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tarajane Asked November 2015

Has anyone moved their loved ones with mild stage dementia to a different state and if so how did it go?

My husband and I have been wanting to move to FL for a long time.   We have not been in a position to do so until now.  Nothing fancy, just a cute block house. My husband is in mild stage Dementia. He tells me he really wants to go if we can afford it.  We are very familiar with the area we want to live in so I don't think he would be totally confused because he would see all the familiar places we have been to. Does anyone know if FL is a better state than most for Alz/Dementia patients. There seem to be a lot of elderly people there and was just wondering if they had a lot of programs for these patients? Thank you all. We really want to go but I am scared sort of. No family down there but a few good friends.

Sunnygirl1 Nov 2015
Moving is a personal decision, but due to the issues you have had with your husband's progress, it would not be on the top of my priority list. I would be more inclined on making immediate plans for my safety and welfare, as well as protecting his. Perhaps that could be done in Florida, however, moving is stressful and time consuming. I would suspect it would not help with a person who is already hostile and unpredictable. Perhaps medication could help that long term, but I would really have to ensure that.

While Florida may offer events and services for seniors, I would explore as to whether they are things that would be suitable for dementia patients. You may be able to partake though.

I would also not count on family friends to be of assistance. Many people are uncomfortable being around a dementia patient. Depending on his progression, he could render you confined to your home most of the time. And if he's aggressive, it's not safe and I would not invite friends in to help me with a person who is threatening.

I would also consider that full time caregiving for a dementia patient is not conducive to also having multiple pets like chickens, goats, etc, since every waking minute is supervising the patient, even if you have outside help coming in.

I would make sure that the legal documents that he signed, such as DPOA, Will, etc. are compliant for the state you plan to move to.

vstefans Nov 2015
Given it is so familiar, if you find that the service systems are OK (go online, or maybe some others from Florida can tell you more on here - maybe start a new post with "How are services for seniors with dementia in Florida" in the title...) it might be just fine. My mom moved from PA to AR to be with me and though not all was silky smooth it was the right decision and she ended up liking the facility here as well as she did the one in Pgh, and she got grandkid visits that were treasured that would not otherwise have happened. Just my $0.02.

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sandwich42plus Nov 2015
I forgot to say that in the continuum care campus, the spouse who had a lower need level would be in one unit, like the apartments, and could go visit their wife or husband over in their unit. There were married couples there in the apartments who could stay more together with their declining spouse this way than if one of them had stayed in their home. They ate meals together, had a lot more time together, and the journey to visit was really nothing. It's a great model that I wish every community had.

sandwich42plus Nov 2015
Loooooooooord have mercy, I did this with my mother when she was somewhere between early and moderate stage dementia. Probably closer to moderate now that I think about it. It was a really, really, really big job. Physically, mentally, emotionally, financially.

I moved her from NC to MN for several reasons besides the dementia - NC has gutted their senior services and medical assistance programs. I'm not sure what the legislature thinks people are supposed to do other than not age, always be wealthy, and never need services. The county she was in was rural and had squat for senior help on the order I knew she would need.

To qualify for services in any state, you need to live there a certain amount of time first. Google for the Area Agency on Aging in the location you want to move into. Talk to them about what there is, how do you get it, what is the outlook for in-home service and facilities. Google news articles about what the legislature is doing to expand or cut Medicaid.

Google their state department of health - they should post the daily rates for care facilities for the past couple years, so you can see how much things increased from last year to this year.

Look into the future - not the rose colored one - and plan for it. Expect to need help. Expect to need services. Expect needs to change suddenly and unpredictably.

I got really lucky and found a spot for mom in a continuum care community. They have it ALL. Independent apartments all the way to hospice. When mom has had to up her services and need level, I did not have to get on the phone and find a place. The staff simply moved her to the next unit. Now she is in hospice, and I can't tell you how much anxiety it has saved me up to this point to not have to worry about where will she go? Can they handle dementia? What kind of care is going on?

I wish she had gone into the independent apartments 10 or 15 years ago. The gradual loss of her mobility and cognition would have been a softer landing than it was, in her own home, in the country, with no real safety net in place. She never really got to enjoy all the perks and benefits of living in an over 65 community because her dementia was farther along than we realized.

10-15 years ago in the early days of her dementia, she could have had a better quality of life, better health care, better mental health care, and a whole lot less fear, stress, anxiety, and isolation if she had been willing to make a change. She would not have missed doctor appointments, PT, dentist, or hair appointments. She would not have needed to drive anymore.

I see too many of my friends whose parents are totally unwilling to make any changes to support their future needs, and it' very sad to watch it all unravel.

