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Mageejj

Member
Joined
Jun 17, 2013
Messages
12
Reason
PALS
Diagnosis
04/2021
Country
US
State
OK
City
Tulsa
Hello Everyone. My father passed away last Monday Aug 5. He was diagnosed with ALS/FTD in January of this year. And oh what a year it has been since. It has been torture watching my father losing his ability to do everything so quickly. In January he was walking and talking. Everytime we discovered he could not do something it was so painful. Just one step further in the direction we didnt want to go. I broke down the first time he got down and couldn't get up. I continued to break down when he couldn't make coffee anymore, couldn't get up out of a chair, get up out of bed, go to the toilet himself, bathe himself, feed himself, and when he finally couldn't do anything himself. I watched my mother struggling to handle what was happening to her best friend. I was fortunate enough to not be working and stay with him on the days my mom worked. Those times will be precious to me. Oh how I wish he was in his right mind during those days and that he could communicate. We had finally made the horrific decision to place him in a nursing center 10 days before he passed. They were so sweet and nice to him. I will be eternally grateful to those nurses and assistants who cared for him. In the last few days he began losing all ability to walk and was having trouble breathing. Hi BiPap was invaluable. It was the only thing that made him comfortable. He would put it on and immediately fall asleep. On it he was so peaceful. I'm so greatful that is how he left this world. I'm glad we stuck with his decision to forgoe the PEG tube and ventilation. His mind was so far gone that he was having no enjoyment in living.
For those of you who responded to all of the posts I made on the forum:
THANK YOU!
I spent so much time trying to research everything and find out the best way to care for him. Your experience and advice kept me going.

I still cannot wrap my head around the fact that my daddy is gone. I keep expecting him to drive up in his truck and get out and giggle his little "Hello".
Oh how I miss him and I hate this horrible disease.
 
Very sorry for your loss. You will have no regrets - you did all you could, and then some.

Hug your Mom a little tighter and a little longer.
 
I am very sorry for your loss. Sending prayers of comfort and strength.
 
I am sorry to hear of your loss. These diseases are so cruel. My prayers go out to you
 
So very sorry for your loss. Saying a prayer that peace and comfort surround you and your family during this difficult time.

Ruth
 
I'm so sorry for your lost...... I agree this is a horrible disease!
 
I am sorry for your loss, my thoughts and prayers are with you.

Dana
 
So sorry for your loss, my thoughts are with you and your family. This is indeed a hellish disease. take care
 
I'm sorry you lost such a precious member of your family. Yasmin.
 
I'm so sorry. Know he is now at peace! God Bless.
 
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