I don't think I can do this!

Seek an elder law attorney who specializes in this. Not just a regular attorney. I wish you well.

My husband was diagnosed 3 years ago with Vascular Dementia. He is progressively getting worse. Can't do anything himself. I feel trapped at times also. It is a hard situation for anyone. I do have caregivers coming in daily so I can get out of the house. Very important to take care of yourself. When I can't handle it anymore I will have no choice but to put him in a home. Does anyone else feel this way?

My husband was diagnosed 7 years ago and yes, I feel exactly as you do. I am getting by right now with a few afternoons of caregivers, but I also know this won’t be enough for the duration of his illness and that mc is likely in our future within a year.

@ScaredandLost

My mom explored this idea with an elder law attorney. The situation might be a bit different— their relationship had been one of highs and lows and had been in a bad place since dad's early symptoms of dementia started almost 10 years prior. She gave up a lot to try to repair the relationship including moving away from the rest of her family and friends.

When dad was finally diagnosed a decade on, she considered divorce. I took her to a woman I knew socially who is a CELA (nelf.org) and we discussed divorce as an option. Mom, like you, didn't feel she could cope with being a caregiver (despite already being one for almost 10 years without realizing it). Dad was a difficult person and mom was angry as one of dad's forms of dementia was alcohol-related.

The way it was explained to us is that a divorce was possible but that costs could be high. Each would need legal representation, dad would also need a guardian ad litem and the court would order neuropsych testing to establish incapacity. This takes time. During the process, dad would need to be cared for; he wasn't safe home alone and wouldn't accept in-home care from anyone but mom. Their estate would have been split 50/50 and mom might have needed to pay some form of alimony and continue to cover his medical expenses.

In my county, a divorced spouse loses any say in care decisions and would not be considered for the role of guardian. If there is an adult child or sibling willing, they would be making decisions regarding care, finances and contact with you. If no one else is deemed acceptable, then a professional would be assigned with costs coming out of DH's (and potentially your) funds.

In the end, mom decided against divorce for a number of reasons. The loss of agency to determine his care stuck in her craw. She still cared deeply and wanted the best for him. As only surviving child, I would likely have been named guardian and mom didn't trust me as we never got along. The financial piece was a driver as well; dad had already made some financial decisions that cost them at around $400K of their nest egg. She also worried about what others would think and the whole "in sickness and in health" thing. Others were unaware of his past and current behavior, and she didn't want to be judged by them for ditching him when he needed care.

So, she took a gamble and stuck it out. Dad lived another 18 months. Her health suffered during his care but she's older so it's hard to know how big an impact staying had. She did survive with her reputation and a "loving wife" intact (it mattered to her) and the entire estate. TBH, a divorce complicated by dementia in one party probably would have taken at least that long. Had the divorce gone through at 12 months, he'd have had some assets left which would have gone to me and my sister's kids— not mom.

HB

@ScaredandLost

Dad's path to a diagnosis was unusual. I started to notice personality changes around 2005 when his personality took a darker turn. At the time, this lack of empathy was not on my radar as a symptom of dementia. Around this time, my mom was reporting more and more unhappiness in the marriage and most of their social group ghosted them likely as a result of dad's loss of social filter (another symptom I didn't attribute to dementia until I knew better).

In 2008, I started to see obvious memory issues. Dad got lost driving to a band competition that was across the street from his beloved brother's house and a couple hundred yards from his first business. Another striking glitch that started around this time was his telling conflated (false memories) stories about family history. These were all stories of terrible behavior that resulted in him having to step in and save the day. These things did happen, but dad was hazy on the details and assigned me the role of villain because I happened to be the person in front of him. One night he told my then middle school aged son about the night I left "the kids" in a bar and left them while I went off with some random dude. This did happen— but it wasn't me. Fortunately, DS is an only and knew his grandfather was making things up.

Mom continued to fight me on having dad evaluated. Because they split the year between FL and MD, there was little continuity of care, so no doctor picked up on anything amiss. Mom kept telling me she was unhappy and wanting a divorce. Dad told me mom was mean and he wanted a divorce. They kind of circled around like this until 2016. Mom ended up in the hospital in FL with auto-immune liver failure. Dad had been unable to advocate for her and when told to take her to the ED decided to take her out for dinner and drinks instead. A neighbor got her to the ED a day or so later and the hospital social worker tracked me down after interacting with dad unsuccessfully.

Once they returned to MD, she was willing to consider an evaluation. I made an appointment at the university memory center nearest me. Dad developed psychosis from drinking and mom took him to the local ED which released him with a referral to a neurologist after saying it wasn't a stroke. Mom's sister died and we went to Boston for a week for the funeral during which time an old friend kept and eye on dad. Her reports were not good, so we drove home right after the service. When mom got home, dad was in the middle of an extreme psychotic episode and had trashed the house. She put him back in the car and drove north to the hospital at which I'd made an appointment.

He was admitted and given Alzheimer's pending a full workup outpatient. That was changed to mixed dementia— Wernicke-Korsakoff's and Alzheimer's. This was December 2016. Doctors staged him at mild but I would guess that his ability to showtime (present as almost OK for short periods) and cognitive reserve (he was very bright) made him look less impacted than he was. My guess would have been stage 5 on the DBAT at the time he came home from the hospital. Six months later, he was stage 6 and needed 24/7 supervision. He died in spring 2018.

Mom always said she could never be a caregiver for years and years. And yet she was for almost a decade before she realized she was. In many respects, she was the frog in a warm pot on water set to boil. I suspect this is common among spouses who live the day-to-day compared to the adult child who comes and stays a few times each year.

YMMV.
HB