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Topic Children's feelings and development Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2012.06.13 21:02
I hate to post about this because everyone here has so much on their plates, but I don't know how to handle this.

I don't even really know how to express this, other than to say that my husband seems to deliberately be mean to our kids. He will get his shoes on to go for a walk, and our youngest will run over, wanting to go with him. As soon as that happens, my husband will say "I think I'll go later" meaning, when the child is asleep and can't go. The face on my child is heartbreaking.

When I ask my husband why he can't just let the child go with him, how hard can that be, really, they are just walking together, he says he tried to nap and our kids were loud and kept waking him up. So he is angry, and taking it out on them by not letting them walk with him? Or what?

This is really affecting our kids who are quite young and I don't know what to do. They try to understand and be sympathetic, but when something like this happens which seems to be a deliberate effort to exclude them from an activity he is doing anyway, they don't know what to do. I don't either.

I have posted about this many times before, actually, and then deleted my posts because I don't want to complain. I'm grateful my husband tries to be active and can still dress himself, feed himself, etc. But this issue keeps rearing its ugly head more and more often and is taking an increasing toll on our kids. I'd take the kids for a walk myself if I weren't doing the dishes, taking out the trash, doing laundry, paying all the bills, you all know the drill. What to do?

By LOHENGR1N On 2012.06.14 00:22
Lurking, I don't know for sure the answers to the whys. I can hazard a few guesses though. I was first diagnosed I was 33. Divorced with three young Children ages 11, 9 and 2. The dilemma of how to explain to them Their Dad was sick, why his hands and arms shook so badly. (before the right medication and dosage was hit upon so the tremor wasn't so bad as at first) I remember reading up in The Young Parkinson's Handbook that children can tell (sense) something is wrong? Well in my case it was plainly visible something was wrong. If left to their own imaginations they can really blow things out of proportion imagining all kinds of stuff. So it is better to let them know a little, (they don't depending on age need to know everything) like Dad's got a sickness that makes him shake. I isn't contagious or "catchy" and you don't need to worry about it happening to you. Something to down play it and make them feel safe and that you're still going to be around for a long, long time. Sometimes you might not feel or be able to do something but you can still do a lot.

Most of you on the forum who have been here for sometime now know my feelings about MJF. However I do agree and give him credit for including telling his children they have a "Shaky Dad".

Now to get at my guesses and my own experience of Young on set and young children. You can't not tell them, for years PD has been likened to the elephant in the living room you can try to ignore it, pretend it isn't there but there are only so many times you can walk around it making believe it doesn't exist before someone says how come we have this elephant in the room and pretend it isn't? Or what's wrong and how come no-one wants to talk about it? This is the HARD part! Facing Our (Mine and Your Husbands) fears! Fearing that our children will think Us less a Father, a Dad because We are no longer the picture of health! We all react differently to this but in reality we act the same on a basic level. We tend to withdraw a bit at first. This is important that we do not withdraw much or for a long period of time as it becomes harder for us to then get back into the Dad role. We withdraw because we are morning the loss, the loss of being able to be as active and available as other Dads. We morn the loss of not knowing what future we have, how the progression will be, quick or slow, we're depressed because in OUR eyes we see ourselves as less a father. We know stress and nerves will make our symptoms worse, we may avoid situations that if some emergency crops up can we still handle it. We can, but we doubt ourselves. We're hard on ourselves! Children are very adaptable they don't demand much. They need our love, having trouble holding a book ? They will gladly hold and turn the pages for Us. Soft voice? So what they'll pay closer attention plus it's a bedtime story! It's supposed to be quite time! Children adapt. They'll go for a walk, try taking them, walk and talk with them. Play games with them, play slap jack pick up sticks are most likely out but play yatzee! We might not have the stamina for football or nine innings of base ball. Take them to the store, let them carry the change to count out for you they like helping and being important being included. What I'm trying to say is adapt and improvise they'll like it. I remember once taking my son and one of his friends to the store, I'm slower and instead of making him wait and poke along he asked if they could meet me by the fishing stuff? I said sure, when I was almost there I heard his friend talking to him...
Your Dad is so cool
What do you mean?
He lets you walk around looking by yourself!
Yeah.?
Well that's so cool my Dad never lets me go off in the store to see things mysefl!
I was cool? I was cool! Who'd of figured?

Also it is never too late to be cool DAD! Start trying! Everyone start trying you CAN do this! Before I get much more long winded here I'd better stop. But I'll answer these questions first Lurking; "When I ask my husband why he can't just let the child go with him, how hard can that be, really, they are just walking together, he says he tried to nap and our kids were loud and kept waking him up. So he is angry, and taking it out on them by not letting them walk with him? Or what?" Yes He is angry..angry because he got sick, angry because he HAD to nap..angry because he feels less a Father, Husband and provider for His family and angry because He doesn't know what or how to do something about it!

