Amidst the awfulness of watching the most important person in your life die in a hospital bed in your dining room, there are gifts and there is sweetness. We look for those individually and as a family. We dance around death, surrounding John with love and laughter and tears. There is chaos and dogs barking, food being prepared in the kitchen just off the dining room, people laughing, the T.V. on. And he’s happy to be in the center of it all, sometimes asleep, sometimes resting his eyes and listening, always a presence for all of us.
This man certainly has made an impact in his life and he’s leaving a legacy of love as he departs it. He’s had visitors from all of the times in his life, from high school friends to old girlfriends (one of whom is driving from Seattle just to say goodbye as I write this), work friends and friends we’ve met together, close and far-away family. Our friend Chuck, who lived in our motorhome for three short months in 2011 while he was here working at a winery, felt so strongly about saying goodbye that he flew all the way from Tampa, Florida on Monday just to spend a few days. We’ve been inundated with messages of love and memories of good times spent together. You can see who John is, the imprint he’s leaving on so many, in this outpouring of love.
He is physically changing drastically every day. The hospice nurse visited yesterday and was shocked at his decline. She estimates that he’s lost at least twenty pounds since last Wednesday when she was here. He has no fat left and his muscle tissue is being consumed by the cancer daily. Since he’s no longer absorbing anything he eats (via mouth or feeding tube), we’ve surrendered to that and he’s stopped eating (unless he craves a bite of something or just wants to taste what we’re eating, but that’s not really happening anymore). He’s on constant pain meds which makes him fairly lethargic, but yesterday we got a Fentanyl patch so hopefully that will even out by tomorrow. He hates being “loopy.”
That being said, he’s still here. He is still ambulatory, choosing to get up, shower, shave, and put on cologne (“So I smell like myself for you guys”) every day. He told me last week he wants to sleep upstairs in our bed at night as long as he can get up and down the stairs. This private time at bedtime and first thing in the morning is more precious to me than gold, the quiet talks and tender touching feeding my memory for a lifetime. Last night he made it and I’m hoping we have at least a few more nights. He gets weaker every day and we don’t let him get up and walk without someone shadowing him in case his legs give out.
Most importantly, we are all spending time with him. In the quiet evening hour before bed, when all of the company has gone, our family gathers, sitting on his bed, lying next to him, pulling up chairs, and sharing. We tell stories and laugh, ask questions and listen, share sorrows and cry. We are there for him. We are there for each other. This time is so precious to all of us, especially him. A few nights ago, after it happened the first time, he woke up in the middle of the night to tell me how much he loved it and how important it was to him.
Oddly enough, this very difficult time also feels like a blessing. John is still here, can still hear what we need to tell him and say what he needs to say. It’s a gift that most people don’t get. When he does finally pass, there will be nothing left unsaid. We will surround him with our love for the last time and release him on his journey. He keeps telling us he will just be “in the next room,” not gone but just not here in the way we’ve always known him. He believes he will still experience everything we experience, just in a different way. He believes that the relationships he has with those he loves aren’t ending, just evolving. He is not afraid to die but told me today he doesn’t feel like he’s going anywhere right now.
We have an app on our phones called Life360 that our family uses to keep track of each other. It’s a GPS app that tells us where everybody is at any given moment. We’ve teased John about “creeping” on that app, stalking us, especially when one of us is traveling or out of town. On Sunday, I opened it to see where my son Eli was and said to him, “I wish they could put heaven on here so I can see where you are once you’re gone.” He pointed to the spot on the map that is our house and said to me, “It’s already there.”
And for today, so is he.