Narrative Inquiry in Bioethics

It started with simple statements like these: "I know I forget things. It's tiring. Every day, when I wake up, I feel like I'm starting all over again."

Over time, Mom started asking us questions like: "When am I going home?" ("Mom, look around. Here's your furniture, your clothes, your photos on the piano. This is your home," we would respond.) "Why don't my sisters and brothers visit anymore? When will I see them again?" (I thought, but never said, "Soon, Mom, very soon. But not on Earth.")

One day, when we were walking in her yard, she said, "You see that tree? It's a metaphor for how I feel." It was a tree in the woods that had uprooted, but it was leaning on another tree and didn't hit the ground.

My mother began exhibiting symptoms of memory loss in her mid 80's. By age 89, my siblings and I recognized she needed intervention for her care.

Mom was widowed at age 48. There were five of us: my older brother had just returned from Army basic training. I was in college, I had two sisters in high school, and a younger brother in 7th grade. She did her best to keep our lives as normal as possible while we all grieved our Dad's sudden death due to cancer. She stayed up well past anyone should in order to pore through paperwork, bills, and complete household tasks. She made sure we completed homework, socialized, visited with family, and went about our normal days. So to say we were devoted to our Mom would be an understatement.

As we each married and had our own children, Mom guarded her independence with ferocity. She frequently visited our homes and watched her grandchildren, but would never consider living with any of us, even when one of my sisters offered to purchase a home with independent space for her. She relished hosting dinners and holidays in her home through her 70s, even though we increasingly took on more responsibilities for grocery shopping, table setting, and cleanup. Whenever someone stopped in to visit her, she was always ready with a cup of coffee, tea, and a plate of cookies while we talked at her dining room table covered with a special tablecloth that rotated according to the season or upcoming holiday. Thus, as her decline began, her wish to remain in her home, the central place of gathering for so many, was paramount.

Mom's health care was always shared by all of us. One sister took her for eye exams and cataract treatment. One brother and I handled her checkups by an internist, cardiologist, and otolaryngologist. At age 77, she had cancer of the parotid gland, and my sisters and I shared driving her to her radiation appointments, timed around our work hours. Maintenance of her home when she became unable to care for it independently was also arranged by us, and even handled by our husbands, her grandchildren, or any of the large family network she had built and cultivated.

Once Mom's cognitive slips became noticeable, my siblings and I held a meeting. We decided that we had to slowly ease her into allowing help from a home health aide. One brother and sister began the process of applying for health and senior benefits for her, and another sister visited with a "lesson plan" to stimulate her brain. I applied for and obtained coverage for her very expensive drugs to slow her cognitive decline. Another brother, an attorney, prepared her living will and wishes for who would be legal and medical proxy before her Alzheimer's disease worsened. And he played the piano while she sang. Remarkably, she continued to play piano and said as she aged, "you know, I just can't play with my left hand anymore."

We hired someone to be with her from 9 AM to 1 PM so that her breakfast and morning pills would [End Page E8] be supervised, and her lunch would be prepared and supervised. One of us (on a rotating schedule...