For those who care for someone with Parkinson's disease
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By sesrohseinop On 2015.11.12 00:38
How are the caregivers handling the issue of sex. I personally don't feel attracted to my pwpd. He smells different, shrinkage issues, erection problems. Is this too blunt of a question?

By Trusting On 2015.11.12 01:15
Same problem at my house. You aren't alone. I still give him hugs of love but not anything else. I even find that when we try to kiss his lips seem to have gotten mushy, like no muscle at all. Anyone else?

By mylove On 2015.11.14 08:03
I'm going to jump in here with some frank talk. Anyone who is offended can take it or leave it.

Part A is this. My husband isn't to the stage many of you are discussing. However, because that's the case we have been discussing how we want to handle things in the future when he needs more care. He wants to hire a caregiver. I wanted to be able to provide that role for him as his wife. I also see a counselor, which I find useful for helping with the grief of the progression, and I highly recommend for anyone who can manage it. Her take surprised me. She agreed with my husband. She said having that other person to fill some of the daily care duties was critical in preserving the spousal relationship, and for those front line caregivers, many can't separate their view of their spouse as a patient when it comes to their spousal relationship. It's a point of view shift in the lens that we view them through and becomes more like parent-child, which can irreparably damage the marital closeness. She warned me strongly to fight off that shift in any way possible. I think it helps to keep that in mind. I have often thought - How awful must it be for our husbands that on top of the insults that they are forced to cope with in their own bodies, but to have that intimacy taken away from them as well?

Part B - we are now approaching the top limit of the Sinemet, and for the past year have been observing (and coping with) the gradual onset of some autonomic dysfunction. It's a big picture of small crappy things that make life generally miserable (so far) but one of the symptoms is some ED - specifically getting there, and staying there. We have had to come to accept the fact that he's not able to stay that way long enough to get the job done occasionally but we work around it. We don't make a big deal about the times it doesn't work. Sometimes we laugh it off and come back to the situation later that day or the next when meds are working better. Other times we find ways to get to the destination via alternate roads. What's more valuable is that we preserve that closeness....we touch often, we snuggle in ways that are comfortable, we stay connected, even if that's sending a loving message from one room to the next. It's my plan to maintain this pattern even when things get worse. I still view him as my lover, my friend, my husband, and I feel like that's the key. Sex has become more secondary than it was early in our relationship, but still a very precious, very close occasion. Hang onto that if you can.

I can give several tips to those that are only coping with ED, but it sounds more like both of you are grieving that changed relationship. I would encourage you to to what you can to try to get back anything that cements your relationship as a couple, rather than caregiver/patient. It's good for both of you. I wish you much love and compassion - it's such a tough road we all travel.

By carman96 On 2015.11.14 10:00
My husband still wants sex. Sometimes we try, but he can't finish. He still likes to try. He bugs me all the time.
I try to accommodate him occasionally. I still love him but it's difficult for me. I have to do all the work, it hurts, he wants to keep trying even though I've tried everything to help him.
Then by the next day he's forgotten and accuses me of not having sex with him for weeks.
I am exhausted trying to take care of him. He needs help with everything. He pees the bed, he pees his pants, he won't wear diapers. I have to help him on and off the toilet many times a day and night. He gets more pee on the floor than in the toilet. I have to change sheets when I should be sleeping. I am constantly doing wash.
He wants to take his clothes off sometimes for no reason. He takes them off but then I have to help him dress. Sometimes he does this several times in a row.
He falls a lot and doesn't listen to me about how to safely do things. Then gets mad when I repeat it.
I am beyond burnt out. I occasionally hire caregivers but usually to do errands. It's all there when I get back.
The last thing on my mind is sex. He gets mad about it. I feel guilty and mad.
I try to still give him hugs and kisses when I can. But it's not easy.

By VioletV On 2015.11.14 16:46

I have to say that my experience is closer to yours. I love the idea of a continuing sexual relationship in theory, but having done every toileting thing imaginable, and brushed his teeth for him (if he will let me) and spoon fed him his dinner, and gotten up four or five or six times in one night to help him move his arms and legs, and reassured him that I won't go away, and reminded him of my name and our relationship it's pretty hard to get myself warmed up for lovemaking. He can't really do much of anything, and I would have to do acrobatics that would challenge a much younger woman to make it all work.

I'm lucky that my husband now willingly wears a pad. But a couple of years ago he would have wet pants every evening.

I would say to you to cherish every bit of connection and intimacy that you can.

In four years I think back to one memorable embrace. One. It lasted about 2 seconds. It felt like I was in the arms of a man who loved me. It's hard to sustain yourself on so little.

A couple of years ago we had visitors, old old friends I've known since I was 17. As they were about to say goodbye the husband hugged me. A real connected hug, not a child-like 'hold me and reassure me' hug. I broke down in tears, surprising myself. And, I'm tearing up writing this.

