Hello everyone, just joined and I guess I'm feeling a bit overwhelmed.
Situation:
Sibship of 3.I am 48 and tested neg in 1996. Little sister, 43 tested pos in 1996. Older sis tested pos in 2007. I looked after Dad until he died in 2001. HD took Grama and two uncles already.
Little sis moved in with me and hub last Sept. more for company than HD issues. Step-dad in moving in at the end of May to help. Okay do-able.
Then I get a call from older sis, she has left her husband and is in a hotel. I had not seen her in a year and half, me and hub load up the van and drive the 15 hours arriving two weeks ago and let me tell you, holy !@#$. Her soon to be ex is a bolthead and she has a 6 year old son. She has shared custody right now but she can not look after herself let alone her and child.
As much as I believe the child has a crappy father, he needs to stay for now. I am on good terms with him by keeping my mouth shut.
I will become her guardian next week and will begin dealing with stuff. HD has been under gag order in this little family.
Her son has been much misinformed and the bolthead has zero compassion and understanding.
I plan to take her home and care for her, the whole extended family is in agreement and will help.
The issue is the son, how exposed do I have his to his mom. Right now we will stay until he finishes school at the end of June, get sis settled during the summer and travel back for the beginning of school for a few weeks then we plan on doing some travelling with sis and do the things she would like to do while she can. I plan on setting up a webcam so they can still visit for now.
I have told the son just the basics about HD but have not told him that his mom will be leaving with us. He loves his mom but has been influenced by bolthead and can not be left alone with her for both their safety. He is not a respectful child.
I would love to cut ties with son and bolthead but feel like a !@#$ for going there.
I guess I'm just needing to vent and looking for a solution to an impossible situation.
On a positive note I'm looking forward to being my sisters voice with the bolthead.
Any comments would be appreciated. Thanks!

Wow Colleen, just wanted to say hi. I love your word, bolthead lol. Geez you have a lot going on, and it sounds like you are doing an incredible job. Just wanted to say welcome to the forum, and hang in there

Thanks for the welcome Barb.
Just wanted to add that up until a week ago sis didn't know that her HD is as bad as it is. So many changes for her, it seems like her symptoms have gotten worse. I'm sure it's the stress and that she no longer has to hide her HD. Any thoughts on this?

Welcome to the forum Colleen. I know your 43 year old sister fairly well, because I look at her face in the mirror every morning. I am glad you have made it here for support there are alot of kind and companionate people here.
I am sorry our oldest sister is breaking your heart right now. She went down hill at lightening speed and went from holding everything together all these years to her entire life falling apart in a 3 week period. The realization of how little time she has left is breaking all of our hearts right now.
Words can not express my gratitude to you and your husband for stepping to the plate and immediately moving in with her. Your becoming her power of attorney is the best gift you could have given her both because as her family we can better protect her and because she does not have any desire to lead anymore, she only wants to follow.
I know you guys are dealing with a lot of extra BS right now. But the stressors you mentioned repeatidly will be much less of an issue once she is here and safely tucked between us. In answer to your question I believe her HD has gotten that much worse since you got there because the more things you take over the more things she is continueing to let go.
Keep strong and just keep taking one day at a time. We can do this and will do this...
Love your sister,
Kelly B

Welcome Colleen. Glad you found this forum - it is an amazing place for support and info. I think what you and your husband are doing for your sis is extraordinary - she is very lucky to have you.

Colleen, i'm in early stage hd, and i know for myself, when i first got hd, i found myself just hanging on so hard, trying 150 percent, just to try and keep it together, that when i was finally able to clear my plate, it was such a relief, and that is probably what you are seeing right now. She probably hasn't been coping for a very long time, but using all her strength to try and cope, and now is letting go. She may level out and recover a bit, once she is able to relax, that's hard to say, but she must be so glad that you and your husband are there to help her, hang in there, and so nice to hear that your are Kelly's sister

