Rebellious Thoughts of a Woman

M, my first hospice patient, who I started visiting in June 2018, passed away in October. Expected, but still difficult. I was grateful to have been a part of her life and the lives of those who loved her and cared for her, so I have not wavered in my commitment to continue as a hospice volunteer.

She had prepared me to see her death as the natural progression of her life through her gradual decline to the point where death was, clearly, the next step. Still, to lose someone, even someone I just met knowing that death is the expectation, strains the heart.

When I first visited M, she sat in her wheel chair and I sat on an armchair next to her. I read to her. No, I tried to read to her. I was so pleased at the idea of going beyond the Memory Bag, which I got at hospice volunteer training, thinking that this could be my way to connect with her. Clearly, I was anxious about how my visit would go. I came with a feeling of expectant satisfaction to sit there and share with her a book that my daughter gave to me. It didn’t take long, though, to realize that she wasn’t interested in hearing the story, in sitting passively, in trying to listen to my voice speaking words, phrases, sentences, that, I would quickly learn, had lost their value to her. She wanted to hold the book, to look at the pages, the words, the images. She read aloud a few words, then looked at the small drawings, pointing to them, trying to say something about them. My response was to name things. Starfish. Dolphin. Seashell. It’s a book, so I thought words were the keys. But she had Alzheimer’s, so I couldn’t know what she was connecting to, trying to share with me. I did sense that nodding and agreeing with what I thought she was saying wasn’t a bad way to go.  

At that moment I realized that I was not there to do something or provide something, I was there to be: to be with her, as she needed me to be, as I tried to intuit. This insight helped me, and I hope her and future people I visit, understand that at our core we are people connecting to each other through our hearts. This was a relationship where there were no parameters to meet, it was simply two people sitting side by side.

It was for me to follow her lead. To me the book had contained a story to tell, while to her it was, honestly, I’m not sure. Nevertheless, it was something that I could share with her and that’s the idea, isn’t it? She was going to experience it her way, not the way I had intended, but my giving up control to her was key, both to appreciate her and to appreciate my role. Her determination, something I would learn more about at her memorial service, was obvious from that first visit. A personality, as changed as it may be from dementia, still contains the essence of that person.

The last time I visited her she slept in her bed the hour-and-a-half of my visit. I sat on a chair next to her and read the last two chapters of the book I brought on my first visit: Grayson, the story of a woman who helps a baby whale and his mother reunite in the waters off Seal Beach, California. This time, reading it soothed me and kept me from focusing on how she had changed. She had gotten so thin, just a skeleton. She didn’t look at me with her charming smile that was as much eyes as mouth; she lay there, mouth open, unmoving, I even checked a few times to see that her blanket rose and fell. I kept focused on the words and the story, because they soothed me and I hoped they did her, somewhere in her sleep.

The reading was a joyful recollection of being witness to the effervescence of dolphins swimming and playing together, and then experiencing the moving reunion of a mother whale and her child. It was stunningly beautiful in its simplicity, in its appreciation and celebration of life. While I wasn’t able to engage M at this moment, I was able to present myself to her, one last time, with words and a tone that, I hope, reflected the love that she had shared with the people in her life—and got back from them—us.