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Topic Things just got real crazy Go to previous topic Go to next topic Go to higher level

By Emma On 2009.08.21 10:50
This is going to be long ...

Yesterday I mentioned to my husband that our printer is out of ink and I need to buy new cartridges. He just came up to me demanding to know what I'm printing to use up all of the ink. He thinks I have some business on the side that I didn't tell him about.

The next thing he did was tell me that he wants to send back the medical alert system so that he can have the $30.00/month toward a car payment because he's going to buy a car for himself. He cannot drive, he hasn't driven for a year which he blames me for. He thinks he's perfectly capable of driving.

Then he announced that he doesn't want to spend the rest of his life unhappy and wanted to know if we could afford to live apart. He's unhappy because of our lack of a sex life. That lack is due to many factors including my loss of interest since menopause, my feeling like a parent/nurse rather than a spouse, his obsession with sex and the constant pressure, and last but not least, his total disregard for me as a human being with feelings and his inability to see beyond himself and his own wants and needs. We have had many conversations about this but he just doesn't hear anything I have to say. I have tried compromising on the sex issue but that doesn't work because of the obsession. Nothing is enough for him. If we had sex once a week he would want it twice a week. If we had it twice a week he would want it everyday. You get the picture. Sorry if this offensive to anyone but it's reality.

I'm at the end of my rope. Help please!

By lurkingforacure On 2009.08.21 12:28
I know what you are saying. The sex is very difficult. We are going through that as well and I feel a lot of the same things you mention with the added bonus of the fact that I am raising two young kids and I am TIRED. When I finally, finally get to go to bed, the ONLY thing I want to do is sleep. And when my spouse wakes up at 3, 4 in the morning and wants to frolic (because he has gotten to nap before going to bed while I make dinner, bathe the kids, get them ready for bed, feed everyone, on and on and on) I am hardly in the mood.

I wish I had some answers for you. I have read that this is very common, regardless of whether someone is on Mirapex or not, although that seems to make it worse. We actually got our Mirapex way down, which was incredibly hard to do, and it really didn't make much of a difference. I try not to be mad at him, because I know sex is one of the few things that take the pain away, temporarily, but at the same time I can only do so much. I think the only thing that helps me is knowing how common this is in PD and that I have a lot of excellent company in this situation.

I don't have any experience yet with the other issues you mention, and can't imagine how hard that must be. As if you didn't have enough to deal with, huh?

By caregivermary On 2009.08.21 12:41

You are not alone on this issue either. Some of the spouses on this site have had the same issues. Unfortunately, it doesn't go away but it has subsided quite a bit for me.

I'm sure you have asked your husband why he is so unhappy. Is it just because he wants sex? Is it possible to have a conversation with him about happiness that is more than sex? Yes, I know sex is important but I know too Emma, what you are dealing with and as others have said previously it is very difficult to make the transition from caregiver to wife after a certain point with this disease.

I think you need to take this one issue at a time. Did anyone else besides you state you husb couldn't drive? I had a PT, primary dr, and an OT all conclude my husb couldn't drive. His neuro at that time wouldn't get involved. My husb wasn't happy but he agreed not to drive. Occassionally, he will try to drive our golf cart but gets lost and gives up(I'm with him on the ride). I'm not in agreement with him driving the cart but I try to be understanding. Since the last time he got lost he hasn't asked to drive. The $30 a month to buy a car is sort of funny but I'm not sure his mind is clear as to what year it really is.

I'm sure you know by now that the drugs they take cause compulsive behavior. Sex, shopping, gambling, etc. Is you husb using the computer to connect with other partners? View porn? If dementia is involved, he isn't thinking clearly and decision making is questionable. This has come up before and it's not an easy process to get through. Talking with his neuro may help or primary Dr. Once my husb was taken off of mirapex and amantadine things started to calm down. He was also put on citalopram and he is much better.

Moving to separate homes is of course a personal issue. Again, your husb is not thinking clearly and decision making questionable. Who will take care of him when he is alone?

