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My Mom, My Child
Perspectives of a Dementia Victim's Daughter
by Niki Hoffmann - July 1996
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During my sophomore year of college (1994 to 1995 school year), I began to notice something was wrong with my mom. She had begun to spend much of her time in bed or curled up in the corner of the couch with severe headaches. She had also stopped cooking and doing many other usual activities. Then in April, she called and told me that the doctor had told her that she had "probable Alzheimer's Disease". She laughed it off as though it could not possibly be true. I was not very familiar with Alzheimer's disease, except that you lose your memory and it usually occurs in old people. A few weeks later when I was discussing this with my roommate, she suddenly blurted out that my mom was going to die from this. I was shocked! I had not thought of this disease as terminal. That changed everything for me. I bought a copy of the book, "The 36 Hour Day", and read it. I also called the local Alzheimer's Association at a city near the college, and was put on their mailing list. My Dad showed me how to get access to an Alzheimer's online support group on Prodigy which I began to follow. All of this gave me a better understanding of what was going on, and what was yet to come......
That summer, I transferred to the University of Minnesota which was only an hour away from home. I essentially became the caregiver for my mom that summer so my dad could work out of town. She did not require someone with her full time, but just someone to be with her at night, and to drive her places during the day (she was no longer allowed to drive at this point). I was able to work part time to earn money for the fall. Back at school, I was able to see her on weekends, as my mom and dad would frequently make the trip up to UM, or I would run down there for the day.
My mom declined very rapidly, and by Christmas, was not even able to carry on a telephone conversation with me. My dad quit his job and was now moving into the role of full-time caregiver. It was very difficult to be at school and away from my mom. I thought about her constantly, in class, at home, and at work. I felt like I was missing out on time that I should be spending with her and thought it was unfair for my dad to have to deal with everything alone. I began to feel very confused about what was really important in life, and if I had been focusing on the correct things. It began to occur to me that I may not live until I am 70, or even 30! Had I really been focusing on what I want to do, or what I feel is expected of me? Or are they the same things?
My mom is gone.... She is being replaced with a child that needs caring for. I have never really had to deal with a loss like this before. No one ever that close to me has died. Dealing with losing my mom is truly the worst pain I have ever felt. Thinking about it literally makes my heart hurt. I feel as though I have become more sensitive to someone else's loss, even on Television. It often brings me to tears. I have also become more aware of how people act and treat each other, and sensitive to the way they treat my mom and family. Mom can no longer conceal her problem, and in stores she often gets stares from people. Others are more sensitive and just smile at her, to which she will readily respond with a big smile. People that just stare really bother me and makes me wonder about "adults" sometimes.
Emotional support is very important when dealing with early onset dementia. I am 21 years old, and have yet to find someone who can truly relate to what I am going through. My biggest source of support is my dad. I know I would not be able to make it through this without him. Most of my friends do not know what to say and do not understand what I am going through. But I do not really expect them to understand. This is such a complex disease that no one could truly understand until they have lived through it with a victim. I feel as though many of our family and friends are turning the other way. They say they are concerned, but rarely call to see how my mom is doing, or my dad and I for that matter.
What makes me angry sometimes, is that I feel like everyone will be coming to support us after my mom dies, which is too late. They should understand that we are dealing with her loss now! When she dies, she will be physically gone, but in every other way we have already lost her. I am sure that people really do care, but many do not know how to deal with it. But, do they really think my dad and I can deal with it any better? We are losing the person closest to us, and have to face that reality every day. Sometimes I feel like I can not handle it, but I have to be there for my mom just as she would be for me, my dad, or anyone else she loved and cared about. I spend time with my mom everyday when I am at home in the summer, but sometimes I do not feel like it is enough.
Sometimes I get scared that I will forget what my mom was like before she became sick. This worries me a lot, as I do not want to remember her the way that this disease has made her, but rather the fragile, loving person, with the southern drawl that she was before. Every once in awhile a friend will come up to me and say "I remember when your mom ......." and this makes me feel good. It helps me to know that they do not see her as the person that the disease has made her become, but as she was. The person I call mom today, I care for as my child.
More than anything, I feel robbed! I feel my mom has unfairly been taken away from me. When I first found that her condition was terminal, all I could think of was how she was no longer going to be able to give me advice, teach me how to cook, watch me get married, or see and play with her grandchildren. These are things that I still think about frequently, and punches a hole in my heart every time I do. Every time there is a new accomplishment or other exciting event happening in my life, I want to run to her and tell her. But I know she no longer will understand...
Do I worry about heredity? As far as we know, my mom is the only one in the family chain to get this disease. Even if there is some probability that I may be at risk, it is probably no greater than getting cancer or any other disease that has occurred in my family. It is something that I think about, but I am not obsessed with. I would, however, feel obligated to tell someone about the possibility before making a life long commitment to them. Research should tell us more about this in the future.
I believe that everything in life happens for a reason. Even though this horrible disease is taking her from us, it has brought us all closer as a family and made us reassess our values, giving each of us a chance to show each other how we feel. It has hopefully let my mom know how much she is truly loved by us and what an impact she has had on our lives.
--Niki
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