CAN WE SAY GOODBYE?
My mother was diagnosed with Alzheimer’s Disease at the age of 80. For the first several years of her illness, she was able to live at home with part-time caregivers. Approximately six years ago, her cognitive functioning deteriorated and we moved her into a nursing home. Fourteen years after her diagnosis, my mother who is now 94 except for her macular degeneration, is on no medication for any life-threatening conditions.
Several months ago, two members in my Alzheimer’s group suddenly lost their mothers, even though they joined the group after me. Every time this happened I questioned, why my mom was still alive after having dementia for so many years?
I know how that sounds. But please let me explain. When she was first diagnosed, even though we had had a strained relationship, I fell in love with her unconditionally. I devoted myself to managing her care and our relationship flourished. Any ambivalent feelings that I once had no longer seemed important and magically disappeared. We shared our laughter and acted so silly almost as if we were teenagers. But today, after 14 years with Alzheimer’s, things with mom are quite different.
What kind of life can mom now possibly have? She exists, but does she really? She no longer has any appreciation of any of the beautiful things that once surrounded her world. Memories of her husband and children are all but gone. For many years, she’s had no idea of her age, her life, her family, nor even her existence.
Mom use to love to go to museums, movies and theatre. She enjoyed her morning walks or strolling on the beach. She adored reading, had a great quest for knowledge and loved taking continuing education classes. For many years now, none of these things have been a part of her life.
Today she is confined to a wheelchair with her eyes mostly shut closed. She occasionally utters a few words that none of us understand. Every part of her existence is taken care of by the wonderful caring aides in her nursing home.
If she could speak or see herself through different eyes, would she want to keep on living? I believe deep in my heart that I know her answer. The answer is what I would want for myself. I believe that when someone’s quality of life disappears, decisions need to be made.
Regardless of your beliefs I am certain that we can all agree that Alzheimer’s is one of the cruelest diseases. It takes away one’s entire world as if it never existed. There is no cure and the ending can be gruesome. So, I ask you, should someone with Alzheimer’s have the right to choose to die? In several states with other diseases you do have that choice. One can decline treatment, but with Alzheimer’s there is no treatment and one can live for many years with no awareness nor quality of life.
Most of us choose not to speak about this yet it is something that as human beings should be our right. We should be able to make our own choice of how we live and when we should die. My choice has always been that I would die with dignity, through physician-assisted death if need be, in order to have some agency in the process. That is what I so heartily wish for my mother.
In two weeks I will be arriving in Florida where my mom is, and staying with her for eight weeks. I want to hold her hand and share with her how much I love her. I also want to let her know that it is okay for her to just "say goodbye".