Sallie Tisdale Witnesses ‘State of Grace’ in Dementia
“I want to push against the blanket belief that dementia is always a disaster for the person with dementia, that the outcomes are always terrible, that tragedy is the only option we have for thinking about it,” palliative care nurse and author Sallie Tisdale explained in a powerful talk at the End Well conference in San Francisco a few years ago.
As a writer, Tisdale thinks a lot about words and how we use them to frame our experiences. As a palliative care nurse, Tisdale says the “tragedy discourse” around dementia misses moments of joy and humanity she’s witnessed firsthand in her own work. As a Buddhist, she brings a wider lens into the human experience of life and death.
The author of Advice for Future Corpses spoke with Solace Cremation about opportunities for joy, repair and connection she’s witnessed in her work and how we might change how we think and talk about dementia and dignity at the end of life.
‘State of grace’
In dementia, Tisdale says there are “riches to explore,” noting that researchers often miss the nuances she sees in her clients who dance, sing and tell jokes. Tisdale says they have an enviable ability to live in the moment.
“There is a time when it’s a kind of ‘state of grace,’ in just being focused and undefended. I wish I could show affection the way some people with dementia show affection. I wish I could spontaneously dance and not care what people think,” she told Solace Cremation.
Family members often think their loved ones are unhappy, but Tisdale says she’s found that it is often our projection onto them. “We project so much on dementia. We project a massive amount of our own insecurity and our own fear of dying and our own fear of lack of self-worth and we project that all on people,” Tisdale explained.
Room to heal relationships
Tisdale says there are also opportunities in moderate dementia for family relationships to improve. “There can be tremendous intimacy at that point and I have seen people work through stuff they could never solve with their parents when their parents were finally sliding into that state where they lost some rigidity and defensiveness and the power dynamic has changed. Sometimes people are just able to solve some stuff,” Tisdale told Solace.
Rethinking tragedy and dignity
Tisdale says there is one caveat to her push against the “tragedy discourse.” She explains providing constant care for loved ones can cause financial hardships and disrupt relationships and careers. “To me, that’s the tragedy … That’s not the disease, that’s our society,” she explains.
Tisdale also rejects the idea those who are declining are “losing their dignity.” She says “Do we believe that something that happens to every single living creature is undignified? Dignity comes from the idea that we have inherent self-worth.” Instead, she says the body is simply failing, which is what happens as diseases progress and we get closer to death.
Advice for caregivers
She has advice for families and professional caregivers who are caring for someone with memory loss, “Talk to them the same way you would talk to anyone else and add to that the willingness to laugh about it all,” she said. She says that if she can model her comfort and enjoyment of the patients, it can help families “not be so scared.”
And she offers tips for connection, “You can touch, you can be close, you can take a silent walk.”
Sometimes caregivers and family members can have a simple but powerful connection. “There is a kind of intimacy that comes from the ability to just say ‘I love you,’ for a person to just reach out and take your hand. It seems like a small thing, but it is very powerful,” Tisdale said.
Sallie Tisdale, R.N. is the author of ten books, most recently The Lie About the Truck. Her essays have appeared in a variety of publications. She is a senior teacher at Dharma Rain Zen Center, a Soto Zen Temple in Portland, Oregon. She works part-time as a palliative care nurse and is an end-of-life care trainer. Her Harpers’ article “Out of Time” explores many of her experiences working with patients with dementia.