I am at my wits end. My husband has ALS and dementia. He is 80. Our sex life ended many years ago. He has ED for many years. These last few months he is driving me crazy. He can't have an erection or reach climax. He can't open his hands. He sleeps with a ventilator. He keeps telling me he's "horney." I gave into him as much as I could. He of course had no satisfaction. I tried and tried. I figure maybe this would stop him. But after not even 5 minutes of course he forgot and started all over again. Please if anyone has been through this and has any ideas I would appreciate it. I feel ashamed to even explain to his neurologist.

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As DH’s [my husband’s] caregiver when I’m not at my (full-time job) workplace, I sought mental health counseling. Too many issues (his and mine) giving me problems, and I couldn’t stay “even” without meds and counseling. It was in one of those sessions that she searched online for “hyper-sexuality and PD.”

Then, she helped me find my voice to establish my boundaries. Also, I had to learn to defuse the anger and begging that resulted from him, when I declined to attend to his insistence. Then, we discussed it with his neurologist, and her response was to tell him he had two choices: 1) Reduce meds to reduce hyper-sexual tendencies, although his PD mobility would be worse with less meds. 2) Be more responsive and respectful about my preferences, by learning to use his cognitive awareness of how to improve the situation. DH chose Option 2.

My problem after 11 years of his worsening PD is the loss of interest I have for him lately, romantically and sexually. We continue to share intimacy regularly, although it’s lost a lot of its eager urgency and emotional spark. 30+ years of marriage are a great foundation for as many more years of sex as we are capable. However, I feel guilty that both of us know I don’t experience the full benefit of “being in love” with a partner like I did before, prior to the full evolution of our caregiver-patient relationship.

I would like to have a better understanding of how common is my experience, among other caregiver/spouse relationships similar to mine. How do I process the sadness I feel in my dilemmas about this situation?
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Reply to Educ8r

My husband has same problem. We have temporarily found that hugging with a soft cuddly blanket and saying sweet things assures him he is still loved. Sometimes I have to stop what I am doing and just go lie down with him. I'll also tell him endearing things we've spoken in private in the past . It has been six months so far and it is better.
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Reply to LNReason

I have faced this dilemma and one of my aides mentioned that because of the dementia he may be seeing himself as a young man and somehow desiring sex. I can empathize with your willingness to try to respond to him, and as an 87 year old wife, I sometimes actually enjoyed some intimacy; but neither he nor I are able to duplicate our earlier, younger love making. I was able to confide in my gerintoligist who was very sympathetic to my situation. He was willing to prescribe medication but I opted not to go that route (I don't really know what he had in mind.) I would like to mention that I was able to call the Alzheimer's Association ( found their number on line) where you can talk to a social worker 24/7 about any issue you have. She assured me that I had every right to resist sex, and that alone was very helpful. Also, you might ask whomever you talk to there about getting accepted into a weekly alzheimer phone group. I participated in such a group for about a year. GOOD LUCK!
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Reply to Trumpeter31
Blufftongal Mar 6, 2020
Thank you for this information. I will call the Alzheimer's association. That weekly phone group sounds good also.
Aalso, remember that any meds can attribute to side effects so I would much rather my Dad masterbate then yo take RX pills that can end up doing who knows what.
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Reply to bevthegreat
LoopyLoo Mar 4, 2020
Trust me...Talk to his doctor about this they have heard it all before. This is one of the symptoms of some dementia's to they are aware of it.
If you can not verbally tell the doctor see if there is a Patient Portal you can use to writ what is going on and they can read it before your next appointment and discuss it then.
There is nothing to be ashamed or embarrassed about.
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Reply to Grandma1954

My 95 year old Father with very very short term memory, like 5 minutes started fooling with himself a few months ago.
He lives at his own home with 24 7 Caregivers.
His main Caregiver which is a Nun keeps complaining to my Dad and me for him to stop masterbating because it is
a sin, or several other reasons she comes up with that makes no sense, plus trying to physically stop him. I spoke to my Dad's Nurse, Nurse Practitioner and Dr, plus pulled it up On Line and there is no concerns. He is basically chair and bed ridden except to go in his wheel chair to the bathroom or to the table for his meals.

You should just let him know it's OK to make himself feel good and leave it at that.

There's no reason to feel ashamed or guilty.

At this stage in life, do whatever makes you feel good and doesn't hurt yourself or anyone else.
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Reply to bevthegreat
Grandma1954 Mar 4, 2020
If the Nun can not handle this then you should replace her.
There is no way she or you can prevent your dad from doing what he is doing. And to try to get him to stop will just end up frustrating everyone.
Tell her/ask her to keep comments to herself when dealing with this, your dad is not going to understand what a "sin" is.
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Don’t be embarrassed to speak to the doctor. Tell him/her so you and your husband can be helped with this matter.

Best wishes to you and your husband. Take care.
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Reply to NeedHelpWithMom

Inappropriate Sexual Behavior or ISB is common with dementia & Alzheimer's. Even if his behavior isn't exactly 'inappropriate', it's obsessive and that constitutes inappropriate. There is medication for this exact problem, so please speak to your husband's doctor about the situation asap.

Do NOT feel 'ashamed' to speak to his neurologist about it! I guarantee you he's heard this MANY times before!

Good luck!
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Reply to lealonnie1

Ask his doctor about antiandrogens and other drugs with antiandrogenic activity.
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Reply to NYDaughterInLaw

Tough though it sounds degeneration of the brain can have this effect whether through dementia, tumour, or some other illness. It will pass, you just need to be patient like you are with any other phase.
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Reply to TaylorUK
Blufftongal Mar 4, 2020
Thank you for taking the time to answer my post. If I may, how did you know this is his problem?
I have read on another post a few months back that there may be medication to help him, but I'm not do ask.
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Reply to Geaton777

Don't be ashamed, do explain to his neurologist!

What I *expect* will happen (I can't know) is that the neurologist will explain in return which regions in his brain are currently being affected by his disease. It's possible the neurologist may even have an idea of how long you can expect this phase to last.

If trying to gratify your husband is making you wretched and not helping him, give yourself permission to stop. You can be loving and tender to him in other ways (including letting him enjoy "being horny" for its own sake, for example); plus no matter how loving and understanding you are, it sounds as though this is one miracle you can't work for him.

PS I forgot to say - I am almost certain that the neurologist will also tell you how many, many patients are struggling with this, and that you are most definitely not alone.
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Reply to Countrymouse

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