Marriage

hendersontracy12

I am at my witts end. My husband is 53, we have been married 13 years, we went through addiction and many battles that go with that, together and came out the other side together when no one else in his family was supporting him. He was just diagnosed with dementia officially 2 months ago, but have been dealing with it for over a year. He is a rare case, the symptoms got worse overnight about 9 months. His mom and family live about 3 hours away, he goes up there for a week every 2 months or less. He doesn't want to come home, tells his mom that he isn't happy at home, mind you she gives into his every whim, whatever he wants, and tells his mom things that aren't true, dr says his confabulation is intense, and I can contest that it is. When he is home he calls her all day every day, even when I am home on my days off. When he is at his moms', he hardly calls me. I understand believe me that dementia is changing him. He will say he loves me and how we have made it through things that would have torn us about apart. But then he doesn't want to be home.

The question do I just let him go, do I continue to fight for a marriage that he tells his family he isn't happy in but yet tells me he doesn't want a divorce? His memory is really bad most of the time. Like tonight after his mom brings him home, he won't remember being at his mom's this week, he doesn't remember that he was in the hospital for 3 days this week and I was up there with him. I am not trying to be petty, I just don't know what to do anymore, his mom only makes things worse, she has him convinced that I was drugging him at one point.

He is on CBD oil because when he gets mad it will go bad real quick and it is scary. He knows he is on it.

Open to suggestions ???

JDancer

My opinion may not work for you, but I would let him stay with inlaws as much as possible. IMHO, you're fortunate to have time without him. This opinion is from someone overwhelmed by caring for her 64 year old spouse 24/7. I wish he would go away…

How do the inlaws feel about the visits? How does he get there? How will things change as his dementia progresses?

Jeanne C.

Honestly, what do you want the result to be? Do you want to be his caregiver? Do you want his mom to do it? There is no right answer - just what's right for you. I would think about what the best scenario would be and work toward that. In the years leading up to my husband's diagnosis (FTDbv), it was rough and I almost left. I took stock of what I wanted and realized I wanted him back, not gone. So I stuck it out. No, I'll never have my old husband back. But I do see glimpses of the sweet and caring man he was, and that's enough for me.

Quilting brings calm

I would go visit two lawyers -a divorce lawyer and a certified elder care lawyer. Not necessarily to divorce - but to find out the financial ramifications of staying married vs a divorce. He’s young, and presumably you are of similar age. These are your prime earning years for your own retirement. Can you afford to quit your job and stay home to be his caregiver? Can you afford to take the financial hit that being married to a dementia person can be? Your state may not have reasonable community spouse Medicaid laws. That means you could risk your financial future by staying married throughout the course of this disease.

Personally I’d divorce him if the financial implications for your future even slightly favored it. You could still be in his life - but not living with him, being the daily caregiver or legally responsible for him. And his bad decisions. If he’s not happy, he could become aggressive.

wizmo

I'll ask a different question - what do you feel is your commitment to him? There is no wrong answer; it is ok if you want to walk away (or run). Many of us wish we could have gotten out sooner. Seems like his decline is quite rapid and this is often the case with early onset. My DW was diagnosed EOAD at 52 which was 10 years into our marriage. During diagnosis I discovered medical history she had kept secret, something that might have changed my decision to marry her. But our commitment was already solidified. That was 7 years ago. Her decline was slow for a long time but accelerated in last year or so, recently placed in memory care (a saga of its own, still unfolding). The caregiver journey is very difficult and will consume you if you let it - emotionally, financially, everything. You may lose friends and career. You can read the stories here of our suffering as well as how we get through it. The support in these forums is priceless, better than you will find anywhere. You are fortunate to have respite via his family and maybe you can turn over majority of care to them to save yourself. I second the suggestion above - get legal advice to understand your options. Don't fear judgement for making a difficult choice, especially from others who did not have to live with this disease.

ImMaggieMae

I’m wondering if his mom will want to continue caring for him as the disease progresses. Most people don’t realize what caring for a PWD involves and how it takes over your life. Is his father still alive or does she have anyone else living there with her? Do you want to stay married to him? If not, you should talk to an attorney and see what divorcing him would involve considering his illness.

