Walking an Unknown Path

Facebook Post, January 23, 2016:

Nick is continuing to fail. He is now receiving in-home hospice care. He’s pretty much wheelchair bound. Between that and the cold weather, we don’t get around much.

The goal of his medical care has shifted from the impossible job of making him better to the realistic goal of making his end of life and transition to the next world comfortable. We’re grateful for all the time we have had together, and for the rest of the time we still have. Not every couple gets the time to reflect on the life they had, and on where they go from here.

Please feel free to call, to write, and, if you’re local, to visit – please just call first because there are a lot of healthcare workers in and out, too.

I know you won’t want to “like” this post, but for this post, and future updates, I’ll consider “like” to mean something akin to that you send your love, your thoughts, your prayers – and we are thankful for them all, as we are for you.

It’s hard to believe that was two years ago. It’s even harder to realize how quickly things moved from there. Was it really just 25 days from entering hospice to his death? I know it was, but it doesn’t seem that it could have been. The timeline is all confused in my mind now. At first, he was bedridden, but not yet in a hospital bed; he slept a lot, but he was still himself. When I first broached planning the funeral, and picking readings and hymns, his attitude was that he wouldn’t be there, so I should pick what I wanted. And then, when I did, and shared it all with him, he started changing everything: “oh, I don’t want that song; I don’t like that reading.” So, in the end, every bit of his wake and funeral were planned together, down to the altar servers, the readers, even the pall bearers. He went from being detached from it, to planning it. He even approved his obituary, the holy cards, the pictures in the program I wrote for the Funeral Mass, the urn, the flowers, and even the menu for the meal after Mass.

Of course, once all that was done, I had time on my hands to think too, too much. And Nick kept slipping away from me, a bit at a time. One day he was playing along with Jeopardy; the next day, he thought he was a kid again. He wanted to go to school (and he was able to name his correct Junior High). I didn’t mind when he asked me where his mother was, and why I was there instead. The only time it really hurt was the day he called me “lady” and asked me for a blanket.

Then there was the day he wanted paper and pen so that he could write me one last letter. Nick, the typesetter, whose printing looked like it was typeset itself, wrote me one last letter, but all he managed was a squiggly line.

That squiggle became my first tattoo a year later. I added the heart a few months later. On really bad days, you’ll find me stroking it.

That last journey we took was the first journey we travelled on different paths. He slipped away a little every day, sometimes lost in childhood, sometimes asking me to help him open a blue door that only he could see. We were on the same journey, but with different destinations. He needed to let go of this world, of all the “stuff” of life, and go through that blue door, a door I could barely imagine. For my part, I had to escort him to that door, and help him leave this world and me behind. One of the hardest things I ever had to do was to tell him to go; to give him permission to walk through that door.

Dying is hard work. Accompanying the one you love on that journey just might be harder.