Touch and the Senses
“Tending to dignity by way of the senses, by way of the body – the aesthetic realm - is design cue number two.”
“As long as we have our senses – even just one – we have at least the possibility of accessing what makes us feel human, connected. Imagine the ripples of this notion for the millions of people living and dying with dementia. Primal sensorial delights that say the things we don’t have words for, impulses that make us feel present – no need for a past or future.”
From Dr. B.J. Miller’s TED Talk titled:
“What Really Matters at the End of Life”
I have wanted to write a blog about the power of touch when supporting someone who is dying for a while now. While preparing for a recent presentation I was invited to give at a conference, I revisited a TED Talk given by Dr. B.J. Miller in Vancouver in 2015. In his wonderful talk he speaks of three of his “design cues”. The second is highlighted above and focuses on “tending to dignity by way of the senses” which includes but also takes us outside of the realm of mere touch.
Over these last months some of my blogs referred to a friend who was dying of cancer. She became a muse for some of the writings and was so open and curious about her end of life journey, a true reflection of how she embraced life itself. Rose has since passed away, but in celebration of her essence I want to share how stunning her last moments were. She was admitted to a hospice from home the afternoon before she died. She had become more frail and requested to go to the facility because she had had a fall at home that morning and wanted to lift the demand on her friends for her care. Pain management was becoming more complex with the cancer now effecting her spine and bone. Though she was living alone, friends had rallied to help her to stay in her cozy townhome, a cherished oasis. Even with the hospice transfer we thought she still had weeks of life left. The morning after her admission, I was due to go see her. Another friend was with her, a nurse by profession, and Rose’s little dog for a final good-bye. I called to let her know I would be visiting in a few hours. During my drive to the hospice suddenly, I felt this wave of calm and a deep reverence wash over me and anchor into my being. It was strong - in the silence felt. That deep sense of a reverence for life, where it is as if the silence has a texture. The image of Rose appeared along with a rich sense of gratitude for her presence in my life and the many gifts she had shared in her recent time of dying; the true privilege of companioning her during her final days.
After arriving at the hospice residence and walking in the entrance, the first thing I noticed was that they had a special light on the memorial table that was turned on which I knew from my work indicated that someone had died. I wondered who it was and when I got closer to the table could see her name displayed on a stand in front of the light. A gentle smile came over my face when I saw her name; then I took a moment to pause and breath in the news to honour her passing. After checking in with the nurses on duty I went to her hospice room to spend time with my friend Amy who was alone with her body. Rose was radiant in her death; her face relaxed, peaceful and beautiful. I got to touch, kiss and be present with her one last time. The essence of her loving heart still filled the room. Her final ritual was stunning. She woke up saying that she was feeling a bit unkempt, so Amy offered her a bed bath with the nurse on duty in support. They pampered her with suds and loving touch. There was a bottle of rose water from Persia at the bed side that Rose had brought to the hospice and Amy asked her if she would like to have it on her skin? She thought that would be lovely. After the bath they covered Rose gently with the beautiful scented rose water. As they were nurturing her with this loving touch she said, “That feels so good!”. Then they turned her on her side in bed for greater comfort and the nurse left. Amy said what took place next was amazing. She has seen hundreds of deaths as a nurse, but never one like this. Her breathing started to labour, and she watched as her legs quickly mottled (circulation changed) and then she just left! Died, gone. Amy is a gracious, heartfelt soul herself. She said Rose’s passing was so peaceful it was like she left “on angels wings”. She said it was stunningly beautiful. The nurse on duty was called in and couldn’t believe it. No one expected it in that moment nor to unfold that quickly. How precious and elegant a departure! Her last words being; “That feels so good!”
Another stunning example of BJ’s reflection involves my Mother. She had a form of dementia called Pick’s disease (similar to Alzheimer’s) for well over ten years but my father still bought her flowers for every special occasion until she died. The flower shop he frequented knew him well and were touched by the romance he continued to create despite the challenging circumstances at hand. My family played music to her to which she would pause, turn towards and become engaged in with a calming effect. When her words seemed disjointed, we chose to listen to and assume her changing metaphoric language made sense and responded with great enthusiasm even if the words seem to have no literal context or meaning. She in turn would respond with enthusiasm and become more engaged often making more direct comments as a result. Though challenging we all had amazing experiences with her! Rich connection was clearly a part of the experience. Holding hands, hugs, kisses and touch were also involved in our time with her. She died peacefully two years ago with family at her bedside. Since her death my 97 year-old Father has been seeing and feeling her around him as his own end of life journey is unfolding. He even shared that he felt her crawl into bed with him early one morning and could feel her cuddle up to him and the depth of her love. As he was waking, he said it was like she slowly disappeared and slipped through his fingers, but it felt so real. A little disorienting because it was so lucid for him, but beautiful none the less. We have acknowledged and celebrated the connection he is still experiencing with her. It feeds his heart as his own body is now becoming more and more frail.
These reflections are in firm support and celebration of Dr. Miller’s words; “tending to dignity by way of the senses”. When we take the time and care to do so we not only enrich the experience for the dying person, but those who are close in bond and love. '