Lately, I feel like the grim reaper with death and dying being a prominent feature of many of my conversations online and off. When you are caring for someone who is sick or has a life limiting, life threatening illness death definitely pokes its head in your window. And being part of a palliative hospice death basically sits on your stoop waiting to come in.
What I am learning is that death is not linear. It doesn’t start at one spot and end at another. I guess some people would argue it begins at birth and ends at our last breathe. But when you have a life limiting illness or a diagnosis that is life threatening, like Duchennes Muscular Dystropy, AIDS, certain stages of cancer, or like in my daughter’s case, a rare complex disease, the process of ‘dying’ doesn’t seem to follow any one course. I’d even argue there is no discernible beginning and end.
I bring this up because the last few weeks I have been traversing a slippery slope with Sophia. Her disease process, as complex as it is, seems to have become even more complex. Sophia is suffering from pain, severe pain and while the amazing professionals in our life bind their knowledge and experiences, sophia and I have to traverse lightly through her suffering on a different level. As a mom, I grapple with questions like, “what stage are we at?”, “where is this leading?”, thinking that those answers will ensure the best possible care and support is in place for Sophia medically and physically, spiritually.
The thing is, no one can know the answers. Sophia is in extreme pain and we have been trying a few different techniques and medications to help her. I had the expectations that if we find the right cocktail she would perk up and we would regain a sense of our live moving.
The word ‘palliative’ began its rounds at the same time we had to put Sophia on a drug called Nozinan. Both grabbed me by the ankles like a vice and I couldn’t move.
Palliative…when I hear palliative I think of end of life. I think, here we go, call everyone, death is imminent. Up until now, that has been my experience with palliative. When. Y dad was palliative, he died shortly there after.
So when the word palliative started showing up in conversations regarding Sophia I was knocked into shock. Sophia’s not palliative, she couldn’t be. Sophia still has moments where she can go swimming, or we take her out for sushi. She giggles and there are times when she still belts out those teen karaoke songs! Sophia can’t possibly 'be’ palliative!!
But one of our Advance Nurse Practitioners began to explain that those who are 'dying’, for lack of a better word, start to instinctively make their world smaller. Sophia stopped going to school a while ago, she is reluctant to leave the house, some days even her bed. She stopped eating food or wanting to eat. Sophia began to withdraw and tuck into herself physically, emotionally and probably spiritually.
Her world has indeed become small…and the only way we have been able to ebb her pain and suffering is to put her on this medication, Nozinan, and have her fall into a deep sleep. I can’t breathe.
In true mom therapeutic form, I started doing research on the word 'palliative’ and began to have open discussions on what this word meant for other people. Most were like me, the word palliative evoked strong feelings around death and dying and the sense of imminence.
The Canadian Hospice Palliative Care Association just celebrated National Hospice Palliative Care Week. CHPCA’s definition of palliative “aims to relieve suffering and improve quality of living and dying.” Wikipedia indicates palliative is a “multi disciplinary approach to specialized medical care for people with serious illnesses.” The origin of the word itself is “under cloak, covert”, “relieving or soothing the symptoms of a disease or disorder without effecting a cure.”
As I wondered aimlessly around the World Wide Web defining palliative it struck me that the word didn’t stand alone. Palliative is always complemented with the word 'care’. And when I had a heart to heart with our own hospice counsellor, she looked at me and softly said, “Bev, you’ve been providing Sophia palliative care for quite some time. Palliative is not a diagnosis, it is a model of compassionate care.”
Palliative is not a state of being…it is a model of compassionate care. In living grief I’m learning to accept that care happens to include supporting Sophia’s rest, her choice not to eat, her desire to hunker down in her room, all comfy under the covers and to use medication like Nozinan to help abate her suffering.
It isn’t easy, palliative is never easy. But our goal is to ease Sophia’s suffering on her journey..