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Topic Mean to our kids Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2016.01.02 23:29
At the risk of sounding mean and negative myself, I'm wondering if PD makes a patient mean. My husband is becoming increasingly mean and rude-I can accept his being mean to me (I get PD), but have a problem when he is mean to our kids (who try, but don't really get PD).

An example: he mumbled something yesterday and one of our kids said "What, daddy? I can't hear you." and my husband said "Fine, that's probably just as well." very loudly and in a nasty tone. What the heck? I have talked with my husband many times about how we literally cannot hear what he is saying and to please speak up. He has been referred to Big Therapy but has refused to go (another story for another day, sigh).

A few days ago he fell and our daughter was the first to rush to his side and ask if he was ok. He literally yelled at her "I'm FINE! I don't need your help!" She burst into tears and ran to her room.

He is increasingly getting annoyed by the noise the kids make, the things they do, the schedules they have, etc. If they are laughing and playing together, he gets upset and tells them to be quiet. If we are in the car, we can't listen to the radio or a CD because that bothers him too. They can't bounce a basketball or practice the piano. Kids are noisy and they need to laugh, run around, and play, and he increasingly gets annoyed when they do that and they are increasingly resenting being barked at for being kids. What do I do about that?

I understand that he feels like crap, that he is so very frustrated that he can't do the things he used to do, and that he is sick and tired of being sick and tired..... but it's not our kids' fault. How do I keep PD from stealing their childhood?

And to top it off, my husband bookmarked a porn site on my laptop (he has his own bigger, better computer so not sure why he used mine) after I had I asked him not to use it for those things. Last week he had used it to watch porn and left the site up. I was mortified when I opened my laptop and there the video was, on auto-replay. Our kids are allowed to use my laptop, what if one of them had seen that? Yikes.

By LOHENGR1N On 2016.01.03 00:43
Lurking, You"ve got an ongoing problem with no easy fix that I know of. Your children are getting older by now (we have been on the forum for awhile now). I know you delayed in telling them what was wrong but they know now and as for Parkinson's stealing their childhood, well you can't stop that. They can have a childhood but P.D. is in it. It will always be in it. I know that sucks but it's the way it is. When they cannot hear what he said do they turn down the background noise? The cd or music? Go into the room where he is and ask? It's not hard and can teach them polite communication skills, Yes it sucks to have to do it but it shows they want to hear. If they just yell from the other room then he has to try to yell out to them probably with the same result. Maybe a sit down with all involved would help? He has to try to project his voice louder and to help the kids turn down the noise or come closer so they can help hear? Something like that? The "meanness" I'm thinking might be interpretation of tone. We don't have the full range of inflection we used to so we may say something and it sound short or snapping when we don't mean it to sound like that. The way you describe the fall and his reaction it was probably embarrassment that he fell and his reaction was fueled by being mad not at Your daughter but himself or P.D. for falling and it just came out that way. I know it is a mess I'm young onset too my children were 10, 8 and 3 at my diagnosis. The computer thing may be related to med's stimulating his pleasure center in the brain and some tweaking of it may help. It's a tough path to trod down and I hear ya my friend hope this helps some

By lurkingforacure On 2016.01.03 07:05
Thanks, Al, I so appreciate your input. We were actually in the car when my husband made that comment so distance is not the issue. That would be an easy fix! Our kids have known for awhile now that they have to be in the same room if they are trying to have any conversation with their dad.

If it's not too personal, do you mind my asking how your kids handled your PD as they grew up? Did you have a good and loving relationship with them before PD? Had you been an involved parent before PD? I think that is a big part of our issues in our family.

Because the meanness is not just tone of voice or facial expression (which I've told our kids cannot be helped), but behaviour. For example, my husband leaves the room when any of our kids has an issue, be it a disagreement, a bad day at school, a problem with a friend, etc. One night our daughter came home in tears and as soon as she walked in the door and he saw her face, he fled without even saying hello. You can imagine how this made her feel. He walks out if there is the slightest issue, which does not foster a healthy parent/child relationship (our oldest believes he will be glad when she leaves for college, how sad is that?)

One of my friends told me recently that my husband is jealous of the time and attention our kids need from me, and is competing with them. I do see that his needs are increasing (both physically and emotionally) and those increased needs do conflict with those of our kids more frequently-I just can't be two places at once, listen to more than one person at a time, etc. Perhaps I need to join a psychology forum as our issues may lie more outside the PD realm. Our youngest has actually told me that we need family counseling but that it wouldn't do any good, which was heartbreaking. Again, if you don't mind my asking, did you do any family counseling when your kids were still at home? And if so, did it help? Please don't feel obligated to share if you aren't comfortable, I realize these are personal questions.

By jcoff012 On 2016.01.03 12:19
Your original statement is the reason I came to this board, only you put it much kinder than I, right Al? ;) I believe my question was on the line of "is being a jerk part of having PD?"

It was, as always, Al's comments and encouragement that got me through a particularly surprising, albeit sad, confrontation with Carl...over something stupid, if I remember correctly.

Al has often been the perfect go to person here, and has sage advice...his counsel has put me on a wonderful path of acceptance and tolerance. I know you know that, too.

In the vein of the conversation, a long time ago, I asked our nieces and nephews how their grandma's PD affected them, since they were 4 and 5 when she was dx. They said it was hard to communicate, sad to see her not being able to come to school functions, etc...BUT they remember her as "Grandma" and that was how she was...they accepted her limitations....part of the reason is their parents always talked about PD and allowed them to ask questions. They had a lot of questions. You see, for the first four years of their life Carl's parents watched them daily so his sister, their Mom, could work. When the Parkinson's came on it came suddenly, so Parkinson's conversations became paramount.

