My ex-husband Mark was diagnosed 12-11. His sister probably has HD as well and just found out about Mark's diagnosis a few days ago. Our 3 children (15,17,19) know but Mark's other 2 children (24 and 28) don't know about the HD diagnosis. Now, Mark's mom(Jo) is actively dying in the nursing home. She does not have HD that we can tell, has had dementia for about 10 years. We think it came through Mark's dad who died young at 62 from heart disease. Anyway, I am now trying to figure out how to manage all of this family and the shadow of HD coming together for a funeral and Christmas. It is so much and I feel like the only adult for miles. Oh, and Mark's mom's condo that has been on the Market for 5 years got an offer yesterday and they want to close on Jan 3 but I believe Jo will pass before then so there will be a delay as we try to sort out the legalities. Also, she has been on medicaid in the nursing home so proceeds from the Condo will go to the state (WI). I am trying to figure out how much of those proceeds can be used for the funeral as there was no funeral trust set up before Jo went on medicaid. I hired a lawyer this morning to research this question as the first 10 calls I made to state agencies, funeral homes, banks, etc could not answer this question.
I just needed to vent.
Jackie

Very sorry to hear about this stress. Not a nice thing to have hanging over your head at Christmas. Find what joy you can and be good to yourself. You will need energy and strength to get through this rough time.

Thanks Eve,
Things are nuch better now. It is amazing how some sleep helps put things in better perspective. We have a houseful now but I think this is all as it is meant to be. We will be together to support each other. I hope every crazy, mixed up, less than perfect family can have a joyful Christmas. I know we will find joy regardless.
Jackie

I understand the feeling. Lost a sister on Christmas Eve a few years bacn and I was diagnosed the next December. Not fun anytime.

Do you have to deal with all of this at once or can you prioritize. I'm only trying to make a suggestion to lessen the stress. Some things will take care of themselves at the proper time. My children (similar in age) to Mark's didn't pay a lot of attention or were in denial when I told them. They are pretty well able to handle things better than we think at that age although it wouldn't be good news at Christmas.

Vent if you need to.

My best friend is from WI. what part are you from. They lived near Fond Du Lac. His family is still there while his wife's here.

Mike

I am in La Crosse. Things have settled down here and despite it all, we had a good Christmas.
Mark's sister was here because their Mom was dying. She and her family stayed at my house and Mark was here most of the time. We all met with the funeral director this morning to plan the service. The big joke was how to but my name in the obituary so we decided to just put it in like we were still married. Such a big change in attitude for me compared to last year at this time.It is weird but since we have this diagnosis and I know that it is what ended our marriage, I am much more tolerant of Mark's symptoms.
Mark's sister and I were able to talk about what she is going through. I gave them the physician's guide and some other materials. She has an appointment later in Jan to be tested. I think it is really helping her and her husband cope with her disability that for so long has gone un-diagnosed. She even saw a neurologist who missed it. She doesn't have too many movements but speech and cognition problems are pretty disabling.
Mark's older 2 children are not going to be able to come to the funeral on Sat. I am relieved as I really am not ready to tell them yet but we will need to soon.

Hang in there Jackie, it will level out in time. Glad things have settled somewhat and everyone could muster together. Simplicity is best sometime.

I think misdiagnosis is not uncommon. I had several as well as surgery.

Hang in there.

Mike

Wow, surgery even? What was that for?

Hi. I wanted to make you aware of a "lady bird" deed (although this can be state-specific) as a way of preserving the proceeds of your MILs condo. A good estate attorney can draw one up for $500 but has to be executed before the death of the owner. Just something you should check out. My mom is 70 yrs old in a nursing home with advanced HD.