I hope this was helpful and take care

By caregivermary On 2009.08.21 13:06

I did go back and read your first message on the board and can say you definitely need to get help from your husb's drs. The behavior is very much in line with what I was dealing with one year ago and the stage seems more in line with where my husb was a year ago. Med adjustment could help some.

By Emma On 2009.08.21 14:52
My husbands neurologist is aware of the obsessions and has reduced the Requip. It didn't help. As for your questions caregivermary, yes there have been problems in the past with pornography. Back when he could still use the computer he crashed it by downloading a porn movie. He also did a search for "sex partners" and the same day a search for apartments in a nearby college town. I guess he thought he could find some coeds and take them to his love nest. One month we had a $153.00 cable bill for porn that he watched. And no, he doesn't understand that there are other elements of happiness other than sex. Regardless of what I do for him or how many ways I show him that I love him he only focuses on the sex. I have tried repeatedly to talk to him about this but he doesn't get it. Any issue that comes up, whether it's sex or something else, when I try to get him to acknowledge my feelings he says "why should I acknowledge your feelings when your feelings are ridiculous". That's what I'm dealing with. One of my friends aptly describes my husbands attitude toward me as "big me, little you". It's always been like that, just worse now.

Both his PD doc and the psychologist who did his neuropsych told him that he couldn't drive. It doesn't matter. He blames all of his losses on me, not the Parkinsons. He also thinks that the reason I have taken responsibility for virtually everything around here is that I'm a control freak. He truly does not understand that he can no longer add two and two much less balance a checkbook (for example). He also thinks that I have a wonderful easy life because I got to retire at 55.

When he was talking today about living apart (getting divorced) I pointed out to him that he would have to hire help if I wasn't here and that he would lose my insurance which is much better than a Medicare supplement and part d. He thinks I'm saying that to blackmail him into staying with me. I don't know whether to laugh or cry at that one.

What do you do? You can't reason with an unreasonable person.

By lynn On 2009.08.21 15:54
For anyone to think they can have a car for $30 a month is not normal. Even the gas would cost more. I think your husband is having problems and I would try to speak to his doctor in private. He's made you the enemy which I have read repeatedly on this forum from other caregivers. Try to distance yourself from the actual words. I don't think he sounds rational so to have a discussion would be worthless. Ask the doctor if there is something he can take to calm him down. As for living apart, don't you wish? I just wouldn't have many opinions to anything that he says.

By caregivermary On 2009.08.21 19:02

you are going through almost exactly what I have been going through. It is really tough. I try to listen and I have finally learned to not let the comments bother me.
However, I do on occasion tell him what I think and how what he says hurts me. This has worked so far for me. My husb's temperment may be different than your husb's. I strongly believe the citalopram helped calm him down.

By annwood On 2009.08.21 20:34
Emma, As difficult as this is for you try to remember that it is the PD and not your husband. This behavior seems to be very common for many of us caring for PD partners. The sexual issues were the worst for me and the behavior was so unlike my husband. I believe it is caused by the invasion of PD into the frontal lobe of the brain, which controls behavior and the libido among other things. While I continued to love my husband until his dying day I could not have sex with him once he had developed dementia and required diapers. He thought that this was unreasonable and we setteled on the belief that I was frigid - worked for me. I did not feel guilty because I was exhausted, angry and frightened. I think it is practically impossible to be the caretaker, nurse, breadwinner and sexual partner.

My husband was not allowed to drive (the car keys had to be hidden at all times). Once he got hold of a set and drove out to the dealership and actually purchased a new car (a snazzy convertible). I sold it to our neighbor and my husband believed that he was borrowing it. That is how confused he was.

I did not find my husband's physicians to be helpful. They were reluctant to talk about sex and since he was a former associate of theirs they tended to believe that I was magnifying his symptoms. Believe it or not they gave him a prescription for Viagra! I believe that when PD pts get to this stage the physicians just don't know what to do.

