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Early onset Alzheimer's is the worst! I know a gal whose husband was diagnose at age 54, she had to place him in a locked unit at age 56, and he passed away at age 60. Certainly not what she expected when she got married. He was physically aggressive and wandered, she was also up all night. I do think that some patients, even older men and women become more interested in sex with dementia. I have seen it as a nurse, an 80yr old woman all of a sudden wants to be intimate and her 84yr old husband just can't do it. So then she accuses him of having an affair. Or "chasing" all the other women they know. What a tragedy. I totally agree with the advice to find a support group. Also get some respite care. If your insurance won't pay for someone to come in, try RSVP, they can "sit' with your husband for up to 4 hours a week for free. (they can play cards or something with him to keep him busy). Also, see if there's an adult day care in your area. He could go there once or twice a week. I had a caregiver who took her husband to adult day care every Monday morning and went home and slept. She said that she needed it to face the rest of the week. If you find a support group, the other members will be great resources for you to find help. Maybe a church member can sit with him, maybe someone from his previous work. So many people would like to help, but they don't know what they could do. Call and ask.
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ConfusedinTexas, your situation sounds horrible. Even though it's the disease causing him to be so abusive, it is abuse and you should definitely look out for yourself. He can't do it. You must. Do you have children you can turn to?

Others on this site know so much more about what social services might be available to you. They exist, so seek them out. Your husband's dementia and whether he can live by himself also needs to be addressed. Meds might help but he won't be the one to ask about them. One thing is certain, unless you take action, nothing will get done.
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ConfusedinTexas

Leave. There's help out there if you're having financial difficulty.
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my friend had the same problem with her husband. He had Lewy alz. The demands for sex were monumental for her... He also got progressively violent and almost killed her "in his sleep".
The stage does end,it is horrible to go through, and meds are the only way.
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My Husband has had alzhiemer's for about 8 or 9 years, at least he has been on Namenda and Aricept that long. He is 77, he had a penial implant when he was 70. which was paid for by Medicare. That is the worst thing that ever has happened to our marriage. He wants sex all the time and forgets about having it less than an hour afterward. I'm 65 and I never imagined these problems when we were married 36 years ago, I wasn't concerned about being his caregiver as he aged, but I didn't think about these problems and the abuse on my mind and body. I'm still with him now only because of our financial situation. He still drives and every time he gets angry he takes off in his pickup and gets lost for hours. I would appreciate any and all advise.
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Its been a few years since I first wrote this. I was at my wits end with him! This behavior has since left but others have appeared. I continue to care for him the best way I can. Still love him but in a different way. Medications helped tremendously! I seriously thought at one time he could kill me and not know he did it. He is way more manageable to care for now. Hope he would have cared for me if the roles were reversed.
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My husband is inappropriate with the people who come to help give him care. He sends me aswful emails and is a handful. 15 months ago he fell in love with one of the women who helps me care for him. It was a horrible, hurtful mess. That woman and I decided she could no longer stay for her safety. I have forgiven him, but I have no desire. The last time we had were intimate he said I hurt him. I never again want to be put in that awful position. I felt like I'd taken advantage of a willful child. I need to see if his neurologist is willing to add a drug to control his urges. Otherwise, I may have to put him in a memory care unit.
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Thanks for sharing Shepard48. My husband has toned down a notch or two on this subject and other behaviors have appeared. This site has been so much help to me emotionally.
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Yes, sadly, it is just the nature of the disease. Have you discussed this with his doctor?
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My 63 yr old husband has vascular dementia and every six months new symptoms appear. Even though he has Parkinson's and hypersensitivity (skin), he "badgers" me continuously about having sex. I have been holding down the fort for six years without a break. I loved him for 32 yrs. before the stroke but now I see a stranger that I do not want to "service". I tried the first two years in order to give him hope; he was not deteriorating then. After that he would scream that I was hurting him if I just touched his shoulder. When I try to describe previous attempts, he gets frustrated. His sexual comments to me about others are inappropriate and are escalating. I guess it is just the nature of the disease.
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Many aspects of caregiving are the same, no matter who you are caring for. The incontinence issue is similar whether you are hired to care for a stranger, are taking care of your second-cousin, or your loving mother, or your abusive father, or a spouse. But there are also significant differences in the losses we experience, and therefore in the experience we have.

This site is intended for people caring for elderly parents. I appreciate that. I feel that there is enough commonality for all of us to learn from each other and it is worthwhile for me to be here. But I also know that the spousal role different in many ways.