My guess is that his mother is going to be overwhelmed as the disease progresses and may rethink her commitment to caring for him.

Dio

I'll be blunt. If you are already at wits end, it's only going to get worse. I second Quilting brings calm's post. But if I were in your shoes, the practical side of me will holler, "Run! Take your situation as a gift, an opportunity to get out while you can." And as QBC said, you can still be in his life and may even help him on the sideline. But you won't have the legal ramifications that will drain your funds nor the grueling 24/7 caregiving responsibilities.

Phoenix1966

You’ve received some excellent advice. I will add one thing to consider.

You mention that he has an official diagnosis of dementia. If he is driving himself to his family and elsewhere and is involved in an accident, he (and you as his spouse/caretaker aware of his condition) could be sued and lose everything. I’m not going to touch on how someone else might be injured or lose their life.

Definitely reach out and get legal options for yourself before something happens.

SSHarkey

I think everyone here has said it all. The answer really boils down to what you can live with. Where will you find the most peace and the least guilt. There will be grief, regardless. That won’t change. But what choice can you live with in the future when it’s all hitting the fan?

Joe C.

In your post you mention addiction, but not whether it was you, him or both. If you struggled with addiction you MUST consider what would happen if you picked up again. Even in the best of situations, this is a long, lonely and emotionally painful journey. You MUST put your health and recovery first or you’ll never make it. Being an addict/alcoholic myself I know how challenging it’s been to maintain my recovery while being a caregiver and in my case, I had a very supportive system of family & friends. If it ever came down to my recovery or my marriage, I’d choose recovery because if I picked up again I would be useless as a caregiver & a spouse.

harshedbuzz

@hendersontracy12

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

This is a difficult situation all around and it is not going to get easier. There are some aspects of the presentation of dementia in some PWD that could pose a unique risk to a person in recovery— the executive function and short-term memory losses and well as a tendency to kind of time travel to the thinking of an earlier version of themselves.

If you have substance use history, you have to weigh whether his choices could impact your recovery.

You don't sound happy nor in a very long-term commitment compared to some. My mom felt very like you do; their marriage was one of ups and downs but in the past 20+ years it had been in a less happy phase. My sister, who was dad's favorite died as an IV drug user with AIDS which destroyed him. He started drinking heavily and developed and ARD (and ALZ) which resulted in his already difficult personality taking a turn for the worse. Much of her unhappiness in the relationship was related to the early behavioral symptoms of his dementias before he was even diagnosed— lack of empathy, apathy, irritability, poor executive function and the inability to be a full partner.

Once he was diagnosed in the middle stages, we went to a CELA to get the necessary paperwork done with divorce on the table. It is an option even in dementia. There's would have been a 50/50 split once lawyer fees were paid and she would have lost the option to be his advocate (which bothered her more than the money) so she decided not to proceed figuring she'd outlive him, get credit for honoring her vows and walk away with more money than if she'd divorced. As an only, I would have been sole guardian and heir. Her gamble paid off and, more importantly, in time she came to understand dementia better and lost a lot of the anger she harbored. Her situation was different, it was a 60-year marriage and dad was in his 80s. I think if she were still working, she might have made a different choice.

Whatever you choose, I would make sure the documents are in place legally to make decisions and manage assets. You don't want to get into a contest for control with his family especially if they can't see through his confabulations.

HB

Denise1847

You have been given some excellent advice. I would just like to emphasize that this disease will absorb your life and its misery feels like there is no end. Run, don't walk to your nearest off ramp. Otherwise, it appears that your struggles will be exacerbated by the "mom situation." You are young and I would assume need to work. You still have a life to live. Don't let inappropriate guilt pull you into a no-win black hole.

r0527

https://alzconnected.org/discussion/68968/marriage

my heart breaks for you, I’m sorry if I do not have any advice other than it is okay to put your needs first sometimes. This horrible disease affects all parties, do not give yourself the short end of the stick. Sending so many prayers your way.