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Our marriage hasn't been good for decades. I can't say I didn't love my husband at one time because I did but that was decades ago. He was controlling, mentally abusive and cold back then.


When my husband was diagnosed with dementia in 2017 I wanted to keep him home with me to care for him. However he's been so mean, sarcastic and hurtful. He's just plain nasty. He's always been a very cold person. He drives everyone that loves me away. If I take a walk he questions me where I've been. His dementia started in 2013 but has progressed. When I ask whether he loves me or not he says yes. I feel nothing. Out of respect for the 50 years together I wanted to make sure he's taken care of with respect and love, hopefully under my watch. It's getting impossible.


He's 79 and I'm 68. He's been professionally diagnosed by a neurologist. He is on meds. He no longer showers, changes his clothes, has delusions, and is paranoid. He now is lying as well. He refuses to acknowledge he has dementia, rather he says he had a stroke which is true. He had 2 mini strokes. I literally am alone with him 24/7. I wait on him hand and foot.


I'm tired, feel unloved, used and abused. I'm done. I want to find some happiness before I die. I've never seen anything like my situation on this site. Is there anyone else out there in my situation? Am I a monster? Can I still care for him even though I want my freedom? Help me please.

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First, sending you a big hug. Per your profile you are also caring for your brother as well...wow you are carrying an immense load. I think you have hit the wall with caregiver burnout. I have some questions and the answers would be helpful for the community to know:
How often do you get breaks?
Is your financial situation reasonable?
Is James in your home, too? If not, how are you caring for him?
Do you have any other younger relatives local to you?
Blessings to you.
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yatzeedog123 Sep 2019
Thank you for taking the time and for your concern. My brother lives by himself but I'm a phone call away. We live about 5 minutes a part. I don't have many breaks but I try to get out twice a week for an hour. Finances thank god are fine. Unfortunately my husband's family is either in a nursing home or have passed away. My only living relative is my brother Jim. My husband was very difficult to live with before the disease. Now its almost unbearable. I don't know where to turn first.
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So very sorry. So awful for you. The truth is that your question--not your exact situation--but very similar ones have been on the forum and are currently.
I think even for those with loving relationships, when something like dementia comes the person is often transformed, and while still looking like the person they love is in fact not the person they loved anymore. They lose someone who is still living.
In your own case you were hanging in there with someone who you were already growing apart from. You are still very young. I would concentrate on making your own remaining years decent quality time.
Does your husband have any family? If so I would have a conference with as many willing to attend and tell them pretty much what you said here, and that you want only a fair and equitable division of your assets.
As to HOW all this works now, if you are unable to go on, to insure your husband is safe, and gets care or wellness checks, I wouldn't even know where to start. Perhaps with a visit to his MD if he has had one long term. I hope others have a clue where you might begin. I am certain you have been thinking about this for some time. It is a very hard decision.
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yatzeedog123 Sep 2019
We have an appointment with his MD and I'm asking about wellness checkups. I've also been given contacts to seek out home care, Hope I'm now on the right track
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So sorry for your situation. As already said, there are many cases similar, but not exact to yours. Many people are caring for people they have less than ideal relationships with, prior to the dementia taking hold. Many people are not very nice and are very difficult to care for. Many caregivers, like you, are suffering from burnout.

I strongly suggest that you change your situation as far as being alone with him 24/7, waiting on him hand and foot. NO. You need regular breaks.

Since your husband has been diagnosed by a neurologist, it does not matter if he agrees with the diagnosis or not. It is likely, at least in my opinion, that he is unable to understand or remember the exact situation. That's OK. It is what it is.

Please find some people who can come in to your home and stay with hubby so you can go out on your own and do something for yourself. Go for a walk, a drive, out to lunch, etc. Anything, just out of the house, not being a caregiver.

You might also consider if he needs to be in assisted living or depending on his condition, a nursing home. This is a reasonable option, especially when the person with dementia needs more care than the caregiver is able to provide. It's not an easy "job" and is often very thankless.

Good luck!
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It sounds like the carer relationship is at serious risk of breaking down, and so is your marriage.

So, you have two issues to deal with.

I have a question for you to consider: do you think if care obligations were alleviated by say, placing him in care permanently, that you would consider staying in the marriage?, or, do you feel the marriage has absolutely no chance of staying intact even if you didn't need to lift a finger for him?

So, if you feel like you could potentially find a way to stay in the marriage if your carer burden was reduced signifcantly - I would look into those options. You need to look for options, now, anyway - because you are behaving like a machine working 24/7, but you are not a machine, you are a person with needs and your needs are being neglected. You will break down. You have already broken down....

