For those who care for someone with Parkinson's disease
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By cmonge On 2013.07.27 12:59
I have been ravished with guilt and anxiety this week. I have made time to see old friends and be out of the house as much as possible, mainly because I am so depressed there! My husband is just not the person I married any more. I keep hearing that I am mean (does that sound familiar?) and sometimes I feel that way but I have had to lay down the law lately, especially in the bedroom. I just can't relate to my spouse on that level anymore and it is so painful. He can barely move! Sorry if this is a sensitive topic. I am still young and feel like I've been cheated. But I know that it's harder for him although he seems so clueless at times at what I have gone through and still have to do to take care of him. Since he is not yet ready for home care or other options he just doesn't see that it is still work. Sorry I just needed to vent. Does anyone else feel the same?

By parkinit On 2013.07.27 18:40
We are in counseling for this issue - loss of intimacy in our marriage. It is not simply physical, but on an emotional level as well. I think we shouldn't give up, but it is difficult.

By carman96 On 2013.07.27 19:54
Yes this is a sensitive subject. It's not easy to feel sexy when you just changed his poopy diaper.
My husband still wants sex even though things don't work quite right anymore. Worse is that he doesn't even remember it the next day!
So I do use the excuse that I am too tired a lot but I really am exhausted most of the time.
I still love my husband with all my heart but it isn't easy with the dementia and everything else that's going on with him.

By carman96 On 2013.07.27 19:57
Counseling wouldn't work for us because he wouldn't remember much about it the next day.

By lilflower On 2013.07.27 20:16
We try to be open about things and it helps each of us to understand what the other is going thru. No its not always easy and yes I sometimes wish things were different but" it is what it is " a phrase I used to despise but now have grown to use it myself. I am also young 59 I never feel cheated what I feel is we were cheated. When we first heard Parkinson's we both looked at each other at that moment I knew we would always be together. He was 49 when that word became a part of our lives, we were told he had it for at least 10 years , so that meant we had already handled all the changes he had been going through and didn't understand why Now at least we had a reason and we could learn and understand together. He is 63 now and each year gets harder but in some ways we become stronger. Maybe its our faith in prayer. We aren't church people but we have always had prayer in our lives together without it I don't know how I'd feel.

By lilflower On 2013.07.27 20:24
There are times I don't feel sexy ,like after changing sheets in the middle of the night and giving a sponge bath and taking a quick shower so I could try to get a few more hours of sleep in. And I am exhausted and he is ready for love , I snuggle up under his arm with my head on his chest, lay my hand on his junk, I feel his love and he feels mine and we sleep peacefully for a few more hours.

By cmonge On 2013.07.28 11:32
Counseling has not helped because he does not remember and does not follow through on suggestions. I wish we could just lie together without it having to lead to sex but there seems to be no middle ground for him. I am ready to jsut pull the plug and be blunt even though it might be hurtful. My therapist says I still need to keep my sanity in this mess. It doesn't mean I don't love him, but our relationship has just changed. Thanks everyone.

By carman96 On 2013.07.28 13:22
I pretty much feel the same way. So you are not alone.

By cmonge On 2013.07.28 23:12
Thanks, that makes me feel so much better.

By Trusting On 2013.07.28 23:43
It is very hard for me to fulfill his sexual needs too. It's just that one day I feel like I'm taking care of a child and the next day he's my husband again. If I open up and communicate these things to him (how I feel) he feels guilty and then gives hints that he will never be a burden to his family, meaning he will end it all. So now I don't communicate everything to him.
I understand that he feels he is losing control of everything that was dear to him and he still has the need to feel like a man, but this is all hard. I love my husband very much and would never intentionally hurt him but as I tell him, "This is a road that I (we) have never traveled so we both are taking it one day at a time". I'm thankful we can share our feelings here on this site. It helps!

