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?
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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.
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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.
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.
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.
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.
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.
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?