I’ve been doing a lot of reflecting the last couple of weeks as I’ve attempted (with my family) to help Dad navigate the beginning of a different life – the next life. A life without Parkinson’s and all the other malarkey here.

As I write, he is hanging on. He’s been hanging on for several days. He’s given me a lesson in humility as I keep realizing that no matter how much education or experience I have, no amount of prediction is full proof. After my fourth or fifth “this is it” was completely wrong, I stopped trying to guess.

My doctor asked  me today if I was ready for this to happen. I told her that he and I have been talking about this for well over a year. I want this for him, because he has wanted it so much. What I was not prepared for, was how difficult this has been. Dad did all of this “right.” He filled out his forms, got all his ducks in a row and his affairs in order. I told him the beauty of palliative care is that it would be painless when the time came.

Boy was I wrong. I already knew that palliative care that is apart from Hospice is a new concept. I knew that accepting mortality is a tough idea for people to grapple with. I just didn’t anticipate how ginormous the gap actually is. At one point, I had his primary doctor tell me that medicine is not practiced “that way” in America. He truly thinks I have some wacky idea that doesn’t even exist.

The place where he lives is also way out of tune. I approached them back in January and warned them this would be coming. Of course, they ignored that conversation over the last eight months. The result has been devastating.

I pointed out that Dad is only the beginning for them. As this idea catches on, there will be more and more people. Someone finally asked why amazing, compassionate health care is only found at the end of life. Someone finally realized that patients should be driving their own treatment, not medical staff. Now the movement has begun but it is even more difficult than I could have imagined.

That has been the hard part for me. If Dad has to go, I wanted to help him have it on his own terms. A hard-working war veteran should have the right to end his life the way he wants. And he definitely should not have to suffer because of that decision.

We finally have Hospice, but it was the battle of all battles to get it for him. There is no do-over, no second chances with end of life stuff. I just have to hope he knows how hard I fought for him. We eventually succeeded, but he suffered longer than he should have before he got “comfortable.” Damn it to hell!

Please pray for him. He is tired and ready. He seems to have a hard time letting go. I want so much for him to be able to relax into what lies ahead for him. It’s almost over, Dad. You just have to let yourself embrace it. You so deserve the rest and healing that is waiting for you.