I can’t remember my life prior to Alzheimer’s disease which in itself is daunting. My mom was diagnosed at 57 and I lost my father 14 months after her diagnosis. My life immediately changed. I started journaling the experience and it became cathartic for me.
I have been asked to write for medical journals, which is an honour I suppose, but what do I know? I am half way through a doctorate in education myself and a former version of my self. Alzheimer’s disease does not just strip the person afflicted, it strips the person who watches, hopes, goes through this disease.
I don’t know who I am anymore, that part scares me. I was a daughter, I suppose I still am, after all my mother is still alive. (if that is what you call it) Alive in the sense, she is breathing on her own, that is the only thing that she can do on her own, breath.
I thought writing the book would help me get through and find a way to make sense of this disease. All it did is expose all the feelings I was dealing with alone. I cannot even read my own book, I have tried several times. I can’t read it because I can’t believe I am still standing. I have now become apathetic in this process. It is sad to say that unfortunately the only way to understand what this disease does, it to actually go through it and this disease makes everyone around it go through it.
In the end stages of the disease, it is literally like watching a person go back into the fetus stage. So life reverses itself. There is research now that states the brain shrinks to the weight of an orange. Now I have a visual of my mother’s brain shrinking smaller and smaller. She cannot chew anymore, so she is on a puree diet. I have filled out Do Not Resuscitate (DNR) forms. I have visited a funeral home twice, to discuss packages and arrangements.
I am going through motions and emotions. I try to picture what life will be like, without speaking with Personal Support Workers, Palliative Care Nurses, Caregivers. I wonder what it would be like to talk about anything but this. I try to think of what it would be like to just be a mother. What is that like? I guess I will find out sooner or later.
I try to picture the day it happens, so first call is, the funeral home. I hope I put that in place quickly. Because I am still deciding on the right package. If I go through the steps in my head, when the day comes I will be ready. I will be able to calmly make the call, then call a selected few people and give them the news. The funeral home said that once the package is in place, they will handle everything. That makes it easier. Easier I said. ha!
I am unnervingly calm. I used to be so anxious, nervous, it is a bit eerie. Is this acceptance? Well I really have no choice in the matter, it is happening regardless. As challenging as it was and is, I am happy I kept my mom at home, she brought me into this world and now I will see her out. The full Circle of life.