By parkinit On 2013.07.30 19:16
I wonder about the counseling. I called the counselor after our first session because for my spouse, it was about me initiating taking away his driver's license (which happened 5 years ago!), plus a list of other grievances he has against me personally. I felt that this was not productive. I feel the outcome he wants out of this is more sex. I don't feel the same - I agree, it should be more snuggle time perhaps, but sex is a bygone world in our lives. The target in this counseling session will ever be changing as the disease changes, so I'm not sure how much it will help.

Anyone else who has had counseling care to weigh in?

By Jane On 2013.07.31 11:50
My PWP and I went to couples counseling for a while. My PWP used the sessions to complain about my brining men into the house during the evening (on going hallucinations) and the counselor kept telling me that if I could change my attitude and not take his accusations and demands personally I would feel better. I found it a waste of my prescious time.

By cmonge On 2013.08.01 09:50
It's nice to know that I am the only one who found therapy a waste of time (at least couple's therapy). I think the big problem is there are not a lot of therapists who are familiar with PD. Even our therapist admitted she wasn't. Last night we had a discussion about how he is in denial about his disease. He said I was being "Miss Doomsday" when all I want him to do is face the reality of what is going to happen and make some plans and decisions. I guess I will just have to do them myself and be "the mean one."

By Jane On 2013.08.01 11:24
I too am called Miss Doomsday because I just can't always go along with his denial. I want to respect his way of dealing with having this horendous disease but at times I just can't keep my mouth shut. For two years he had talked to his doctor about swimming laps daily and riding a bike. I finally had to say to him in front of his doctor that those activities just haven't happened. At times like this he tells me that I can never see the positive and that I pick on him. With his denial he wants to go places with me which end up in his needing my constant help and then our having to leave early becuase of his condition. The next day he will say what a great time we had. To protect him I agree, but am thinking I had a horrible time. When I see my individual therpaist which is extremely helpful for me I scream out my reality.

By cmonge On 2013.08.02 10:15
I totally hear you. My husband want to to on a Mediterrean cruise and I am refusing because I know I will have a horrible time taking care of him and he won't be able to handle it. I like just doing Hawaii-non-stop flight, one island and relaxing for me. Also, he always wants to come with me to events, then complains, wants to leave early, and it's all about him and I end up having a crappy time. Thank God for my therapist. She said I just have to put my foot down. I figure at this point the worst thing that can happen is he can divorce me if he doesn't like it. I would never leave him, but I simply am refusing to put up with the behavior any longer.

By seawench On 2013.08.02 14:42
Every year we go to a Wooden Boat Festival. It's a 7 hour drive and a 1hour ferry boat ride. It has become a reunion for all of our boat friends from Ca, Wa, Or & Canada. We also have some great friends who travel with us. They have been doing this for several years and while they have become a part of the Boat friends group they are Bob's entourage and are great with allowing me to be able to cope with him and enjoy the festival.

This year we have rented a cottage and have permission from the owners to have a musical jam session with the Chanty men who come to the festival. We will be celebrating our 35th annv and I hope to provide this awesome evening of music for him one last time as he is declining such that I don't know if he'll be able to go next year.

If you can find folks who are willing and able to travel with you it sure lightens the load and helps you to be able to enjoy it. Otherwise it is just a grind for us caretakers. But I would still do it even if for all the effort there is just one tiny "Moment" that I can Cherish. We once towed our 33ft trailerable sailboat 2800 miles (round trip) for what turned out to be a 3 hour sail. but we don't regret it.


By parkinit On 2013.08.03 12:18
Cmonge and Jane - I can totally relate. Sometimes it seems our beloved PWPs lose touch with reality (and I believe this is a true assessment). My spouse asked to go play miniature golf a few nights ago because he was feeling pretty good at the time. I gently said, "But dear, we haven't played golf in a long time and they are not wheelchair accessible." He then went on to state we would just quit if he couldn't make it any more. What I'm thinking is: then I have to find a bench to let him rest on while I try to figure out a way to maneuver his powerchair (which he is in 99% of the time) close enough and around other players to get to him.

I don't think they realize. I've gotten to where I don't ask him to go to the store and we've stopped going to any events because he doesn't realize his own boundaries and I'm exhausted.

