We're in the process of having my husband tested for early onset Alzheimer's, which I am sure will be positive. Our marriage of 15 years has been unhappy for the most part, and the past few years of his decline are making me feel like I'm headed for a nervous breakdown. We're in our very early 40s and have two young children who are picking up on the stress, and having significant psychological problems... and are in therapy. I dread coming home and feel terrified anytime my kids are alone with my husband. He has a bad temper and a tendency to break things when angry, and the kids are afraid to ride with him. He's a big muscular guy. He's not been able to hold down a job for three years and we're facing foreclosure. I've liquidated every asset and there's nothing left. Here's what I want: I want him to live somewhere else and be divorced. However, I would be glad to oversee his care, paperwork, appointments, etc, and would be fine to visit him somewhere regularly with kindness and compassion, but I absolutely don't feel comfortable with him at home and feel I could cope much better as a mother, full time breadwinner and human being with him out of my living quarters. But.... if he's in the mild dementia stage at this point (my suspicion), or MCI, is he already eligible for care like assisted living? He'd be homeless otherwise and obviously that's not an option. Everything I've read makes it sound like the spouse is pretty much obligated to quit working and go broke, let kids and self fall by the wayside as you care for the spouse who has not treated me well for several years. Maybe I seem selfish, but I need to be honest with myself and get real, plus protect my children. Anyone in the same boat or done the same? I have no one to talk to or understand.
Each state laws are different. Some say once diagnosed you can't divorce, but I think that is mainly because they figure the spouse will take everything leaving the dementia spouse destitute. Sounds like you are already there - the destitute part.
Your best direction would be to consult an attorney. They should know the law in this case and your choices. Also, you would not be the first to divorce. There have been a few in our group that ended up divorcing often it was their husband, the one with dementia, that wanted it. When marriages are not good to begin with caregiving is hard. You have young children to consider and I would put them first. I strongly encourage you to consult an attorney.
As for still being his caregiver, that would then be the courts decision if you divorce. Someone either a family member or someone else would have to be appointed as his guardian.
Hi 1stressedlady. Welcome to the group no one wants to join.
I don’t think you’re being selfish at all and it sounds like separate living arrangements are called for. I don’t know how to make that happen with you in your 40s though.
A diagnosis should help. Assisted living with memory care can be very expensive. You said he hasn’t been able to hold down a job so I’m guessing no long term care insurance. With a diagnosis you could pursue social security disability.
You need to develop a safety plan for you and the kids and make sure you have the phone number for Adult Protective Services. If it is Alzheimer’s, or FTD, or MCI, he can go into a rage and not be able to control it. Then 15 minutes later will not know what he did. There are medications to help control the rages. You need a psychiatrist with dementia experience. They can be hard to find.
This website has been around for quite some time and we have a lovely group of people who support each other. But new people don’t seem to stay here since our boards are sometimes quiet these days. You can find quite a bit of info by searching these discussions. I did that when I started. I “lurked” for a long time because the people here were so far ahead of me it was scary. But with searching I found answers to a lot of my questions. Then, later, when my husband was raging and I was trying to stay safe, these people here helped me through many a difficult time. (The asterisk by my name means my spouse is deceased.) My husband died suddenly last August. Like a number of the members here I keep coming back because even with my spouse gone, I don’t really belong to the outside world yet. Here has become home for me.
You are certainly welcome to join us any time. Say or ask anything. You won’t find any judgement here. But I sincerely recommend that you go, right away, to www.alzconnected.org. Click on Caregivers forum. At Caregivers forum, click on Message Boards along the top. Find the group for spouses. There you will find a great many people to help you. There are many threads for spouses with early onset and young kids at home. You really need to talk to them.
Make sure to get into the spouse group. It will be a complete waste of time in the generic caregivers forum with all the people caring for parents. That is NOT the same thing at all!!!
There is a lawyer there called Crushed. He will give you some legal tips. You need a lawyer. Ask a question over there about how to go about finding the right one for your situation. Crushed understands a lot about Medicaid. When you go on there, and especially when you ask that question, be sure to tell what state or country you live in.
Contact your county Office on Aging. (It might be called something different.) Even though you’re in your 40s they may be able to give you some referrals. They should have a list of lawyers with the kind of expertise you need. They have social workers there. Ask for an appointment to meet with one of them.
Based on your husbands age and symptoms I suspect he has FTD. Get the book What if it isn’t Alzheimer’s. I also recommend seeing a neurologist at a university hospital with a specialty in dementia. Many neurologists wouldn’t recognize dementia if it hit them on the side of the head, especially if it isn’t Alz.
An eldercare attorney might be your best bet. They have expertise in dealing with dementia and Medicaid.
Listen to your instincts. If you are afraid of him and afraid for you children you need to act. One difficult item involves him being legally competent. The bar for competency is often low and can prevent you from having him committed. Discuss with a lawyer the implications of calling 911 if he is a threat to your or your children and make sure they know how to call 911. My son called 911 twice on my wife and it got the ball rolling but was also expensive (legal fees).
Another group you need to join is www.ftdsupportforum.com. paulc and I are both members there and take turns recommending it. There are definitely people who have gone through a version of what you are facing who can give you support.