Narrative Inquiry in Bioethics

This journey through dementia with my mother has had an unexpected outcome: it made me happy. I didn't see that coming because of where our relationship was at the start. I had known since I was 24 years old that I would probably be the person to care for our parents as they aged. At that young age, I thought that their care needs would arrive with regal fanfare, then I would step nobly into my new role. What I got, 25 years later, was windchimes jangling frantically in gale-force winds.

Our journey began when a routine doctor's appointment veered unexpectedly onto the caregiver path. During the visit, I learned that Mom's cognitive changes were more than normal aging; they were the early stages of dementia. Because of the disease, she wouldn't be able to take her medicine properly, therefore, could no longer live alone. As we concluded the visit, Dr. M told me that I needed to move in with her. At 24, I had no idea that caring for an aging parent would entail moving back into my childhood home. Nor did I realize I would struggle to maintain a life of my own while caring for my mother.

Looking back at the moment Mom's care needs arrived unexpectedly, I realize the thought of living with the unspoken, unresolved issues that undergirded our relationship was why my head was spinning. Throughout her life, my grandmother's verbal footprints demeaned Mom's character and created doubt about who she was. Though Mom hated my grandmother's behavior, she kept silent to show respect.

Having a fundamentally different temperament from my Mom's, I saw nothing respectful in my grandmother's behavior, nor did I see anything respectable about tolerating it. When Mom's silenced anger would spill onto me, I would push back with everything I had. From Mom's point of view, my reaction was a lack of respect for her. I, however, just wanted her to be clear that I vehemently disagreed with her perception of respect and refused to share it.

That polarized point of view created years of difficult moments. I learned from those times that we got along best when we lived apart. However, her inability to live alone meant that strategy was no longer an option. The move back to my Mother's house was something I did willingly but not without reservation. I accepted that I had made the most rational choice under the circumstances and was committed to fulfilling my role as a caregiver. However, my guard was up.

Moving back into her house rekindled my willingness to fight as hard as I could to keep her anger from impacting my life. At the slightest hint of an impending anger encounter, I would immediately go into warrior mode. Always armed with snappy retorts, I would counter her quibbling and annoying bickering with an equally irritating response. As a result, we spent many days at odds with each other over nothing. Staying on guard against Mom's anger was something I neither liked nor wanted. But I had accepted it as the nature of our relationship.

That was how we lived for about 18 months until two small but utterly terrifying words, breast cancer, entered our lives. The presence of dementia meant she could not fully process the diagnosis and treatment options, so the decision-making was up to me. The first doctor we met recommended a standard [End Page 116] treatment protocol of mastectomy, chemotherapy, and radiation therapy. Removing the cancerous breast made sense. But the idea of following up with chemotherapy then doing radiation therapy seemed like too much to do to someone who was 84 years old. So, I decided not to use that doctor. The second doctor we met came with a team that presented a treatment protocol that eliminated traditional chemotherapy. Their goal was for her to live life after cancer. Realizing that there was more life to be lived forced me to make a choice: continue living as we had been or use the time we had left to live differently.

At that moment...