I'm an email away if he wants to talk ever heck I've got a mike, yahoo has a program to chat on for free or I'll give you my phone # if he needs it. We're all in this together and all need each other to help cope. It sure isn't easy and it gets really rough at times but that's what I'm here for to help if I can. Take care, best of luck and hang in there! Lohengr1n@aol.com

By lurkingforacure On 2012.06.14 06:52
Thanks Al, I get that. We DO try to include him and let him participate as he can, wants to, is able. We never presssure him if he doesn't want to or can't go. But this is different. Here, he is doing an activity he chose at a time he chose to do it. The child wants to participate WITH him. He does not want the child to participate with him. And it's not like he is working on a car or building a model airplance that a small child could not help with, he's just walking.

I know he's angry. We all are constantly coming to terms with this disease and what it robs us of every day. But to punish a child, as it seems to be, or push him and her away because of that, creates more issues.

My fear is the children will quit asking. When you put yourself out there but get rejected often enough, everyone at some point will quit risking the emotional pain. Then what-it's a lose lose. The family loses, and I worry about the effect on our kid's emotional development.

By Jane On 2012.06.15 11:04
Lurking, I feel for what you are going through and admire that you are looking out for your children's emotional health. I agree that a PWP has every right to be angry with all that goes with the diagnosis of Parkinson's. Yet I feel that all humans even PWP have a responsibility to recognize and express their anger without harming others. Having Parkinson's does not excuse someone from the responsiblity of being a father. When my husband acts out his anger I tell him that he has every right to be angry with how difficult life must be for him, but I will not accept the acting out behavior. His needs cannot always come before others' needs.

By LOHENGR1N On 2012.06.15 14:28
Jane, I completely agree, you should NEVER take your anger of frustrations out on a child! I in no way am condoning that or even slightly suggesting that is in any way shape or form right! The question was is he mad or what and punishing the children? I was suggesting yes he is angry and doesn't realize his actions are seemingly taken that way.

Lurking have you told the children about their Dad's illness yet? I'm sorry to seem bold asking this but in the past you posted about your husband not wanting them to know and not wanting to be lectured about it. However many of the things you are experiencing and resenting might be averted. It's never to late to tell them. Hiding the disease isn't working nor will it ever (heck it can't be hid forever). All it creates is confusion, bewilderment and in the end resentment. Sadly some of the resentment will be aimed at you when the children find out their fathers sickness was withheld from their knowledge. As I typed this I thought about our late friend Bandido and his tough love. I'm pulling for you and your family Lurking and I'm on your side! That said I don't know how to or what to say to help until the PD is out in the open in your family and then you can move on fighting the disease and repairing the damage. I hope you don't take this post the wrong way, it is done with the deepest love, compassion and caring for You and Your Family.

By karolinakitty On 2012.06.15 15:18
lurking...don't know if this guy can help you out...he writes about PD for kids and has what he calls Kids Corner...this is the main link for his blog. He's a friend of ours on facebook and I even enjoy his writings.......

http://www.jprovopublications.com/

By lurkingforacure On 2012.06.15 17:20
Thanks everyone, yes I actually just found John Provo this week and was touched by his mantra: Life is not always fair to you or those you love. Be strong, be kind, and be understanding.....something like that.

It's funny, at first when my husband and I talked about what we would tell the kids and when, it was a huge production it seemed to me and it never got done. He wasn't ready, he just could not do it, it was not a good time, there was every excuse in the world. Hell, I had to be the one to finally tell his dad, which to me was ridiculous.

Years have gone by and it is so obvious things are not like they are in other households or even like they used to be in ours. Just this year I told him that we must tell our kids. There is no perfect time, no best time, and waiting only makes it harder, for me and everyone else. I told him this summer was the deadline and if he does not tell them, I will do it myself. I hate getting to this point but I am not someone who does the denial thing and the last several years have been very hard. A counselor actually told me that my husband needed to be the one to tell the children because it was "his news". I have respected that for years, but cannot do it anymore. It is not right or fair to withold something like this from the children and I think by not telling them so far, it has actually made things much harder than they needed to be.

But what can you do, what's done is done and the only thing to do is push forward and not continue the same mistake. I do not think this is underlying the issue I posted about, though. Whether the kids know or not, my husband is still going to feel like crap and be so tired all the time, the kids will still annoy him when they are loud or wake him up from a nap, etc. I don't see their knowing he has PD making much of a difference on how he interacts with them, because he will still have PD. THEY may be more sympathetic or understanding, but I doubt their knowledge will have much impact on him, which is where my concern about this issue lies. Ugh.

By Pearly4 On 2012.06.15 18:35
I have a friend who's child's biological father is a drug addict. When the boy got old enough to ask questions she told him what she knew - daddy is sick, and he can't be a good daddy right now so he can't be around you. He has grown up into a young man without a lot of the "what did I do to make my daddy not want to be with me" feelings a lot of children in similar circumstances feel.

