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?

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Tears and my sincere thank you to all of your responses and great advice. Yes, I believe my first priority should be finding some local support groups and trying to live again. You see, about 5 years before my husband's diagnosis, I stopped working and went on Social Security disability for an eye condition called, Nystagmus, which I was born with. It's an uncontrollable eye twitch for which there is no cure or treatment. I suppose my constant eye strain using computers at work, as well as the anxiety of my husband's mysterious behavior changes, caused my eye condition to worsen to the point I could no longer work. I lost contact with all of my colleagues/friends. My husband and I were very involved at our church where my husband also worked as their technical director, which was just a small side job. When the previous pastor who was also a close friend, left the church, then soon after, my husband's illness progressed to a point he couldn't even do his small job there, we stopped attending. Long story short, I have basically become a total recluse since moving my husband into the nursing home. Other than visiting my husband, I primarily stay home with our three dogs. Contact with his family was my last outlet because I don't have any relatives within 1000 miles. It's hard to believe how full and wonderfully hectic & social our lives together, were, just a few years ago! And yes, I do have POA for my husband. That's why I began questioning my options. This is my husband's home town and we previously had long term plans of relocating to at least, a different county, and smaller town with a desired "Norman Rockwell" flare! (But he got sick before that could happen). His two children, daughters, still reside in the area. They are 26 and 23, finished college and beginning their careers. I also have one child of my own from my first marriage. My daughter is also 26, but a few years ago, she relocated to Los Angeles and loves it there! I miss her so much but thankful she's happy. As I said earlier, my husband was a genius and meticulously handled all our finances. I didn't finish my degree so my employment history was mostly administrative. Therefore, my husband was definitely the primary bread winner. I was unaware that he was no longer paying our bills (because he no longer knew how, unbeknownst to anyone!) I partially blame my ignorance on paperless billing! It wasn't discovered before we had lost our life insurance, most of his retirement, etc. Our home is basically all that we retained so therefore, yes, we depend on Medicaid for his nursing home care. To some it all up, I suppose I questioned my legal right to move us out of state, because I am trying to determine how I can ever again have quality in my own life, rather than continue to isolate! There's no question that my husband and I are both victims of this illness. I appreciate the suggestion for me to attend some groups. I don't believe there's one nearby for specifically, FTD, but any of them dealing with loss, should be helpful. I will, at least try that before I put up any "for sale" signs! Thanks so much!
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Lana, your in-laws/stepkids are a piece of work. I know their type well. They are incapable of respect and incapable of reform. And there's something about the 20-year mark, isn't there.....?

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.
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Good point, Glad.
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The statement of the OP about POA can be read either way. It is not clear.

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.
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The OP has durable power of attorney. She's also the wife of twenty years, which trumps parents, siblings and children.

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?
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Who has financial POA? medical POA?

Are your in-laws living with you?

Is your husband on Medicaid?
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Thank you for your response, which truly makes several excellent points. I attempted to explain more specifics regarding my predicament but proved far too lengthy. I will just say that one sad fact is that, for 10 years while my husband's symptoms were occurring without explanation, I suffered profound abuse which was completely ignored by my in-laws. They simply thought he didn't want to be my husband. I am his second wife and we have no children together, which I must also attribute to why I was so easily discarded by them. My husband's family, however, did praise me with saving his life after I took him to Western Psych and FTD was finally diagnosed. But that was short lived. After I could no longer keep him safe in our home and they, too, supported decision to place him in a nursing home, the friction began when I could no longer ignore the fact that they were regularly helping themselves to any possession of ours which was primarily used by my husband! (They took our power tools, weapons, etc and gave to their other family members or sold and kept the funds). I eventually had no choice but sever the relationship. However, I have allowed them, unlimited visitation and even permit them to take him on regular outings. But they are now trying to manipulate nursing home staff for HIPPA protected information. I do not know what their ultimate goal is! Meanwhile, I am a 47 year old woman who's lost my 54 year old husband to this horrible disease. He was once a genius electrical engineer and now has the mentality of a four year old. (This particular dementia affects reasoning moreso than memory). My life is dedicated to doing what is right for my husband, but I truly feel that if my relocating the two of us, two hours west, (West Virginia) is what's best for me, personally, then it will also be best for him. So, although my in-laws wouldn't like my decision, my question is...could they legally stop me from doing so, if they wanted to?
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Rereading your question I'm not clear on who has the durable POA. And who has healthcare proxy/POA?
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I doubt that his parents could prevent you from moving with your husband.

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!
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Any move or change will cause the dementia to progress at an alarming rate sometimes. If he is well cared for where he is leave him there and visit when you can. Mend fences with in-laws you will need their assistance and information about your husband after you move. Sometimes family relationships crumble when one develops dementia. It is very hard for everyone. Who has hubby's POA's?

His parents have his POA? Yes, they could stop you from moving him.
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lanawb69, when it comes to relocating a person who has dementia and is now residing in a nursing home, it would make the dementia worst. Your husband would have a very difficult time adjusting to a new facility.... new room, new floor plan, new food, new sounds, new faces, nothing will look familiar, and that can be very scary.

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.
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