Mother's Ordeal
By Mary Pat
My mother died 30 years ago in Missouri. You would not think that I would remember much about it since I was only 11 years old. But no matter how old or young you are, the disease is so terrible that you never forget what impact it has on you.
I remember it started with her vision. She wore glasses sometimes but not very often, and she kept getting them changed. Well being young, I thought it was cool, because she was getting different styles.
Then next, she would get upset over small things, the one thing that sticks in my mind was she was crying because the gravy was lumpy. My mother was a happy person, and her children meant more to her than anything, so she was never upset or mad.
Now you have to remember she was pregnant at this time, with my youngest sister.
I remember the time my oldest sister was going out on a date and Mom did not want her to go because the giant fly's were invading Gotham City and they would get her, so she had to sneak out the back door. We just thought she was being crazy.
The disease got worse, my father would wake up in the middle of the night and my mother would be gone. He would get up to look for her and she would be downstairs in the dark with the water running and the stove on, just sitting there. He would ask her what she was doing and she would say "making coffee." These sessions began to be an every night occurrance.
They went to the Dr. who was a good friend of the family. I remember my Mom saying "I just don't feel right, I don't know how to explain it." I OFTEN WONDER IF SHE KNEW SOMETHING TERRIBLE WAS HAPPENING. The Dr. didn't know what was wrong, they thought she was schizo. Being 41 and having a baby back 30 years ago - that was old for a woman to still be having children. The Dr. said "Let's wait the pregnancy out and we will go from there."
She became like a little child. We 3 older children would take turns staying home from school to watch her, for she had begun taking the 2 youngest ones at home on little jaunts with no coats on, and sometimes no shoes. God love her, she didn't know. So my father had to work and us kids just did what we were told. Not knowing the repercussions it would l have on us later.
It became too much and she kept thinking she was going into labor 4 months early so they decided to put her in the hospital till the baby was born and then proceed with treatment.
I will never forget we all said goodbye, not knowing we would never see her again. In February she gave birth to my little sister and she was fine. My mother never knew she had her.
We were never allowed to see her at the hospital. My father said she doesn't know you, and she doesn't look like your mother. So they started shock treatments thinking this would snap her out of it.
Nothing (helped), so they decided to send her to KU Medical Center. They did a brain biopsy. That is where they diagnosed CJD. They told my father to take her back to the hospital, that she had a touch of pneumonia and she probably wouldn't last more than 3 weeks. That was in March. On December 3, she died. They took the feeding tube out so she starved to death.
MY FATHER SAYS SHE WAS NEVER IN PAIN SHE WAS BLIND AND NEVER SPOKE. How would he know?
As years went by and Alzheimer Disease came into National news, we 3 oldest kids would talk about how she acted like an Alzheimer patient. Not knowing anything more about CJD, than that our Mother died of it, and also at the time our Mother died there were only 56 reported cases in the world. Now we have alot of questions.
I hope if someone ever needs my help I can give it to them, though I know it will bring back many memories.
To this day and every day, I miss my Mom so much. All I wanted to do was hug her and tell her we were here for her. So before it is to late - if your loved has CJD, hold them and tell them you are here for them, whether they know it or not, just be there for them.
Marypat .