Everyone needs to really think about what quality of life means to them. But not everyone will actually do it. It’s one of those things that people too often put off and then leave their loved ones wondering. My Dad, thankfully, was clear and consistent in what he did and didn’t want. No heroics. No feeding tubes, no life support, no resuscitation.
He put it all in black and white, and he talked about it while he was still able-bodied and fully aware. It all sounded great and crystal clear. And then it came time to put it into action.
There was a point a few weeks before Dad died that it looked like he wasn’t going to recover from a serious internal issue. We had ruled out surgery because specialists felt he wouldn’t likely make it through. All we had was one medication as a Hail Mary. We were told it was fast-acting but nothing happened in the first 36 hours or so. He was still unconscious, his vital signs were terrible and he wasn’t retaining fluids and minerals.
We had a discussion with his doctor about palliative care. That is not a chat you take lightly. It’s easy to talk about this stuff in abstracts but when it’s a living, breathing person you love, it’s a whole new ball of wax. Devastating. Gut-wrenching. But in accordance with his wishes, and with the approval of my brother, I met with his doctor and we devised an end-of-life plan.
The following morning Dad sat up, opened his eyes and asked our Mom for a carton of milk, which he downed in three gulps. Mom and his doctor called to tell me the news. We were elated. He ate soft foods and his body started churning once again. The word surprise doesn’t quite cover our reaction. I couldn’t wait to get back to the hospital to see him for myself. Derek and I walked in and he gave us a hearty, “Well look at that. I get both of you! How’s it going, Big Guy?”
As you may know, our joy was short-lived. He lived less than two more weeks. Just days before he died his physiotherapist marveled at his tenacity and how he never gave up or complained about his exercises. He had just spent eighteen days in a hospital bed and was weak and tired, but he was also determined. His body failed him, though. Parkinson’s ultimately won.
Do It and Then Forget It
Please, make your wishes clear. And choose someone you trust implicitly to carry them out. In sharing my grief, I’ve heard stories of screaming matches in hospital rooms between family members who are being stoic advocates for their loved one’s wishes, and those who want to maintain life at all cost. I’m so grateful that my brother and I didn’t have to endure anything like that as we did what our Dad asked of us.
Before you accept the honourable duty of being an advocate, make sure you have the strength to override your own feelings of love and a wish to keep your loved one with you, and can truly act on their behalf. It can come down to you being their voice when they no longer have one. What if your wishes differ from theirs? Can you do what they want? It’s simple but it’s not easy. And that’s what makes it worth talking about.