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By lurkingforacure On 2010.10.09 12:45
OK, I have been struggling with this issue for awhile now and can't seem to make any progress whatsoever. As most of you know we have young kids and my husband, although early in this game and still working, is not able to do much at all where they are concerned. Which is fine....but he STILL won't tell them he is ill which makes our situation really insane. I don't need a lecture about that, everyone tells me we must tell the kids but he won't do it and I'm not up for that fight in addition to everything else I have on my plate. He hasn't even told his own mother, although he let me tell his dad (I know, like I said, it's crazy but I can only handle so much).

But back to where I need help, and maybe there is none, this is just how it is. My husband seems to almost go out of his way to avoid our kids. Here is an example. The other day he stayed home. He told me he wasn't planning on going in to his office, which was fine. When I came home with our son from school, my husband was gone, and had just left. It's like he'll stay at home if we're gone, but when the kids hit the door, he takes off.

Another sad thing I have been noticing for months now is that he very seldom eats with us. I will slave over a nice dinner (hoping he won't be up all night eating, which usually doesn't work) so we can eat as a family, and he will come to the table, eat dinner, and as soon as he is done, and I mean, the fork is on the table, he will leave and go to our room. Sometimes he rests, sometimes he's on his computer, but whatever he is doing, he's not with our kids who are now both in school during the day, so our time together is very limited. I finish dinner with the kids and it is so very ackward.

On the weekends he will spend tiny five or ten minute increments of time with our kids, then bail back to his computer, and often he rests. At those times I feel compelled to keep the kids quiet so that he can rest, but sometimes discover that he's actually been on the computer while I thought he was resting. I've also taken the kids out of the house on the weekend for errands and such so that he has a quiet house to himself so he can rest, only to have him tell me when we get home five hours later that he didn't rest at all, and NOW he really needs a break. It makes me crazy and I don't know what to do.

This actually happened last night, I picked the kids up from school and took them for an ice cream, as my husband had come home early, telling me that he was exhausted and needed to rest. After that we ran another errand and then got stuck in after work traffic and didnt' get home until almost six, which I thought my husband would be relieved as it meant more time for him in a quiet house. Nope. He asked me why we were gone so long and now that we were home, he really needed a break. I could hardly believe it.

I have actually broached this topic with him and he just tells me he is tired, and I do get that. But I dont' get how he can be tired one minute for the kids, yet have energy to go work/play/whatever on his computer. I've not read much about this and don't know if anyone has any suggestsions, but if you do, please send them my way. I have told him it is only natural for the kids to interpret his withdrawal, for lack of a better word, as a signal that they are not worthy of his time, and that he needed to make sure they understood that he loves them even though he may not be there as much as he might like...but I don't know that it got through or if it did, that he can help it. Nothing has changed, unfortunately. Like I said, anyone think of anything to help, I'm all ears.

By caregivermary On 2010.10.09 14:45
Lurking

I know you have been on this board for some time and have seen previous communication regarding computer use. You probably already considered this possibility. But, here it goes.

What is he using the computer to do? Are you sure he is doing what you think or what he told you he was doing? You know the possibilities-gambling, sex/porn, shopping, etc. I'm not saying this is what it is but the potential is there with the PD drugs.

If this is not it, then I would definitely have a (another?) conversation with him about the behavior. I know from experience that my PDer hid so much from me and I could of helped him more and avoided so many things. You are the one that will resolve whatever is going on good, bad or whatever. Get ahead of it-don't let it get out of control.

Take care

By lurkingforacure On 2010.10.09 17:24
I do know about the porn issues many deal with, and yes I have seen that but it's at night only, when he does go on, I've never seen it during the day (so far, and I watch as much as I can). usually he's on a music making site (he has some software that integrates and you can makes songs) and while I think that's great, because it is like a therapy and he does enjoy it, I also feel that if he has that kind of time and energy he needs to put some of that towards our kids.

