posted March 05, 2003 04:48 PM
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My husband is 46, I am 40, we have been married almost 23 years. He was diagnosed with Parkinson's Disease 5 years ago. The last three years have been really trying. He hardly ever sleeps and has an impotency problem. After a year and a half of begging, he finally saw a doctor that prescribed Viagra, which has not helped. About 6 weeks ago, he told me he wasnt happy and wasnt in love with me anymore. He has been living with his sister for almost a month now. I ask him if he would go to counseling, but he refused. I am seeing a counselor now, trying to keep myself together. He says he doesnt know what will make him happy. He did have a sleep test done last week and is now on medication, hopefully that will help. I am afraid to cut off all contact due to his medical problems, but I am also tired of his rejection. Where do I go from here? I am not ready to give up on him yet, but I refuse to become a bitter, lonely, old women. Help!

Often prolonged illness causes emotional problems that are hard on a marriage.

I can't help thinking that learning his emotional needs and meeting them will help, but I also recommend counseling. Perhaps his Dr could recommend someone that is skilled in counseling those with Parkinsons.

I believe that it would be wise for you to get counseling on how to best help him live with this.

Your post is pretty short, usually there is a lot going on behind the scenes. Things that have led up to where you are now. If there are other factors it whould help if you could relate these also.

Remember we are not professional counselers, we are just friends that care. I believe professional counseling would be your best help right now.

SS

You're in a tough position.

Being diagnosed with a serious, progressive, uncurable disease can affect mental, emotional as well as physical health.

You have a long marriage...is withdrawal one of the ways he deals with problems?

I'm wondering if he has some thoughts of saving you the pain of his further degeneration?

The counseling suggestion was a good one, how about support groups, do you think he'd be any more open to that? I think counseling is a good idea for you, even if he won't go. How about spouse support groups for Parkinsons? I suspect this kind of change of personality and withdrawal may be somewhat common.

I'd suggest that you be in his life as much as he'll let you. A call day, meeting for lunch, if you've got kids, family dinner.

Avoid adding to his unhappiness, if you are on good terms with this sister, keep in touch with her and let her know that you want to be involved in his life. She may not know what the situation is with you, if you haven't talked to her.

Marriage Builders Plan A is for use when a partner is being unfaithful, but one of it's main behaviors is avoiding lovebusters, and that information on Plan A & lovebusters is here on the site and I think it may give you some idea of how to go about dealing with him while he is distancing from you.

I'm really sorry you are in this position.

Thank you so much for responding. I really need a friend right now, our friends and families are too close to the situation to help without taking sides.
Yes, there is much more to the story. I have not been very supportive these last few years, I guess from being pushed away.
My husband doesnt want help from anybody, he doesnt want anyone to feel sorry for him, and his latest thing is that he doesnt want to become a burden to anybody. He refuses to admit that he is depressed, which was one of the first things his doctor told him to watch for. He keeps repeating that he is going to be in a wheelchair in four years (not sure where this came from)and he better do everything "he" wants to now, which evidentally doesn't include wife, kids or other family. I know he is very scared, and I cant say how I would act if it were me. But what else can I do if he refuses counseling? I did finally find a support group for young Parkinson's patients in our area that meets once a month, I plan on going to their next meeting, but I am sure I will be going alone.
As for other things in our marriage, shortly after the sleeping problems and impotency started, our cable bill increased. Then, we started getting all these lovely X rated pop ups on the computer... that was not good for our 15 year old son and 20 yr old daughter. After seeing this on the computer and catching him watching porn in the middle of the night (as well as some of their friends seeing)they became embarrased and lost their respect for him (now one of his complaints) because he didnt care. His answer to them was that he was 46 yrs old and he could do what he wanted. I also begin to lose respect for him as well as hating to even try to have sex with him because it always ended with him being really mad and making ugly remarks about not being able to finish. This also made me wonder if he was getting fulfillment from the movies and I couldnt satisfy him anymore, or better yet, was there someone else and he just couldnt do it with me.
At this point I dont want him back home unless there are some changes, the most important one being his health (mentally and physically). I have told him I want to work on this, as I said I am already in counseling. He says he doesnt know what he wants, so there is no use in counseling. She has recommended that I distance myself from him, which I worried about because of his state of mind, but I dont know how much longer I can stand to be continually pushed away. I have tried to be nice to him, I have tried making the extra efforts, but nothing is good enough. Not to mention that he has only seen his son for about 20 minutes in the last 2 weeks because he is so busy trying to make himself happy (he planned fishing trips for three weekends in a row).
Sorry for going on and on... once I get going, it's hard to stop. Anyway, I would appreciate anybody's imput on this, I do still love him and would hate to throw away 23 years. I guess he has to be able to live with himself before he can live with me.

