Hi ,been a very long time since i was here.
Glad to see the site is still up and running.
Im the wife of a HD spouse.
im 57 now ,hes 60 lol.
Started this journey in my 20s wow.

3 kids later.one tested negative for HD,other two dont wish to be tested now in their mid 30s .
Still no symptoms .on the outside anyway,few holy crap moments though.
Froze in my tracks with fear.But okay just nothing?

I have lived for so long in fear and holding my breath,im not so sure i will ever in my lifetime be able to sit back and say its over.Just breath!

We still are running the gauntlet with HD ,we lost a long time ago.But not before it took everything in its path.
And still taking today.
I go to see my husband everyday in the care home,he's my Bubby i call him.
Totally bed ridden,hasnt talked in years,i make sure all his needs are met with a very careful eye,wich never closes lol.
8 yrs now.
Im tired,most days i just go blindly through a day.
I have been watching his changes,as he still continues to decline,he sucks on his finger now,his eyes roll with the most vacant look?

He is on pureee,and thickened fluids,but i make it so proud to say tastes pretty darn good .
Kids havent seen him for a long time.but i understand,and i do love our little alone time.
I sit and stare out his window ,every few min or so,i glance over.

People used to ask me does he know you? I would say yah i think so.Then is was im not sure for awhile,but now its No .
Im not blind i can see he is gone.
Is that a blessing for him ,i think so.

But when people look into my eyes ,i think they can tell im gone too.
Been a very long road,im tired.

The other day i asked myself a question wonder if HD is finished with him yet,other then the HD he is pretty darn healthy.

In our home you will find Zero litature of HD or even a conversation about it.
Almost like a ghost that hides in the walls,we cant see it ,but we know its there.

Its Christmas time again,i will not decorate his room,and when i leave i never say Good Bye.i just close my eyes and kiss my hand and whisper I luv you.

Guess my memory bank is flooding ,for me to be here.
Feeling really alone.
Im glad he cant talk lol,although i do miss our fights,wow we had some doozies.

I take meds to get through the days,helps to keep the tears at bay.
I know this journey will end,but how much more will it take before its over.

I try so hard to be sensible and strong,and be grateful and get on as best i can .

But its hard,too hard.Im me now ,most dont know the old me,be so long frozen with guilt and fear,worry and stress.
kinda not fun to be around.

People dont want to be around yah,when you cant hold a conversation past the weather.
Ive never said NO so many times wow.

Ive come to believe,i just dont belong in the real world,with people.better to be silent and go about my day.

HD i knew your path was viscous ,but at least you allowed me and my husband to still grow old together.

In a simple way in the end,if i had a chance to pick a different husband ,i can safely say NOPE ,He is worth all of this.

If the whole world was watching i would still choose to dance with him

Our tree is up,oh the guilt,and the memories the ornaments hold.was hard.But for our kids i have to stay strong.

Merry Christmas to everyone.
Keep making new ones ,even if there as simple as sitting at a bed side watching White Christmas ,over and over ,cause that was his favorite movie .
And thats my job to keep his memories alive too.

Hugs sorry for my venting.
Alot inside .shhhhh safer there.

what a coincidance. I haven't visited here for what seems like years also. but just now I missed a book mark and hit HDLF.

I am the caregiver for my Wife. Before that, We took care of her younger Sister till she passed (and then the Wife's symptoms started. I can't recall how long ago that was AND I preferr not to think about going through those years as I was very near having her commettied.

It has been atleast 5 years now since I quit work to care for her. I basically carry her around the house from the bed to the couch to the bathroom. All the while she has movements that Bruce Lee couldn't block.

I can understand about 25% of what she is saying.

I feed her well. like we just finished the midnight snack while she is in bed...two spam sandwitches, a large Hershey bar and a bowl of cherry icecream.

She greatly enjoys her TV shows and our "conversations"

I just hope I can out live her and keep her as happy as I can

It has been so long I don't know If I would ever go back to the "real world"

Thank you both for sharing your stories.
When I feel frustrated with my hubby, I will think about your posts.
I will also think how there is only so much time left and to try to count the blessings instead of focusing on trivial things.
He is starting to become symptomatic mentally, but takes very good care of himself, so we have hopefully a lot of time left.
I'm not at a caregiver stage yet, but your posts are bringing a glimpse of reality into my world.
I do feel sick with worry about our son.
I pray for a cure or treatment. It will probably be too late for my husband.
I am thinking of you and sending you best wishes for continued health and strength.