Thanks to Canadian author C.D. Gallant-King for this image.
I really want to go to that conference! Hot diggity, I am SO ready to contribute! I’m needy too, I admit it. I want to grow a network that will help me raise my voice about what excellence in dying really means. I would love to be in Ottawa in September. The Canadian Hospice Palliative Care Association has hit the nail on the head with its vision for the event. How can we all expand all our horizons about a palliative approach to end of life care? Hey, I wrote a book on that! It’s called The Dwindling: Twin Daughters’ Caregiving Journey to the Edge of Life and it will be published this spring. It’s about my challenges finding and then keeping an ‘excellent dying’ approach for my mother. (That’s what some palliative care folks call their way of doing things.) But she was hounded by medical systems that insisted she didn’t deserve such care once she had passed her expected expiry date without expiring. Like yogurt to be tossed out. Mine is just one story. If I tell it boldly though, I’m hoping to encourage other caregivers to share theirs too. It’s the power of ten. Just 10% of us demanding our right to dwindle in comfort and dignity can expand that new horizon of exceptional dying.
Actually, we caregivers are way more than 10%. About 28% of Canadians are doing that job at any given time. We tend not to talk about what we have learned. But we should. No one else in the circle of care is as close to the end of life reality as the family caregiver. Everyone else finishes their shift and goes home. Our 24/7 perspective is not just hard won, it is precious.
But there’s a big financial barrier to this event. Ottawa is a huge air fare away from where I live. Then there is the hefty registration cost, hotel, food, futzing around in taxis…no way I can do that without help! There is no tax loophole I can crawl through, or supportive boss calling it “continuing education” like I’m guessing the health care professionals have to help them along. There is no announced program yet, though the website banners have calls to action like “Speak up—Start the Conversation about end of life care!” Sadly, my efforts to be a presenter or panellist have gone nowhere. The “no way” came in a brisk one liner to my pitch. Looks like I’m blocked by that financial wall.
Another conference looks great too. The Canadian Society of Palliative Care Physicians is meeting in June, closer to home. Its program makes my heart beat faster. The keynote, for example, is “Respect: Earning our place at the table. Towards a cultural change in medicine.” Yes! I would give my eye teeth to soak up those ideas. And contribute my two bits. One workshop asks how physicians can find out about the needs of families and individuals within the “phobic lens” we have of palliative care systems. Another will get to the heart of tricky yet common end of life situations that physicians call “advanced frailty” in public but “dwindling” when they are on their own. My lived experience must be gold to them! Best of all, I can hobnob with the new generation of palliative physicians, who I’m sure will welcome my perspective on the need for broader conversations. One of them actually has a research project about building compassionate cities. Hell ya!
Alas, this conference is off limits too. I’m not smart enough in the right ways. Though it will “educate medical colleagues…patients, families and the general public about palliative care,” only docs are invited. Why? Well, it seems the rest of us just won’t be able to understand the “advanced medical content.” Busted again, this time because I’m considered too dumb to engage.
There’s a problem here. I see a multi tiered system deciding who gets to talk to who about what, and the family caregiver isn’t even on the ladder. If considered at all, it is “care for the caregiver” stuff. It’s seeing my tribe as victims. But I never wanted care. All I’ve ever needed has been to be heard.
There’s a metaphor for that. We have to avoid the trap of drinking our own bathwater. I get it that doctors have to talk to other doctors sometimes without pesky family folks around. And family folks might be more ready to share their truth if they are not afraid of physicians condescending to them. But if we can’t find a way to welcome all the stakeholders to the face to face palliative care conversations, we’ll all lose.
If we are not to gag on our own bathwater, we need to find ways to talk to each other, not about each other.
it's about the journey
Caregiving was my first and finest journey. Writing this book about it was the next. It lends support to other caregivers who say, "that happened to me too." I'm on another journey now, advocating for caregiving and an activist to bring on better ways of thriving as we age. It's all brought me purpose and meaning, Come along and get some of that too! I'd love to share your stories. Boldly speaking out about our experiences makes us all part of the change we want to see. So
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