<small>[ March 10, 2003, 04:05 PM: Message edited by: CantLetHimGo ]</small>

Thanks Lor,
His sister is being a great help, and yes she can keep an eye on him. She and I talk on a regular basis.
I am hoping that the sleeping pills will give him some much needed rest. My counselor says it may take a month for him to feel the difference. I am praying that the rest will put him in a better frame of mind.
As for lunches or dinners, I have offered several times, usually in a letter or email, and he doesnt even acknowledge me. That is why the counselor suggested that I back off, but I dont know if that is right either. I will go over Plan A, I had skimmed it before, but being that I wasnt dealing with an affair, I wasnt sure I needed it. Thanks

Can't,
It's good the sister is communicating with you.

What is her view on the porn? Is he following the same pattern at her house? There have been some in depth discussions on porn here...you can do a topic search by clicking on the word search near the top of the page and put porn in the search block and choose either "in any part of message" or "subject".

I'm sure it is a very fine line between feeling like you are abandoning him and yet, giving him some space to work out whatever is in his head. I'm not surprised at the "burden" statement. Nor that he feels it is time to do what he wants. It isnt' a great attitude, but his attitude is not anything in your control.

I am really pleased your husband does not want anyone to feel sorry for him. Empathy would be your greatest alli right now.

Also pleased you are going to a support group, gather all the info there you can, take home some pamphlets and drop them to your sisters, asking her to leave them in an open area to be seen by your husband...with a little message attached.. thought you would like to read over these. Its no use pushing him , just a few sutble hints will generally start him on the right road.

I doubt very much your husband has reached acceptance of his disease yet. It will come, but it takes time and patience and definately treatment of any underlying depression. Calling his neurologist yourself...is a good starting point.

take care.

Could his rejection be his way of trying to say 'I don't feel much like a man but I do love you, and I don't want you to be tied down to a man who can not give you what you need.'?

Could his rejection be his way of trying to say 'I don't feel much like a man but I do love you, and I don't want you to be tied down to a man who can not give you what you need.'?

5 yrs ago Coffeeman, take out the "man" and insert "woman"..... and.... you just drove the nail right on through as to what I was thinking.

Lor,
His sister doesnt know about the porn, I have not told her that... he would die if he knew how much she does know. So no, he is not watching it on her cable, but he does have a VCR and DVD player, so I dont know what he may be renting. I have been reading some of the messages on porn, it looks like I could be reading for a while (I have alot of free time these days anyway).
As a matter of fact he was just by here to bring some money. He wanted to know what the counselor had told me at our last session. I tried to explain that I was supposed to give him his space that he keeps asking for, since it causes me so much pain to constantly be rejected. So as he is crying, he begs me not to hate him. Of course I told him that I didnt hate him, that I loved him very much. I keep telling him that I just want him to be happy. He said that he may decide to go to counseling, but everyone he knows who tried it ended up divorced anyway. He also told me that all the new medications the doctor just gave him do not seem to be working. I guess it is time for me to call the doctor.
So yes, I do feel like I am abandoning him, but he doesnt want me or my help, so I am just making myself miserable trying. Thanks for you help.

