New diagnosis in middle of major life changes.

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?

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.

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.

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

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

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).

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