New diagnosis in middle of major life changes.

babbittc

Hello all, my husband was diagnosed last week with Alzheimer’s …The signs have been there for about 2 years, I believe my husband is in the mild stage still. Our neurologist didn’t provide a lot of information.

I am struggling with some major life changes we started making a year ago. We planned to move from Michigan to Florida this June and are building a home down there. In other words we are financially committed…selling the home is an option as we still have our main home in Michigan. I started applying for jobs in Florida, and was offered a job last month that is suppose to start April 15. I am The thought of two mortgages now is overwhelming me.. the financial burden and maintained of two homes now is overwhelming me. I am not willing to give up my Michigan home because I can afford it on my own.. I am younger than my husband and need to work for
the next 15 - 20 years regardless of where we live.

Am I being naive in thinking we can still make the move.. that I can still take this job and start this new chapter? We are moving into a retirement community. We planned to get him a golf cart and try to get him involved in group activities during the day while I am at work.

I am worried that we won’t have a support system in Florida, that I won’t be able to take time off from a new job..what if he declines sooner than later? He isn’t able to follow complex tasks, drive long distances.. he still holds a conversation but often repeats the same questions. He gets confused easily when planning for anything… gets very sad and emotional ( we have him on pristiq) and has significant REM sleep disturbances almost every
night. However I don’t think he really understands his diagnosis… he doesn’t seem to understand the amount of care he will need in the later stages.

He still wants to make the move… but am I being naive in thinking we can make this work? Should we make decisions now based on the what if’s?

Iris L.

Welcome babbittc. You're right that he really doesn't understand his diagnosis. This is the definition of anosognosia, which is a common aspect of dementia. Thus, his input in making plans will be unreliable because he is unaware of so much. Other members will come along and discuss further. Iris

SSHarkey

Hello, and welcome to the forum. I believe you are correct to reconsider the move. You are going to need a strong support system in place. And yes, it will get much more difficult while you are fully employed. I know you were planning on a retirement adventure for your husband. But what will it do to you? I know that sounds selfish. But you will be unable to work and care for him at the same time. And will the end leave you in Florida alone? Think about the long term needs for both of you. If you can afford caretakers to come daily while you’re working, or memory care, then you can continue on with your work life more easily. Where will you both get the best support? Where do you want to be living when he has passed?

M1

Welcome to the forum. Your situation has so many moving parts., which adds to the complexity for sure. I agree that you will probably be better off staying in Michigan than moving to Florida. His ability to make new friends and adapt to a new environment will be limited by his diagnosis, sadly. There is a shying away that happens even among established friends and family members, and he is going to end up leaning on you for more and more support for very basic needs as times passes. Trying to provide that for him at the same time as coping with the learning curve of a new job for you and a new physical environment for both of you sounds overwhelming. Just physically being in an unfamiliar space may prove quite difficult for him and could hasten his disease progression. So if you have the option to sell the Florida property, that's the route i would take.

You may need legal advice on the sale and how to plan your finances for the future. If you plan to continue to work, can you afford memory care for him (my rates just increased to 10,600 per month)? You need to have durable power of attorney for him for healthcare and finances, and your own documents will need updating ad he should not serve as your POA or executor). A certified elder law attorney should be able to do all of the above.

I wish you well, you have come to a good place for advice and support.

gbriggs

So very sorry for your dilemma. I think the reality is much different than the future life that you and your husband had planned. I agree with staying near your support system, as you both will need this. Best of luck to you and your husband.

Quilting brings calm

I agree- stay where you have a support system and an employer that knows you and where you have vacation and sick days available- because you are going to need them. Affordability is also extremely important because the cost of his care will rise over time. There no telling if he will progress very slowly, rapidly or a mix at different stages.

FYI- It’s normal to be angry because your life plans have just been snatched away and replaced with a future that you didn’t ask for. Don’t feel guilty if you have those feelings.

dayn2nite2

Sell that place in Florida. You know you can afford what you already have. He cannot help you with this decision because his judgment is impaired.

BethL

I'm so sorry this is happening. Shattered dreams. You have found a good place to receive encouragement and information.

Ed1937

Welcome to the forum, but sorry you have a need for it. You said the neurologist didn't give you much helpful information. That is typical. They are good at diagnosing, but they typically just don't know much about caregiving. You will learn more here than you will from a doctor. People here are friendly, understanding and supportive. Since we are all dealing with, or have dealt with this disease, we really care about one another. Anytime you have questions or concerns, please start a new discussion. Someone here has been wherever you are at any given point in this disease.

babbittc

Thank you all for your guidance and support. I am clearly still in denial and have a lot of things to reconsider. I am still very much in the anger/denial phase and trying to cope and think through what our new life may look like now that we know what is going on. We really thought it was anxiety and depression , maybe Parkinson’s and certainly were not considering Alzheimer’s at all. At least I know now and can better plan for his future needs along with my financial stability. I have started to explore the DPOA… and am started to get these things in order. It’s all so very much to comprehend.

harshedbuzz

@babbittc

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

I would advise you to trust your gut and stay put. This is a kind of BTDT thing for me as the child of parents who did what you are proposing.

I can appreciate that not going through with this will have repercussions financially (although maybe not as dire as you think-- there are still people who hold fast to the dream of retirement in FL) and in your relationship. People think of Alzheimer's as a disease of memory loss, but there's more to it. Very early on, you can expect a loss in empathy (PWD often can't consider the impact of situations on others, and many don't care even when it's pointed out to them), higher order thinking, reasoning skills and executive function (the ability to think through something understanding cause and effect). Add to this anosognosia, a condition in which a PWD is unable to appreciate how impaired they actually are, and you can expect significant anger around changing your mind.

