I have been here on and off for the past years just gaining strength by reading your stories and good suggestions. Last month my mom Mary passed away after 15 years with living with HD. It is remarkable how she was there to the end knowing we were there and understanding us. I always thought that she really wouldn't know what was going on but she totally proved me wrong. HD is such a slow moving disease that I didn't see the end coming. My husband and I had been on vacation the last week of October for our 30th anniversary. When I returned a few days later the nursing home called and told me she was at the ER. When I got there the doctor said, "you know your mom is at the end she has just a few weeks". Really? Already? I just didn't think she would ever give up the fight but she decided she was done.

There I was in the hospital room with her and she looked right at me with her clear blue eyes and I said "mom I understand this is your decision and we are supportive with your right to not eat and not drink." She blinked and raised her eyebrows she understood our conversation.

My mom was fortunate to say goodbye to her sister and her grandsons while she was still pretty good. The nursing home workers respected her and loved her. She received incredible care and when I was at the hospital the nurses told me she was in wonderful condition the nursing home should be commended. I want to tell you all that I would not hesitate to use a home but the our job is to be diligent overseeing their work.

She was an amazing fighter and the hospice says she fought HD to the end but that's the problem it gets you eventually. It wasn't until her last week that her feet stopped moving.

Unfortunately my dad did not live to see her passing after all his years as her caregiver. Somehow I always knew it would be me to be there in the end and as her oldest daughter I was honored to help.

I thanked all of the family for their unending support. Another surprise were the friends that didn't abandon her and the extended family that was there all through the years. It was amazingly long lasting.

It is time to take a break now from HD and all of it's power. I really need to reconnect with my family and friends. Thanks for your support. Stay postive and stay strong.

My condolences in the loss of your beloved mother. Thank you for coming back to let us know about her death. Her life was too short but it sounds like it was well-lived all the same. As with your mother, I hope it will be said of all of us that throughout our lifetimes we let others know how much we loved them and received love in return.

Hugs,
Marsha

I am so sorry for your loss. And thank you for sharing your experience with us.

Ish,

Your post moved me to tears. Sending my deepest sympathies to you and your family.
Thank you.

Carla

I was also moved to tears . . . I'm so very sorry for the loss of your mom!

Deepest condolences in time of loss.

What a beautiful post! How Inspiring you and many others are by sharing continued love, life and happiness throughout this horrid disease.

I'm so sorry for your loss. Sounds like your Mom was pretty amazing & part of a great family too.

So sorry for your loss. Your Mom sounds like a real trooper.

Laura & Pete

I am so sorry for your loss, and what a beautiful post about your mom (((hugs)))