We are all dying, none of us are immune. Some will leave suddenly, some over a prolonged period of time due to illness, but all will eventually die. So why haven’t we all gotten better at helping those who are actively dying, especially in hospitals? Why is a good death seen as an oxymoron to so many?
As a nurse I have two passions. The first, the one that sets my soul on fire, is feelings-based, person-centred dementia care. The second is palliative care. In my almost 40 years in the nursing profession I have cared for those at end-of-life more times than I can count. It was a privilege, an honour, to be part of this journey with them.
Dementia is a terminal illness, it will eventually kill you. Many believe that those in the end stage of the disease are unaware, unreachable. They may not think of providing the same kind of care that a person dying of cancer might receive in a hospice/palliative care setting. They have not seen what I have seen. Just because someone appears to no longer be able to communicate does not mean they are not aware. It does not mean they no longer feel. Persons living with a dementia are feeling beings to their very last breath.
My mother passed away January 15, 2015 from vascular dementia. Technically it was pneumonia, but that is frequently the cause of death in the final stage of the disease. For several years my sister and I had tried to coordinate our visits with mom. Mom always responded more often, and for longer periods, when we visited her together. She seemed to enjoy the banter, and looked back and forth between us as we told stories and caught up on life events while visiting with her. In the year leading up to her death my mother no longer responded to my sister and me. Her eyes remained closed, she was withdrawn within herself. We despaired of ever getting a response from her again. That’s when providence intervened with a video of Naomi Feil, founder of Validation Therapy, interacting with Gladys Wilson, a woman at the same stage of the disease as my mother.
The Naomi Feil video was shown at a workshop I attended in October of 2014 facilitated by Dr. David Sheard of Dementia Care Matters. As I watched, the tears began to stream down my face, and hope surged in my heart. There was a way to reach my mother. I called my sister and arranged to have a joint visit with mom in early December. Neither of us lived in the same city as mom so it took planning. I put together a playlist of all the old Silesian Christmas music my mother loved while growing up. We turned on that playlist, pulled up close to mom, held her hands, leaned in, sang along and reminisced about Christmas past. It wasn’t long before mom’s eyes opened and she once again looked back and forth between us with a smile. What a gift!
Don’t give up on someone, even when it appears they have withdrawn deep within themselves. No one knows at what point a person no longer has any perception of the world around them. Is it not better to risk looking foolish to others because you are having a one-sided animated conversation, than to have that person leave this world alone and emotionally neglected? Talk to them, provide gentle touch and soothing music. Bring the world in close for them. Breathe some life into what little time they have left.
NOTE: Dementia Care Matters ceased operations in December 2019
Gladys Wilson and Naomi Feil (https://www.youtube.com/watch?v=csSj_Ot8gE8).
Post updated June 15, 2021