Little Dude still asks to go to Nana’s house. At three, he has no concept of death and what it means. He just knows Nana’s house was fun and full of love, and he wants to go to there.
Only now, there is no Nana’s house. Today it changed hands and will hopefully make some other family happy. Perhaps they’ll make their own memories eating family meals at the dining room table and playing with the multitude of spices that will hopefully fill my mother’s spice racks.
My mother had hoped the house would provide comfort to other families going through the horror of what her family faced, not once, but twice in the last five years. She offered it to the Hospice Society to be used as a residence for those in their final days and weeks.
Unfortunately, county zoning by-laws mean that won’t be possible but my mother still did an incredibly generous thing… she gave her house to the Hospice Society anyway. It is a gift that she hoped would still offer comfort to others navigating a terrible time. The Colchester East Hants Hospice Society offered her so much after my father died and then again when she was facing her own terminal diagnosis. The support, the grief counselling and even just a friendly ear were all welcome distractions from the terrible future she knew she faced.
It seems strange to say after the death of both my parents, but we were lucky. Both my parents faced their terminal diagnoses in Truro, Nova Scotia. It has one of the finest and most comprehensive palliative care programs in the province. We met amazing doctors and nurses who focused not only on the patients but on the family as well. They offered home visits, a phone number where a nurse could be reached at any time of day and help finding a care giver to stay with mom when my sister and I could not. The doctor even dropped in one Sunday with his daughter in tow because my mother needed him. We are blessed to have known these people, particularly Ann, Lisa and Dr. Henderson. I don’t know how we would have made it through this time without their support.
I would be remiss, however, in discussing the palliative care services in Truro if I didn’t discuss what my parents did not get… and what so many other still need. There are incredible people on the palliative care team there but they cannot do it all. My mother needed more than just medical care. She was in deep emotional distress. Who wouldn’t be? She was told she was going to die… and that the end would not be pretty. The palliative care team did the best they could to support her, and us, but they are medical professionals and they were there to make her comfortable. There is no social worker on the palliative care team to deal with the emotional realities of facing death. The Hospice Society stepped in in many ways but there is no substitute for having someone working directly with the team.
I’ve recently been told that the palliative care team in Truro is also being reduced to one doctor from two. These seems like a tragic misdirection of funds. Leaving people to die in their homes, as the majority of people would prefer, is much cheaper than putting them in hospital. Yet having only one doctor on the palliative team means he will have to spend much of his time on the Palliative ward, that will tragically be busier since he will not have time for as many home visits.
It will also exacerbate an already big problem. People are dying on waiting lists. I know we hear that about many areas of our health care system, but isn’t it such a sad irony that they are dying on the waiting list for supports to help them die. My sister and I have seven children between us and we do not live within an easy commute to Truro. If we had not had the support of this generous team, my mother would have ended up in hospital or she would have done what she absolutely dreaded and died in one of our homes. Either way, the level of stress in either situation would have broken us. My mother’s last few weeks were terrible but I took comfort in knowing she was surrounded by friends and looking out on the yard she and my dad planned meticulously. It is hard to see us as lucky after having gone through this experience, but we were.
What is also hard to believe is that, had my parents not lived in Truro, they would have never received this level of service. Palliative care teams vary from county to county and from province to province. Some places have a doctor but no nurse, many have no drug coverage so, unless the patients is in hospital, he or she must pay for all medications when dying at home. With the level of morphine and the multitude of other drugs mom was on at the end, it could very well have bankrupted her, and perhaps us.
The subject of dying is taboo in our society. Many who have been through palliative care with a loved one are so steeped in grief they can’t speak out in support of palliative care. It is tempting to retreat into my shell and find a way to live my life without my parents but I just can’t do so. Palliative care needs it advocates. People deserve to die with dignity, not lonely in a sterile hospital bed. Financially it makes sense for the government to commit to quality palliative care. The more supports people receive at home, the fewer expensive hospital stays. Less than a quarter of Canadians have access to Palliative Care. Surveys and studies show most people wish to die at home but 70% of deaths occur in hospital. These are sad numbers and even sadder realities.
My mother’s house is no longer hers today. I will miss the comfort of being able to go home: of knowing the fridge holds a few of my favorite snacks, of having my pick of a multitude of books and, most of all, of knowing no matter what, there was love and acceptance inside those walls.
I can only hope my loss will be a gain to people in need. The Hospice Society will use the money to do good in the lives of other people facing the same awful journey both my parents had to navigate. People always told me my mother was generous and brave… I think this is a fitting final action for a woman who may have never believed what everyone else knew to be true.
Thank you mom.