The Killer Monster
My Mother was such a wonderful, caring, loving woman. She was 78 years old but never looked her age. People always thought she was a lot younger than she actually was. She was still working as a school crossing guard, a job she had for 39 years. My dad had passed away in 1993 and I wanted her to come live with us but she said she could take care of herself and would be fine and she was until May of 1994.
My son received his first Holy communion at the beginning of the month and she came to where we lived at that time for the celebration. I asked her to hem his pants because she loved to sew for him and she said I'm really having a problem with this eye and I won't be able to do it. She was told she needed cataract surgery at the end of the month. She said her eye was really bothering her this time. She had her first cataract surgery two years prior and had a terrible reaction from it. She was stumbling all over the place and it took her a long time to recover from it. We were really worried about her.
My Dad had cataract surgery and did not have a reaction like that. She was on medication and since she was never sick a day in her life, we thought it was a reaction to the medication. But finally she seemed okay and then she had the second cataract surgery 2 years later and 2 to 3 weeks after it she started having numbness in the heel of her foot. She went to the doctor and the doctor did an x-ray and found nothing but a slight touch of arthritis in her back. She said the arthritis was sitting on a nerve and was probably causing a slight problem at the time but it was nothing to worry about. She did not get better as the doctor said but started stumbling and losing her balance. My brother took her back to the doctor and she said she could see no problems but thought that my Mother should see a neurologist.
She went to the neurologist and he could see nothing wrong so again she was sent home and told it should get better. It got worse. My brother went on vacation because they said she would be fine and I came home. She was not doing well, so we went to the neurologist. She was having a lot of problems with balance by this time and when the neurologist saw the problems she was having he said he would do an MRI. They thought it could be a brain tumor or a stroke. After all the tests, they decided it was a stroke. She started physical therapy but it was not working.
We had to go back to our home because we had found out before my Mother got sick that we were being transferred back to our original home and birthplace and after 12 years I was going to be by my Mother again. My Mother was so happy! So, she flew with us and the therapist gave us all the exercises to do and we did them everyday. She worked so hard but I could see that there was no improvement. I am a speech therapist and have worked with stroke victims and I know the improvement they make and she was deteriorating before my eyes. Also, I was noticing so many changes in her.
When my Mother slept she would wake up the next morning and she would stay in one spot and the sheet wouldn't even move. During this time, when she slept she would wake up in the morning and the sheets would almost be off the bed. We would laugh about it and say she just had a bad night but she was actually tossing and turning all night long.
After I got my house on the market we flew back to her home and by then I had called my brother and he came home and we took her back to the neurologist. He said it no longer looked like a stroke and he wanted us to go into New York to a specialist and see what he could determine. So, we went into New York and we checked her into the hospital and she was in the hospital for about two weeks. The deterioration was unbelievable. She started having involuntary actions with her arms. She would be sitting up in the bed and her arm would just start to go up in the air and she wasn't even aware of it, The restless nights continued and then one day when my brother was there she started to hallucinate. She said she saw a man jumping out of a window in the next building and started yelling and acting out. This was such uncharacteristic behavior from a woman who never raised her voice to anyone. The affect on my brother that day was devastating. The doctors went back and forth with what they thought it was and had mentioned CJD to us and then two weeks later they came in and said that they were almost positive it was CJD. When we questioned them as to what we do now their response was "nothing." "There is nothing that can be done for this disease." So I asked so what do we do and he replied, take her home and make her as comfortable as possible and then what happens I asked. He replied that she would die. I will never forget that day as long as I live, I said I don't believe you. How can such a healthy, vibrant woman deteriorate like this in two months? He told me that the disease works that way, He gave me material to read but it was very technical and I was so distraught at the time that I just couldn't accept it. I asked if we should get another opinion and he said you can but they will tell you the same thing and he was correct. So, we took her home and were determined to help her get better. We called her insurance company and had a physical therapist and an occupational therapist come to the house and work with her. We were going to beat this she said. I told her when we moved back she was going to live with us and she said well just until I get better.
The therapy of course didn't work and the deterioration got worse every day. The involuntary actions were out of control by this time. She was brought home in an ambulance from the hospital because she could no longer walk. Once home her speech started to slur until we could no longer understand her. She couldn't even sit up in a chair but had to be propped up with pillows She went from the chair to the wheel chair to the bed.
She started attacking people. We were having dinner one night and her neighbor came over and I went downstairs to take out the garbage and when I came up my son and her neighbor were in shock because she had attacked her neighbor and was yelling and shouting. They couldn't believe it. My son adored her and he looked so scared. His sweet wonderful Grandmother, where had she gone to? I couldn't answer that question for him because I didn't have the answer.
It was now August and my brother and I couldn't believe what was happening before our eyes. My mother could no longer eat, most of the time we didn't think she even knew us. She couldn't sit up, she couldn't talk and we had to bring in a visiting nurse to help take care of her and someone to stay with her. We still hadn't sold our house and I was commuting back and forth. My Mother was wasting away. She was thin to start out with so she was skin and bones by the time this was over. I had prayed so hard for her to get better but I knew that my prayers wouldn't get answered this time so now I had a different prayer. Please don't her suffer anymore. I prayed that God would be good to her and end her fight with this horrific monster.
We had to go back to our home because my son had to start school where we lived before Labor Day. When we came back for Labor Day weekend my husband and I went into her room and I started to see her eyes dart around like she was looking for someone and at that moment I knew she still recognized us and I realized she was looking for my son. I told her he would be right up and when he came bounding into the room she used all the energy left in her frail body and smiled because he was there and he ran and threw his arms around her neck. But she couldn't put her arms around him and I knew then that I had to tell her that night that it was okay to leave us and that all of us would be fine but that I wanted her to be at peace. I had to leave on Monday because my son had to go back to school and as I said good-bye I did the hardest thing I ever did in my life. I told her I hoped it would be the last time I would see her alive and it was. She died on Wednesday.
We, of course, had an autopsy performed and they did confirm that it was CJD but not the hereditary kind. Since they did an autopsy she had to be encased in glass for the viewing at the funeral home and it was so hard not to be able to touch her and to answer everyone's questions as to why it was done. It took me two years to be able to finally accept what had happened. I remember her now as that wonderful, loving woman who graced our life but was stolen from us by a monster, the likes of which I've never seen.
On her death certificate the cause of death is a blood clot and maybe that is why she stopped breathing but my brother and I after the autopsy made them put CJD as the second cause of death. But did you know that only the first cause of death gets reported to all agencies? So, when Mad Cow started to get a lot of publicity there was an article in the paper listing how many people had died in New Jersey from CJD in 1994 and they said NONE!!! Well, that is a lie but since it was not on her death certificate as the first cause she was not reported as having it.
My Mother was laughing and talking and kissing everyone at my son's first Holy Communion in May and she was dead at the beginning of September. If we let this disease go unreported on death certificates and keep it under wraps we will never know the extent of it and it's devastating affects on so many families. I tell my Mother's story for one reason. I want people to know how this killer affects families and their lives and how their life will never be the same once it has struck. Thank you for listening. bono208