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.
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?
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.
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.
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.
Best wishes to you and your husband. Take care.
Do NOT feel 'ashamed' to speak to his neurologist about it! I guarantee you he's heard this MANY times before!
Good luck!
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.