It is just very hard when you are running yourself to death doing pretty much everything to come home exhausted and have someone tell you that after they have been home, by themselves, for several hours, that they now need a break. This doesn't happen every day and I know my husband really feels like crap, which makes is so much harder. I guess that is where I need help with the perspective: if one feels so bad they can't be in the same room as their kids, even to watch a movie (which to me, hey, takes little to no effort compared to other stuff you do with and for kids) then how can they fire up the computer and play with their music software programs for hours?

I don't begrudge that at all, and am grateful he has something he enjoys, it's just that I am having a very hard time figuring out whether it's reasonable to expect a PWP to spend a little more time with his kids when he is spending so much time doing his hobby.

Again, I am so thankful he has a hobby, many don't, and I dont' want to say anything that might cause him to think he should give it up, because that's not right either. I think it's very important that he maintain his hobby, especially since it seems to be therapuetic for him, but where is the balance and how does one achieve that?

By caregivermary On 2010.10.09 18:01
Maybe it is noise or too much activity from the kids for his brain to handle. Although, the music software maybe to much too. My husb cannot tolerate noise from any source and anxiety is a big issue for him. Even the smallest issue will cause him to be anxious. Noisy restaurants, theatres, home parties, the fair, are all too much for him to handle. I'm not sure if you have said anything about depression. If he is depressed, he may feel he cannot make a valuable contribution to their day-to-day activities.

I thought for a long time that my husb, who was using the computer, was working on his family tree. Of course, some of the time he was but he was also visiting pron sites more often. But what I did learned was he was having a great deal of trouble keeping his computer working. He had convinced me it was the computer but after several visits to the repair shop, I figured out he really was struggling with using it. I then became the computer repair person.

I think it is reasonable for your husb to spend more time with his kids. Remember the comments a lot of us have made about everything being about them. Selfishness is a big part of this disease. If he is getting in this mode, that could be the reason. Keep looking for ways to keep them together. I know this is one more thing you will have to do but you will have to do it for the kids. However, you cannot beat yourself up physically and mentally forever.

Try movies, local outdoor music concerts, bicycling, picnic at a local park, miniature golf, fishing, local school sporting event, etc. etc.

By LOHENGR1N On 2010.10.09 22:43
Lurking, It might be time for as our old friend Bandito1 would say tough love. I know a squabble about telling the children isn't what you want but it is what you need. The time for that is up to you but my friend reading your latest post along these lines makes me think of that song the Cat's in the cradle and the silver spoon. You are spiraling downward trying to keep it together as the dysfunction gets worse. Meanwhile the Children are more and more confused or starting to believe Dad wants nothing to do with them because either they've done something wrong or He just doesn't like them. I can sit here and guess if it's denial (if no one knows then he doesn't really have it and the doctors are wrong). Or the more you cater to his needs (quiet, relaxing alone) the more you enable him to withdraw for the harsh reality of the disease. It could be he feels he's failed everyone by getting sick. (Not telling his Mother or Children). They say Parkinson's is like having an elephant in the room, one can only walk around it or sidestep it for so long before someone says what's that elephant doing here. (how come Dad's shaking like that?). I know in the past I've urged you both to tell the children. I've felt guilty in so doing but my friend this will get harder and harder the longer it goes on trying to preserve the family and allowing your husband to withdraw from everyone more and more. In so doing you're neglecting yourself, your needs and the children's, yes he is sick however it's allowing his sickness to destroy the family unit. I'm sorry and apologize as this post isn't what you're searching for, a clearer understanding of why He does this. You need to discuss this with his Neurologist as it might be your husbands reaction to depression causing his actions. Please remember I do care about your children, yourself and your husband and the dilemma you find yourselves in and pray you find a way to cope in a united front fighting this disease. Take care, best of luck and hang in there.

