Joined: 1/22/2016 Posts: 3
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Hi - My husband was diagnosed with EO in October of last year. Before his diagnosis he always talked about moving to Florida when he retired. He retired in April partly because of the diagnosis. We own our own home and he has recently said that he no longer wants to be here and needs a change. I have always told him that I didn't want to go south for several reasons before his diagnosis but even more so now. His Alzheimer's is being well controlled right now with the medications but he still has several symptoms. Since we have no idea when things may change I don't want to leave family and friends and possibly have to move a second time. I have been investigating some retirement communities around our present home and he is not even interested in looking at anything. We have two dogs so a lot of choices are not available as far as other housing is concerned. I have been so stressed out over this and don't know if I am doing the right thing or not. Can anyone relate or tell me what they have done? He is also in pretty much denial about the Alzheimer's as well.
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Joined: 12/15/2011 Posts: 18715
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Welcome, Pammy. Your husband may not be in denial but may have anosognosia, which means he is unaware of having dementia. This is a common feature of dementia for some patients. Here is an article that will explain more about anosognosia to you:
http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf
You may want to discuss this with the other spouses. They have had many discussions about moving, and can give you the benefit of their experiences. You will find them at the Spouse/Partner Caregivers board.
I'm glad your husband is doing well. Consistency and a stress-free environment is important for us patients.
Iris L.
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Joined: 7/24/2015 Posts: 3020
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Hi,
As a person dx'd with dementia...let me tell you that it is a HARD dx digest...much less talk others about. There is a HUGE portion of my family that I do not discuss it with...and even those closest me, I will only discuss small pieces of...including my doctor. We just simply are not wired (and men especially) say people that we having an issue. For some reason our society and culture has made that taboo.
I always recommend spouses and concerned others...work on you relationship and communication around it...in such that he may feel more comfortable talk about it. Oddly enough, we are dealing the same issue my granddaughter toddler...who is being dx'd with autism...how do we talk about with her and around her...how can we make her comfortable with that she is inherently different than others. As a girl, she is aware that she is different...and even before age 2 is embarrassed of the difference. No one likes be told work on themselves...but we can all benefit from adjusting how we are...for them...and we know we succeed when they feel more comfortable about sharing about it. Like, I will know I have it right when she feels comfortable spinning in front of others and doesn't care if they are watching. If that makes sense?
Moving is a big one. This will be a hard journey...and you will definitely want your resources. He is also early stages...and so pretty with it (which can also account for denial...as we all on here, each of us, personally, with ourselves deny, second guess, and wonder...do we really have this?).
He is likely able make a change at this point.
But, another factor will be...how able he is set a new pattern of behavior in a new place. If you can establish this and stick with it...then it shouldn't be an issue move at this stage.
However, do no discount that you want stay.
It could be a huge benefit no have worry about upkeep or mowing. Unless you, personally, are interested in a retirement community I would no suggest it as he will eventually progress a point that they will no let him stay. Instead, I might recommend an apartment or condo.
I would also recommend rather than moving...maybe consider traveling?
At some point...you and he need have a serious discussion on the fact his clock ticking and that he only has so much time. And find out what is really important him do in that time? Are there places he wants see? Things he want do? Experiences he has always wanted do? In this, you also need figure out how he wants certain aspects of the disease handled...should it surface. Like, if he is unable remain home...does he want be far away from family or near family? This kind of conversation could reveal many answers help guide you in this.
You should also consider where is the best dementia supports. Some places rock this...and other places truly suck.
Consider if the place you are living now is too much for you handle alone. That should be the biggest decision factor...I feel. Since in all likelihood you will one day be doing everything.
For us...I am in my childhood home, which I figure that as my brain goes I will have the best likelihood of finding my way back if I get lost. We have stay here because I am committed caring for my mom...and she will no leave. But, if it were me...I hate winter and I hate the humidity and bugs in the summer here...if it were me, I'd move Hawaii in a heartbeat. I love out house, but I hate it here...if that makes sense. And, in many ways it bothers me that I will die here...as for the last 10 years I have told myself that after my mom I would go Hawaii...and I feel it is a huge let down. But, I love my mom more than that...so I stay...and make the best of it.
There are just so many different factors weigh in making a decision. He seems able argue his side of things...he seems want change. He could likely handle it at this stage and do well. But you need factor your needs and wishes in as well.
Hope that all makes sense and is of some help.
<3
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Joined: 12/2/2015 Posts: 1018
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Pammy, I started having cognitive issues 6 or 7 years ago, but they were minimal and I thought relate to my heart failure which was very bad at the time. About a year and a half ago, things had progressed to the point where I was having real problems with everyday sorts of things. I had one major event, and that night I said to my wife that we needed to sell our house right away and downsize into a condo because I had passed the point of being able to take care of the house and in a few months might not be able to even help sell the house and move into a condo. I was scared so to say. At the time, I didn't have a diagnosis and I still thought my cognitive issues were brain damage from heart failure. We sold the house and moved, and we have been very happy with everything. Shortly after moving, my heart doctors sent me to a memory assessment clinic at a major medical center and a Pet Scan and other testing showed I had early onset Alz and Lewy Body Dementia, with Lewy Body being the dominant diagnosis. Today, there is no way I could help sell a house, buy a condo, or move. That is my story. You have to decide for yourself what is best, but your husband should put first consideration on what is best for you and your ability to take care of him and take care of yourself. Just my two cents. Maybe a doctor or minister or someone he respects could help him see the light. Good luck.
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Joined: 1/22/2016 Posts: 3
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Wow that was great!!
Esp. liked your comments about talking to him and finding out where he wants his life to go. We have not always had the best communication as he is very closed about lots of things and doesn't reveal a lot of feelings. But we need to work on that.
Thanks for your input.
I know it is a big letdown to not be able to do what you had always planned for your life but you are making a great sacrifice for your Mother. Hopefully you will find that this will bring you happiness as well.
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Joined: 1/22/2016 Posts: 3
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Thank you Bill - I am trying to get this resolved before it becomes an issue. I am going to have to have a talk with him again to see if he can try to see things differently.
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