Thank you for the comments.
Sunday was a welcome day, I dropped the child off, as scheduled in the afternoon and I will have to say I was relieved not to have the responsibility.
Thus need to admit to myself that I can't look after both child and sis for any length of time. Sis is really affected when we go to Bolthead's, extra twitchy.
He is doing the bi-lateral slide from Bolthead to Soon-To-Be-Ex Husband Behaving Badly, he is focused on financials, shame on him.
We took in a chick flick at the movie theatre for stress relief.
Yes, I do believe she is letting go.Yesterday we went to the city for her dr. appt, she was extra confused, we wandered the hospital as she couldn't remember where to go. When asked ?'s she would say she didn't know and then look at me, one more adjustment, she is my older sister in name only.
Her condition is worse by the day. Could it be my cooking?
It was an emotional day as everyone is coming to terms with what's ahead. According to the chart sis is a solid stage 4. Adult son and Hub have both noticed the marked decline and are a bit overwhelmed. It's like we have a plan then things shift. Last night I cried myself to sleep and was the first time I ever remember thinking " I just want my mom". Go figure.
Today we go to the bank to deal with a bunch of paperwork and I will draw up a separation agreement from there, for Bolthead's perusal.
Her employer is keeping her busy, yes, she is still working, running on pure body memory I'm sure. It gives her somewhere to go everyday. I guess we are all pretending to a certain extent. She will find out this week when her retirement date is. She has a high security job where everyone is covering for her.
I did talk to a higher up last week and layed it on the line. They were talking protocol and I was talking reality, they got it. Her employer has been wonderful, even assigned a car and driver to take us to the city, we laughed how we have come a long way from the tar paper shack we grew up in. Ha!
Well.....thanks for the shoulder....time to start this day.

couldnt your sister get sick leave from her job and ltd if the dr said that she could no longer work because of HD?
Laura

Good thoughts Laura and yes that is all in the works. Met with the release office this morning and she now has a release date of beginning of July with her last day of work being the end of June. She will be given a medical release with all the bells and whistles. Again protocol prevails and they have been great.
Sis chooses to keep working to keep her busy and they find things for her to do with full pay. Plum I say.
We meet with the lawyer and bank tomorrow afternoon and from there I can arrange to see her financial planner.
This is all going so fast.

Just want to say WELCOME. As I often say, I'm sorry for your reasons for being here, but given that, I'm glad you've found this place.

It does sound like there are a lot of changes in the works, but so glad about the POA, her workplace being so understanding, and that all 3 of you sisters have eachother. Gotta concentrate on the positives sometimes.

Barb- You were bang on in what you said about "she probably has not been coping for a very long time, but using all her strength to try and cope, and now is letting go." That was exactly what she did. I have seen the same thing happen in friends of mine who have HD too. Well said.

Colleen- I can relate to those "I just want my Mom days", I miss her too. Though with that being said I know it is a blessing she is not here to witness this, her worst fears are coming true, as are ours. I wish they could do double time on the cure and be able to save our sister in time but her time may just be too short. Huntington's has been the "gift that keeps on giving" for way too many generations already. They are so close to a real cure and have various treatments on the horizon but it will no doubt still take a couple of years for them to make things unfold.
Good luck at the bank and lawyers tommorrow...may the force be with you...sorry I missed chick flick night...
Love Kelly

PS( By the way we actually went through our testing in 1997 it was in 1996 that we found out we were at risk for Huntington's.)



Edited 2 time(s). Last edit at 05/03/2011 11:43PM by Kelly B.

Hi Colleen, and welcome.

When you refer to your sister's "release date" and "high security" job, is she by any chance in the military?

The reason I ask is because I knew of a young man who became symptomatic while on active duty, so he was able to utilize his VA benefits later for care coverage, euipment needs, etc. He was very well taken care of through his VA benefits.
It may help with some of the financial strain you are anticipating.

Patty

Yes, she is in the military but until she is released I didn't want to be throwing that around, she is still sensitive about people knowing but I guess that is quickly becoming a mute point.
I have a date with VA in May to discuss what she qualifies for in way of the future. Fortunately she is will not have to worry about the financial drain.
The only fly in the ointment financially is Bolthead, I have started the separation agreement and once I have POA I can fine tune the figures. Sis is easily rattled about dates and amounts.
Once we get settled I will tap into things right away to stave off any burn-out, that's the one thing that has me concerned is still having time for my other family members as sis takes more and more of my time. Need to keep her busy enough to stay out of her head but not so busy she is exhausted.
She is looking forward to the move and being in the hub of things with the rest of the clan.
I looked after my Dad with no help at all but he was very passive and was happy to watch TV or listen to audio books or just listen to me babble on.
Sis is pretty passive now so I am hoping that this will be the case.

Hi, Colleen
A Canadian snow bird told me to wake up and read the forum and say hello to you. I am glad you are here. There are so many wise and caring people here to offer support and their experience to you. It makes the HD road a lot easier.

Your mom was always so proud of her three beautiful girls and I am sure that she would be pleased that her family is pulling together to support each other and she would be especially proud of you for your strength and courage as you deal with your older sister and her family. You are greatly improving her quality of life. Your step dad will be a help and life will settle down for all of you. Big changes in our lives are always so stressful. HD families always seem to be ripped apart or pulled closer together.

I don’t know what you can do about the younger sister (the brat, as your mom and I always called her.) I guess you will just have to let her be the wise and wonderful free spirit that she has always been.