By carman96 On 2013.08.03 19:00
Seawench I think it is wonderful that you can go, have fun and have help there! Sounds like fun.
I avoid going to many things because it is so difficult. If he decides he doesn't want to be there he starts complaining about his back, etc.
After all the work of getting him and his wheelchair in and out of the car or his walker if it is not far to walk, He can't stay very long before he gets tired so what's the point?
We did go to a big rummage sale this morning but our friend went and dealt with my husband and the wheelchair. It was so crowded and not set up for wheelchairs so we only stayed less than an hour. I did manage to grab a few clothes for myself at $1.00 each, but didn't really get the chance to look at much else.
He thinks that he can just get out and start walking, but he can't so we have to grab him before he falls. Poor guy he wants to do things but forgets he can't do a lot of things he used to do.

By dkleinert On 2013.08.03 19:14
Trusting, Parkinit, Jane Cmonge - I live the same life. My husband thinks he can do anything....however, as you say, the end result is that he forgets we did it and I have had an awful time when I am already exhausted to start with. We sometimes go to movies, but even then, walking up any flight of stairs is almost impossible and the lower seats are way too close to the screen for me. I have been saving for a big screen tv so we can rent movies and watch them (and Netflix/Redbox) at home. It used to be our thing to go to movies - we were real movie he can watch the same one over and over and not remember he saw it.
As far as sexual intimacy is concerned, I know he had PD when I met him at age 38. We have been married almost 32 years now, and I am 65 and he is 72. Since almost the first year after his diagnosis, he told me he just didn't think about sex anymore and didn't miss it. I was crushed and angry for several years at the beginning when it came to sex. He had been an ardent and sensitive lover, and for this to take such a sudden change was a shock to me. Then as the incontinence issues became part of our life, and his need for me to shower him, one of the biggest adjustments has been for me to not think or look at him as a man - my man - my lover. His physical appearance has changed sooo much, and he is no longer the viral man I was attracted to all those years ago, however, when I give him a shower or have to touch him intimately to help him with things, it is something I just grit my teeth and go ahead with - he does not seem to notice.

I have written before about miss sleeping with him, feeling his arms around me, his wanting me, the intimate, unspoken "conversations" we used to have......this, along with the mental decline, are worse, I think for me, than the physical issues.

You are not alone all of you who struggle with this.....most of us are living with this every minute of everyday. No doctor or book anywhere than I can find talks about all of these issues in any candid way....

By seawench On 2013.08.03 20:46
Carman96 - I know. There have been other outings that don't go so well. I remember one that my mom and dad went with us, but between my hubby and my mom we lasted about a half hour. This was after a lot of logistics and scheduling to make it happen, They had come for the weekend just for this quilt show. She couldn't walk (overweight, out of shape diabetic) and he passed out in his scooter. Dad and I just packed them up ad went home - Oh well, we tried.

By carman96 On 2013.08.04 08:46
It's not that I don't want sex at all with my husband but that he can't quite finish the job if you know what I mean. So he wants to keep trying long past the point of it being fun for me. Then the next day he is back to his sexual harrassment of me. He already forgot we spent the afternoon in bed the day before. Then he complains about me never wanting sex! So he never stops asking or grabbing for me, to the point almost that I'm afraid he will do that in public. I think it is harassment but of course he doesn't realize it. I can't really blame it on the mirapex because he's pretty much always been this way! Except now he has no filter.

By cmonge On 2013.08.05 10:32
That is exactly what happens to me. The therapist explained that because they can't "finish the job" it leaves them unsatisfied so they have to keep trying until they do. Unfortunately that just doesn't happen very often. I am just sick of it and ready to call it a day. Plus, I am sorry to say, with the disease, it just isn't the same as it used to be. I think the cognitive impairment that comes with PD is part of the reason they don't get what this does to us.