I'll say it again. . . rotten rotten disease.

By mylove On 2015.11.14 20:31
Here's a virtual one. Definitely not the same, but from the heart nonetheless. ((((((Hug))))))

It's a rotten, dirty thief, this disease. Here we are all hanging on by our fingernails, wondering what shoe drops next.

By sosad25 On 2015.11.15 16:45
I understand each of your posts and totally understand how you feel. It has been over 7 years since we have been intimate. I am only 62 and he is 67. It is very sad and hurts to think that the whole intimate part of your being and relationship is over. And I totally understand Carmen's thoughts on how after you have and continue to do many unpleasant things for your spouse that sex is the last thing on your mind. And Violet yes it is a ROTTEN ROTTEN disease.

By olpilot On 2015.11.17 01:07
I realize how difficult this is for everyone involved, I have read on this subject a great deal. I am the pwp and my wife is my care giver however I can still do most things myself. The problem for me and sex is a simple one. Concentration, all the ED meds in the world will not help if during that special time your mind goes to some crazy song you heard during the day, or wonders of God who knows where. That is my problem, I can't stay focused on anything for very long. Some of you will remember me from posts awhile back about wood working, I had to give that up when I found myself using power tools and realizing I wasn't paying attention. Now we are traveling across country in a motor home and I find I can't just enjoy the scenery I ave to stay very focused on the road, the traffic, and just drive. I think it is the same with sex, but for some reason all it takes is a momentary lapse in though and it is gone, and trying to get it back is nearly impossible.

I Love my wife and this is something that hurts a great deal. I'm only 64 and way to young for this to be lost. My wife is 55, very appealing, but my brain will not cooperate. We have decided to make the best of it and do what we can. I still have a very strong desire to try but don't know what more to do. I remember as a young man to delay you would try to think of something else for a bit, now if only I wouldn't.

By sesrohseinop On 2015.11.19 22:14
Thank you everyone for your experiences. And thank you Pilot for you helping us to understand how the person with PD feels. Men don't usually want to discuss their performance problems.

By carman96 On 2015.11.19 22:31
Hi Steve, thanks for sharing. It helps to have a male PWP's perspective.
Glad to hear you are still traveling with your RV. Keep on truckin' olpilot!

By jcoff012 On 2015.11.20 17:57
I haven't posted on this subject because I am battling with myself over Parkinson's problems and *my* problems lately. It seems related somehow, although I know I have an easier time of it.

So, here goes...I see this as a problem not only related to PD, but as one of an aging relationship and it focuses on the underlying feelings within that relationship. After my health issues these last months, I had neither the stamina nor desire for an active sex life. My husband recognized this, but would rub my back and shoulders, and hug me constantly. We laughed and talked all the time and even discussed how the new meds were dragging me down. We agreed to talk to my primary care and my new cardiologist, who were compassionate and offered several suggestions. With patience and love, we finally are more active. Finally. I tell you all of this, because what I can attest to is the fact that I now understand in some small way, what the frustration is like from both sides. And, I only can hope that when the time comes, I will be able to be as patient and loving as my Carl was with me.

Maybe we are unique, in that we married at 18, some 48 years ago, so we have been through the passion of two teenagers in lust, the parents of four children, been through the death of our oldest daughter, cancer in my son and myself, and so much more...Again, not to focus on the bad, because all marriages face troubles, but to try to suggest that because we have been through so much, PD is not as overwhelming to us as it is to many. Don't get me wrong. I hate PD. I hate what it is doing to my husband's mind and body. What I don't hate is him. He is a victim here. The victim of a menace called Parkinson's. He did not ask for this, but has accepted it with dignity and grace. At times he rages against it and becomes unbearably angry. But, wouldn't any of us?

Like Michelle said, we often have to be creative. Sometimes, it seems almost as if we will never reach the end. But, at all times, I know I love him and he me, so it becomes less important to do so, and more important to see what we can manage to make each other happy.

Again, maybe we come from a different view point, but I think it is so important to put the other person's feelings first both in life and definitely in the bedroom. I can be happy if he is happy. I know he loves me and would and will show me when he can. But, this man stood beside me all through first the loss of our daughter, then my cancer, and now my stroke. How can *I* not do the same for him.

For those who say that they find their PWP less than desirable, I would suggest that it might be time to vent to a neutral third party. I would find it unnervingly sad if I found out he felt that way about me after all of my trials. Coming here is one way to vent and it probably helps. Bur, how about sitting with your primary care or his neurologist? Carl's neurologist is always asking if we need any counseling or if we need to talk.

I am so very sorry that some of you are having a difficult time. I wish I could offer a cure, but then, I wish for ALL of us that we had a cure for PD, so that no one would have to have a difficult day with PD. Life is tough enough without PD issues. Bless you all for fighting on. Bless our PWP and thank you all for posting.

May there be a cure in our lifetime, so that we can all find peace and happiness.
Love, Jane

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