None of this, for anyone, is easy!
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Jeanne: Beautifully explained. So many losses to this disease. I so appreciate how you defined what parts of marriage you can hold onto and those that no longer fill the role of marriage. Bless you. Cattails
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jeanne, I knew it was your husband that you are caring for, but honestly never thought about the sex part of the marriage until upallnight mentioned it. It's hard enough dealing with dementia/alz as it is, but factor that in... jeesh. I'm sorry for all the husbands and wives who are taking care of a spouse with this awful disease. It must be awful to lose such an important part of a marriage, also to lose it at such an early age too. I guess a person doesn't really know what they're made of until true adversity hits them in the face. Kudos to you guys. Truly.
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In Pauline Boss's book "Loving Someone Who Has Dementia" she describes one client whose husband's sexual demands were very distressing to her. She learned to set boundaries and to care for her husband, not as her sexual partner, but as someone she loved dearly. To symbolize this to herself she took off her wedding ring (with tears and sadness). Later, when her husband died, she put the ring on again, because now she did feel like a widow, and not as a widow waiting to happen.

NancyH, the woman in this book said it was like having sex "with a stranger" and it didn't feel right to her. Sometimes my husband seems like my grandfather, and sometimes he is more like a young child. Neither of those images are appropriate sex partners. I have not and don't plan to take off my wedding ring, but it has been a long time since I have felt like a wife. I no longer have an equal partner. The fact that I at one time desired this man has nothing to do with the present situation. That part of our relationship is over.

Dr. Boss gets it, and her book is a great comfort and encouragement. She has a chapter about "good enough" relationships. Even if we once had a "perfect" relationship with our loved one (parent OR spouse) striving for that now is self-defeating. Getting to "good enough" is a reasonable goal.

