As a first-time mother, I thought having a baby would be all sunshine and rainbows. When my beautiful daughter came into this world, she turned it upside down. She cried, and cried, and cried – for the first 6 months for hours on end. After using an exercise ball to bounce her into submission, I couldn’t do it any longer. My mother-in-law suggested I try humming. Once I started humming, I’ve never looked back. She connected with my slow, low-key humming and finally was able to calm. Humming unded up not only calming her, but calmed an exhausted, disillusioned mother.
She wanted to go home. She so desperately wanted to go home to Newfoundland. I think, no, I am sure she knew the end was near. That was why she fought me so when I told her she needed to go to the hospital; she was to leave in 10 days to fly home for the summer. My Nan, Mary Lynch. Nanny Mary, as my son, her great grandson, called her. She loved him dearly as she loved us all… her children, her grandchildren, her great grandchildren. But more importantly, she was loved by us all and we would do anything to get her home to Newfoundland.
My grandfather was the epitome of a patriarchal leader of our family. When he became increasingly ill and suffered a very serious stroke, it was devastating. Having the background knowledge of the brain and brain injury rehabilitation, I understood first how serious my 90 year old grandfather’s condition was.
It’s not always easy for caregivers to know if their work has made a difference. Feeling helpless is a common feeling for caregivers, and a sign of caregiver burnout. This story comes from a musician caregiver Nicholas Stirling, who runs drumming and storytelling workshops at the Centre for Addiction and Mental Health in Toronto. Nicholas recently participated in the pilot MCCP Level 2 course, where he shared this story.
A “Thank You”
Her weeping was often spontaneous.
On December 13, 1981, I watched my mother die at St. Mike’s Hospital. The radio played “I’ll Be Home For Christmas” in those final moments, which she would not. Shortly after, in a state of grief, I heard the Alan Parson’s project “Time…keeps flowing like a river…to the sea…to the sea…and it’s gone forever, gone forever….”
To this day I cannot listen to that song without breaking down.
Mary Hutton began to play the piano by ear when she was a pre-schooler. Not surprisingly her first piece was Mary Had a Little Lamb! It was the beginning of a lifelong journey in which music became ingrained in the core of her being. As the 60 years of Mary’s life went by, her faith developed into an inner passion, the “pilot light” of her life. Music was the outward expression.
When my son Jim was ten, he returned from school looking rather down trodden. I asked him what had happened. He looked up at me with his bright, green eyes and said, “my teacher told me not to sing anymore Mum, she said I had a terrible voice”. That teacher had entered a thought into Jim’s head that he had never considered. He had always had a love of singing and with a big, booming and a bit gravely, sound we always said that he had a Kenny Rogers voice. So, he was proud and he sang all the more! We loved his voice and his enthusiasm. It filled our lives.
As we celebrate the birth of the Room 217 Foundation, I want to honour my friend Michele, a lady who loved music and loved Room 217 music. Sometime in the new year, we will upload a video Michele left as a lasting legacy about Room 217 music and how it accompanied her through her end of life journey.
In late March 2004, my mother and I returned home (Kansas City, Missouri) from Canada after speaking for the Alzheimer’s Society in Moncton, New Brunswick. To our dismay and surprise, we found my grandmother’s health condition (which had been stable just the week prior) dramatically compromised. Decisions needed to be made…very quickly.
As dementia care consultants, we encourage family caregivers considering 24/7 home care to answer two important questions: What am I able to do? and What am I willing to do?
Eugene Dufour, past president of the Ontario Palliative Care Association and the Canadian Hospice Palliative Care Association, who has been working in the area of mental health, hospice, palliative and pastoral care for the past 25 years, shares some of his poignant reflections.
Look For The Flicker Of Life:
It is an amazing thing how the threads of our simple rituals can become the very fabric that keeps us together when our lives seem to become unraveled.
Alzheimer's and dementia. Frightening terms. Unknown territory. A place we do not want to travel. But as with so many journeys we take in life, Alzheimer's and dementia often arrive without fanfare; insidiously progressing until they are finally named and we realize our lives are on a new course for which we have not packed nor collected road maps.
As we gathered as a family in room 214, it would be the longest night of the year. Our personal winter solstice was about to unfold.
It wasn't easy saying goodbye. It wasn't easy hearing, "The end is near." We laughed. We cried. We whispered our love. We were longing for reassurance! it never came.
The beautiful strains of "Spirit Wings" lifted our spirits as the hospital clock ticked down our goodbyes.
November 2006 !! My eyes are so filled with sorrow they feel like they are melting. My heart is racing, I feel as if I am anticipating certain dread; as if our lives are resting on a thin edge, constantly under the threat of tipping over ... falling ... down ... down ... spiraling out of control ...
I want to thank you for sharing your amazing gift of music
My Mom, Molly Sinclair has been in critical condition in the hospital for the last few weeks!.on day 3 I thought about your Room 217 music and how it might bring comfort to her.
From the very first bars, it seemed to draw Mom in, calming and focusing her thoughts. The first day we had the music we played it over and over again for 24 hours straight. The nurses knew that when she began to be agitated, just to press the start button on the CD player, they were amazed at how quickly she would respond.
My daughter Karen gave me your brochure from the conference in Oshawa that you both presented at several weeks ago. When I read that you were interested in hearing stories about caring for a loved one it reminded me of something I had just done.
Our family has always been close – bound by poignant memories of our childhood and the frequent family gatherings/celebrations after we left the family home to study or raise our own families. With 8 busy kids, and parents that were very involved in their own business, their church, the large extended family and in their community, the house was filled with friends, laughter, debate and music! Mom was a piano teacher and coached several singing groups.
It is 6:30 p.m. as the phone rings! I quickly glance at the display which shows « York Manor ». Immediately, I have a feeling of guilt because I have not been able to see Rina for the last three days, due to a bad cold. But the staff and I have an understanding; if anything serious develops, they call me!
I recognize Debbie as she says: “Clarence, I thought I’d give you a call. Rina is having a bad day. She did not touch her supper and she is not responding to our efforts to pull her out of her sad mood”. As this behaviour is very rare, I reply: “I’m coming right away!”
The Room 217 Foundation is pleased to announce a new program called Room to Room (R2R) which delivers Room 217 music into Hospice Palliative Care (HPC) facilities and programs in Canada. With the generous financial support of the GlaxoSmithKline Foundation, R2R is a donor-driven program enabling the Room 217 Foundation to provide kits made up of Room 217 components to meet specific needs of HPC contexts i.e. residential, community, hospital.
I work as a bedside nurse at the West Island Palliative Care Residence, located on the western tip of the island of Montreal. West Island Palliative Care Residence is a 9-bed community hospice offering interdisciplinary care and support for patients and their families at end of life.