We reside in husband's home town, Pittsburgh, along with his parents and two daughters from a previous marriage. I relocated from AR 20 years ago to marry him. He was diagnosed with FTD and when I could no longer care for him, placed him in a nursing home, nearby. I still reside in our home, pay our joint bills, etc. His parents visit him regularly but my relationship with them is very strained. Now, without any family of my own, nearby, lack of moral support has taken it's toll. I am contemplating selling our home and relocating closer to my family in Arkansas. Perhaps West Virginia or Kentucky (?). Because my husband's entire family is in Pittsburgh, could they gain the right to prevent me from doing so?
My takeaway from your story -- and it isn't very cheery -- is that the support you think you have in AR might be an illusion. Yes, you have family there. You might even have awesome conversations and awesome visits with them. A true connection.
At the same time, your AR family has not built you into their day-to-day for 2 decades. They are all 20 years older/weaker/needier than when you last mingled with them regularly. (Possibly 20 years smarter and more compassionate and more evolved?? Only you can answer that. And you really won't know until you "buy in.")
Chances are good that your arrival in AR will be perceived as a move to help THEM. After all, you have no kids, hubby will be tucked away in residential skilled care, and you're "only" 47 years old. Voila!
It'll start slow. Can you watch this one's grandkid for a few hours? Can you clean Mom & Dad's gutters cuz Dad shouldn't be on ladders anymore? Can you drive so-and-so to a doctor's appointment? These aren't necessarily bad things. Family pitches in for one another. But after the novelty wears off, the "asks" will become expected.....yet who will do XXXXX for you? And what are your economic/earning opportunities in AR?
Best to stay put. "The devil you know." Even in WV, you will be away from the familiar -- as will hubby. And you'll still be too far from AR to integrate your relatives.
Please find yourself some caregiver support in Pittsburgh. Often, university medical research facilities offer support groups. Or 1-one-1 therapy might be better?
Learning to draw better boundaries with the in-laws/steps will benefit you now. And also for future challenges that do not involve them. And after 20 years in Pittsburgh, you surely have a network of friends. Nurture those relationships.
BIG HUGS. You sound so worn down. Hang in there.
Lana, it sounds like you have POA, is that the case?
Early onset is very difficult, I imagine! It is hard enough when the elderly develop it. You are only 47 and need to find your life again.
What a terribly difficult situation you find yourself in, Lana. I'm very sorry for it.
Has something happened recently that felt like the last straw to you? It's just that if you've been coping graciously with your in-laws and steps for all this time, I'm wondering what made you reach out now?
Your DPOA requires you to act in your husband's best interests, and on the face of it moving him simply wouldn't be. You would be taking him out of his familiar environment and further away - though hardly to the moon! - from his own family and social network. So unless there is a problem with his current care environment, and Jeanne provides good food for thought about comparing provision in the possible locations, it is hard to see how you could justify the move from your husband's point of view.
But you do also have every right to seek support and opportunities for yourself.
Have you considered the even more radical possibility of moving and leaving him where he is? How old are your stepdaughters, and what are their circumstances?
You're only 47. God willing you have the next thirty to forty years to think about. Have you been able to form any plans for yourself? Do you have a career or other outside interests you want to get back to?
Are your in-laws living with you?
Is your husband on Medicaid?
I can certainly understand why you would want to be near the support of your own family. As FF says, there is a lot to consider besides his family's attitude. Do you have a network of friends you've made over the last 20 years? You'll be losing that support. The friends you had 20 years ago are not apt to still be there for you. What would you gain vs what would you lose?
It is true that change can be quite upsetting for people with dementia. Or not. Each case is different. Sometimes change is necessary and most adjust eventually. Have you discussed the possibility of a move with his doctors -- particularly the one following his FTD?
Is your husband currently on Medicaid? If not, that is not an issue for the move. If so, this is what the American Elder Care Research Organization says about changing states:
"...while this process is difficult, it is not impossible and there is good news. Even though each state has different eligibility requirements for Medicaid, usually their income and assets limits are very similar. Most people who are financially eligible in one state can qualify in their new state with little or no re-structuring of their finances. More good news is the Medicaid application review and approval process is fairly quick. Depending on the state, it will usually take between 15 - 90 days to receive a letter of approval. Also, states are prohibited by federal law from having a length of residency requirement; this means one can be eligible immediately upon moving to their new state (or becoming a resident of the new state). Finally, Medicaid coverage can be made retroactive to the date of application. Read more about retroactive eligibility." I guess I wouldn't let the Medicaid issue be the deciding factor.
The actual trip to get to AR needs to be carefully planned. How would he do for 900 miles in the car?! My husband went on a 400 mile car trip in the final year of his dementia. It took 3 of us -- one to drive and the other two to tend hubby. That the driver was male was handy for pit stops. I certainly would not recommend taking this trip alone with your husband!
I know that AR is one of the poorest states in the nation, ranking #49 or 50 on most surveys. Pennsylvania is not exactly rich, but it is a bit higher, at #31. This MIGHT impact the quality/quantity of what is available to care for someone with dementia. Have you visited nursing homes in the area you would be living in?
Would the daughters move with you? Will they have good opportunities for job or education in the new place?
You should definitely take a nice long vacation with your AR relatives and scope out what things would be like if you could overcome all the other issues and move there.
You say that you would sell the house. Who owns it? Are your in-laws paying rent to live there? Do you depend on that income? If strain with the inlaws is the primary problem (besides missing your family) then would making different living arrangements without changing states help a lot? If your husband is on Medicaid, there may be a lien on the house. Explore that before you make firm plans!
If it were me, I think I'd try staying put, with the in-laws not living in your house, and working on building a local circle of friends. I'd definitely attend a caregiver support group (perhaps one specifically for FTD) I'd somehow visit my relatives as often as I could afford. And only after I'd tried all that would I consider moving out of state.
But that's me. And I had my entire family around while I was caregiving, so I don't know first-hand what your situation is like. You need to do what is best for you and feasible for your husband.
Keep in touch here. Many of us will be interested in how this works out. We learn from each other!
His parents have his POA? Yes, they could stop you from moving him.
Then there is the logistics of traveling to a new town. Would hubby be able to travel in a car for one or two days, maybe more? Would he be able to travel by train or fly without any commotion?
Another thought, is Medicaid [which is different from Medicare] paying for his current room/board and care? If yes, please note that his Medicaid will stop at the Penn State line. Your husband would need to apply for Medicaid in whatever State you plan to relocate, and that could take months. Each State has their own rules, regulations, and programs. You might find yourself being hands-on once again while you wait for a Medicaid opening at a new facility.
So much to think about.
I would be very concerned that your husband's own parents and siblings wouldn't be able to visit him. Curious why is there a strain relationship with his parents? Does it have to do with his illness? You all need to work as a team. Otherwise, take time off and visit your relatives since hubby is in good hands.