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Topic I can' take this anymore Go to previous topic Go to next topic Go to higher level

By parkinit On 2011.01.09 20:09
My spouse is walking around, almost falling, banging into things and has almost fallen 4-5 times. I keep telling him to sit down. I lost it, I told him he doesn't care if he falls because he knows I'll be here to take him to the ER if he falls.

I also confronted him about his porn addiction. He turned it around and blamed it on me because I've lost the desire to have sex with him (we've had this discussions and the whys, but one good reason is that he truly can't without much devices, etc., and frankly, he's NOT the same person I married). He visits web sites daily - at least.
I've had it with this and mentioned that this was a deal breaker for me - the porn. I said otherwise, I may need to find a job and move out (my job has been taking care of him - he needs full-time care). He said "Maybe that is for the best."

I guess I will be leaving him soon. I feel that he chose his porn over me. I feel very used right now. I loved him dearly - enough to give up a well-paying job with a career ahead of me five years ago to share my life with him - yes, even knowing that he has Parkinson's. I feel like I've been duped - not because of the Parkinson's, but perhaps because he was just looking for someone to take care of him.

You all are the best. Thanks for your support and caring...

By care4loved1 On 2011.01.09 21:11
I have heard this happening to many people with PD. What meds does he take? Most of the meds can cause addicitons. I know when my husband was first diagnosed he was put on mirapex. He was not himself. When I looked in his eyes it was looking into someone's eyes that I have never seen before. He was also wanting sex more often. I got him off the meds as quick as possible, for fear of sex/porn addictions, gambling, etc.

I know exactly how you feel about not being with the man you married. i have many thoughts of leaving too (more often as the disease progresses), this is the hardest challenge that any of us will ever go through in all our lives. It is hard to be strong all the time but you have to try and remember that this is the meds or the disease that has made him this way, he is not doing it intentionally.

Be strong you are in my prayers

By lurkingforacure On 2011.01.09 21:49
I've posted this before and here I go again, about the porn.

I dont' like it anymore than the next girl (seems men just really like it), BUT...

Men love porn. All men, including those without PD. Porn is one of THE biggest industries, bigger than you would believe. It is one of THE biggest exports of America, and incredibly, the largest consumer? Asia. Google it and you'll see. It's something in the tens of billions of dollars.

Why is this important? Because it helps me to realize that first, my guy is normal because all guys love porn. They just do. It doesn't seem to matter what kind, either, guy porn, girl porn, guy/girl, whatever combo.

Second, I think guys with PD really like porn because it takes their mind off their condition, causes the release of chemicals in the brain that literally help them feel better, and who knows, maybe even makes them feel better also if they imagine themselves performing some of the superhuman sex acts you see in those films. What guy doesn't want to think they can have sex for hours on end with multiple partners and stilll maintain an erection the size of a football?

So I think it's part being a guy (although mine tries to tell me he's researched this and more women than men buy/like porn, which I don't believe and even if true, doesn't apply to me) and part PD. I really try to look the other way on this issue but it's hard when I go to the computer and am greeted with a camera shot an inch away from someone's you-know-what because he didn't turn the damn porn off. I wish I could be more open-minded about it but the whole industry to me is raunchy and vile. He seems to almost need it, though, and he's ill, so I just try to let him watch what he wants and ignore it as much as possible. I have drawn the line at watching it myself, though, I just can't make myself do that. And I don't think of myself as a prude, or frigid, either. I totally understand what you're saying, and hope this helps.

By mrsmop On 2011.01.09 21:58
Re the meds which cause addictions, it is impossible to get some PWP off of those drugs such as Mirapex and Requip. My spouse is on Requip due to severe Restless Leg Syndrome, which causes him considerable pain and then an inability to sleep.
I too think about leaving, as I have no meaningful life with him anymore. He is not as physically disabled as some I read about, but the messiness, destructiveness, forgetfulness drive me crazy. He constantly loses things, like his wallet and cell phone. He has no insight into his behavior. All I do is clean up counters and floors, and trip over his junk lying around. I am out of the house as much as I can, as he has a companion/attendant Mon-Fri during the day as he still isn't driving. He hasn't driven since he broke his neck last March. Physically he made a remarkable recovery from that. He too, is into porn on his computer, but blames it on me as I don't want to have sex with him anymore. Everytime I think about leaving, I feel guilty. If I left, he would need more help as he can't manage his finances anymore, or manage the house or even his medications. He is obsessed with his meds, and takes different meds every 3 hrs. Don't really want to stay, but can't seem to bring myself to leave, so I just feel unhappy all the time. If nothing else, it feels good to vent.

mrsmop

By parkinit On 2011.01.09 22:14
Okay - If I thought it were the meds, I could understand. He is NOT on Mirapex or Requip. I am not a prude either, but I've had enough of this. I've been a nervous wreck all night long and then he's doing the porn all day long and doesn't even hide it anymore. He promised me he wouldn't anymore about a year ago and a week later, I caught him. He IS addicted, but it is NOT because of the meds.

