A Day in the Life of an Alzheimer's Caregiving Family

My summer graduate course was a study in philosophy and ethics in mass communication. It allowed me an opportunity to analyze some of the ethical issues surrounding my mother's care.

When caring for someone with Alzheimer’s disease, teleological and personalist/subjective ethics are constantly in a dance. Sometimes they move in sync and sometimes one must be abandoned for the other. There is no hard deontological stance to be taken. There are ethical questions that grip me daily. The dilemmas that have to be faced have no easy answers. The clear deontological ‘yes is always yes and no is always no’ can no longer apply.

I mourn the slow death of my mother. I mourn what I wish I had—a mother that I could talk with, be comforted by. I mourn for her, the life she could have had. I pray for mercy for her. I hope beyond hope that she is not frightened, that she does not suffer. I am brokenhearted that her friends, neighbors and extended family have all drifted away. Glen Campbell’s words are haunting, “I’m never gonna know what you go through.” It is painful to know that she is not in a position to have a traditional mother-daughter relationship with me and that I cannot share with her what I am going through.

On a professional level, I wrestle with loyalties in making a documentary of this story. On some deontological levels, it is difficult to share the private moments of living with this disease. On teleological and personalist/subjective levels, by sharing the realities of this experience, it could bring awareness about Alzheimer’s disease. Her story and my story could help families as they navigate their own decisions surrounding caregiving. On a personal level, I hope to move through this phase of decision making for her care to a place where I can embrace and remember the earlier years of her life. In the words of Dixie Chicks, “… try to connect all the pieces you left. I will carry it on and let you forget. And I’ll remember the years when your mind was clear. How the laughter and life filled up this silent house.”

I completed phase two of my documentary preparation. This is a preliminary creation meant to be implemented as pieces into the larger story. However, it shows some of the painful realities of what a caregiver faces.