My father was diagnosed with Alzheimer’s when he was 54 years old. He is classed as having Early Onset Alzheimer’s disease as it usually effects people in later life. Some people see 54 as old, but it is not old for this disease. Typically dementia effects everyone in old age. When an 80 year old grandparent gets forgetful that is highly likely to be dementia. Alzheimer’s is a specific form of dementia classified and identified by it’s effect on the brain. I could write pages and pages about it, but I won’t. You can look here to find out more information about Alzheimer’s but be prepared to go down the rabbit hole.
Watching my father decline mentally is not nice. I can not claim to be the only one who goes through this kind of thing and I don’t want or expect any sympathy. I was in my second year of university at the time of his diagnosis. It was hard. I almost dropped out but my friends and lecturers persuaded me otherwise. The university were great and offered me support with my studies & exams. Looking back dropping out would have been a stupid thing to do.
As his disease has progressed over the past 10+ years (he is now 65) the hardest part has been watching him forget everything around him & himself. He has forgotten me, my sister & his friends. It sounds horrible to say it but now when I go to visit I feel I am visiting his body. The man that was my father, his soul, his spirit died about 6 years ago. It took me a year or two to come to terms with it. I know that he would want me to get on with my life. I try to remember him when he was fit and healthy doing the things he loved.
As I have studied the disease over the past 10+ years and seen its effect first hand I have learned of something that has created a conflict in my mind. There is no solid proof that Alzheimer’s is hereditary but having someone in your close family (1 or 2 older generations of yourself) can increase the risks. Early Onset Alzheimer’s in particular is called a ‘familial disease’ because it tends to appear in families with several generations effected. Research has shown that is is caused by mutations in one of three genes – the amyloid precursor protein gene (APP) and two presenilin genes (PSEN-1 and PSEN-2). The research shows that anyone carrying these rare mutations does tend to develop Early Onset Alzheimer’s disease.
This is the conflict in my mind that I wrestle with on an almost daily basis. Do I get tested to see if I have the mutated genes? What if I find out I do? Will it make me change the way I am living my life? What if I get tested and don’t have the mutations, but do get the disease later in life? What if I don’t get tested & just carry on regardless with what could be a ticking time bomb ticking away? Is it fair on my partner & family (maybe future children)?
Even if I do have the mutations it does not guarantee I will get the disease & not having them does not mean I won’t. I don’t believe in fate nor do I believe in predicting the future. Decisions decisions…….