OzarkOlly Nov 2015
I'm going to be the one giving you the jaded response to your question. Geewhiz is right...as dementia progresses, the friends RE-gress. Then again, so do the family members that assured you early on (when your loved one could maintain a facade of normalcy with just a hint of forgetfulness) that they'd be there to support you. Trust me, when the facade of normalcy can't be maintained any longer & the "difficult" behaviors start, that family is gonna disappear into the woodwork faster than termites!! I know very well how that works....I've been doing the dementia caregiver role completely on my own for 5+ years...4 of those years also trying to hold down a full-time job AND keep my farm running...despite the fact that my sibling lived just 2 miles down the road! Oh, he couldn't be bothered to come over & help with some farm work...nevermind actually sit with Mom for an hour or two so that I had some alone time to regain my sanity. So, yeah, don't make your decision based on the promises of friends, neighbors or relatives because, in your current home or at the new home, THEY'RE NOT GOING TO BE THERE ANYWAY!

Now...on to your actual question oF whether you should move or not. My answer? Yes...if that is what YOU want. And when I say 'YOU', I mean you alone. It may sound selfish since you haven't gotten into the thick of things, but the caregiver role is one of abject sacrifice for the caregiver. In the act of giving that care, you'll give EVERYTHING to that person....you'll lose your friends, your family, your freedom, your hobbies, simple pleasures like going out to eat or taking in a movie, that chance to listen to a soul-refreshing Sunday morning service at your church and, yes, even the ability to go to the toilet or shower without the "company" of your loved one who shadows your every move. If you look ahead to a time when you will no longer be giving care, whether it be due to the passing of your husband or due to placement in a facility, and you feel that you'll be happier at the place in FL, have more fun activities to do, places to go, better weather, a more fulfilling life than where you are now....go for it. If you look beyond the caregiving days and the FL place doesn't measure up to where you are now....maybe it's not the thing to do. One thing I will say, IF you decide that YOU want to do it...do it now while the dementia is still very mild & the transition for your husband (and ultimately you) is easiest.

One last thing to think about....in case you're on the fence. Eventually...and no one knows just when since dementia progresses at different rates in different people...but, eventually, your husband is going to get to the stage where even your current place doesn't look like home to him & he'll be asking you to "take him home". Since he's not going to recognize either place/community at some point, choose the community that makes YOU happy.

tarajane Nov 2015
We have vacationed in the same place for a month at a time for 4 years now. I need animals in my life, chickens, small goats and rabbits and he also loves these animals. He really has a tender heart. If worse comes to worse,I can pack up again and bring him back. I don't think it will come to that. Our friends in FL understand this disease and are there to help me find quality healthcare. If this is God's plan then we will go. I am in excellent health according to my doc. My 6month check ups are excellent knock on wood. Thank you all. Has anyone out here done this?

tarajane Nov 2015
Thanks first off. The place we are considering is the area we have been vacationing at for the last 4 years and we always manage to save enough to go. We are poor Baby Boomers

MaggieMarshall Nov 2015
Don't know how much family you have near you, but my recommendation is going to be proceed with caution. If you have a good relationship with your children and/or siblings, you may want to stay where you are. I say that because of my personal experience when we relocated to a retirement community.

We had lived there five years, had a wide circle of friends, were very active in our church....were very well thought of. When my husband became terminally ill, I found myself pretty much alone for the 15 months he was sick until he passed. We had many many social friends...George had golfing buddies...I had three or four very close girlfriends. While they were all sympathetic and kind, I carried that load completely alone. (No sympathy needed. Made me a very strong woman.)

Finally, a week before he died, I called my mom who came up and stayed with us thru the end. We had been married 26 years...no children ourselves...a good relationship with his two kids....yet they rarely visited. His daughter saw him about six months before he died (four hours away by car). His son hadn't seen him in several years (1200 miles away).

I understand your desire to move. I really do. And you deserve to do that if that's what you decide. Just want to inject my two cents as something for you to think about.

Best wishes to you both.

freqflyer Nov 2015
tarajane, with all the things you are going through with hubby and his issues with dementia to a point where you fear for your life, does moving to a new State sound like the right thing to do?

Make a trial run with Hubby to see how he does being in Florida for a couple of weeks. You might find you get half way there and hubby wants to go back home. Or would want to drive himself if you do a road trip. Then what?

You mentioned you have a few good friends there, would they want to be your tour guides while you are there? Then that way you can see how Hubby interacts with them, even if they were old friends from the old home town, Hubby may or may not interact with them. After a couple of days, your friends may not want to interact with him :( As you know from this forum, dementia doesn't get better.

Moving isn't an easy task even when we were young and had the energy, and had healthy minds. Oh my gosh, finding a new primary doctor... hopping from one doctor to another to find the right fit... same with a dentist.... and with specialty doctors. And just as hard finding new barber who hubby would like, unless you trim or shave his head. New vet for the dogs.

Oh, and finding that new place to live. Will hubby feel comfortable or will he hate it after you move in a month later.... oops.... now what? With dementia there are always surprises.

geewiz Nov 2015
Phew, lots to consider. Support system in each location would be at the top of my list! Then I would be thinking about the cost of home aides and memory care in each location -- as much as you may be able to offer now, there will come a day that you need in-home help or a facility. What about public transportation - will you need that? How are you aging?

Since you seem to have a location in mind, call the county office of aging there and see what is available. It may be more or less than your current situation. And not to bunch everyone into a category, but often friends disappear as dementia worsens. Are you ready to do this on your own?

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