1. Lane, Deborah BSN, RN


A nurse's account of the relentless course of worsening dementia.


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Frankie was a fast wit, a ginger-headed joker, impeccably dressed, and the first to laugh. She was a master's-educated teacher who developed programs for at-risk teens, teaching pregnant high school students skills for employment and effective childcare. She loved to cook and her home was warm with beautiful arts and crafts she had made. She was a wonderful friend. Disease changed it all.

Figure. Illustration... - Click to enlarge in new window Illustration by Eric Collins.

At 66 years old, Frankie required placement in a memory care unit. This placement was not premature. She'd been diagnosed with early-onset Alzheimer's disease 15 years earlier and her husband had served as her caregiver all those years. With the 24-hour vigilance Frankie required in her last five years at home, my husband and I feared her husband's health would deteriorate. She no longer acknowledged the spouse who lovingly fed her, dressed her, and changed diapers. She slept her days away. She rarely ate.


The slow progression was arduous. In the first few years, Frankie was aware that things were not right. She was fearful and frustrated with her memory loss. It seemed at times she would deliberately task herself to prove she could still accomplish something. One evening we went to their home for dinner. Frankie had planned an elaborate multicourse meal, with obvious help from her husband. It was wonderful, but she was exhausted, relying on reminder notes for every detail. According to her husband, it was the last complex thing she ever accomplished.


An escalation in symptoms became apparent over time. As friends, we continued to interact with this couple "as usual." Frankie and her husband had been a huge support while I was a nursing student. Eventually, my husband and I were among the few still in contact with them. "Others," her husband said, "can't handle it." His isolation and sadness increased. We understood he was honoring his promise to Frankie that she could remain at home. To do this, he took an early retirement from a career he loved.


I grappled with appropriate approaches to help this couple deal with the disease process, researching medications, providing referrals and respite time. Even as an RN, I felt ill equipped.


I quickly learned to avoid asking questions that were seemingly innocent but proved frustrating, even debilitating, for Frankie. Instead of saying, "Nice top, where did you get it?" I transitioned to "Nice top, I like the color"-any sort of question caused her distress. Her face could not hide that she did not know an answer but felt she should. Simply asking if she was hungry caused panic; she could not remember when she had last eaten. She was also adapting, following our cues. "Let's eat!" gave her the opportunity to agree without having to think.


I practiced conversations with lots of eye contact, nodding and smiling. I believe she was happy then, feeling as if she was participating with the group. As soon as I lost her gaze, her face would mask over. It took her a long time to process any direction. I would speak slowly, simply. It was laborious. We all loved her and wanted her to know that.


Sometimes overwhelmed by the pressures of caretaking, her husband would become frustrated and scold her for things she would do. She was fidgety. She wanted to touch everything. Almost like a child discovering the world around her through senses, she was trying to remember her world. When they would visit, I would fill the sink with warm sudsy water and Tupperware. She would wash, rinse, and fill containers to her heart's content. There was no order, only a familiar, wet, and tactile experience. We were friends, once again, sharing an afternoon in my kitchen.


Feeling brave, I took Frankie on an outing. Although I had cared for patients with Alzheimer's in the hospital, so advanced was her disease by this point that I feared I would not be able to control her in public. With her love of arts and crafts, I hoped I could keep her entertained for a little while at the yardage store. Three hours later, she had touched every piece of fabric in the store. Mesmerized by the colors, Frankie smiled and cooed-something I had not seen in a long time. The experience wore her out, but for three hours, she seemed in a world she understood.


Her nightly "sundowners" eventually caused her days and nights to switch completely. Excursions became out of the question. Her husband suffered, we encouraged, and Frankie drifted further away.


I took a video of Frankie the day she moved to the memory care facility. She was distant, mumbling and pacing. As her husband buckled her into the car, I waved from behind the camera and shouted "I love you." Mimicking, she waved and said "I love you" back. I will hold onto that because I know somewhere deep inside the Frankie I knew meant it.