My Father-in-Law currently resides in a wonderful, small (45 residents) assisted living/memory care facility - he's been there for 6 years. His dementia has progressed to the point that conversation is difficult ... questions are met with 1 or 2 word answers, if that. He appears to be very comfortable with his current situation, and the caregivers there love him because he is very cooperative and not at all disruptive. He has multiple health issues, and has had to go to the hospital about every 6 weeks or so for one thing or another. My husband and I live very close by, and when we get the call that Pop is headed to the hospital my husband meets him there.
My concern is that my husband and I are moving from NY to FL in the next couple of months. We have found a lovely facility for Pop about 10 minutes from our new home, but we are concerned that moving him at this point in his illness would be incredibly difficult and perhaps even frightening for him. The caregivers at his current facility have many residents whose family are out of state, but my biggest concern with Pop is that when he goes to the hospital no one is available to accompany him and act as his advocate. (We have no other family members left in the area) Pop is not responsive at all in unfamiliar situations, and is not capable of understanding questions or information from medical staff.
I'd like to know what experience others have had when moving a parent with advanced dementia, and if anyone has any suggestions. Thanks!
Good Luck and welcome to Florida
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?
We were unable to see him at all for almost 3 months during the height of COVID here in NY, and the facility just recently began to allow "window visits". Pop's health has declined faster during this period, as you would expect. We are now able to visit him once a week, and some days he his alert and responsive (still just 1-2 word answers) while other days he is completely withdrawn.
The move south is for financial reasons, so unfortunately it can't be postponed.
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.
If we were to move Pop, we actually came up with a pretty good solution to travel down there ... the AutoTrain. My husband and FIL would drive from NY to VA (about 6 hours) and board the train. We would reserve a sleeper unit so my FIL could nap and have a private bathroom during the 16-17 hour train ride. In FL, the AutoTrain arrives just a couple towns over from our new home and the new facility Pop would move to, so it would be less than an hour's drive. Not cheap ... we figured it would be about $1,100 - $1,200, but by far the best solution for him and my husband ... all things considered.
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!
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.
Good luck with your Mom - I hope that home care can provide enough hours so that you are not jeopardizing your health as you provide care for Mom.
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.
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