By phoenix On 2013.08.07 00:59
So glad we are actually talking about this. Like several others, I have absolutely no desire after changing diapers and answering absurd accusations all day long, plus my PWP has told me that it is my duty to take care of his needs, so he expects me to do all the work with no return, if you know what I mean. so glad I can vent here and know I'm not alone

By cmonge On 2013.08.09 10:41
It is a huge issue, I think more so for women. Add pre-menapause and my own anti-depressants to the mix and the desire is gone. I hate what this disease does to us and the people we love. And I am so glad to have a place where I can discuss this because it lets me know I'm not crazy, mean, or alone.

By Sheridan On 2013.08.09 11:07
I have been following this post with much interest because I thought I was the only one who felt like this! I have been told by my PDer that I am unusual and that there must be something wrong with me. I am sure that having breast cancer at 42 followed by Chemo and radiation treatment which put me into abrupt menopause did not help. That along with no estrogen for 15 years and no possibility of relief along those lines killed my libido. I know for sure that the dopomine dysregulation crisis along with the accompaning emotional abuse put a big kabosh on my feelings toward my spouse also. (a year later as things return to normal so does our relationship. I love my husband dearly (36 years this month!) That said along with caregiving and sleep issues and working long hours I no longer have the energy or interest in sex and that makes me feel guilty and bad for my spouse.
Yikes I don't post here much but when I do it just seems to spill out. Because I come to this site daily I feel like I know you all and I really take comfort in your posts. Thank you for being out there....

By parkinit On 2013.08.09 11:57
Oh, cmonge. I'm so glad you said "mean." I was told last week I am "mean." I'm the last person that wants to be considered "mean," so this really hurt coming from my spouse who I help transfer, cook home-cooked meals for, help potty and wipe him, doctor his jock itch, fungal toe nails and sometimes his diaper rashed bottom, handle all the household items and appointments, and basically wait on hand and foot (and he is very demanding).

For example, I was doing dishes this morning and he said, "Can you get me some orange juice?" I said, "I'm almost done, I'll get it when I finish doing these dishes." He couldn't wait, so he jammed into our galley kitchen behind me, trapped me (and our dog) in the corner (I'm claustrophobic), couldn't get into the refrigerator because he was blocking the door, etc. Yep, I did lose it a bit. I said, "I'm now done with the dishes and you are so impatient that you can't wait 2 minutes to get orange juice and cause all this chaos?"

I get very frustrated with no value for me or my time. I've told him several times, " Come here," could mean an emergency or I need something in a few minutes and he shouldn't expect me to drop everything I'm doing and run every time he says my name. Occasionally, now, he does say, "Come when you can," which helps very much!

Does anyone else have this issue with impatience (that could be PD related)?

With all that said, it is hard to feel that connection that we once had when you begin to feel resentful, which is where I'm at right now.

By cmonge On 2013.08.12 09:23
Oh I am "mean" all the time! And I am getting quite resentful. Fortunately I have this forum and my therapist. Yesterday was very frustrating as my husband had an "accident" in the bathroom. He cleaned most if it up but I had to go in and clean the floor and what he didn't see or get and it was disgusting. I felt sad and angry at the same time. I wasn't angry at him, just at the situation-and what is frustrating is they don't realize what they are doing to us. How can you feel sexy after cleaning up a mess like that?!

By ysracer On 2013.08.22 15:13
Although it seems this is mostly a gals forum, at least most if not all the posts are from gals. I have experienced allot of these issues. As far as being "mean" or as with Jane, going somewhere, leaving early and regretting going. At least that's how I read it. Not so much the sex. that is pretty non-existent.
But I am always being accused of being mean, or lying, or un-caring.
We went to a therapist yesterday and the topic became how I always lie, because my wife saw a text on my phone from an old friend that I did no tell her about. It became an embarrassing session to say the least. With her screaming, crying and in general being out of control. The therapist even had to ask if this happens often, to which I had to reply Yes. Then on the way home she was acting normal and begged to stop at the 99 cent store so she could pick up a couple frozen things for dinner. It was only going to take 5 minutes. Well 1/2 hour later after many people had come and gone with a few items, I finally went in to see if there was a problem. My wife was loading the cart with random junk and making a shopping spree out of it. Of course saying it would only be 5 minutes was not a lie in her mind. It's only a lie if I say (or don't say) something. When I said we should go, it's late and we need to get home to feed the animals, she just left the cart and walked out of the store to the car. Seems it was not really all that important to buy something for dinner after all. So now that's my fault for being mean. And to make me pay for it, she stays up all night with all the lights, fans, TV and air conditioning on to run up a big utility bill.

