This idea of having “more time” has been floating through my head for the past few months. I think when we wish for more time, we often think about tacking on time at the end of our lives. Humans have figured out pretty well how to prolong our lives – through medicine and surgery and medical interventions. We read articles to figure out if we should have a glass of red wine every day, or maybe we’re supposed to only be eating rice, or maybe chocolate? (Please, let it be chocolate.)
But, what I’ve realized is that adding on more time at the end of our lives is really hard. It’s exhausting and expensive. It requires incredible flexibility, a willingness to be vulnerable, and lots and lots of support. That’s not to say that I’m not grateful for every minute. Every single second of extra time is so so precious. But it’s not without its costs.
And the real cost is that I feel myself wishing for more time – not at the end, but in the middle. I wish for morewaffle breakfasts and car rides with the windows down. I wish for more movies and hugs. I wish for more long talks and afternoons rollerblading.
When Daddy passed away on Thursday, we found ourselves grieving two people: 1) My father the doctor with ALS, the fighter, the man whose body let him down, the patient, and 2) my father the macho orthopedic surgeon, the world traveler, the history buff, the pilot. As the days pass, I have more memories of him singing to Paul Simon and fewer memories of him hooked up to machines. More memories of him taking me on rounds at the hospital and fewer memories of him struggling to breathe. I know we’ll always remember him both ways, but I’m trying my hardest to remember him as he felt most like himself. When he could drive his convertible and fly his plane. When he could hug us and give us flu shots in the kitchen.
There are no words to describe how grateful I feel now for the extra time we got with him. For his willingness to try new interventions and maintain control over his care. For my family’s immense patience and teamwork as we went to the trenches every day.
The night before Daddy died, we had a family meeting, as we had so many nights throughout my life. Daddy was sleeping, but he’d been communicative that day with all of us. We talked for over an hour about the decision to remove his mask – something the Hospice doctor had said we might need to eventually do. ALS patients have trouble expelling carbon dioxide, and Daddy’s trilogy machine helped with that for over a year, but it wasn’t really doing it’s job any more. We wrestled with what he would want us to do and ultimately decided that we’d ask him the next day.
The next morning around 6am, the nurse from Hospice was dabbing his mouth with water and had his mask in her hand. When she went to put it back, he pushed her away. She tried away with the same result. She looked him in the eye and said, “Wait. I’m getting your wife.” Mom woke up and knew it was time. She called to Danny and Phil, and Danny called me. George and I got over there in less than 10 minutes.
We surrounded him, everyone was touching him, and even Patches was right there on the bed with us. We told him he was safe and how much we loved him. We asked if everyone was ready to remove the mask. He breathed on his own and I knew he needed some strength, so I did the one thing I could think of – I started singing. And it was impossibly hard, but this song had been stuck in my head for a week, and I knew it was meant for him.
With all of us holding him, I got through two verses and he took his last breath.
My latest sun is sinking fast,My race is nearly run;My strongest trials now are past,My triumph is begun.O come, angel band,Come and around me stand;O bear me away on your snowy wings,To my immortal home.I know I’m near the holy ranksOf friends and kindred dear;I brush the dew on Jordan’s banks,The crossing must be near.O come, angel band,Come and around me stand;O bear me away on your snowy wings,To my immortal home.
Even to his last breath, he was totally in control. He made the decision so we didn’t have to, and he gave us the gift of being there with him when he passed.
Thank you, Daddy. I love you.