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Michelle's Story
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Michelle’s Story

My mother, Jane, is 54 years old and was diagnosed with early-onset Alzheimer's dementia several years ago. She started showing small signs in her late 40s. She is the third generation in our family to get this horrible disease. Her grandmother was diagnosed in her late 80s and lived to 93. Her mother was diagnosed in her late 70s and now at age 84 is in a nursing home.

Over the last three years, she has gotten progressively worse due to my father's sickness. He was diagnosed with colon cancer at 57 after being rushed to the emergency room for rectal bleeding. He had surgery to remove the cancer, and midway through chemotherapy, developed a bleed on his brain due to his treatment.

He went into a coma right in front of us, at one of his treatments. He was life-flighted to a local hospital and remained there for a month. During that time, I realized that she could not be left alone, make decisions on her own, or care for my father.  She quit her job as a teacher to care for him, but was not hired back the following school year due to her incapability to perform her duties. In December of that same year, we found out that my father's cancer had spread to his liver. He was given two years to live, but he only survived seven months. The stress of all of this only hastened her disease.

My father passed away July 2007 at age 59. My mother moved in with me and my family because she cannot live alone. So, at 29 years old, I was thrown into the role of a full-time caregiver, wife, and mother of a 7-year-old little girl.

My daughter still has a hard time understanding why her grandmother is like this, and why we can't do things as a family anymore. It is really beginning to take its toll on our family.

I also worry about the fate of myself and my daughter. Will we be next in line to get Alzheimer's? And at what age? 30s or 40s?  I already worry when I can't think of a word, or can't remember what I was going to say. We were advised against getting a genetic test because what would we do with that information? It doesn't matter if we had the test done or not; it will still be on the forefront of our mind.

The depression is overwhelming at times when faced with this thought and when trying to care for my mother. It is very frustrating. She has always been my best friend, and now I can't even carry on a conversation with her. 
 
It seems like there is no help, and certainly not much is being said about people with early-onset Alzheimer's. The media skims over it occasionally, but it is still thought of as an old person's disease.


 

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Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.