So, both relationships, caring and marriage seem to be in really bad shape.

When I was reading your story, I wondered whether some of his personality issues predate his brain injury - and you've been been absorbing quite a lot of neglect and abuse for a long time? I wondered whether this factors into your state of mind - perhaps it's not just the caring and the abuse in the present time?? Some people who have had very good positive memories keep them going... if the memories of the past are not positive, it makes it doubly hard to find something to hang on for......

Your last sentence, can I still care for him and have freedom? Only if you put significant care arrangements in place very very soon, and you are able to get away completely from the caring role several hours a day. Or, several weeks a year in a residential care facility so you have regular, long, proper breaks to recharge and restore.

Ahead of you are worse troubles... It only gets worse. No sleep is a big potentiality if he is awake at night... Lots more things can happen so you need to act now.

So, again you do need to move quickly with the little energy you have left I think getting him into the "system" by organising residential respite (while you take a trip away), or a care assessment will start the ball rolling so you are starting to make links with professionals in the aged care and social work system who will help you. You need to start the ball rolling, even if you don't have a particular direction in mind. I think JUST GETTING STARTED will be a big help to you.

Good luck.
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yatzeedog123 Sep 2019
You are right. His personality issues predate his brain injury and I've been absorbing quite a lot of neglect and abuse from him for a long time. This absolutely factors into my state of mind. I don't know where to start in getting him into the system. Do I go to office for the aging? or do I start with his MD? I need direction.
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Given you have had a very difficult time with him for much longer that the current caring role, some supportive counselling to help you strengthen yourself as a separate person and away from the abuse would be so great for you as well. Someone posted Co-dependency Anonymous website which is very helpful. There are articles on this website also about how to access services. MD would be a great start too. When you speak to the MD tell him/her that the caring r'ship has broken down due to long term unrealistic caring burden on you involving difficult and abusive behaviors, and you need direction to services or options because you cannot continue in the caring role as it is. Don't delay.
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Talk to his doctors about care options and extricate yourself from the care as much as possible.

Explore with lawyers whether a divorce might be advisable to preeerve your retirement assets.

Many are in this situation, few are brave enough to admit it.
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yatzeedog123 Sep 2019
It was probably the hardest thing to come to terms with the reality of my situation. I have been given some wonderful advice and contacts. Divorce would be messy because of assets. If I can provide him with good care and keep myself sane that would be perfect.
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I don’t know your financial resources or if you have a support system at all, but if there is any way you can put him in a memory care or assisted living home, that might be your solution. He would be well cared for and you can have some peace. After you have some respite, you might feel inclined to visit him regularly or you may not. No judgement. Maybe a counselor could help you sort through your feelings and your options. I’m sorry you have to deal with this.
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yatzeedog123 Sep 2019
Thank you for your thoughts. Hopefully I will draw on all the wonderful advice and get myself settled as well as my husband.
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Agree with those suggesting that you look into outsourcing your husband's care as much as possible. I admire you for wanting to see that he receives proper care.

I would think that a divorce or legal separation would require your husband to have an agent of some kind. Is a person diagnosed with dementia able to direct an attorney to act in his interest? It seems to me that any legal division of property would be expensive and complicated because the courts would want someone to act on your husband's behalf.

I'm very sorry that things are what they are. Many hugs to you...
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yatzeedog123 Sep 2019
Thank you for your kindness. I think a divorce would be very difficult and I really don't want that. I want to provide good care for my husband and try and save myself. The outpouring of support brings a tear to my eye.
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Start by calling Agency on Aging, if he’s a Veteran, call the VA and apply for the Pension, it includes a lot of home health care options. What do you enjoy doing? I like to play pool, so I joined a league on Sunday afternoons and Im gone from noon til 5pm. I feed him before I leave and let the kids know Im poolin and they check in on him and usually fix Sunday dinner so I dont have to cook when I get home. Get a life alert bracelet, mine wears one every time I leave the house. You do not have to sacrifice your life for his! Start living again and you’ll find a way to have your freedom and keep him safe too. Taking care of him doesnt mean waiting on him hand and foot 24/7, thats crazy!! (((HUGS)))
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yatzeedog123 Sep 2019
Thank you for your support. I thought my honest statement would get me more angry responses but not one. All positive and love.
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Here is the website for the Hamilton/Warren County Area Agency on Aging:

