Well... after roaming the province for three months we finally got into the house. Lawyers took forever to release her money.
Sis is getting worse by the month, but still wants to do it all. She chokes often and I'm on bath detail now..lol
Eating is slowly becoming an issue, frequent tripping,gets confused easily.
Got a regular doctor..well nurse practioner..she was great..straight up kinda woman, she told me I needed to get home support going right away so have a nurse coming out early Jan to assess sis...as much as a break would be nice I don't really trust anyone with her.
I would rather do it myself but I guess it's a break for her too.
The local ladies have a get together once a month to play Ramoli and eat of course , it makes my heart happy to seen how accepting they are and how excited she is about going.
Celebrated eight months together last week and still having lots of laughs.
Question for out there.....we are redoing the bathroom, which would be better, a tub kit or one of those step in type showers.
I'm thinking if there is only a small lip on the shower it will be easier for her to step in then lifting for the tub..thoughts?

Colleen, i've been wondering how you guys are doing. Sounds like you have a lot going on, and in-home help will help for sure. You know, im still very early stage hd, and i love to bathe, but i can tell that if i get further along, i will need to switch to showering, because i can't imagain someone needing to help me in and out of a tub. I think if you just go with straight shower, there will be no trying to convince her down the road to switch to showering, and even as i'm just getting older, it's not as easy to step into a tub as when i was younger. My new home has grab bars in the tub, i didn't think i would use them, but i use them all the time, helps me just feel more secure. So glad you guys have a home now and are getting settled

Thanks for the input Barb, I was leaning the shower way. That first step is a doozie.
Right now I just hop in and shower with her, we laughed so much the first time sis was weak. Think we need double grab bars...lol
We are on our way to the Kootneys to spend xmas with her 7 year old, who is at his grandparents with the ex, sis has progressed so much
I'm almost nervous and find myself protective by not wanted her ex to see her...am I being silly?
I'm still bitter over his treatment of her.

Well i'm not sure about the ex, but, i think it might be really important to have someone have a chat with her 7 year old, before he sees his mom, to forwarn the little guy that there's some changes is mom, you know? That's too bad about your sis, i think many of us thought that once she settled in to her new life, that maybe the progression would settle down. Say hi to Kelly for me, and hope you guys have a wonderful Christmas

I was hopeful too that once we were settled.......
I had been wrestling with picking him up myself and then bringing him to the hotel.
Again thanks for your comment.
Will pass on the hello and hope you have a wonderful Xmas too.

Barb--Thanks for the Merry Christmas wishes. Before my sister Colleen could pass them on I read them myself.

Our oldest sister is progressing at lightening speed and there is no way in sight to stop her decline. Eight months ago she was being a wife, was still working fulltime and raising a 7 year old. After she left her marriage and as she let go of each responsibility she let go of huge parts of herself. Unless we initiate conversation she will sit there all day everyday and say nothing.She is alone in her own little world most of the time now. She only turned 50 this year.
She is breaking my heart too. Living with her HD and watching her struggle is even worse then living with mine. First off because it is my oldest sister and secondly because she still is and always will be a doorway to my future. It really breaks my heart to watch her sometimes...
My one sister Colleen went through survivors guilt when she tested negative and I tested positive. And that is how I feel now with both of my older sisters. I feel guilty alot because there have been alot of good things that have happened in my life this year. It has been the best year of my life (HD dragons aside)and the worst year of their lives. It makes me feel bad alot.
I can totally understand survivors guilt now...



Edited 2 time(s). Last edit at 12/24/2011 06:28PM by Kelly B.

My heart goes out to you, Kelly.

Love,

Paula

Thanks Paula,

It really brings home the fact that HD is a family disease because the entire family is effected when you are carring for someone with HD. I am not living with my HD sister but Colleen and her husband have been living with her for 8 months now. Relocating her was the only answer. But she has no friends here only her family. We are all hurting to watch her struggle to do things that she use to do without a second thought. Her chorea is constant. It is Colleen who has the full weight of this on her as our HD sister lives with her and she is providing all her care. I pinch hit for her sometimes when she needs a break but she is hesitant to lean on me too hard or ask more of me because I have HD too and she is afraid of stressing me out. We have a very small family...Colleen insisted that she did not want me living in the same house as my other HD sister because she was afraid of the stress of it making me progress quicker myself.
Anyways Merry Christmas Paula and take good care.
Love Kelly B

Hi, Colleen
Sorry to hear that your sister is having trouble. I like the shower that I had installed in for Tony.
First of all, it is huge…about 6X6. It has no doors (glass or others) to fall into and break. It has three water sources, a hand held shower head, one in the ceiling and a regular one from the wall. The water hits the back wall and has never gotten to the outside of the shower. The floor slopes down to the center of the shower just slightly to allow the water to drain but he can still wheel his wheelchair into it. He can turn his chair around in the space. There is no step up, just a slight “speed bump” at the door.

It feels a little like the showers we all used in phys ed!

We had grab bars installed but had to have more installed. He wanted a long one installed at about five feet and one at over six feet. They look a little unusual, but whatever works..right? We put in a commode chair (knowing that it would eventually rust) because it was lightweight and he was able to move it, but yet it had a very wide base and he cannot turn it over no matter how much he moves in it.

Our old bathroom would have been too small to get even a walker into so we converted a garage and built a garage on the other end of the house. I wondered if it would be worth it years ago, but it certainly was. I was lucky to be able to make the room.

The walk in shower is the way we will go, makes so much more sense.
Sis bought a house ( we call it the hippy shack) which needs major renovating so we can cater it to be HD friendly.
It is a one bedroom so hub and I are in the livingroom right now.
Two bedrooms have just been added and hub is working on the wiring, we should be in our new room in a few weeks. Woohoo.
As for grab bars, I'm thinking a six pack, ideally if they are at key spots then sis in always within grab distance.