Dinotopia,
The support group isnt until the end of the month, I will let him know that I am going and ask if he wants to, but I wont push. After I go to the first one and make sure of what it going on, I plan to take the kids and ask his sister to go. My counselor is also interested in going, so she can have a better understanding of whats going on in the event he gives in to go see her. I am very thankful that she has such an interest.
And you are right, it is time to call the doctor about the depression. His original doctor had given him an antidepressant when he first started having sleep problems, but he refused to take it. Like I said, the "macho" (real men dont get depressed)attitude is a big problem. He dealt with the disease at first, but since its progression and new problems, he's not dealing anymore. I cant hold him down and make him take his medicine. I am just so frustrated. Thanks for you input.
Cant

2Much,
He has made that statement in a round about way. He told me that his inability to have sex was probably 90% of the problem, that he just didnt feel like a man. Well, honestly, it makes me feel like I am not very much of a woman either. And yes, he has told me that he doesnt want me to be burdened with him and that he would never marry again because he wouldnt want to burden anyone else either. It kills me to think that he may have to live the rest of his life alone, which is his choice, I have no control here. He just told me a few minutes ago that he does love me, the light bulb has just not went on as to what he is supposed to do yet... and so I wait.

</font><blockquote><font size="1" face="Verdana, Arial">quote:</font><hr /><font size="2" face="Verdana, Arial">Well, honestly, it makes me feel like I am not very much of a woman either.</font><hr /></blockquote><font size="2" face="Verdana, Arial">This is what gets lost in our(men's) heads when impotence rears it's ugly head. We get so wrapped up in our own fears and doubts, that we forget that our wives are suffering just as much as we are. We tie too much of our masculinity between our legs that we forget that our greatest masculine organ lies between our ears. Oh when will we learn?

OK, I need some advice. As I said, he has been given antidepressants before, but wouldnt take them. So, if I can get his new doctor to prescribe them, I dont know if he will take them this time either. I have been reading some things on depression, and boy can I see the symptoms. Some of these things he has told me he feels, but do you think if I show him an article that says it in black and white that he would understand? One of the things the article talks about is depression due to problems with dopamine in the brain (which is the cause of Parkinson's). Do you think it would help if me and the kids sat him down and talked to him or would he consider it ganging up on him?
Guys, my mom committed suicide 12 years ago, I dont want to go down this road again.
Anybody have any ideas?

<small>[ March 11, 2003, 10:47 AM: Message edited by: CantLetHimGo ]</small>

Maybe you/family could also put it to your husband if he trails an A-D for a period of 6 weeks, to see if it does help with his problems. Bargain your way in with a compromise.

A number of anti-depressants also have a duel purpose.
This maybe something you could discuss with your husbands neurologist..since he doeant like the idea of taking an A-D. perhaps if he were persueded to try for another problem.

Also would your husband consider a pain/trauma management course?Psychologists generally run them . Basically its learning new techniques into relaxation. Retraining the brain to help one deal better with the circumstance around them.

Dinotopia,
I think I may have found a way around the AD thing. Some of the people here at work are into the vitamin/ herb kind of treatments. In researching we found that treatments for depression are Vitamins B6, B12, and folic acid. St. Johns Wart is also very popular. Has anyone used any of these before? I have already told him about the vitamins and he has agreed to give them a try, hopefully they work.

Please tread carefully with over the counter products.

A lot of people get into trouble self medicating with over the counter products and not checking for counter-indications with the prescription drugs they are taking.Even if they arnt taking prescription drugs, people dump things into their body because they heard it is good for this and good for that, only to find they end up with more health problems. There is so far no governing body that controls what goes into these products or how many of them are labeled.

Take for instance...Ginkgo biloba..good for memory right??...Ginkgo is a blood thinner and should not be used by anyone taking a blood thinner, such as aspirin, vitamin E, warfarin , garlic or ginger.

With your husbands disease he is at high risk of clinical depression....vitamins will do diddly squat in that scenerio. Especially St johns wort ( it interacts with a number of prescription drugs....including Anti-D's) it is designed for the moody blues, not depression.

I would still approach your husbands specialist.

Take care.