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By lurkingforacure On 2009.10.27 18:54
I am putting this under a separate thread because I am just so overwhelmed by all of the caring responses to my comment about how we have not told our kids yet about the PD. Thanks everyone for all of the thought and concern, it means so much and yes, I do feel very isolated and this is THE only place I can really come for comfort. I have told only three friends, two of which have stood by me although I rarely discuss PD (their kids go to different schools than ours) and the other "friend" blabbed all over her neighborhood despite SWEARING she would not tell a SOUL and now I can feel eyes on my back whenever I am up at the school and I know she told so-and-so who told so-and-so who told so-and-so and it is very hard. I agree completely with all of you and really feel that over the christmas break we need to go ahead and let them know.

I am remembering a comment annwood made about how if she had known about the possiblity of dementia, she would have done things differently, taken trips, etc. Well, I am thinking that very thing...dementia or not, the physical aspects of PD will similarly preclude travel so perhaps what we may do is take a small vacation over the Christmas break and tell them then. I am not seeing a cure anytime soon and, preparing for the worst, sadly realize that each holiday may be one of the last that we can actually take a trip. So that is a loose plan I am working towards.

I should mention that, ironically, it was my daugher's school counselor who told me NOT to tell our kids until my husband was ready. As she put it:it is his news, and his to tell. I have honored her advice and his wishes up to now but as you can imagine, them not knowing is very difficult and I'd just as soon as get it over with and deal with the backlash against my kids from other kids at school. This is another fear my husband has, that our kids will lose their friends because no one will want to come play at "the sick house", as he calls it, or be friends with someone whose dad has PD. He remembers someone from his high school days whose father had MS or something, he can't remember, but no one would go there because the poor guy was in a wheelchair and the house was dirty and dark and depressing and their son had no friends. He doesn't want to be that same guy, with our kids bearing that kind of burden. Not sure how to avoid that, though, people are going to be how they are and feel how they feel, and we just have to accept it and move on. I can say that in my wise older age, but have some real concerns about how our kids will feel if/when this happens.

There are no easy answers in this situation and I know things are going to be difficult ahead in many ways. Thanks so much everyone for all your support.

By annwood On 2009.10.27 21:05
Lurkingforce, I feel for you and sense your sadness. I made the comment about the school counselor because they need to know these things in case certain behaviors become apparent in the children. Sounds as if you covered that base some time ago. Good for you.

I did not have to deal with small children but our grandchildren live a block away and they were here throughout my husband's illness. They did well and I think they may have learned an early lesson in compassion. They did a lot for their grandfather while he was alive and sat by his side as he was dying. Children can be very cruel but like we adults they will learn to deal with it. Much depends upon how it is handled by the school and the family. I think that you are very intelligent and strong. My guess is you will do this properly.

Please take that vacation and enjoy everything you can. I hope that you have many, many years before this progresses. We are here for you.

By Emma On 2009.10.28 06:08
I think you're making the right decisions regarding both telling the kids and going on vacation. One of my goals when my husband was diagnosed was to take him on trips while he was still able. He no longer is and we're both glad we did that.

I don't have young kids but we have 10 grandkids ranging in age from 6 months to 18 years. They have handled grandpa's illness well. We found that it helps to include them in his care to the degree that they can. For instance, at family get togethers the 5 year old is responsible for bringing grandpa his cane when he needs to stand up and for pulling out his chair at the dinner table. It makes him feel important and he takes his job very seriously.

Good luck to you and have a great vacation!

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