I must make a decision very very soon. I am my husband's POA. Married 20 years, 20 year age difference as well. He is 85, I have been his caregiver for his dementia for the past three years. He probably had dementia two years before that. He is now level 5 out of 7. He wants to go into independent living in our hometown which is 4 hours away (we moved to the coast about 7 years ago). Since he was so very important in our hometown community, he wants to go back there to die. He was the mayor of the town, etc. He loved living on the coast until the dementia hit. His depression became worse. He wanted to go home where his friends are. I’ve been enjoying my work here and as my husband became worse, I got a caregiver to come in so that I could work and run errands. Now I am faced with a really hard decision: To move back to our hometown (lots of work) and live in an independent facility where a lot of his friends are (I would be the youngest there by 18 years). Anytime I left the facility to go back and forth to the coast, I would need to hire a sitter.
His neurologist has stated that he needs someone living with him and suggested assisted living. My husband will hate being away from me. We have only spent a week apart in 20 years. He is attached at the hip to me. I cannot live in assisted living with him. For one thing, it costs $7,500 a month. No reason for me to be in that environment and also pay for those services that are not needed. I am totally healthy, still run, teach yoga and aerobics. So I would have to get an apt and furnish it as well as furnish the assisted living room.
Theoretically, my husband can live in the AL but go over to the independent section and have dinner in the independent wing where his friends are.
My question is: Do I uproot my life and move back to our hometown for hubby to go to AL or put him in AL here. I know he would not get visitors here because he became very reclusive here and has no friends. He would get visitors in his hometown for the first several months.
I know I’m suffering from guilt because I know where he wants to go. I want him to be happy. I failed to mention that it will cost $30,000 more each year to take him back to his hometown because I have to furnish his place and my apt that I would need to find.
My life and financial concern are better here on the coast but I want my husband to be happy in his last years.
I must do something fast because he is getting worse
Let him FaceTime with his friends.
You need to do what's best for you, financially and emotionally. Don't get guilted into doing something that's going to cost you money you can ill afford and make you unhappy.
Many dementia patients want to go "home.". They want their old healthy lives back. If he goes back and is unhappy, how would THAT feel?
You moved away 7 years ago. Has he kept in touch? If not those people have gone on with their lives. Some have probably passed. Others that are his age probably have their own health problems. I doubt they will visit. My Mom's AL was in the same town that Mom had lived for 65 years. She had been active in her Church. She had friends she did things with. Not one person visited her from Church, not even her pastor. No friends came. Why? I think they did not know how to interact with someone with Dementia. And too close to home.
Is there an Adultcare where DH can go for some socializing? When he is gone, you will need that job and the friends you have made there. You also need to talk to an Elder Lawyer about splitting assets u have together. DHs split will be used for his care and then Medicaid applied for. You need to protect yourself and your future.
My mother moved from the AL building across the parking lot to the Memory Care building where she could dine with her old friends too. Her bff Ann came by ONCE. When she saw how mom had declined, she never came back during the nearly 3 years mom lived there.
Mom's girls offered to take her to the AL building to dine, but mom felt embarrassed. She'd become a sloppy eater due to a loss of her fine motor skills from dementia. She didn't want her friends to see her in that condition, so she stayed in MC for her meals.
Independent Living is a world away from Assisted Living which is a planet away from Memory Care Assisted Living, or the folks with advanced dementia who need that type of care. What underlines my point is the fact that you don't want to move to AL yourself, even though there are able bodied people living there.
Stay where you are. Dh is speeding down the path where he won't realize WHERE he's living soon enough, unfortunately. Its important you look out for YOURSELF here too, and your future finances.
Best of luck to you.
You yourself say that he is getting worse, and sadly it won't be long where he probably won't know who you are yet alone anyone else, so it won't matter where he is.
People with dementia do much better with routine and when that routine is disrupted,(like moving him)it will only make his dementia worse. And that is not fair to you or him.
