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Topic Separate Bedrooms / Separate Lives Go to previous topic Go to next topic Go to higher level

By dear On 2011.10.22 21:15 [Edit]
After much thought, I have come to the realization that separate bedrooms is necessary for me to get the sleep I need to be balanced and healthy.

Intimacy is almost completely gone; physically awkward and not very sensual. Holding one another would be a fine substitute but he doesn't enjoy that much either and often coughs in a screaming voice in my ear. I recoil and ask myself why I even try anymore.

Our relationship boils down to a promise and I think I would be happier considering him as a roommate (with challenges) as it is more realistic and less disappointing emotionally. I keep expecting him to engage as a husband, and I think I am grieving the loss of iy.

By LOHENGR1N On 2011.10.23 00:32
If I may interject a couple of thoughts? Not to this post specifically but it brought up some points that as I read them it might be well to address at this time before they slip away into that void of now what was I going to say. Many times We patients forego the meals and eat "finger food" it's easier to handle and We feel less self conscious if we fumble with them or drop them. (think getting a fork full of peas or corn up to your mouth with tremor going or dyskinesia jumping an arm around). Or getting a mouth full partway down to cough up the whole thing sending projectiles across the table at warp speed.

Leaving dishes may boil down to intending to do them later when feeling up to the task lest We drop and break things and get scolded for the damage or attempting to do something we thought we were capable of doing but at the time we weren't. Sometimes leaving till later might mean to Us after the next dosage kicks in I will do them. (this could be a couple of hours away but to You it is like we're ducking the job.) Then resentment builds as You'd rather just get them out of the way.

Intimacy almost gone sigh... Yes....Parkinson's Disease really robs Us in this both Patient and Caregiver/Partner. Awkward to say the least! As the disease progresses our trembling bodies, warped and in constant motion are out of our control most of the time. Making every intimate act almost like a first attempt. We try to wrap our arms around you and hug you but We feel our trembling and think how awful this must feel to You! The vibrating constriction, dare We draw closer to kiss? Will We head butt You? Will our lips part as our body betrays Us and lunges in clacking our teeth together? To many a Partner a hug might suffice to Patient it bares Us and any hiding of symptoms is exposed, We feel lacking and disgusting to Your touch. We do love You, we do miss those intimate times to, We just feel like the ugliest bugs at the ugly bug ball.

At times (many in fact) I try to give a look from inside this disease while I'm still able to articulate the view from in here. Some of this wasn't easy to reveal but it needs to be aired. Some early into this disease might pooh-pooh it. Some might not like it being brought to light. But communication is critical in this battle and if someone doesn't give this view how will anyone understand even just a little? I'm not saying every behavior is because of this. Some might just be a stopped caring or depression issue but there are reasons for some acts if one looks closely and considers contributing factors.

This isn't easy for anyone involved and it seems to go from bad to worse as time goes on and Parkinson's progresses. Anyhow, that's My view from inside. Believe Me or not there is wisdom in these views, I hope they help sort out some of what might be going on with some things. Remember to be nice to each other! Take care, best of luck and hang in there.

By karolinakitty On 2011.10.23 10:35
If I too may interject her Al and dear.....
I disagree with you Al that intimacy is gone. Intimacy is there, you just have to work with what you got...if you get an elbow in the eye, kiss it back....caress that arm with bump heads, kiss his forehead, lovingly, tenderly touch his hair or his scalp.....I drop my caregiver gloves at the foot of the bed, or sofa, or shop door, or boat trailer.....if I want or if he wants the big "sex" caregiver gloves come off...
I think we don't bring up this subject enough, because most of us are spiritual and talking sex in a public forum is extremely hard.....but i think some things need to be said and am willing to bust the norm....
God, whoever yours is, created sex between man and woman, he was the maker, not just for reproduction but for intimacy sake. If it was just for reproduction there wouldn't be man and wife...Man could go with any woman not just one close companion. In order to keep the companionship alive for many years you need intimacy. Intimacy isn't's's's caring in a different is not a is a want....that said.. i will get blunt...
Parkinson's and intimacy can co-exist....
As I said..I drop my caregiver gloves at the door, i check them in the coat room and they don't exist until I decide again. Just watching my guy have his tremors and muscle spasm's makes me want to hug his body, and even though I know it doesn't stop the tremors, it's a desire. Caressing and touching him all over IS a form of intimacy....Maybe, the organ doesn't work all the time, but you can enjoy intimacy without ejaculation and intercourse. I'm 53 and going through menopause, I'm not supposed to enjoy sex according to the rules, but i do. BUT, i enjoy intimacy much more. No, I can't stop the tremors and the jerky movements, NO, I can't swing from the trapeze in our bedroom anymore or do all of the kama sutra, my body doesn't move like it used to, i have horrible mood swings and can be cold one minute and hot the back has always had issues and i can lay in only so many positions....that didn't nor does it stop us from enjoying the intimacy of partnership. Sometimes it frustrating, to get the right thing going but when you find it...A woman at my age can have a problem with dryness, there are more things on the market today to aid you in that I can't even begin to list them. Use them. Vibrators or "boy toys" in most cases are thought to be taboo and only used by a woman in total secrecy...well Ladies...get them out of your hidden drawer and ask your partner to assist you...yes i said I was being blunt....and actually...I threw mine away just recently because he got too old being non-active. You have a built in vibrator in your man now...the tremors can work to your advantage...
I know that love is still there, but I think we all need to work on the intimacy part. I know it's hard when you are changing diapers and cleaning floors....switch things up a takes a little bit of effort on our parts and a little more understanding that the sex isn't what it was, but it can be even more exciting when brought in different fashion. forget bedtime sex...try morning intimacy...start your day with loving each other, before you even get out of bed...he has an issue getting out of bed and getting to the bathroom...keep a portable urinal beside the bed, let him do his thing, drop it in the bathroom for later cleaning...grab a washcloth, nice and warm and soapy...wash him off with love and gentleness, caress him..again..start your day with goes a long way for the rest of the day...
How about afternoon? You need to assist in giving a too can turn intimate if you look at it as not a chore.
We have a hard job as a caregiver.... but we need to drop the giver gloves and turn on the driver once in a while........

