There has been some talk of my dad possibly needing to be placed "somewhere" in the near future. I JUST DON'T KNOW if he is at that point yet. I'm hoping you guys can give me your opinion. Here's the situation.....
He is currently living at his home with my stepmother. MOST of the time he refuses to take his medication OR go to his doctors appointments. He gets VERY VERY depressed and talks about suicide off and on. There has even been a couple of times where nooses have been found in the garage....but nothing has ever, obviously happened. When you confront him about it, he just flat out denies it. He tends wander off...which SCARES me. He will say he's going for a walk and returns 4 hours later. He does this a LOT. I'm VERY concerned that one day he may get confused and not know where he is. He just recently (in Oct.) officially stopped driving...thank god...he never got into any *accidents* but his vehicle definitely had quite a few bumps on it. THAT was overdue!
These are my areas of concern. The genetic counselor said that they're going to be doing an assessment on him to see exactly what he's capable of doing and what he's not. He still is eating fine and showers himself...
Does this sound like he may need to be placed in an assisted living type of place or a nuring home?? I DEFINITELY think he needs constant *supervision*. <sigh>
OPINIONS PLEASE!!!

I'm sorry your going through this with your dad. I know what a hard decision it is I went through it with my mom and my grandfather.
My grandfather went into a place for old people where ther were no nurses. This turned out to be terrible for him and he ended up dieing of cancer because we didn't know he was sick.
he did have late onset and died at 72.
My mom went into a nursing home which had many high and lows but looking back I think she liked having people around and coming to my house for dinner once a week. The last 2 years of her life were happy and she died in her sleep the night before thanksgiving. I wish she would have waited a couple of days.
But only you and your stepmother and the docters can make that decision.
hopefully someone else can be of more help!
Laura

Hi, Ivy,
I don't feel comfortable giving an opinion, because it's probably best to get a professional opinion . . . and since I don't really know you're dad, it would be hard to say. I know that a nurse from the county had to come to our house to do an assessment to see if Ray fit the criteria for a nursing home placement before he could be placed. I forgot now what exactly they call it, but it involved many areas of daily living, including mental, physical and emotional . . . Ray didn't really do a lot of wandering or have suicidal thoughts. He had safety issues related to falling, choking, toileting, showering, etc., but the assessment included a lot of different areas. Your best bet would probably be to have one of these assessments done to see if he did, in deed, fit the criteria. I'm sorry you're go through this; it's always difficult deciding what it is best and safest for our loved ones. Good luck to you and your family!
Michelle

Yes, the genetic counselor said that they WILL be doing an assessment, but WHEN exactly I don't know. Seems like they are taking their time...
Anyhow, I will keep everyone posted when I find out whats going on.

Laura, that is an awful story about your grandfather!! How AWFUL to have him get sick and NO ONE in the family even KNEW...!! Seriously, that is TERRIBLE

Ivy,
I know it was awful and I hate thinking of the suffering that he went through.
Unfortunately I think many people with HD in the past went through similar things because not much was known about the disease.
We never even new if he definatley had HD because the doctors weren't sure. I didn't know for sure until my Mom got it.
Laura

That's EXACTLY what happened with me!! My grandma died back in the mid 80's of what some family members *suspected* might be HD (after reading medical books trying to find out what was wrong with her, etc.) but her DOCTOR said, "she does NOT have huntingtons disease....people with huntingtons disease DO NOT LIVE THAT LONG!!" She lived to be 68. So after her dr. said that the family just left it alone and never thought about it again until 20 yrs. later when MY DAD shows up with it. THEN the truth was revealed! Unfortunately my dad was diagnosed AFTER I had my children. Had I KNOWN that this was in the family and that I was at risk when I got married...I NEVER would have had kids until I tested. I guess things don't always work out ideally....

My Grandmother was almost 94 when she died . she passed HD on to my Mom . Mom is 82 and just recently went into a nursing home . The caregivers there all find her very sweet . Mind you that is until they put her in one of those lifts db













'

Ivy may I ask where are you from ? The US ; Canada ....db

We are in the U.S.

94 years old when your grandmother died?! Wow...that's impressive! Your mother also has lived quite a long life so far...! Do you happen to know what their CAG #'s are?? I am curious since they both lived so long.....

ivy

I think my Mom's cag is 39 . I don't know for sure , because when they told us I think we were dazed by this info . we thought mom had a stroke and that was the cause of many of her problems . But it ended up HD . It blew us away . In a very old post , I had mentioned that I had said to the geneticists ," mom can have anything but HD , that's in my Dads family history" . HD was all around me and I had no idea at all . I did realize that my Mom , and her Mom had , and another family member , had specific oddities . Both my Dad and myself knew years and years ago that it had to be something hereditary . But we just assumed that we would never know nor did we think anyone could understand us if we tried to explain the odd behavior that seemed to be in the family on Moms side . Dads side I thought was just eccentric . Very lovable people who could take you in and out of their "wills" at the drop of a hat . I don't believe Dad has the expanded gene . He is 81 and has never shown any symptoms . My Dad came from a large family , one of his sisters and one of his brothers for sure had HD . But we suspect a couple more also had HD . When I looked in to our history I realized that HD has been there a long time . Even on my Dads side they live relatively long lives late 60's , 70's , 80's . All my best. db

WOW you've got HD on BOTH sides of your family?? That's too bad....((HUGS))

Yes my dads side of the family definitely has "oddities" too. They all seem to be manic depressive for one thing...my dad has always been "up and down" with his mood. I have an aunt who commited suicide (his sister) and my uncle (his brother) his married with FIVE kids and could never hold a job for more than like, a couple weeks. He is VERY moody, so to speak. Worse than my dad by far. A lot of them are very short tempered also. My father himself has always had a "quirky" personality. I try to go back and think WHEN he started "showing signs" and its so hard because he's always been kind of weird. I hate to say that because I love him very much, but its true... Well at least if you've got it in your family they live pretty long, still. That wouldn't be AS bad I guess...

I don't think I am the only one on the forum with HD on both sides of the family . I think Marsha knows others with HD on both sides of their families .By the way , That's the way I feel about my family with HD , you love them , but you can see oddities and like yourself ; we see those oddities over years and years .