It might not be possible to go to him in a NY hospital after you move (there is a quarantine requirement for people coming from states with a high COVID rate of infection).

Moved mom with probably mid-stage dementia from Washington State to Oregon just over a month ago, as we moved and her memory care home was not solid enough for me to feel like leaving her was a good idea. We had moved her from Indiana to Washington State so she was closer to us as she wasn't getting what she needed in Assisted Living.

From what I understand about transfer trauma, it is more pronounced in earlier stages. I guess it's all individual. It did take mom a bit of time to adjust, but she is also in a much better community, and they work hard and do a lot of individual activities with the residents (2 separate little neighborhoods, 40 residents total).

Personally, I saw the hit mom took far more when COVID meant I was unable to visit, as I did a lot with her to keep her physically and mentally engaged. So, that is the question you have to ask yourself, how much will your dad suffer if you are not there? I had a geriatric care manager in Indiana for her, and that did not help much in regards to when she got hospitalized.
I think only you know how your dad will respond if you move him. There will be an adjustment period, but if you stay involved it helps.... hard to do with COVID.

I am very interested in the responses you are receiving as I am in a similar situation. My 95 year old mother has been in her AL facility for 8 years. My husband and I are going to spend half the year in Florida (we’re from NY) for now with plans to move permanently in the next year. My plan for now is to fly back to NY every month to spend a few days with my mother. I will talk to her several times a week while I am in Florida. If there is an emergency, I will fly home. When we do relocate permanently, I’ll have to make the same decision you are now faced with, but I am leaning toward moving her to Florida. While I’m there I’ll look for into facilities.

A very difficult situation for everyone. As a geriatric RN Care Manager in Florida I would suggest you consider hiring a person in Ny as his advocate. A watchful eye often is the difference in good vs mediocre or poor care. If you consider a move to FL for your loved one call me and I will make some recommendations.

Good Luck and welcome to Florida

Over the last six years, how frequently have you and your husband visited your FIL? I'm only asking this to get a clearer picture of FIL's routine and surroundings, I'm not having a dig at you.

It's a question of how important the two of you are in the structure of his daily life, you see. If you're key features, you'll have to take him, and then in FL you will both have your work cut out settling him in, and you will have to do the job properly - it won't be quick or easy. If not, then you'll have to cope with the worry of leaving him behind because it will not be in his best interests to move him; but if this is any consolation, it'll be more upsetting for you than for him.

I hardly like to ask, but you do have to move, do you? Presumably this is a retirement plan or something like that?

Hi. I just moved my mother to assisted living one week ago. Based on your description of your Dad’s functioning, my mother is in a very similar place. New things are always tough for them, but I know Mama’s adjustment has been made better by the fact that I’ve been here with her every day. So, for what it’s worth, I think that having him closer to you is best, especially if there’s no family to support him once you move away. Certainly you know your circumstances best, and I wish you luck in making the best decision for Dad and your family.

Do not leave your dad behind.
I just moved my 98 year mom from Florida to S. C
It was and is a challenge as I have her living with me and my husband. Its totally exhausting as in FL I had home care 7 days a week. Here after 6 weeks I've finally qualified her to home care. Don't know how many hours yet.

I don't know what part of Florida you are going to but there are many ALF/ and independent homes unless you have him live with you.
My mom is totally needed with alzheimers.

I promise you leaving him behind will make you misirable.

Do not leave your dad behind.
I just moved my 98 year mom from Florida to S. C
It was and is a challenge as I have her living with me and my husband. Its totally exhausting as in FL I had home care 7 days a week. Here after 6 weeks I've finally qualified her to home care. Don't know how many hours yet.

I don't know what part of Florida you are going to but there are many ALF/ and independent homes unless you have him live with you.
My mom is totally needed with alzheimers.

I promise you leaving him behind will make you misirable.

I would try to leave him where he is for now. Getting him to Florida now would be difficult at best. The current virus counts in Florida will likely be quite high still in 2 months. You can’t go to hospitals now anyway. I would hire a geriatric case managers to help if he does have to go to hospital. If and when visits are allowed in his facility, she can see him once a week or every other week and report back. If you need to, you can drive to NY monthly or however often to see him.

