Shelly, Patti, Greg, Kylisa, Beverly,& Suzy,
I understand where you are all coming from. I just joined this community a few moments ago.
First I am truly sorry for your loss and all of you who are suffering with this disease whether you have it yourself or are caretakers.
ALS took my Uncle from me and rocked me to my core.
I've been through a lot and seen what cancer and heart disease can do to people, but I have never seen anything like this.
I lost my dear Uncle to this dreadful disease almost 3 years ago and it forever changed me.
Today would have been his birthday! Happy Birthday Uncle John!
When we found out he has ALS we were all confused at first and then devestated.
His form was so aggressive that it took him in just 6 months from the day he was diagnosed. Looking back it was a blessing I guess.
Just prior to his diagnosis my Aunt and Uncle moved one street over from me, (prior to that they were about a 1/2 hour away)
They are like a second set of parent to me and my Uncle was one of my best friends, and confidants. We laughed together every day. I miss him more than you can imagine even though I know his spirit is with me.
My Aunt was not physically able to care for him, so I did the best I could along with a home health aid until it got to the point where we could no longer lift him and we had to put him in a nursing home, which was a nightmare.
I work from home and make my own hours. I made the decision to take 4 months off of work to help care for my Uncle.
Now he has a son, and a daughter in law who have no children.
I have 2 children, a husband, a house to take care of, and a long standing 15 year career in the same field that I left behind for a short while.
I chose to make my Uncle my priority because it was clear that my time with him was limited and I knew I'd never get it back.
That was the best decision I've ever made in this lifetime other than to have children with my loving husband.
I also knew that my Aunt wasn't going to be able to do it on her own not only physically, but emotionally.
Her son was there for sure, but not daily, and not in the way that I was.
My Aunt and Uncle thanked me constantly. I didn't do it for the thanks.
I did it because it was the only thing I knew how to do. I couldn't imagine doing anything else. I know my cousin appreciated it, but he never verbalized it, and I'll tell you right now that hurt.
It hurt very much when at my Uncles funeral he acknowledged his wife as the one who was always there for his father and not me.
We can't change the hand we are delt in life, the only thing we can do is control how we react to it.
I choose to beleive that my cousin is still dealing with his own grief (which is obviously true) and I let it go.
I have also decided to channel my own grief into something positive so I'm sponsoring a fundraiser for ALS this summer and donating the proceeds to the ALS Association in my Uncles name.
My cousin has asked me to keep my Uncles name out of all the advertising and just donate the money in his name quietly after the fact. Again, yet another dis.
I don't know why and I don't care.
This is part of my healing process, and I'm doing it my way. I will respect his wishes, but I plan to highly publicize this event so that people know about it and will attend so that I can raise as much money as possible towards finding a cure.
WOW did I just vent. Guess I needed that.
The fundraiser if anyone is in the area will be in Manchester NH on 8-8-09 check out [ufor details.