By Emma On 2011.01.10 04:24
Parkinit, If he's not on Requip or Mirapex did he have this addiction before the PD, maybe before you knew him, and you just weren't aware of it? I really understand what you're saying and how you feel because we've been through this too. I agree with lurking that all men like porn but I think that an obsession or over indulgence with anything needs to be watched. Obsessions tend to grow and expand. Earlier in his PD my husband was using the internet for viewing porn. Then at one point I found that he had done a search for "sex partners" and at the same time had been searching for apartments in a nearby college town. That was frightening to me. He also expanded his porn searches to include beastiality. Also frightening. In addition, most porn sites carry computer viruses. We had an experience with that where it would cost almost as much to clean up the computer as buy a new one so we got the new one. Then he ran up a huge cable bill for movies he was watching on TV. Internet porn sites usually have a charge as well. Then he started making inappropriate comments about young girls, including his granddaughters. His obsession was directly linked to the Requip and once that was reduced he improved. Now the obsession is focused primarily on me, another problem. I can understand how this could be the deal breaker for you, whether it's related to meds or not. I used to feel the same way until it got under control a bit but it's still an issue. When the obsession was at it's worst I used to feel like I was living in some dark hell hole den of iniquity (and I'm no prude either) and I hated it so much I can't even describe it. No one should have to live like that and it's one of those things you can't understand unless you've been through it.

Whatever you decide to do I wish you the best.

By Pearly4 On 2011.01.10 06:09
I avoided weighing in on this subject last time it came up because I have no partner with Parkinson's experience - it was my mother who had Parkinson's. But I would like to add a note here this time -- my husband too had some "issues" with porn, probably long before retirement, but they came to a head at his retirement. I believe that men and women are simply different ("men are from Mars, women are from Venus") -- we are simply different types of human being by program, by birth, by genetic structure, whatever. Doesn't mean I liked it, particpated in it, or even TOLERATED it -- I put a stop to it, or rather he did, when I threatened to let our children know and he knew that at that point he was at risk of losing touch with our granddaughters, and rightfully so in my mind. The fact that he was able to control his addiction I think was maybe assisted by the fact that he did NOT have Parkinson's. I believe the disease does lessen our natural abilities to control our behaviors - maybe its the dementia that comes with it, maybe its the disease itself, maybe the medications. And its effected our relationship as well whether he's controlled it or not. (By the way, my mother, "the prude", became very lax in covering up in her final year. She'd parade around the house in the nude and leave her bedroom and bathroom door open -- things my husband had to deal with more than I since I was still working -- again, though, was it the Parkinson's or the developing dementia?)

In any case, I probably could rattle on a bit, but I think everyone needs to do what is right for themselves -- do I believe you're wrong for wanting to leave? Absolutely not! Do I think you should stay simply because you promised to stay "in sickness and in health" -- absolutely not! Do I think you should run as fast as you can? Absolutely not. Do what is right for you.

If its possible I would suggest some impartial conversation with a professional -- speak with his doctor if you make yourself do it, he may be able to help whether your husband in on Requip or Mirapex or not. I'd suggest speaking with a therapist or something, but I really don't know how many would understand the complications and contributions Parkinson's is making and be able to give you much honest advice. As far as having an ear to vent to -- I guess that's what we can provide, others better than me perhaps, because of the knowledge of Parkinson's and its contributions.

Whatever you decide -- I feel for you and your problem and I wish you only the best. Do what's right for you and your own sanity.

By MJ-Camano On 2011.01.10 12:34
I can so understand the wanting to leave. I do think I could write a book about the experiences with PD and I'm sure all of you can also. I have read many books written by others that have so many insights to how the partner is feeling and we go thru every emotion. I too went thru the sex stage, it left me very unloveable towards my husband and I can't change it. Now Lewy Body has taken over and even if I try to give a little affection, it takes us right back to the obsession stage. I have been so blessed to have my three children help care of him as much as they can and some relatives also help. As he can no longer stay by himself and needs fulltime care this has been a major struggle for me as I am still working. My husband can still walk on his own, but does not do a thing for himself; not even get a glass of water. I need to turn on the TV and change the channel, and he is now having a hard time understanding TV programs.
For my husbands sake, mine, and my children's we have all decided it is time to look into other options. We are working towards a "boarding home" they have "pods" with about 10-14 people per pod, full-time caregivers, meals, activities, and other people for him to talk to and a set schedule. I really think this will be better for him and he is looking forward to having people around all the time. The place is very willing to gradually work him in there: he went for lunch, will go next week and stay overnight, then we will hopefully have him there in about a month full time. He asks many questions, and I'm trying to answer them as honestly as I can without setting off any anxiouty. This is a slow process for us but very needed. I can see the toll this has taken on my kids (they feel obligated to be here as much as they can for their father and for me.) and I know it is taking a toll on me. As they tell us in the caregiving classes - WE MUST take care of the caregiver, each of our situations is different and we must do what is good for all involved.

So far for me the hardest parts of what I have had to deal with is: the sex addiction, incontinence, arguing, and now this home placement.