By Reflection On 2010.10.10 16:25
Dear Lurking -
CaregiverMary and Al, channeling Bandito1, have given you very good advice. All I can do is second it - and, perhaps, motivate you to change what, as Al says, is "spiraling downward."
What's uncanny - you are describing my family, several years ago. I so wish I could save you, your family, from the mistakes I made - which are the mistakes you are making. With the best intentions in the world.
As CaregiverMary said:
"I know from experience that my PDer hid so much from me and I could of helped him more and avoided so many things. You are the one that will resolve whatever is going on good, bad or whatever. Get ahead of it-don't let it get out of control."
---
I believe a critical step is to get very familiar with the Serenity Prayer:
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
---
What can you change here? You can change your desperate attempts to make your family seem "normal." It isn't any more. I'm very, very sorry, but it isn't likely to revert to "normal". Trying to have a "normal" family dinner, "normal" family interaction, for your kids to have a "normal" relation with their Dad - it isn't going to happen, and trying to make it happen by sheer effort of will - your will - makes the situation worse, not better.
It's possible - though I never succeeded - you can set some limits, some boundries, what you will and will not put up with, what you can and cannot expect. Though I found that eventually I just had to accept that this, too, was beyond my control - that the only thing I could do was to lower my expectations until he could, and would choose to, meet them - which meant having no expectations at all. But at least I wasn't constantly pissed off that he had, once again, disappointed us - failed to pick the kids up, didn't show up for their theater or sports or was late for dinner, etc. And I wasn't makeing the kids nuts by leading them to expect more of their father than he could give.
But - I know you said you don't want, can't deal with this - but you must - it is in your control to set a clear deadline for your husband: you tell the kids about your illness this weekend, or I'm going to. Because indeed, until you give the kids another conceptual structure for understanding what's going on - "it's because Dad's sick, not because I'm not worthy of his time, his love" - they are bewildered, disoriented, and saddened, each time he rejects them for his computer, for his other interests.
Understanding why your husband is acting like this would be great - and good for you, if you can. In my case, it was a combo of Parkinson's, plus some requip-fueled compulsive behavior that was, and still is, horribly destructive (an affair, secrecy, lies....) And he still has minimal interest in the kids, who are now, thankfully, in college, and out of the madhouse our home became.
But by at least detaching, by not having expectations he couldn't, or chose not to meet, by not trying to make what was clearly a crazy situation "normal" - the kids and I regained some sanity. And some control.
I wish you the best. This is very hard stuff. I am so very sorry you have to deal with it. But this disease is a marathon, not a sprint, and you need try to to do what's best for the family in the long run. And that includes being tough enough now that you keep enough love, enough resiliance, in your and your kids, so that you can still be there for him in some fashion as the disease progresses. Because the longer you bash your head against the wall of trying to change what you can't, the more your sap your strength and love - and you'll need all the strength and love you can muster.
I wish this sounded more upbeat - but, at least for my family, it's been rough, and I know now that my efforts to deny how weird it had become just fueled the craziness. And this made it harder on my kids than it needed to be. Tough love would have helped.
Good luck. My heart is with you. I don't know if there's

By susger8 On 2010.10.12 09:05
You might already know this, but many PDers get obsessive about things. It sounds as if your husband is not into porn or gambling, but it's possible to be obsessive about less harmful activities -- like constantly being on the computer. It can be related just to the PD, but if he's taking Mirapex or Requip, both of those seem more likely to cause obsessive behaviors. You might want to talk about this with his neurologist.

I think I would be very tempted to tell him that if he doesn't agree to explain things to your children, that you will tell them anyway. They need to know.

Sue

By Reflection On 2010.10.14 06:26
The Parkinson's Disease Foundation has a sheet:
Tips for Talking to Your Kids

http://www.pdf.org/pdf/fs_children_coping_pd_07.pdf

By parkinit On 2010.10.15 11:32
Lurking -

i wish you could speak with our neuro. He is a psychologist as well as a neuro, so he understands and counsels a lot. This would be a good issue to bring up with your husband in front of a psychologist who understands the PD mind. being able to bring up issues with a unbiased moderator present who could diffuse things and brings things to light for your spouse would be helpful. Just because he has this disease, doesn't mean he gets to check out totally and be excused from his children's lives.

This is a insidious FAMILY disease. It affects everyone around the inflicted.

By Lynnie2 On 2010.10.15 13:44
I also think that you should tell your children about their father's illness. My husband didn't want anyone other than the family to know about his illness at first, and it was hard for me. After we started telling friends and talked to other people about the illnes, it was much easier and less stressful.


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