So start checking out your options for his care where you're living now, and just keep telling those little "fiblets" as to why you can't move right now. And know that his depression has nothing to do with him not being back in his hometown, but has everything to do with the fact that he has dementia and on some level knows that his life will never be the same. I hope his doctor has him on some kind of an antidepressant
I wish you well as you take this journey with your husband. It will be by far the hardest thing you've ever done, but know that you're going to be ok when it's all said and done.
God bless you.
That is my humble opinion. But that doesn't really help you-- my opinion-- if you have not after all this time come to this conclusion on your own.
You are 65. WHYEVER would you move into ALF or even independent living? Why SHOULD you. You are not in need of that care. And it would be enormously early to put that sort of financial burden on your finances unless you are a multimillionaire way over the 10M level.
Here's the facts. Your hubby has dementia. He needs care quite soon. Together you made a decision to move, one that worked for you both until he changed.
His change is not anyone's fault and it cannot be fixed.
This move he thinks will make such a difference? That isn't the same town and he isn't the same mayor and no one there will care about him. There is no "happiness" waiting there for him. His magical thinking is making him want to believe something here can be fixed.
He wants time to go backward to when he is well. That isn't how any of this works.
You have ENOUGH of a burden on you as things stand. You have stood by him. When he needs placement you will visit and continue to stand by him. But you are not a Saint to throw yourself on his funeral pyre and sacrifice the rest of your life, in honesty some of the most carefree years when our parents have passed and our kids are raised.
I would ask, since you don't KNOW, that you seek COGNITIVE therapy with a GOOD psychologist who is recommended to you OR a good Social Worker in private practice for counseling (they are often good at life transitions.)
You are young (relatively of course as I am 81) and you are whole, and you have a right to the next two decades of life, a life you enjoy, where you enjoy it.
That is just my opinion. Peoples' opinions honestly just add to your grief and confusion. There is no Happy Ending here for hubby. His magical thinking is in full force that there may be one. Seek the advice of a therapist. Recognize you cannot, no matter your sacrifice, make this OK for this man you care for.
My best wishes go out to you.
The most important thing for him is to have you close by. He will be happy wherever you are. He's going to fade away from the rest of his world; his friends in his hometown won't be all that faithful. He'll make friends on his level in any AL, especially if you're there to grease the wheels. You'll be an important part of his adjustment in either place. You'll make friends with other spouses in his AL, and even though you don't live there, you can meet in the puzzles room, attend the AL holiday celebrations together and so on. In no way does this need to be in his home town.
"No man ever steps in the same river twice, for it's not the same river and he's not the same man."
Heraclitus
Short term get caregivers coming to your house to assist him. You can start 4 hours a day 8-noon
Is he even competent to be in assisted living alone? In my town many hire caregivers to be with their loved one in assisted living.
It will be a lot cheaper to stay where you are at than to pay for IL. I see no upside for you to move and pay for the two of you to be in IL. You will still need additional supports for your husband. This seems like a lateral move with no advantages.
I toured a lot of living options for Mom (dementia) and Dad. The assisted living places would take Mom with dementia but Dad (no dementia) would have to be with her. After Dad passed we considered Mom for assisted living with agency caregivers.
Mom ended up staying in her home with caregivers and she is still in her home with caregivers.
For now it would be cheaper to add caregivers. 8-noon or 8-2 would get husband dressed and get husband two meals.
Tell husband you need to keep working your job to pay the bills.
As his memories dissolve, you are not giving yourself any opportunities to be yourself...just a caregiver with no life of your own. Have you also thought about adult daycare so you can get a break?
Let me say there won't be any wrong decision, just the best you can do with what you know, what you have & what is probable.
What you know:
Your DH has dementia (stage 5-7).
He needs fulltime supervision now.
What you have.
Your independance.
An established life at the coast.
What is probable:
His dementia will progress.
Supervision will become assistance, which will eventually become full care.
Friends will drop off as communication becomes harder.
A. Home Town, independant living. Adding home services.
B. Home Town, assisted living for DH. Independant unit for you.
C. Coast, no change. Add more & more home help until
D. Coast, assisted living/memory care for DH.
I see options A & C as high burden to you. To provide all the supervision & run a team of aides. A also carries the large burden to move & loss of your current lifestyle. YOUR lifestlye & especially a support group is going to be very important for you.
