Living with ALS

Hi. My name is Kelly and today is April 9th 2009. tuesday April 7th my Mom Sister and I laid my Dad to rest after his fight with ALS He was diagnosed about two years ago. The three of us literally watched my Father die. He faught with all he had. His sence of humor was there till the end. The illness started in his neck and throught. He lost his speech and then was unable to swallow. Next it started on his lungs and arms. Dad wouldn’t let on to any of us how bad it was but we could see it taking him over. My dear Mother was by his side all the way. My Dad came over to my house one day when he could still speak and told me that when he died he wanted to be at home. He told mom that to.

April of 2008 he finally got so he couldn’t swallow anymore. His nutrition was falling fast because he choked on everything. It was then time for the feeding tube. Mom and Dad went to houston to have a feeding tube put in. They came home and Dad was able to gain some wieght back. All the time his spirit were as well as could be expected. The illness then began effecting his arms and breathing. Dad couldn’t hardly swing a hammer anymore. Just before Christmas of 2008 his lungs began filling with fluid. Now it was time for a trach. Mom and Dad went to UT Tyler and had a trach installed. Ohh,,, Poor Dad. Now he new it was near the end. He spent aprox 7 weeks in the hospital and his lungs were almost full of fluid. The hospital told him there was nothing more they could do. He was on and off a ventalator to a BiPap machine. During all this machine changing he coded on us once. They were able to bring him back. He really knew he was done for then and signed a DNR and told the hospital he wanted to go home.

January 30th 2009 he came home. They gave him two to three days to live. Mom My Sister and I were determined to make him better. We set up Moms living room like an ICU ward. We did take care of him and he rallied like noone could belive. We leaned about changing trachs, battery back up packs for machine, blood pressures and heart rates, ect ect. Dad almost passed on Mom and I twice be fore he died and between just the two of os we togther rivived him. I know now how to give a trachiotaomy. Might not can spell it but I can give is and change trach tubes. My Dad got really strong and was pushing for each day that he could spend at home with mom and his dogs.

Thursday evening April 2nd at 8:07 pm Mom called me and asked me to come over. (they live next door) I went over to Mom and Dads and His lungs had began to bleed. We suctioned him the best we could. He was scared, I could see it in his face. I held his hand and told him to be real still and maybe the blood would clot. He nodded his head yes to me. I went home about 9:30. The next morning I looked over to Mom and Dads house,,, All looked well. So,, I came on to work. I was just about to call Mom when the phone rang here at work. It was Mom. She said,, Kelly come home now. It’s about 15 minute to Mom and Dasd house from work. He died just a couple of minutes before I got there.

My Mom did all she could for him. My Dad survived 6 weeks to the day being at home where he wanted to be. His birthday was March 1st. He turned 76. I know in my heart the hurt I have from watching my Dad die. I’d much rather have had him die in a sudden accident rather than ALS It is a verry cruel illness. I love my Dad with all the love a guy could have for a Dad. And I can never begin to repay Mom for all she did to keep him around as long as she did for us to love one more time. I want to tell you Dad and Mom,, I couldn’t have any better parents than you two. And for others out there with loved one who have ALS…. My heart goes out to you. God bless us all who care about life and what it offers. Good or bad. And God bless you Dad,, I love you. Kel.