https://www.warrencountyny.gov/ofa/contact.php

The phone number for Hamilton County is 1(888) 553-4994. Office hours are listed as 8 AM to 4 PM.
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yatzeedog123 Sep 2019
OMG thank you so much for this information. I'll get right on it.
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He is holding you hostage, and has for awhile.  Think about placing him in a facility, NH or MC.  Meanwhile, search this site for others as well.  HUGS!  You are not a monster.
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Thank you for the info and mostly your support
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It would probably be a good idea to see a lawyer now. If you don’t want a divorce, it would be best if you could have a Power of Attorney, and also make sure that wills are up-to-date for both you and your husband. If your husband is paranoid and won’t agree, a trust might be more palatable. You aren’t concerned at the moment about finances, but advice could be a good investment. You haven’t given information about family, and unfortunately problems can come out of the woodwork when it becomes clear that the marriage isn’t going too well. Many women have had to cope with husband or father getting tied up with a younger female scammer, and money can disappear only too easily. If you spend less time with your husband (with luck because you have organised another care option), he may feel bitter, and that is fertile ground for other relatives to step in. I don’t want to be depressing, but this is a difficult situation which could get to be a nightmare if all the worst things happen. Protect yourself before you make changes that could trigger worse problems. You have wanted him to be taken care of – take care of yourself first.
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I suggest that you see a good lawyer that specializes in elder law. You need to deal with financial issues and care issues. If you can deal with staying in the marriage, but not necessarily living with him 24/7, that would help prevent the possibility of him finding another person who might complicate the finances as well as the care situation.
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Plenty of good suggestions here. I’m concerned for your safety, living in the same house. You are already at risk emotionally; you may be at even greater risk. I think you should find a way to live SEPARATELY, while
giving some care alongside trained professionals. You MUST take care of yourself first. Best of luck...
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it is only going to get worse. Just wait until you have to change his diapers and induce bowel movements because he forgot how to bear down. The most humane thing you can do for him in my opinion considering how you feel about him--put him in a nursing home; if he is not on Medicaid, get him on it. It does not sound like he can manage on his own at all. See an eldercare attorney about that; you may have to see another lawyer for divorce. See the eldercare attorney first and go from there.

Another alternative is put in him psychiatric care -- if you feel he is a danger to himself or others you can get him Baker Acted and they could put rearrange his medications. There is a possible chance his behavior may alter for the better. I said a chance. No guarantees. The biggest plus are SOCIAL WORKERS in the hospital.
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I read through this entire conversation and agree with the other respondents. You are not a monster at all. You sound like a decent human being trapped in a bad situation. Your situation is also a wake-up call for all of us in bad relationships. For many reasons, we stay in bad marriages, take less than we deserve and then after all of this, the spouse gets sick and then we’re stuck in yet another bad situation. To all women in bad marriages, figure out how to get out when you can. Once your husbands get sick, you won’t be able to leave because the guilt will drive you crazy, you’ll feel the whole world is judging you, etc. Please talk to an attorney, inquire about legal separation and division of assets and how best to leave the marital home after you set up a care plan for your husband. Build a better life for yourself...you’re only 68 with a lot more life to live. All the best and let us know how you are doing.
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See an elder lawyer and a family lawyer - you probably won't find one that does both.

I don't think you should care for your husband at home anymore. It is not about your physical ability to care; its about your mental and emotional health in caring for a very abusive personality. With dementia, the paranoia gets worse and the "social filters" on speech are removed. If he is so verbally negative, it may be hard to find home health aides to care for him in the home and give you a break. The verbal abuse will not go away but only get worse. It seems he needs care in either an assisted living facility or memory care unit. Both are rather expensive, but medicare and medicaid might help pay for them. Ask the elder lawyer about this.