Do you have POA? It sounds to me that it is time for our treatment program of "tough love". Take away the computer, the car keys and the check book. He will become livid but there really isn't anything he can do about it. You are doing these things for his own good and to protect other people. The obsessions are not going to go away so you have to curtail them as much as possible.

Do not waste your time trying to reason with him or to get his cooperation - it won't work. He may agree to something but not remember it 5 minutes later - this is the disease. Do not engage in any arguments with him - you will never win. Try to let what he says roll off of your back and remember again that this is the disease talking (easier said than done).

When you have time read the many past posting on this issue. Knowledge is power but knowing that you are not alone in this is even more powerful.

By Emma On 2009.08.22 04:50
Well, he continued to badger me on and off most of the day/evening and then just suddenly started acting like everything was fine.

I know that when these things happen it's the Parkinson's, not him but it's still hard. Let me correct that, sometimes it is him. He wasn't a saint before he had Parkinsons and he's not one now. His old personality is mixed in there with the disease.

annwood, I know what you're saying about doctors not wanting to deal with the sex issue. His neurologist seems to get embarrassed if I bring it up, but he will actually talk to him about it a little. His regular family doctor did give him viagra. I do have POA, he doesn't have car keys or a checkbook and the only credit card he has expired two years ago and is no longer an open account. He really isn't capable of using the computer independently anymore but I had put parental controls on it after the episodes that I mentioned in my post so even if he tried to do something he would be blocked.

At any rate, we have an appointment with the neuro next week and I'm going to be talking to him about what has been happening. For the most part I think our neurologist is good. He will address behavioral issues and is pretty blunt with my husband, not unkind, but blunt which is what I think it takes. And my husband likes him, which is a big plus.

Thank you all for your support and insights. No one can understand what this is like unless they've lived with it. I'm grateful for all of you.

By annwood On 2009.08.22 11:21
One of the most frustrating things is the fact that pts will have times when they are normal. My husband would have entire days like that once in awhile. I would rack my brain to try and figure out what had caused it but to no avail. It is such a cruel disease.

You are correct - the premorbid personality of a patient is often exacerbated when the controls are gone.

Stay strong and stay with us.

By dkleinert On 2009.08.23 16:44
Emma, Oh I can also so identify with you. My husband does so many of the same things yours does. The hardest part for me is to separate my husband from the disease. Last week before I went to work, he said out of the clear blue sky "Can I help you by taking a load of laundry out of the washer and putting in the dryer while you are gone today?" (at work for me - 10 hours away from home). I was so shocked because I can't put a load in to wash if I won't be there when it finishes because not matter how many times I request him to remove it and put it in the dryer - he forgets and does not do it. Even if a load is in the dryer and I leave the buzzer on so he will hear it, 10 hours later it is still turning and buzzing. So....when he asked that I (naively) said - "that would be great" and put a load of clothes in the washer. As I was driving home I thought of the laundry. I was afraid to look in the washer. After Joe went to bed I looked in the dryer first and it was empty, and sure enough, there was a sour load of washing in the washer. The next day when I started the washer to rewash the clothes he never even said anything.....he really just didn't is the PD.
I think we so long for the small kindnesses from our husbands, the small, tiny acknowledgements for what we are giving up and doing for them, that when something is said by them - a part of our brain wants to believe that is heartfelt and real coming from them - that they really did think of us - to help US......that we deny that it is the disease talking, not our husbands, and so we go along with whatever they said. Then we are hurt or disappointed later and they didn't even remember it after they said it. So sorry about what you are going thru - it is a war - battles each day - sometimes there are what appear to be clearings in the smoke once in awhile, but mostly it is a battle with PD.

Stay in touch with all of us.......we care....we know what it is like - all of it. By the way, we don't have sex anymore. He tells me he never thinks about it at all, and that seems to satisfy him. It is really sad and lonely for all of us who do not have PD......

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