Loading...Last night I had another strange dream. I was with my hair dresser and for some reason my older brother, Jason, was there. I was trying to explain that I wanted something fresh, I was getting a little bored with my hair, and can she think of something stylish to do? Then Jason piped up and said “Honestly since you have been her hair dresser I don’t like anything you’ve done for her hair.” This, of course, despite being something my brother would never say, really pissed off my hairdresser.
As you can imagine, she gave me a crappy haircut, really short and choppy. Afterward, I was quite concerned about the blue highlights in my hair. I kept asking her: “Did you cut out all of my highlights? Do we need to refresh them?” and she kept saying: “I don’t know, do you want me to redo them?” and I just kept asking. I just wanted her to tell me what to do. She’s the professional purveyor of blue highlights, she knows more about this topic. Since getting the blue highlights originally in November 2019 I have learned many things about blue highlights but I am by no means an expert. I just wanted her to tell me what to do.
I’ve been thinking a lot lately about the very fine line between choice and necessity. For example, the last time I took my dog to the vet because she was chewing on her feet non-stop. The vet kept giving us all these choices of what medication to give her. I just wanted to say “I am not a vet! Just freaking tell me what to do!”
Ok, forgive me, I am going to back up a bit. During one of our many visits to Albuquerque, New Mexico in the years toward the end of Eric’s dad Alan’s life, we were present when he was being admitted in to hospice care. If you have never been exposed to hospice care, you should understand that this is indeed the most counter-intuitive experience you will ever have. You start having conversations about “life saving measures” and “do not resuscitate” orders. They have you a big sign to hang on your refrigerator stating that if you are dying, if your breathing has stopped, you do not want to be saved. Hmmm…you do not want to be saved.
You see, hospice isn’t about saving your life, it’s about ending your life. Not in an active way, but in a very passive way. I remember during the meeting with the hospice nurse when Eric’s dad was being admitted, there was this moment where the nurse is asking “Do you understand? Do you agree?” and there was this almost tense moment when I think all of us wanted to shout out “Of course not! What are you fucking nuts?” but that’s the problem again, choice vs. necessity. There is no choice, why are they asking you like it’s a choice? It was a necessity because hospice provided services that Alan desperately needed.
I remember after the nurse left and everyone but me left the room, Alan said to me: “it’s not fun talking about your death.” And I paused for a second, I wanted so desperately to come up some sort of Maya Angelou level of profound wisdom or comfort in that moment. All I could say was: “I don’t suppose it is.”
Let’s fast forward a bit. Eric and I drove to Aurora, Colorado very soon after hearing my Dad had been admitted into hospice care. We both understood what this meant, and the urgency was palpable. When we arrive, my Dad was actually standing, he was able to, with the help of a walker, get out of bed and move to the commode next to the bed, sit, do his biz, and then move back to the bed.
They had put a hospital bed in the living room and he was constantly fiddling with it, he seemed to be seeking the sweet spot between head elevation, foot elevation and pillow placement. Eric, me and my stepmother Marge sat by his bed and tried to help him in his quest for comfort. One of the “problems” was that he wasn’t in pain so we weren’t sure when to give him the morphine they had left for us. They said it would also help his breathing, but he seemed to be breathing ok.
It was two days of up bed, down bed, fiddle with the pillows. The nurse came Tuesday morning and said that he was having trouble breathing, we didn’t believe her. She asked where the oxygen was and we said he didn’t want it so we didn’t order it. She said to take the bed control away from him and we said no, that was the only control he had left. She said give him the morphine and we reluctantly agreed and gave him the lowest dose and he spent most of the rest of the day asleep.
That made us feel bad, we felt like we had doped him and so he wasn’t able to really stand up anymore. He tried to get out of bed and me, Eric, my step-mother Marge and my Dad almost ended up on the floor. Marge said she wanted him back. She wanted him to be able to get up again, to go to the bathroom, to sit on the edge of the bed rubbing his back while she talked about their sailing adventures.
We all had a terrible night and I woke up with a certain amount of dread and clarity. They needed to take away our choice. We were making the wrong choices because we loved him and didn’t want to lose him and it’s no fun to talk about your own death. They needed to tell us what to do, they needed to take away our choices because we were making them for the wrong reasons.
I called the nurse, used the word “road map” and she returned. The oxygen came and we agreed on a schedule for the morphine and the anti-anxiety drugs. She explained to us, whether it was true or not, that him being asleep all the time now, essentially in a coma, was more about the progression of the disease than the drugs. That was what we were witnessing was him comfortable and up down of the bed was him in discomfort.
And so he slipped away from us 36 hours or so later. He was comfortable, he was peaceful. As the aide who was sitting with him said at 1:30 in the morning: “There’s no more breathing.”
It’s no fun to talk about your own death, or the death of someone you love. It’s really no fun to have to let go of any power you ever thought you had over life. It’s hard to understand that you need to surrender to the inevitable because it’s inevitable whether it’s good or bad, and you can do is try and make it as good as you can. I guess that’s the only power we have: “as good as you can.” That’s love, right? As good as you can.