I would think the same sort of angle for you might relieve their minds a bit especially as they age -- Daddy is sick, its called Parkinsons. You can't catch it, but the doctors can't fix it either. Sometimes it means he can't be a good (or you may have a better word) daddy to you but we need to help him as much as we can and try to understand. It makes me feel bad and angry sometimes too.

Daddy seems a little passive aggressive to me -- maybe he's trying to force you to say it because he can't. Maybe he's just basically a jerk but somebody needs to be a grown up. And, sometimes counselors don't know everything!

By lurkingforacure On 2012.06.16 08:41
I think not telling our kids is a type of denial in and of itself, which I totally understand. My husband has told me that people treat you differently once you tell them you have PD, which I also understand. I've seen this myself with his family, and not in a good way, either, unfortunately. I imagine he is afraid of how the kids might treat him, based on this past experience, but they must know.

My husband is a wonderful man. If for many reasons he just cannot make himself tell our kids, then I'll do it. Anything emotional like this is incredibly stressful to him, so I too am guilty of procrastinating, because I have tried to protect him from anything stressful. I realize now that while this may have helped him temporarily, it only kicked the PD can down the road for all of us. I also know that if I am the one to actually say the words, I will start crying like a baby which will scare our kids more than they might otherwise be. This is all so hard, as if the physical challenges weren't enough.

By daisy On 2012.06.16 15:08
Dear Lurking, Firstly, please don't beat yourself up about not telling your children before now. Who is to say when it is the right or wrong time to tell them and we all have to do what we think is the best thing at the time. Trying to juggle keeping your husband's wishes along with protecting your children from this horrible reality for as long as possible was always going to be an impossible task. Hindsight is a wonderful thing and I think everyone of us can honestly say that there are some things we would have done differently if we'd had the benefit of it.

Now as your circumstances have changed and your DH illness is having a detrimental effect on the kids, I would urge you to tell them. You don't say what ages they are but what Pearly suggested sounds like a good idea. Obviously, if you can get your DH to do it with you, all the better, but if that is out of the question, then he must let you do it, in a manner and timeframe you think is best.

When my DH was diagnosed, it was impossible to keep it from my son who was very small, so he has known the reason his Daddy can't do the things that other Daddies do. But I have been amazed and humbled at the child's ability to accept and show compassion. Of course, there are still problems at times, so I certainly don't think I have any moral high ground but I suppose I'm trying to reassure you that kids have a wonderful capacity to accept things that we struggle with..

It may help them to have something else to blame instead of just thinking their Daddy is being mean. Their reaction to him might help with his way of dealing with them (which is what your original post was about) At the very least, I think it might help you..I can tell from your many posts that you are a very strong person, so you already know what is the best decision for you and for your family.

Please be assured whether you decide to tell them or not, we will support you..

By lurkingforacure On 2012.06.16 16:06
Thanks all, the support here is invaluable. And coming from those who are there, have been there, or will be there, makes it all the more helpful. It is odd how we give so much to our loved ones with PD, and yet are still able to give to each other here in support, kindness, and love. I never knew the true beauty of the human spirit until this unwelcome squatter named PD entered our lives.

It will be interesting when we tell our kids, and who knows what that will bring. I guess we will just cope like we always have, and do the best we can. I still hold on to the hope that a better treatment or cure is within our lifetime, which helps. Thank you everyone, I so appreciate it.

By LOHENGR1N On 2012.06.16 16:17
daisy, You're right no one can tell anyone when the right time to tell children about parents illness is. And I don't believe anyone is taking higher moral ground on this issue. What I'm trying to say is to get it out in the open so the healing of the family can start. It's being stuck in the stages of mourning of being diagnosed.

That being said Lurking you've probably caused more tears and grief to yourself over this problem worrying about breaking the news to your children and how they'll react than you'll cry in telling them. The behavior of tip toeing around the subject is causing so much stress. I went back in the postings there was a thread where many said just this and encouraged you to get the diagnosis out to the children. In that thread you had said you were putting a time limit and if it hadn't been addressed then you were going to tell them at Christmas break. I looked at the date, Lurking that was in 2009, I was amazed it was so long ago. The pressure must be immense in your situation! I really don't have an answer other than keeping the status quo isn't working. I'm not trying to be a mean b*st*rd or force the issue I knew it had been going on for a long time I just didn't remember how long. And yes to give the children news like PD is not easy, it may surprise you with their reaction as they would having something to base their fathers actions on instead of imagining it is some how their fault or that he just plain doesn't like them.

I know this is a very personal subject and can get touchy so I'll say no more about it other than wish you and yours luck no matter what or when you decide. I really do care and want the best for you and your family my friend! Sincerely Al.


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