Understanding Parkinson's and knowing that what happens can turn a relationship to pot, is so hard to bear. However, if you make a few adjustments..if you pick your battles rather than letting everything get under your can be in a better place....

I now call my guy, "pigpen", from the comic Peanuts...ya know... the kid that sheds dirt off from him all the time...Because our grass is so dry, from clings to him like a magnet, then when he comes in from sheds all over my I can't expect him to wipe his feet..he could balance and fall down..not I pick my battle...I could yell at him and say Look what you did to my floor OR I can make fun of it and call him Pigpen with love...and make it a family joke....Gee.... Yell or laugh????? I'd rather laugh.....Am I insulting him... nope....he loves me .. he knows me...he knows i could get mad and yell, but, instead, i choose to laugh it off.... When he comes to bed at 1-2-3am and clunks around and drops things, leaves his clothes lay on the floor because he can't bend over, and wakes me up, should I get mad....I can't... if i were alone, by myself....i could climb into bed and sleep 8 hours straight.. but I am partner has a disease that won't let him sleep normally...that won't let him take off his clothes like a normal person...that won't let him lie in bed like a normal person.... he drools all night... when he can he gets into REM sleep and then we have talking and movement issues.... do I throw him out of my bed because of these things... sorry.... I can't do it... I am a full time caregiver....I don't work outside the home.... If i can I will take a nap when I know he's at a good time in the day... I know there are issues he can't do anything about...
As a woman caregiver... I also need to be a wife and lover.....we have to blend them accordingly and switch roles when necessary....
Just my cents worth....

By karolinakitty On 2011.10.23 15:44
you didn't have to delete some of your have the right to vent...this is the place for it... as I have the right to voice my cents worth...many here feel the same as you do.....I have a different perspective..I am in a different are in a different place....that's what makes this forum so open.... Some can't be as blunt as me....I just lay it out there....

I don't want to offend but open up a different arena....coming from my point of view....sometimes another perspective helps with someone else's issues...we are all not the same..if we were it would be a boring world we live in......

By packerman On 2011.10.24 11:09
your intimacy experiences are similar to ours. it just takes patience sometimes.
thank you for sharing.

By sunshine On 2011.10.25 21:55
I can relate to each of your views and I have a little insight from my experience with my hubby that I would like to share.
We now have twin beds. We sleep in the same room and I think that this came about, as yourself Dear, I/we needed a good nights sleep to be able to cope in a better frame of mind during the day. I was very depleted as my husband thrashed in his sleep and often punched me. We were both on guard throughout the night, me grabbing his arms if he grunted, and he waking up, worrying about his flailing. Now this being said, since we now have separate beds it is reeeeeeealy hard to snuggle in a twin bed. I would encourage you Dear to always keep a larger bed as you may at some time in the future, like myself, miss the closeness of cuddling with your man.
We have gone for counselling and made some huge strides in the communication with each other and it opened our intimacy level immensely AND I actually felt my feelings returning for closeness physically. Without good communication though the intimacy level plummets for a woman and for me sex becomes just that. Just sex and it is not really that pleasant when you don't share throughout the day. Hence the choice to forego the frustration. I hope I am making sense here. I wish there was something that could help my husband to understand that our relationship should be priority and have him give me the same respect he portrays to others be it friends or family. I think that we as caregivers to our hubbys actually make a choice in life to be here for them and ourselves and sometimes a tiny bit of appreciation would be soooo nice and sooo welcome. Instead of wearing the brunt of the frustrations in whichever way they choose to manifest it. Hurtful is the only word I can find to describe this troublesome behaviour and honestly I do not feel that it is right to say that you hurt the one you love. Especially if that someone loves you with all their heart and always tries their best to give you what you need on this journey to make your life easier and positive.
I believe that the hardest hurdle for us has been for my hubby to understand that the Parkinsons also impacts my life with him. I would just love it if he could support me and acknowledge me in a positive way for being here. And give a positive impression to the outside world instead of using me as a scapegoat for his frustrations.

By packerman On 2011.10.26 10:13
a Retrouvaille weekend helped us immensely in the area of communication.
i highly recommend it. you can find info at

By sunshine On 2011.10.29 00:58
Dear Karolinakitty
I have read your post a few times now and each time I get something from it. Your words are wise and I would like to thank you for being so open here. It is hard to talk about the sex issues openly and you have done this for all of us. Thank you. :0)

By sunshine On 2011.10.29 10:47
Thank you also for the info. I chk'd the website and found a town where the course is offered, near our hometown. Definitely going to look into it. Availability in 2012 which really helps with the planning too. A good possibility we will be able to attend one. :)

By cmonge On 2011.11.20 23:57
I am a little late responding to this-I found it as I was scrolling through the topics. My husband and I have the same problems, he has become impotent from the PD and no pills have helped. We are young-I'm 46 and he's 54 and quite frankly, I miss it. I thought the intimacy would be enough and I wouldn't but I do. That being said, I love my husband and still enjoy being with him. I know eventually we will probably have to have separate beds/rooms just as his PD progresses but I don't think we are ready for that. We both see counselors and I vent my frustrations there and even occasionally take them out on him. But that is part of marriage overall. Sometimes we have to give up things for the one we love. I'm not sure if I will always feel this way but for right now I've just accepted that this is how my life has to be. I don't think I'm settling because I am married to a wonderful man who loves me.

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