Last year in November (2018) was a diagnosed with Early Onset Alzheimers. My husband and I got the diagnosis after a year of tests and searching for answers. I’m in the the early stages. So the symptoms of it are minor.
I am retired. I don’t work anymore. (Due to other health issues) and so I’ve had a year to come to grieve and come to terms with this diagnosis. I have read, watched and learned about this illness and understand what is happening, what will happen and understand that this is a death sentence. An expiry date has been put on my life. So I’ve learn to accept what is coming. I know it’s not reversible and there is no way I can stop this. This in psychology is called “Radical Acceptance”. Accepting what is to come and accepting the pain of it, while not prolonging suffering. Some people choose to fight against things like this and end up suffering and having a miserable life. I choose to accept it and live what little life I have left to the fullest.
This is where the problem lies. I have a husband. He doesn’t see my acceptance as a positive. He sees it as giving up on life. In his mind he believes that accepting what is to come is giving up on life. It isn’t. It is difficult making some people understand this view, even my closest friends are trying to grasp why I am accepting it.
My husband is also at a stage in his grief where he is grasping at every theory out there. His father sent him a video series that has a doctor talking about Alzheimer and a possible link to diabetes and now my husband believes that Alzheimer is curable by simply losing some weight. I tried pointing out to him that it isn’t curable (alzheimers) and he gets angry. This isn’t the first time this year he has done this. A few months ago, my husband read that diet can improve the lifespan of an alzhiemers patient and even help them overcome the illness.
It’s extremely difficult for me to live in this way, with the constant advice from family who have read some unproven theory online or some diet that they read that could reverse the damage to my brain. When all I want is to just live life to the best I can and enjoy the time I have left with my family and friends. I don’t want to go through the rest of my days suffering from one crackpot cure to the next and suffer with disappointment after disappointment from myself or others. I am trying to stay positive and happy.
This is why it is so hard for me to see my husband hurting and there is nothing I can do to stop that pain. I know he is mad at the diagnosis and illness and not at me, but the anger is directed at me when I don’t give in to his ideas. I won’t affirm to him that I believe these things he is reading is true because there is no where else that is really saying my losing weight will stop my brain from dying off.
Plus I would add that I don’t want to live longer with this illness. It is a horrible disease that the longer it goes on the longer you suffer. And I’m not one for wanting to suffer or make others suffer. And I wish he would understand this.
Honestly, It makes me angry sometimes that he won’t just accept my choice on this. After all, it is my life. I am the one dying. He will be losing his husband, but he is young enough that he will be able to move on, and possibly fall in love again with someone else. He isn’t the one with a terminal illness. He is grieving in advance for his love dying. I get it. He is grieving and angry that this illness is taking me away and will take me away piece by piece. I’m still the one who is dying. It’s my body. My life. He isn’t dying and his actions are making me suffer now. It is just hurting me seeing him act and behave like this. And I don’t want to spend my time now trying to console everyone around me. I don’t have the time to do that. I don’t have the time to try to convince people my acceptance is a good thing and not a bad one. I literally don’t have that time left.