Upallnight, I don't have a practical solution for you, but I understand your pain. Through no fault of yours (or his!) the husband/wife relationship you counted on and took vows about no longer exists. Love can still exist. Caring can still exist. "Until death parts us" devotion can still exist. But you will never again be his wife as you understood the term when you signed on for the role. We have social conventions and rituals to comfort widows (and widowers). Those of us experiencing more ambigous loss of our marriage can feel pretty isolated. My heart goes out to you.
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I recommend that all of you dealing with dementia of the Alzheimer's type find a local Alzheimer's caregiver support group and GO to the meetings. You will learn more about the disease, coping strategies, dealing with behaviors and how to take care of yourselves!! The more you know about the disease the better you will understand what your loved one is going through and why. Knowledge is power for caregivers. Contact the Alzheimer's Assn. that covers your area or your Area Agency on Aging and find a support group NOW. Everyone there will understand what you're going through and give you helpful advice.
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I understand, upallnight. You can only do so much. I hope I didn't come off as being insensitive to your feelings. Believe me I understand what it is like to deal with a sick person without rest. I am 34 and have been taking care of my husbands 86 yr old grandma who has Alzheimer's for the last 3.5 years without any help at all while homeschooling my two elementary aged kids. I went WAY TOO long without doing things for my self and reached a point of insanity myself. That was when my husband stepped in and arranged for respite care. We now leave her in respite care for 2 months every 5-6 months so that we can recharge as a family and it has helped a lot. It's expensive and I know everyone can't do it but family and friends and give temp. relief here and there so when they offer- take it. And if they don't ASK. I am praying that God will give you the strength to make it through day to day. Take breaks and walk away sometimes when you are able to get some outside help. As someone has already mentioned an exhausted and emotionally depleted caregiver can not be very effective. Please get others to step in and watch him while you do fun things for yourself once in a while (at least once a week or 2). Even if it is just taking a walk around the neighborhood. :)
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I forgot to mention his parents do understand my frustration in the matter. His talks with them on the phone seem to help at times. They can calm him down and help him to forget why he was mad in the first place. Thank Goodness!
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I have explained to my husband that his behavior scares me. I am 52 and have been to hell and back with him over the last few months. The reason I have him home now is that I do remember the great times and want to care for him. He has completely exhausted me emotionally. I have excused the verbal threats, accusations, physical threats and no sleep. For him to expect anything else from me would be asking too much right now. He has calmed down somewhat and am working with his several doctors right now. Everyone has been very helpful and Thank-you
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I agree with the above statement from jacobsonbob. Although, I am a fairly young married woman, I can also understand his frustration as I have had a pretty drought filled marriage thus far. Things are finally getting better, praise God, but it has been very very hard. For some people physical connection is their love language and from my experience people who have Alzheimer's or dementia seem to default to their humanistic instincts. It's almost like they go on survival mode. That is why they think people are cheating them out of their money, they become stingy, they lie and steel even (in some cases). It would only make sense to me that your husband is only defaulting to his human instincts in this way as a form to probably connect to you like he use to. I understand these are probably not the best conditions to be intimate with your sick spouse but I am wondering if this problem is somehow solved as stated above if the other things would get a bit easier for you. I know first hand that going without having sex for a long period of time can lead to bitterness, loneliness, frustration and insecurities. I imagine that these feelings can still come through for them in moments of lucidness. What I have learned so far is that this disease already causes it own amount of these feelings now imagine if the life and relationship you knew with your spouse is now completely different and you can't figure out why. It can be very confusing, sad and depressing. I guess, when it comes down to it these people were our spouses that we made vows to and that we made love to regularly. Trying to once in a while help them solve this problem might benefit the both of you or at the very least let each other know that you care and loved each other enough to at least try. If you spouse happens to be so completely out of touch to know that you are trying to be helpful in this manner than rest assure that God sees and know all.
I wish you the best in whatever you decide. I know it must not be easy.
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Without being overly graphic, is there some way the husband can be provided some physical relief, such as a "massage" by his wife or at least some encouragement to do it himself? Although I'm a few years older than 56, I can understand his frustration. Maybe a doctor or counselor could suggest some options, which may also serve to make him easier to get along with because he'll get some "relief".
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upallnight, you said your husband will call his aged parents, if they are of sound mind, have you talked to them about their son? I'm just wondering if they had any wisdom about this. I feel terrible that such a young guy can have this disease. It's bad enough having it at 80 years old, but 56? I myself have a healthy husband of 61 who has an equally healthy libido. But I can't imagine what it's like to live with someone whose sex drive is at full steam because of this disease, coupled with how it would be normally? Wow. Having to fend off someone like that on a regular basis, I think would be both exhausting and guilt ridden at the same time. There must be medication he can take to dampen the urgency he feels all the time right? But, this is also a man who you used to love and desire I'm assuming. So is this something that you don't have to ALWAYS say 'no' to? Can you dig down deep and remember what it was like before the disease hit his brain, and say 'yes' sometimes? If it's not something that you can ever do again, and he's becoming a danger to himself and you, then it's time he found a place to stay that can care for him. I'm really sorry about your husband having to go thru this so young. I'm sure this is NOT how he thought his life would turn out either. In that regard, you're both in the same boat.
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Ok...seriously. Read the comments here. Living through it myself I know they ALL ring true. People are hurting and suffering out here because of AD...and its not just the patients...its the rest of us too (sometimes MORE). SOMETHING has to be done to provide relief...we all can't go on like this.
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I agree with Dirk, above. Welcome to the frustrating, sad and eye-opening world of Alzheimer's & dementia. Dealt with it with my 84 year old mother. She had early dementia. While not as bad as a lot of the excruciating stories I read on this site, it was bad enough to drive my father to anger, hitting her to "shut her up", and saying that he no longer loved her. I think he also made some decisions for her care that were more in his best interests than hers. He could never, no matter how many times or ways it was explained, understand what was going on with her. Nor, IMO, did he want to know. He wrote it off as stubborness and that she was doing the things that aggrivated him, on purpose. For those of you here entering this complex world for the firs time, please know, they are not aware of their bad behavior, nor are they doing it intentionally. They can become another unknown person, with a strange persona.

My advise...if your loved one has not seen a doctor and gotten the advise of a professional, you should do that immediately. There are various meds that can help tremendously in some cases, or at least reduce the bad behavior, in other cases. Then, depending on how the meds work, prepare yourself for a bumpy ride. Dementia & Alzheimer's are progressive and debilitating diseases...they are only going to get worse. And your circumstances will only get worse too. So, it's time to start considering another facility, another place for them to live and be cared for. Investigate in home care or assisted living or Alzheimer's units in nursing homes where personnel have received special training to deal with such patients. You need to consider your welfare as well.

Don't be afraid to seek-out advise, especially from the loved ones' doctor. Read information about the disease so you won't be surprised or caught off guard. Many articles can be found on this site. Prepare yourself, especially mentally, for what's coming! Try to get away to relax and calm yourself frequently, so that you don't lose control or do something you'll regret later. Know this...you will have tough decisions to make. Probably the toughest you have ever had to consider. You will go through a range of emotions, including anger and guilt. That is normal.
The best advise I can give you is to inform and prepare yourself. I wish you and your loved one and family...patience and peace.
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Caregivers face many different difficulties and sharing experiences is helpful for all. I don't have suggestions for the problem under discussion, but it is helpful to be aware of it. Thank you. Sometimes it helps me to remember than an exhausted caregiver is an ineffective caregiver. It is not selfish for the caregiver to take time to look after themself, it is essential.