By caregivermary On 2011.01.10 14:25
Park,

Most of us can relate and understand why you feel the way you do. I am extremely sorry you are in this position. We will support you and we do care.

NOW, this is what I don't understand about this issue. We are all caring for individuals who have at least one disease that has no cure at this point in time and I haven't seen anything that one is on the horizon. Why do people spend valuable time with internet porn? Time is short for everyone but if you know you potentially have less, why would you make your caregiver, children, and family in general miserable, uncomfortable, unsafe, etc.? PLUS, I think those involved in this activity are disrepectful, selfish, and lack the abiltiy to control their behavior. This is addiction and with all due respect should not be dismissed and defended. Do some people have too much time on their hands? Are their families not paying attention? There are so many questions regarding this issue. Is it a deep character issue which is magified by Parkinson's? Annwood said many times that she believed this behavior continues without any of the drugs.

I have lived through this period and know how hurtful, painful, and discouraging it can be. Thankfully, I had Drs who helped. There are so many difficult periods with this disease. My nature is to look the issue straight on and deal with it immediately instead of allowing it to get completely out of control. This meant that my husb lost some of his control but the caregiver(ME) was able to maintain my sanity and continue caring for him.

By parkinit On 2011.01.10 14:56
Thank you all for weighing in. After discussing last night, he said he will "try" to curtail his porn. I guess I will "try" to stick around while he curtails. We are seeing his doctor (neuro) today, who is also a psychiatrist. I will bring this up. I think it is that important. I'm hanging in there for now. I know he desperately needs me and he insists he loves me.

I agree, wholeheartedly, that he could be better spending the time maybe helping me do the laundry, mopping up spills after himself (yes, it will take HIM more time, but apparently, he has the time). I also agree that I think it is selfish and yes, I've seen that he has been to bestiality sites, has made inappropriate comments about teenagers on the cheering squad at basketball or football games, etc. I feel that possibly this totally uncharacteristic and highly inappropriate behavior is linked to the Parkinsons.

Thanks again everyone for your support and comments.

By Emma On 2011.01.10 16:07
caregivermary, Something you said in your post really struck a chord with me. I too have wondered why someone who is living with a progressive incurable disease would want to waste the precious time they have left wallowing in the gutter. I think in that situation I would want to be focusing on my soul, making peace with my life and the people in it, showing and expressing love to those I care about and saying what I wanted to say. I do those things anyway but I think I would step it up if I had a disease. I guess I don't really understand the nature of addiction or not being able to control it but I try. It's one of the toughest parts of this disease.

By rmshea On 2011.01.10 21:34
A suggestion here...I pay to have a filter on our service..porn sites are blocked. My husband purchased an additional one for his laptop just so he can never be tempted. Porn addiction itself is a miserable thing and I am not sure if one can simply blame Parkinsons. In any case, buy a filtering service and hold him to his promise. One cannot simply cut down on an addiction. Help by removing the temptation.

By LibbyBuck On 2011.01.12 20:36
I have no right in butting in here, but if you had PD, couldn't walk, talk or do anything of any meaningful sort, wouldn't you want a lil' razmatazz? Of course you would. I don't condone bad or tacky behavior, but you're being judgemental about something you cannot and should not provide at this time. Lighten up. Sorry, but this is such a perfect example of Caretaker stress. It's not fun taking care of someone who is so totally compromised. It's not, it sucks, it's hard, it's stressful. Do you have to feel this much about something that brings your PD a little bit of pleasure? No, you don't. It's a choice you're making based on an outdated situation. I pray for you and hope you find acceptance and compassion for this. Peace.

By Pearly4 On 2011.01.13 05:45
[deleted]

Original post was deleted -- had hoped to avoid participating in what I fear will become another mile long "discussion" ending with bad feelings for many.

We should be supporting and accepting each other - not pointing a finger and sitting in judgement.

By Emma On 2011.01.13 05:52
LibbyBuck, You obviously are not living with this situation. Walk a mile in my shoes before making a judgement.

By LibbyBuck On 2011.01.13 20:57
Emma, you're right. I'm sorry and I truly apologize. It must be very painful for you and I was out of line. Thank you and I hope this situation improves for you. I had no right whatsoever to say that.

By parkinit On 2011.01.16 11:22
rmshea -

Good advice on the filter. I checked and Norton has a built in "parent feature" which I activated on his computer. I didn't say anything to him about activating this feature, but he's been mumbling around about his computer being a "piece of crap that doesn't work" lately, so I'm assuming the filter is working (wink).

Thank you for NOT weighing in - those who have not had to deal with this situation. We all come from different backgrounds and acceptance levels will vary. What is "outdated" to some is "timeless" to others - our values, beliefs and morals.

I appreciate all the helpful advice and suggestions. We trudge forward. Blessings...

By rmshea On 2011.01.16 22:01
Glad you have a filter...my son won't complain because then I'd know he was trying, ;). I check it once in awhile to make sure he hasn't found a way around it.


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