I am sure others can help better than I. All I know is we are honest with Nigel, even when he weeps and says, "But, I don't want you to have PD; I don't want you to die." Carl always hugs him and says,"Neither do I, but we have lots of time to have fun before that."

I wish I had good advice. We had four kids, so your additional burdens must be huge. I hope someone here helps you along your path.

By VioletV On 2016.01.03 14:06
I'm responding to your heartbreaking situation.

I have so many thoughts, but I'm only going to express this one.

I think this is an issue of accountability. Perhaps he can't help SOME of the bad behavior. I think though that being straight with him can't hurt.

When my husband is harsh or shouts at me I will tell him. Straight up. "That was harsh and it's not ok to do that." Not in a mean or angry voice, but in an informative voice.
I think that it would be really hard to begin to do that after a long period of your husband's being able to do whatever he wants.

I'm assuming you've asked him "what's the story. Daughter was very upset and you left the room? What was that?"

I think that any person can be accountable within the limits of his ability. Is your husband able to be accountable at all? Maybe it's time to explore with him the possibility of living somewhere else if he cannot stop harming you and the children.

Does he know that he is doing damage?
Does he care? Would he have cared if he had not had PD?

I hope my questions themselves don't come across as unfeeling. I just am experiencing a strong protective sense that you and your children deserve better.


By LOHENGR1N On 2016.01.03 17:04
Lurling, I'll try and answer your questions. First I tried to find out all I could about this disease. I researched and researched. I figured it would not do to tell my Children and not be able to give some answers because there would be questions, After all they have 50% of me in them and I knew I wanted answers and so would they. They didn't necessarily have to know everything about it but I figured I wanted to be able to answer whatever their question was in as least a frightening way as I could. They asked and I answered it seemed to work and satisfy them. They don't seem to have been hampered or traumatized by the process. They have grown into their own people and made me very proud the way they turned out in Adulthood. After Parkinson's came into our life I made it a background thing as much as I could. You know not a but I have Parkinson's Disease so no. At times things I would have trouble doing or trying to do it was a well I don't know if I can do that but I'll try if the P.D. gives me trouble I may have to stop or drop out but I'll watch. Not a Hey I've got P.D. think about that kind of stuff. The first decade or so of my disease I viewed as a okay I've got Parkinson's Disease well then P.D. you better hang on because you've gotta live with me I'm in control of my life not you thing.

Yes We had a good relationship pre and after diagnosis I'm stubborn at times and I wasn't going to let P.D. spiral our lives out of control or scare my Children if I could manage it. Yes I was involved with them before P.D. too. I was a cubscout leader when my son was in them. Not to toot my own horn but at the banquette at the end of the year when they handed out the certificates for the leaders when they called my name every cub scout there stood clapping and whistling and stamping their feet. (guess I made an impression with the boys when I chaperoned the trip to a game farm amusement park) but I digress). We took walks after supper almost every night and my children learned wild flowers, rock and minerals, animals, etc,etc so yes I was and am still involved with them. But most of my wisdom I now relay to my Grandchildren when I see them and get to spend time with them.

No I didn't have counseling or go to family counseling. I believe you have to be very careful with that. And over the years here on the forum We, You and I have seen posts which vividly point that out. Where a caregiver posts that well the therapist sided with me He's (generally) not doing anything or not trying or the well you have to tell them this or that kind of thing. True there are some who use the disease as a excuse but most do not, most are trying to cope and fit in. With all the medicines and dystoina , tremors, balance issues, sight problems, falling and freezing that we're trying to hide from you. Our med's are mind altering and can change us as does the disease. I once said in the midst of a good mess here that counseling without a counselor well versed in P.D. you have two apples trying to make an orange become and act like an apple. We once were an apple too but the disease and medicine turned us into oranges. And we cannot behave and function as an apple any more. We can hang from a tree as apples do, but even then we don't "blend in" and act like apples. It is very rare to find counselors who will tell you no I don't know much about problems and dynamics of Parkinson's Disease and be wary of those who claim expertise in P.D. problems because they are constantly evolving with med's and reaction, progression of the disease. It's a personal choice. Throw family into it and wow, teenage angst, interpersonal relationship problems can become a huge problem or mess. It's a personal choice and either way it can be rough, I'm just giving my take on it. I wouldn't say it will work or not depending on your expectations going in. If you're trying to make an orange into an apple it probably won't work but if looking for a nice bowl of fruit that knows it's not all the same and just looking for common ground and a semblance of functional relationship then maybe it would work but I can't say for sure. I hope I'fve answered your questions if not let me know and I'll try again my friend. Take care, best of luck and hang in there.

By lurkingforacure On 2016.01.06 21:15
I am very thankful for the replies, especially Al with his unique perspective. It sounds like those that I know with kids who have handled PD in the family pretty well had an active and involved relationship with their children before PD hit. That is not our situation, sadly. Dealing with PD in the family is made so much harder by our kids not feeling like their dad loves them or even likes them (our oldest in particular), and accusing me of making excuses for him. Our children were all planned and I know my husband loves them, but perhaps not in the way that they needed and need. He worked all the time before PD and was really not involved with them or their activities. I think that's how he was parented and so he is just following what he knows. It's definitely not how I thought our parenting journey would be, but that's what our kids got and now we are dealing with the consequences of that type of relationship. It has taken me a lot of time and thought to see that these are issues outside of PD, although made much harder by it.

I also believe in accountability, as Violet pointed out, as much as is possible given someone's limitations. I have many more years until all of our kids are out of school and the house, and have decided that perhaps the best way to try to keep the peace (because I am being constantly pulled to referee the spats between this or that child and my husband and it's exhausting and time-consuming and impossible) is to keep the kids really busy. I hope that trying this approach will help, because I kinda don't have any other ideas. Thank you all for your support:)

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