Dementia is progressive and the rate can vary. If this is a young onset Alzheimer's it could progress more rapidly than if he's over age 70. A person with Alzheimer's can live 10-15 years, but the average life expectancy at time of diagnosis is about 6 years. If the disease follows a typical progression, you will be assuming the role of frontal lobe for your household fairly soon and taking on late-stage symptoms (wandering, sleep disturbances and incontinence) with years left in your career.

You are going to need the most robust support network possible. And you may need it sooner than you think and without warning.

My story:

My parents moved from PA to MD in 2000 when they both retired. Dad had some personality changes and the onset of a lack of social filter when they bought a place in FL and started splitting the year between homes in 2005. The first couple years in FL were OK, but as dad's dementia (still undiagnosed as mom was in denial) progressed they became more isolated. Mom still had a social life, but dad wasn't always welcome within certain groups.

In February 2016, mom became ill. Her symptoms were initially fairly vague-- tired and no appetite. I called daily to check in and dad told me plausible but conflated stories about why she wasn't answering-- she was napping, she was at Publix picking up sandwiches, she was at the pool with the other ladies. I did get through to her once and became concerned. She told me how tired she was and how her doctor told her to see a psychiatrist. The next day I called, and dad wove me a tale of marital discord accusing mom of being lazy and not cooking dinner. I didn't get an answer the next day and the day after, so I called the local police for a wellness check-- they said dad answered and all was well. The very next day, a hospital called me in PA to inform me as "emergency contact" that my mom had autoimmune liver failure and might not make it. She was actually in the hospital when they came.

Dad had frog-marched her to Publix to buy him something for dinner when a retired RN neighbor saw her. Mom was the color of a school bus. The neighbor drove mom to the ER over dad's objections. I later found out that the doctor who referred her to psychiatry actually told dad to take her to the ER immediately, but he decided to go out for dinner and drinks instead. I flew down to FL and took over mom's decision making and kept an eye on dad at night when things really went south behaviorally. I stayed 10 days and then my niece came for a week while mom got her strength back.

This incident convinced mom to finally have him evaluated, but then their trip back to MD was delayed until July by a recurrence of dad's prostate cancer. During this time, I made a Plan B to get him diagnosed and pulled the trigger on Plan C when dad went into a psychotic episode while mom traveled to her sister's funeral. He was diagnosed in "mild" stages at the time but I always knew he was further along. Dad tended to showtime around doctors giving a false impression that he was more with it than he reliably was.

After this hospitalization, mom and I moved them back to where they raised me so I could help them. Their homes in MD and FL didn't increase in equity at the rate the ones here did, so they had to move into a more modest home than the last 3 they owned which pained dad.

One thing about which I would caution you is to make sure you have the necessary documents to act on your DH behalf. Also, make sure you name someone other than him (discretely- he doesn't need to know this part) to act on your behalf.

I would lock down your money by whatever means necessary including freezing your credit to avoid your DH spending expansively. Watch investments and internet use-- especially as he is home alone while you work. Dad made some disastrous day-trading moves with their nest eggs that cost them $360K. I had warned mom to shut down his access to the internet but she didn't have it in her to bear the brunt of that decision. Other members here have had their PWD scammed via email, become addicted to shopping for things they don't need and develop porn habits. It's best to supervise internet use.

Maybe the answer is to vacation in FL when you can.

I wish you luck and strength as you navigate this difficult situation.

HB

mrahope

I completely feel you and concur with all the advice you've received here. Getting support from others will be crucial to your and your DH's lifestyle. I literally moved to the town where my DS and his family live just to get their support, and it's made all the difference. And, yes, get to the financial affairs/DPOA right away while he can still understand what's at stake and express his end of life wishes.

It's so, so sad to see those retirement dreams go up in smoke. It's ok to feel angry, sad, or both.

dayn2nite2

https://alzconnected.org/discussion/comment/201074#Comment_201074

Another problem with moving him to a retirement community is the other seniors will know there is something obviously wrong with him and they will avoid him like the plague. It's unfortunate, but seniors can be very "high school" when there is an impaired person around and they will avoid and gossip about him. His time there will be short because his disease will progress and they will demand that he leave (the community in general-they don't want to be reminded about disease while they're living it up).

Beachfan

You have received good advice all around. Here’s another angle to consider. Can you financially manage to stay in Michigan, finish the Fl home and then keep it as an income property? Years ago (2009), when DH was on the cusp of an Alz diagnosis (I was clueless at the time), we bought a beach property in NC. I thought we would retire, sell our PA home and live between NC and another beach property that was in my family forever in NJ. While “waiting to retire”, Alz crept in and we ended up staying in PA near family and friends, continuing to enjoy the NJ property and renting the NC home annually. We have had only 2 annual renters in 14 years; our current renter is there 10 years. The property pays for itself; it’s a lovely home that we never even slept in! People marvel at our investment “savvy”; HA! It’s actually a retirement dream gone bust. Good luck to you; you have some difficult decisions to make.

As an aside, DH entered MC in 2021 and passed in April, 2023. I am still in PA near kids and grands, we all use the Jersey ‘shore home but the NC property is out of sight, out of mind for the most part.

jfkoc

I have nothing to add except please do keep us posted.

trottingalong

The only thing I could add is to think what you would tell a good friend going through the same thing.

my opinion is the same as the others. Moving to a new home and new job just seem to be biting off more than you can chew. Wishing you the best and do keep us posted.