Ask both lawyers what would happen to your husband should you divorce him and take half the assets from your marriage. - that is all you can expect financially. If you leave the marriage, you also do not have the right to decide on his care. Do you have children from this marriage that can assume responsibility for decisions on their dad's care? They should be brought in on the discussions of his care as well - if you decide to leave. If not, he will probably have a legal guardian appointed if you divorce and this person will decide on his care.
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What a sad and difficult situation. Hired help or placement in a facility sound like your best options. You don't need a divorce, but you need a separate life.
You would probably be happier if your husband were not in the house at all, but I don't know if you can force placement in a facility. If you hired home care, you would still be subjected to your husband's unpleasantness when you were home.
Do you have the resources to rent an apartment for one of you so you didn't have to share the living space? Would your husband's personality run off a lot of hired care givers?
You have shared a desperation felt by many. Good for you for initiating the conversation.
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I am so sorry. I have no advice. I just want to say that you deserve to be happy.
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just this week, I felt exactly the same. After long discussions with my children - I feel-with help-I can continue -- I can't just throw 62 years away! If my kids lived closer, it would be easier. Our neurologist ordered home health care & it helps him some.....but I am still overwhelmed. I am fortunate in that he is a small man, so I can still help him with showers, etc. I have decided to find someone to come in to stay with him so I can get out. For now, at least once a week for 4 hours. Later, more. He will complain & say I am abandoning him and he doesn't want a babysitter, etc. etc. I MuST not pay attention to that. We are burying ourselves for our husband's sake - we must stop!
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Pollieb Sep 2019
I do agree-I’ve hired Visiting Angels here in Mn & the 4 hours they’re here have helped me.
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In many ways i am in the same situation.
The very worst thing is his being nasty
if he was like this before the dementia will only make it worse. I finally TOLD my doctor that I wanted to put him on an antipsychotic med. he did and immediately things got better. It is still a lot of work and very lonely but his temperament is good. A lot of doctors will say these meds could cause problems but I believe in quality of life
both his and mine are much better now
blessings to you
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Teresa914 Sep 2019
My mom was so hateful and nasty even at one facility she was in and they put her on seraquel. It helped a lot but this last time she went into a nursing home someone took her off of it without me knowing which pissed me off. I contacted her hospice nurse and she got my mom back on seraquel. I could tell she was off of it because she was being hateful and telling me to get the hell out of her room.
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I’m in a very similar situation. It had been coming on him quite a while but I didn't realize it, and the money went because of his very bad decisions. So there is no money for help and I still work hard and of course making almost any amount of money disqualifies him for mediCal. Divorce is something I am looking into - its the only way to make him indigent enough. The system needs to be fixed. I am 65 and he’s 88, and I get so little time to work and get away.
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Delberte Sep 2019
So true! Lawyer wants 15 grand to get on medicaid, whose got that kind of money? If I had that I wouldn't need to go on Medicaid!
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You are not a monster. You are probably burnt out or heading that way which is not good for your mental and physical health. An Aging Life Care Manager can assist. Find one at aginglifecare.org. Less than a lawyer. Are all high level healthcare professionals.
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There are many more here who have shared information on the legal side of your moral dilemma.  My advice is on the other side - if you do not take care of yourself, he will outlive you.  He has no stress, and you bear more stress and grief for both of you!  Your ability to carve out a piece of living for yourself is imperative for you to continue even in a healthy relationship - and is much more important in this quagmire.  You need more time - and not less time - to replenish yourself.  Take all the advice here. 
If he is able to leave the house, adult day care could be considered as a start.  
Prayers to you for finding relief and comfort.
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This is my wife:
I have been caring for her since 2006. 13 years. I am 68 now.
There are resources, depending on your state program.

https://www.youtube.com/watch?v=8q0V7xuz1f0
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jacobsonbob Sep 2019
Good video; thanks!
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That sounds exactly like Lewy Body Dementia. My husband was diagnosed at age 52 with Parkinson's. But actually, he was showing signs of dementia before that. His dementia is exactly like what you have described, and was diagnosed with Lewy Body before he went into a nursing home 4 years ago. I am just slightly younger than you - 66, and I work full time. I was so depressed back then, I couldn't imagine how I would get through life. You need help, just like I did. And sadly, there is no help for caregivers. Please reach out to local support groups, because one suggestion can make a big difference. I visit my husband every night after work to help feed him. He is no nicer now than he was 4 years ago because he hates being in a nursing home. But, for my sanity alone, I am so thankful for the people that help care for him in the nursing home. Please don't let your situation continue. I will pray for you! Carla
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It is hard. There is a lot of good advice here.I would second talking to an attorney. You want to make sure you have control.

My mother would not sign anything so I am stuck with a lot of no-win situations and siblings on my back.

As for divorce, again a lawyer can guide you. But, if you can, try getting an aide in for a few hours. Being able to leave the house and knowing he is ok might help. Some agencies send aides who can do some light housework.

As others have said, a divorce leaves him free to remarry, and that person might suck him dry. After your experience, you deserve some comfort.

It is a hard road. Good luck.
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You are much younger woman than him. You can get him into ALF? Do you have adult children who can help? No, you’re not a monster & you don’t deserve to be abused. Can you please get respite care for yourself? You are not responsible for him anymore. Your health is at risk. Don’t kill your self over him. Please get help. You may have to get him to ER & tell them you are not his caregiver & he has nobody to care for him. Also contact VA if he’s a Veteran. He could get into VA home or provide Home Health Aides for Home. But you really need 24/7 care for him.
Hugs 🤗 hugs 🤗 hugs 🤗
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I don't think you are a monster at all. I don't know what you can do but search around here and google what you can do to break free of caring for this person and keeping your finances in good shape.
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