Unraveling: a caregiver's journey of discovery

On December 9, 2015, I presented my graduate school applied research project to complete my Master of Arts degree in Communication, Unraveling: a caregiver's journey of discovery, an auto-ethnography documentary film. My defense was approved and scored by my committee 'with honors'.

I shared with my committee and those in attendance that during my project, there were times during the last two years that I wished I had selected a thesis option--how that would have been easier. How it would have been much easier to select a subject that I was not so personally connected to, one not so intertwined with.

However, I know that I was called to share this experience of caregiving for my mother who has early-onset Alzheimer's disease. I am grateful to have had this opportunity to capture and share this story. And I am so thankful for those who challenged me to pursue this project. Those who encouraged me to keep going even when it got difficult. Those who supported me when I felt like quitting. And those who comforted me when there were no words, only tears.

Coming soon, the trailer: The heart behind Unraveling.

Can she feel it?

I have noticed that sometimes my mother will touch her head when having mental strain. In one of the video sequences I shot for my documentary film, I noticed that when she completely forgot her train of thought, she touched her temple and rubbed up onto the front part of her head, above her forehead.

She has been experiencing headaches in the last 3 months. More than normal. At one point, we took her to urgent care after several days of headaches and a spike in confusion, disorientation and overall behavior decline. The examination revealed no specific, treatable physical ailment. It was disheartening to see.

My family and I have lived with my mother to care for her for over 3 years. We rarely have visitors since this increases her anxiety. This weekend however, we had my husband's parents over to visit for 4 hours. My mother would not come out of her bedroom while they were there. She was visibly upset, uncomfortable and agitated. She lay on her bed, covered up with a blanket except for the times she seemingly had forgotten the visitors were there. She would come out of her room every 90 minutes or so, look around and then go back in. After they left, she told me she had a terrible headache. She pointed to the middle of her scalp and said, "It hurts from here, all the way down," running her fingers forward to her forehead. As she made this motion, I realized this is the frontal lobe of her brain.

A sickening feeling washed over me. It's as if she is feeling her brain die.

Since she had breast cancer in 2010, her doctors were originally looking for brain cancer. Cancer is treatable. Cancer, even sometimes brain cancer, is operable. I recall her first physician telling us after her second brain scan, "Her brain shows signs of shrinkage and damage."

The 36-Hour Day

When my mother was first diagnosed in 2012, a few close friends shared valuable books and resources with me. One of which was The 36-Hour Day, a family guide to caring for people who have Alzheimer's disease, related dementias, and memory loss. When I first got the book, I opened it and started pouring over the pages immediately. I stopped in the first chapter. The personal stories were too much for me to bear. Now, three years later, as the disease has progressed, the words jump off the page.

"Because they are diseases of the mind, you are faced with losing companionship and communication; with the tasks of dressing, feeding, and toileting the person; and with difficult behavior. These diseases last many years ... Many caregivers are doing little more than surviving--just barely hanging on," (Mace & Rabins, p. 320, 2012).

As I consider the next phase in her care, I am hitting some roadblocks as I search for direction and guidance. Some of these roadblocks are societal, regional and situational. And some are internal.

As Mace and Rabins suggest, it is important to get outside help before you have reached the point of being overwhelmed.

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.

Alzheimer’s disease in contemporary film

Recent contemporary films have addressed Alzheimer’s disease and primarily focused on the tangible manifestations of a person’s experience living with the disease (Wearing, 2013). Three particular films have been addressed the concept of ‘personhood’ and dementia: Iris, Still Alice and Iron Lady. These films take the perspective of looking closely at a person’s inner thoughts and perceptions as Alzheimer’s disease slowly progresses. The in-depth personal perceptions shown in a visual narrative format creates a particularly significant connection with viewers.

"I wish I had cancer. No, I mean it. I wouldn't feel so ashamed. When you have cancer, people wear pink ribbons for you, they go on long walks and raise money and you don't have to feel like some kind of a social ... I can't remember the word."

An excerpt from Still Alice.