B Could work IF you think the move to Home Town would suit BOTH of you.
1. Is your DH wanting to return to a *memory*? If so, being there will not help.
2. Do you want to live in Home Town? Be honest.
D. This may reduce your care burden, keep your life & supports. It may feel like ignoring your husband's request - would need to find a way through that.
Can I suggest another option?
Call it E for Experimental.
Consider taking a trip back to Home Town.
Get approval/paperwork for your husband to get Respite Care. Book him into Assisted Living for 2 weeks or a month. Stay local, visit him everyday.
Nothing like boots on the ground tom help you decide.
Sadly, with dementia your spouse will get worse. And usually friends he has will really dwindle. Hard to spend time with someone who you don’t remember and talk. So don’t worry about him being with friends right now. He will forgot his home town ad all his popularity at some point. Perhaps make a donation to the town of a park bench or fountain with a plaque with you husbands name. Show him pictures. His friends can visit him if they wish.
In his last years, your husband will not remember much if anything. He won’t be able to express opinions either. Stay where you know is best. Keep your husband with you and continue to love and care for him, but get the idea of moving to make him happy out of your head. You don’t need unnecessary stress and moving would be that. Honor your husband some other way than moving.
💝
Is anything like that possible for you two? Toe-in-the-water is a lot less disruptive than a full-scale move, and it might make things very clear to both of you.
Your husband would not be happy in his old town either, because HE’S not the same . He’s looking for things to be the way they were years ago . It won’t be and he won’t be happy .
I knew I couldn't do it and that my energy would be better spent being with him. He stopped talking about our plan soon after I knew it wasn't going to happen - the dementia did that. Now in stage 6 heading into 7, he speaks some, doesn't walk much except from bed to recliner and I am now feeding him and changing his underwear. I do not want to put him in a MC or SNF. I know it is a lot of work for me this way. So, we have stayed in our home of over 20 years, and he is as happy as he can be with whatever he remembers. Even the kids don't come by as much as they used to - it's hard for them to see their dad this way. My guess is that your DH's friends will be the same especially at their age.
I have at least familiar stores, my church and people I enjoy nearby and not having those changes on top of everything else is helpful to me.
Take your comfort from where you can. Your job and own life are important. I wish for you strength to be with him and make decisions that are right for both of you. It's not an easy road.
This is my story...such a suggestion. After 10+ years of caring for mother (a fabulous mother and wonderful father as well), I moved my mother to an Independent Living and I reside with her, as the "add-on" person.
This is not a usual scenario but we had the luxury apartment, with gym, pool and tennis, etc. Then I moved her within the complex to the same floor.
If you can find a place that is 55+ with Independent Living, Assisted Living, Short-Term Rehab, and Memory Care, this is would be a 5-tier place where the changes would be made as your husband's health declines.
You could both start out in the same apartment and have one-stop shopping. Meals, laundry, physical therapy, hair salon, all under one roof. You can hire a 3rd party to do Custodial Care and some Assistance.
This doesn't work for everyone but I am exhausted and I needed a rest too. I work from home and my situation is working out fine. It took some work and a major move from one end of the country to the next but I happy I did this. It was a good choice for us both health-wise, weather-wise and financially.
It was costly and a lot of ducks to line up but I couldn't keep doing what I was doing. They have Church services here, Happy Hour, linens on the table. It's what I had always hoped for my mother.
For me to move mother to another State in a nice apartment was not the answer. I moved to be closer to family. I immediately joined a Church and eat all meals with others. These places are needed.
All the women in my family were home growing up. But this is not the case today and you have to seek out what you need. I had to move my mother while she could still be moved with services to assist in her level of care.
I can still have a life, work remotely, have my hair done and not have to worry if she falls while I'm at the drugstore drive-thru. When she passes, I will deal with it and make another change as needed. In the mean time, I try to enjoy each day.
I know this is hard because it's really up to you to make decisions for the both of you.