That's my rant. Welcome to my life.

By lurkingforacure On 2013.08.22 22:02
ysracer, I doubt your wife is deliberately staying up all night with the lights, etc. on to run up a big husband has been doing this for years and he turns the lights on because he can't safely walk in the dark, then either forgets to turn them off, or leaves them on so he can get back to bed without falling, tripping, etc.

I don't know how long your wife has had PD, but I don't think many with PD can be malicious like you think your wife was: I don't think they have the energy, physical or mental, to carry out a strategic and deliberate plan like that. My husband might have a mean thought, but he would be too tired and in too much pain to make it happen, lol.

I doubt your wife wants to be up all night: my husband would love to be able to sleep more than three hours at a time. He gets up because he's in pain, he has to pee, he just can't sleep, which is very common in PD. He cannot make himself sleep all night, not even close.

I could ask my husband to not turn on or leave lights on at night, but that would be asking him to risk tripping over something and/or falling, and I'll take the high utility bill (compared to the hospital bill if he were to fall, it's a cheap trade-off). Maybe if you consider your wife might be dealing with the same issues, it would help your frustration, just a thought.

By ysracer On 2013.08.23 11:28
You may be right about that.
It's probably just my frustrations manifesting into thinking it's her not the disease, doing this. I guess I would actually prefer it was her doing this. Because that's something that could be dealt with. If I remember it's the disease that makes me seem mean and I direct my anger to that, it may be better. But since it's not something that expressing any anger can remedy or change it is pointless. So I guess I just bottle it up inside and then rant every so often. It's hard because I can't talk to my wife about it. Any discussion only turns into an emotional roller coaster with the end result of me being the bad guy, and a few days of getting over it. I don't feel I have any friends I can talk to, as they do not understand what I deal with. They only see her when she is in a better mood, or condition. We plan it that way. At least I do. If they were to have to deal with the day to day of this disease I don't think we would see much of them at all. We have (had) friends with a place on the Colorado river that had invited us there for the weekend about four or five years ago. We had a pretty good time for the most part. But I regrettably said something that started one of my wife's PD emotional roller coasters and we have never been invited back. I learned from that, I have to be very careful what I say.
So that goes to my prior posting that I am "mean" or a "liar" when I don't say something. But I am just trying to keep the peace.
So I post here, rant, and get a dose of reality.

By cmonge On 2013.08.25 14:27
Well here we go again. My husband needs a med adjustment (he is bipolar as well) and I caught him buying random things on the internet. I told him I was going to make an appointment with the doctor and he refused saying his meds were fine and to stay out of his stuff. I told him I was going to stay at my moms until he did and he said fine. So the bag is packed and I am out the door. I am sorry to do this but if he can't be reasonable, then I need to protect my sanity.

By lurkingforacure On 2013.08.25 16:29
cmonge, be sure he can't run up a huge bill while you are gone...there are too many stories of that happening. I hope his credit card/bank account, etc. has a low limit, and he can't take out any loan or line of credit without your agreement, or you could be in for heaps of trouble. Before you take off, make sure the finances (and anything else!) are secure. I hope things settle down for you soon:)

By ysracer On 2013.08.26 11:03
cmonge, I can relate to this behavior. But fortunately my wife, PWP, does most of her binge buying at the 99 cent store.

Sure we end up with a lot of stuff that we have no need for. But she then manages to give it away, or it breaks and ends up in the trash. But at least it isn't breaking the bank. Since I cover all the bills and house expenses, she is limited to only spending her SS disability. It's basically her fun money, since she has no financial responsibility. If it wasn't that way we would be living on the street, surrounded with random piles of junk.
I was told Mirapex can bring on this type of behavior. Does your PWP take this?
Hope you can sort things out and not go broke in the process.

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