In response to the article in the Niagara Independent on July 24, “Oosterhoff calls for better Palliative Care in Ontario” – I share my personal story in support of that.
Just as the Terror Attacks of September 11th changed our world forever, at 4:20am September 11, 2017 my world changed forever. My mother, Joan Edith Waddell, died in my home.
Being diagnosed with Congestive Heart Failure many years prior the journey to her death was a long and difficult road. A road with many pitfalls that could have been avoided if a clear Palliative Plan was in place. A road with treasured memories birthed out of that death journey.
On that journey we found many loving caregivers, but we also encountered many in the Health Care system that were untrained and without much compassion for our journey. We found that our Health Care system does not always help people die well or supported. Recently, I was told that in the eyes of the Medical Profession, death is seen as their failure. Could that be the reason for the avoidance to face death with patients?
As a volunteer with Hospice Niagara for years and being my mom’s advocate for many years, I knew of some services available but gaining access to those service was, at times, a daunting task. I remember telling her caseworkers, “We are in the most difficult time of our lives yet WE need to seek out and fight for any help we can get”. I remember one particular incident when I had to refuse to allow my mother to return home (where she lived with me) because the St. Catharines General Hospital insisted she be discharged despite the fact that she was unable to get out of bed or walk to the washroom. They said it was my responsibility to get care for her while I went to work to earn money to pay for the home we lived in. The home care hours allotted her were minimal to the care she was requiring.
As her condition allowed, I placed her in a Senior Day Care at LinHaven Nursing Home. For many years that Daycare and the few hours of Home Care I was given was all we had to allow me to keep mom at home. In the last year of her life, my sister and her husband, from out of town moved into my home to help with our declining mom.
In April 2017, I went off work on Compassionate Care Leave, as it became too difficult to work all day and still have the energy required to care for her debilitating health issues along with the fact that my mom was more relaxed when I was home with her. She was my priority and her needs had to come first whether I could afford it or not.
As her condition worsened it became clear to us that she would not “bounce back” this time. We knew that our mom was dying even if no one else would say those words. Even in that, we could not get her deemed Palliative because “CHF” has no clear end of life timeline. More services were available through Palliative Care, which I knew through my volunteer work and research, yet we could not access that help. We both cried at the frustration of it all! My frustrations boiled over everywhere……with my family, at the hospital visits, with the doctor, with her CCAC social workers….but to no avail. The system was broken! It seemed hopeless and we were going to die alone!
Finally, I took the definition of Palliative – “A life altering debilitating disease that is going to end your life” – to our family doctor and requested, (kind of insisted), she get a referral to the Palliative Care Team. He agreed, (pretty much to appease me), but said he was sure it would not change the fact that Health Care had none of the extra services we needed.
After that referral nothing changed immediately but before long an “Angel” from St. Elizabeth Palliative Care Team visited us. She listened, she cared, she understood what we were going through. She visited once a week at first and in the end was coming daily. This nurse became the light at the end of a very long dark tunnel we were trapped in. It was still incredibly difficult but now I knew there was hope on the horizon.
I remember the day she came when mom was in a particularly bad way. She picked up the phone, called Doctors, Hospice and CCAC in what seemed like I was watching a clouded version of life in real time. I watched her spring into action as that of a super power. She knew calling 911 was not the answer as it would not improve our circumstance or would not help mom’s anxiety. She understood that we needed Home Palliative End of Life Care. I think it was the next day that the Hospice Home Care Team visited us and continued to come for months until her Death. That team made available everything that was needed for us to allow mom to comfortably die at home.
Although better Palliative Home Care did not change our destination, it certainly made the journey more bearable. They saved my life and allowed me to once again become a daughter to my dying mom instead of her Health Care supplier.
Are there good Palliative service available in Ontario? Absolutely!
Are there enough? Absolutely not!
There are many cracks and gaps in our Health Care System which make it difficult for “a Good Death” to be available for everyone in Ontario. There are only 10 beds in Hospice Niagara. How can that possibly meet the needs of our aging population, not to mention those with terminal illness. Long term care facilities are full with long waiting lists and most of those we visited told us that our mom had too many needs for them to care for even if they did have a spot.
So many gaps in a fractured system – but people are still dying – and not Dying Well!
I remember telling the Hospice team that this personal journey of Death with my mom would inevitably make me a better volunteer. Little did I know at the time what that would really come to mean!
Months later, I later found out about the Home Hospice Association and Death Doula’s – or should I say that destiny connected us. I learned that the Home Hospice Assocation began to answer two important questions:
- if 69% of Canadians want to die at home, why can’t they?
- if 84% of Canadians have no access to Hospice Palliative Care, what are we doing about it?
Through Death Doula Training & Certification the Home Hospice Association can assist the “Dying to Die Well”.
I am now training as a Death Doula to assist other families and help fill in some of the gaps in our Health Care System in respect to the needs of the dying. It is not the intension of Death Doula’s to replace Hospice, Doctors, Nurses or any other medical or care professionals but rather work together as a team and “Be Present to the Dying” , while possibly filling some of those gaps so families can feel safe and supported enough to have family members who want to die at home be able to do so.
The dream would be for all to work together as a cohesive team to improve End of Life Care in Ontario.
I am excited to read about MPP Sam Oosterhoff’s Bill to improve Palliative Care in Ontario because…….
“WE ENTER THE WORLD INTO LOVING ARMS, WE SHOULD LEAVE THIS WORLD IN LOVING ARMS AS WELL!”
In love and caring support,
Maggie (Margaret) Morris