Our Story Continues...




And eventually the anger does subside. The pain, the hurt, the all-consuming, gut-churning ache eases a little. Just a little...Where once I thought I could never get through a day without a painful reminder, when it felt that I had no reason left to rise in the morning, when wanting to know the why tortured my brain incessantly, it did get better....

Yes, it did get better! Ever so slowly it got a little easier, a faint glimmer of hope would peek out at me on occasion. Once again there was a reason to smile, once again laughter escaped from my lips...my inner strength began to return and I felt like I could move mountains. However, that was short lived.

Time has replaced the anger with a profound sadness...sadness in knowing life will never again be what it was. Sadness that no amount of love can chase the disease away. Sadness that no matter how hard I beg, plead and pray there is no hope of things ever being different. Sadness in knowing that this disease will continue in a downward spiral. The sadness is not for me though, but rather for the one that is trapped inside of a failing mind.

Even with all of the sadness I am thankful. Thankful that I did experience the greatest love of my life. Thankful that there were many good years before the monster took hold. Thankful that he is still here even if only physically, but with a forever altered mind. Oh yes, I am thankful.

I sit quietly and watch him when he doesn't know that I am and I wonder. I wonder how does it feel to be him? I wonder how much he struggles with the tortured thoughts? I wonder does he even know how he appears to those around him? My heart swells and silently breaks for him! There really is nothing left for me to do but love him and support him with only the memory of the man he was before this disease began it's takeover.

For you see I am so very good at pretending. Good at pretending that everything is fine. Good at pretending that I can do this alone. Good at pretending that I don't feel the pain. Good at pretending that the constant barrage of negativity doesn't sting. Good at pretending that I don't need to be loved in return.

And it is so very hard...

This is full of emotion and well worded. I feel for you, and can understand so well.

Thank you for sharing your feelings.

Its 530 am here i read your post,i want to reach out and hug your pain away,but i know i cant.
Today i will see hubby again,just like a normal routine.
And at the end of today we will both be just one more day weaker.
So much sadness and pain our hearts cant really take ,but some how we do.
People tell me take a day off ,take a holiday ??? im thinking ???? ,im thinking how.
People ask how are you feeling,doing etc.
I look into there eyes and i lie.cause the truth be know, they really dont want to hear it either.
But the honesty is the pain,fear,worry,and negativity of it all is written all over our faces so why do they ask?
Im so glad you posted your feelings wow it is like a hug for me to read your words as they comfort me to just know
Iam not alone in how i feel.
So sending you a huge hug and a big smile ,really not faking it

I have tears in my eyes. My heart has been touched.

OMG its so hard to explain how I feel and you explained so good I do feel your pain I am going thru the same with my husband.

Dear Dolly,
I just sat and cried when I read your post. my heart breaks for you cause I know exactly how you feel. I am loosing my husband of almost 23 years to this dreadful disease. I watch him slip away more everyday. He has been showing signs for a couple of years but he seemed to snowball this year. His dad and grandpa both died of HD. his grandpa was in his 60's, his dad 50's, and Donnie is just turned 43. I am so glad someone suggested this site cause I feel soooo alone. I have a lot of very supportive family and friends, but they have NO IDEA what it's like living with someone like this. when someone is diagnosed with cancer, or heart condition, or some other bad disease, you deal with that disease. with HD you deal with sooo many bad things rolled into one. I never know from one minute to the next what mood he will be in. His has really seemed to affect his mind, and his emotions. he only shakes really bad when he is upset. He does not rest at all at night. He is asleep but he is constantly fighting, talking, tossing, turning, and hitting me. He is on 2 medicines for this but they don't help. he is on Zolaft and Siriquil right now. they have increased his dosage 2x in 3 months. I feel like he is super-glued to my side. He is constantly calling me, I cant go into a room without him following me. when I go somewhere he's wanting to know when I'm coming home. He gets fixated on something and he says it over and over till its done. ex. getting his med. refilled. he's scared he's gonna run out. or calling to get the gas tank filled up. he drove me crazy one weekend till Monday when I could call for them to come. His grandmother was diagnosed with cancer last week and only has a few weeks to live, and he is sooo upset over this to the point I'm afraid it is gonna make his condition worse.
What stages is your husband in? is he in a nursing home?
It is so good to have someone to talk to. my email is eteeftaller@yahoo.com and you can friend me on face book if you'd like.
I hope you have a good day today, cause that's how I take it, one day at a time.
Elizabeth

That was lovely and I can totally relate..

I too sometimes miss "what was". But I treasure "what is!"

Wow! Very well put. I am watching my husband of almost 25 years just wasting away. I was just thinking how I have never felt SO alone, even though I am with him. I try to talk to him, but he either doesn't respond or takes things I say completely wrong. It is so hard to be in this position, of being with the one you love, but feeling the most alone on earth.

Hi you said that the medicine is not working my husband is taking rispidone 4mg a day and clonzopan l.5 daily it was hard to find the right medicine but so far this is what is working before he use to stay up all night it was so hard because I still have to work and sometimes he will go to bed at the time I need to get up to go to work, ask the doctor it doesnt hurt to find out , my husband just turn 48 years old and he got dianostig three years ago he does not talk much and just sit and watch cartoons all day once in a while he would go to the store with me but not to often still taking care of himself taking his everyday shower and feed himself, just taking one day at the time.