All the best
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My father is acting in this way too, sexually inapproppriate, angry, paranoid, convinced my mother and his children are stealing all his money. My mother stays with him. Sometimes, when he is not angry, he seems devoted to her. Someone told me it was common for men of his generation to resent their wives. We a;so worked hard to bring him home from a nursing home where he was held in a locked ward. We don't want him to go back there. I fear his frugality and paranoia about spending money would not let him be comfortable in assisted living. Would they put up with angry abusive outbursts there. I do not know. It helps to hear these problems exist for others. Thanks for sharing your experiences
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Well ladies, I have to say how much I appreciate you talking about this issue. I don't have the problems you have. My husband is fine, but I've had the care of my parents for 7 years. So I can't say I share your issues.

Still, I admire you greatly for bringing this up because I think others will benefit from the discussion. You may get other comments.

May I just say that I have been on this sight for close to a year and I have read that Ativan can have adverse affects on those with dementia. Star, check and see if there isn't something else he can take. Paxil is a good antidepressant that also addresses anxiety. I don't know why Ativan can cause problems with those with dementia, but I have heard others comment on it more than a few times. Do some research.

Upallnight: If your husband's doc can't come up with some meds to calm your husband down, I think you need to seriously consider other living accommodations. Does your husband go to an MD...primary care physician for his treatment? If so, you should get him an appointment with a geriatric doc and, if need be, from there to a specialist in ALZ.

My heart goes out to both of you. Sending you both love and encouragement. Don't forget that you need to look out for yourselves too. Hugs, Cattails
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I really do admire you for trying to handle this, especially since you are still working. 56 is really young. My husband is 81, I'm 70. I don't understand where some of the freaky ideas come from and they really are convinced that it's a fact. My husband takes ativan twice daily which I believe helps the anxiety; but he still gets incredibly upset. I think the aricept slows down the progression of the dementia. Just so sad that there is really not much that can be done and it gets worse, not better. Good luck to you. Hope you can find some way to get some rest and peace!
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I called the 911 the first time because he was acting too weird and they sent a ambulance. The hospital transferred him to a temporary place for dementia patience's. He came back home for about a week and had to go back. The second time the police came. They were so professional and nice to me. My husband at the time were telling the police and anyone else that my our son and I were having sex (yuk) My husband kept calling 911 from the hospital to have me arrested. The stories go on and on. The seroquel seems to be helping some. My husband is just 56. They suggested to put him into a nursing home but I brought him home. I would just hope he would fight for me if the roles were reversed. I want to care for him but he may not let me. I still work too. I am exhausted!!!
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I know exactly how you feel. It's a little easier since he's in AL, but the fear of the money not lasting keeps me awake at night and upset all day. Yes, I also understand the divorce remarks. He says I'm the most important person to him and then he talks about divorce. I wonder if they even remember the remarks they make. I don't understand their demands for sex. It has to be all in the head, I don't think they would be capable of it if they tried. I'm so sorry you have to deal with this, I was thinking I was the only one with that particular problem. It's interesting that your husband talked to your parents about the topic; my parents are gone, but he called a close friend of mine and complained to her about this. It's so hard to try to explain anything to them; they truly do not get it! It must be terrible to have dementia.....they think they are normal, although the nurse at AL today told me she thinks it's much harder on me than it is on him. I haven't been feeling well lately, whenever he makes all these demands on me I feel a flaming roller coaster in my stomach!! Have you ever considered AL? It's such a big decision, not to mention a big expense, but everyone.....docs, nurse, therapists, social workers, friends, family....except his family of course, told me if he came home I would be sick and it would destroy me....I'm feeling rather sick now. Just wish I had an answer for you. What do you mean by hauled off, did you have to call the police, I've been advised by the doctor and AL that is he gives me serious problems when I take him somewhere that that is what I should do and apparently it's happens frequently with dementia patients. Thanks for contacting me, it's good to have someone to talk to who understands the problems.
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No My husband is still home and does not think anything is wrong with him. He stays upset and confused most of the time. I reject him multiple times a day. He used to throw tantrums but had to be hauled off twice. I fought to bring him home but now do not know if I can handle him. He gets so mad that I am afraid to go back to sleep sometimes. We have a grown son that lives with us (thank God) I would not feel safe alone with him. He has made sexually comments outloud around our grown children. He will call his elderly parents to "tell on me" for not wanting sex with him. He talks about it with my grown daughter. I am at the end of my rope with him!!! I want to care for him and hope he would have done the same with me but know I wonder. I do not have POA over him. His disability goes into our account and I pay the bills. He wants a divorcell the time but in the same breath will tell me how much he loves me. UGG!! I was just wandering if others are going threw the same situation and how they handle the sex thing.
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