Thank you for your Hello Maggie and your encouraging words. Mom spoke of you often with fond thoughts. I guess in alot of ways I've stayed distant from the whole HD thing as I knew it would find me eventually. We are all at a good place in life time wise. As you know we were not raised together and have not really spent much time all together since "the brat" was a toddler so we are looking forward to hanging together and focusing on fun things and in many ways getting to know each other all over again. Just think of the trouble we could get into

Update on Sis....
Have now moved sis to BC and am in the process of finding somewhere for us to live.
We have had a bunch of family drama these days, weeks, months and have been doing quite a bit of traveling, I was looking for advice.....
Seems like sis is going downhill quickly, even she has noticed and was tearful today about it.
Could it be that now that she has retired and she has no schedule she can just let it go or...
am I stressing her out with all this activity?
She wants to be the hub of things but is twitching more than usual,ie: I do musical recording and play in a band so she likes to come to the studio and hang. Also I'm a businesswoman so there are always calls, faxes, texts...you know, stuff like that.
Sis wants to do wing night...we go, she wants to go to town for a coffee...sure, how about that Bluegrass Festival, yeah...she's in, can't shake her.
Is this keeping her busy or overwhelmed..... yes ...I've asked her about it but hey she's pretty agreeable to anything...
Any thoughts would be appreciated. Thanks.

Hey Colleen, wow, you have been busy! Hmmm, having hd, this might be my thoughts. Yes, she was very busy before, and she is busy now. But in between these two things, she has suffered a great loss, the loss of her job, which is a person's identity, the loss of being a mom, the loss of her independence, and now, busyness, but maybe without the time in between to grieve her losses, and slowly find her new identity in her new life. Do you see what i mean? I don't mean don't keep her busy, and also dont let her come to a standstill, but maybe bits of time to herself, so she can process and acknowledge her grief, and maybe just slightly toned down business for a little bit, and she will pick up the speed as she begins to find the new her. I also think, that if she is sad that she sees herself declining, don't deny that is happening, acknowledge that, and tell her that's ok, it's to be expected, with all she has gone through, and that she will feel better soon as she gets used to all the changes.

Thanks for your thoughts Barb........
Yes, many adjustments to get used to and it's far from over...like I say there is a lot of family drama going on about non HD stuff.
Have still kept her in the loop but leave out many of the smaller details so she doesn't obcess..
Her past life keeps dogging her like a bad smell, ex issues, son issues, paperwork retirement issues lol! The hits keep coming.
Right now we are staying at Dad's and are having a time finding a place to rent that can accomodate sis's needs, I just want to get her settled so she have a bit of continuity in her life. We are now considering buying a place.
She has been emotional these last few days and I think that the full impact of life from here on out has been weighing on her.
I reassure her often that we are all in this together. She wants to come with me where ever I go which is fine but I worry about exposing her to all the chatter of things, my life often changes on a dime.
As this situation came from left field it is taking me some time to scale down my life.
Some days she is fine and other days...wow. I know she needs to stay busy but she is sooooo tired at the end of the day, but of course if she has a nap she might miss something lol. (Older sister syndrome kicks in)
I guess I'm looking for reassurance that I'm doing okay by her.
We are having a great time getting to know each other all over again and do stay focused on fun things.
Bottom line...I'm having a hard time keeping up!

I bet you're having trouble keeping up lol, i feel exhausted just reading your post LOL LOL I think you're being Very good to her, and i think you're just gonna need time to catch up with everything too Hey, i live in Mission, come buy a house in Mission lol

Hey Colleen ,where about in B.C. live in Lower Mainland here. Just don't buy in Abbotsford or any way near that Abbotsford Hospital because if your sister needs to go there for any reason she will not be treated fairly in my opinion wich is based on experience.P.S my sister just moved in with about 5 months ago.At first was a huge adjustment scared to death though sis has a history of drug and alchohol use. Where she lived before was bad situation so felt compelled to let her come.She is also very ill also a not curable disease in fact two of them.Although as time passes omg she is amazing she cleans my house,laundry she pretty much does it all for me.As I cant seem to wrap my head around much of reality these days.Although she is everywhere in my life right now,from only seeing her maybe once a year to 24hrs a day.Big adjustment ,overwhelming and exhausting ,it is like having company 24 hrs a day sometimes.Ive kida learned to tune her out sounds mean hey and when i feel a bit squished i go for a drive in my car or go visit hubby in care home.But crazy as it sounds when i come home i'm happy to see her,she brought a lot of much needed laughter back into our house.But I know that she can't win her health battles like HD they always win in the end.She is realitivley healthy at the moment but i can see the day when she's not and still on my couch! But she is my sister and i will be there for her through thick and thin.Hope every thing works out for you and your sis and you can make many more good memories together