Dear tayngstrom,

I certainly can understand your angst in this situation especially being that the move is out of state. Although I have not moved my mom out of state, we have moved her with similar concerns.

My mom never wanted to move out of her home but after going back and forth from our house to hers for ten years after my dad died in 2004, I couldn't do it any longer. At that point, she was 90 and had mild to moderate Alzheimer's. We moved her into an AL facility because she was still mobile and able to dress herself. Over the course of a couple years, I began to constantly address issues at the facility. We thought of moving her then but decided not to disrupt her as she liked her apartment and I admit I couldn't help but think about all we did and had to do just to get her there which caused me to have a major health setback.

Fast forward to this year, my mom nearly died in their care from severe dehydration, COVID, bi-lateral pneumonia and a severe UTI. I was so upset and angry that once she left the hospital and ended up in a rehab facility because she could no longer walk or dress herself that my husband and I decided we would try to find a new facility as there was no way in good conscience I could take her back there. Well, that feat wasn't so easy during the pandemic. At one point, all we could find as an option was a group home 35 minutes away - her current facility was almost ten minutes away. I knew the group home would never work for her but we were under so much pressure from the rehab facility. They have weekly meetings to see how the patient is doing because they have to justify to Medicare them staying longer. Medicare has to know there is improvement. With my mom there wasn't as she was uncooperative. After each weekly meeting, the discharge manager at the rehab would call and ask if we were actively looking and talking with the placement agent she recommended - we were. No one was taking COVID patients. Finally, the agent did find us one who would be willing to take my mom IF she had recovered from the virus and we would have to have her tested again and give them a NEGATIVE test result. We were able to do that. My mom is 95 and is in the more advanced stages. It was then that I began to tell my mom (even though I knew she wouldn't remember) that we found a nice, new apartment for her with a window so we could do "window visits" as her apartment at the previous facility faced an inner courtyard where we couldn't see her. I would tell her this every time I talked with her to reassure her everything would be ok.

We walked her through every step as she kept getting agitated and would ask what is "going on" and "what am I doing here?" (i.e. being in rehab). Since my mom now qualified for hospice care due to not eating/drinking, losing 20 pounds and no longer being able to walk or dress herself, they arranged for a medical transport. We drove to the rehab that morning so she could see that we were in essence "with her" and followed them to the new facility where she was placed in MC. She has five siblings left but they are all out of state so she only has my husband and I and her siblings aren't involved anyway. The new facility is 20 minutes away.

So the best thing I can suggest since your FIL is unresponsive in unfamiliar situations, is to just calmly tell him the plan over and over and do so with a nonchalant attitude. They can still hear us (actually, hearing is the last sense to go right up until death) and can pick up on our mood/stress.

My mom did great and now we wished we had moved her a lot sooner but as always hindsight is 20/20. I wish you all the best as you start a new journey in Florida. Please let us know how it goes!

Great suggestions ... thank you very much!

IF you want to leave Pops where he is you can hire a Geriatric Care Manager that can be the "go-between" for you, the hospital, Pops and the facility. (this is not an inexpensive option)

IF you want to move him, this will be a big undertaking. Your options would be.
Medical transport. VERY expensive option.
I personally would rent an RV and drive. No motels to deal with, he can sleep as much as he wants. And if you are there with him during the drive he may be a bit more comfortable. And a doctor can prescribe a medication for anxiety if he needs it or if you think he may need it on the trip.
I would not try flying. While faster you have to think how long he would be in the airport, masked then confined to a seat on the plane.

When you come down to it no matter what decision you make at some point I am sure you will have second thoughts. Don't entertain them. You make the best decision at the time with the facts at hand,
I will tell you with 99% assurance (OK, maybe 95%) that he will decline if you move him and he will probably decline if you are no longer visiting if he is aware of your visits.

If he does not already have a Medical Alert bracelet you might want to get one and have very clearly stated on the bracelet that he has dementia and that he is not decisional.