It's been a month plus a few days since my wonderful friend Carolyn Kelly passed away. Everyone, including one of her doctors who phoned the other day, keeps asking me, "Are you all right?" Yes, I'm all right. Honest. I've had a ton of things to do like cleaning out her apartments and managing legal papers and I still have some of that…but I had somewhat gotten past Carolyn's death before it happened, if you can understand what I mean by that.
Over the next few weeks here, I'm going to write a few pieces about the experience. If any of them make you uncomfortable, please just skip them and move on to the next post, which will probably be about what a truly horrible president Donald Trump is turning out to be. But I write about some things just to sort out my own thoughts and feelings, and sometimes I post them here because I think/hope that something in what I write will help someone else out there. If it doesn't, it doesn't…but that's kind of the secondary reason for my writing it. The first is usually for my benefit.
Writing helps me. A lot of other things helped me through the period, one being a fine team of palliative care doctors at Kaiser Hospital. Before Carolyn, I lost people close to me including my mother and my father…but I had somehow not even encountered "palliative care." I only knew what it meant from afar. It means — and I am here cutting-and-pasting from another site —
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
— but I'd never worked with such a team. I can't tell you how impressed I was with the kindness, the understanding, the efficiency and just the general caring from the squadron we had. When I was in for a check-up from my own physician, I mentioned to him how terrific these folks were and he said, "I'll let you in on a little secret of the medical profession. Most palliative care people are terrific. The job attracts the people with the largest hearts and the greatest empathy. You will probably be even more impressed when you begin dealing with hospice."
That also proved to be true. The last week or so of Carolyn's life, two hospice nurses took turns pulling twelve-hour shifts to be with her. I sat for hours with the "night nurse," a young woman of about twenty-eight who was so sharp and understanding, I'm sure she could have worked in any area of medicine she chose. She chose hospice because, she said, it was there that she felt the greatest sensation of actually helping people — the dying person and their loved ones, as well.
I was reminded of a friend of mine from high school who I've written about here. He's semi-retired now but he spent his entire career as a doctor working in an emergency room. Every time they tried to promote him outta there — even though the so-called "better position" meant better money and hours — he said no. He told me, "They keep wanting to put me in a job where I'll shuffle papers and refer people in pain to specialists. In the E.R., I actually do things to make the pains go away. That's what I became a doctor to do." How can you not respect someone who thinks like that?
The palliative care and hospice people made it possible for me to do something which I have learned is vital in one's life when you have a challenge like the long, long months in which Carolyn was dying and nothing was going to stop that. I had to keep my own life up and functioning, writing scripts and meeting deadlines…oh, yeah — and earning money. Even with good insurance, what went on with Carolyn was not cheap.
I could not be unavailable when she needed me for something but I also could not devote every minute to her care. Maintaining my perspective and judgment were essential, not only for myself but for her. You can make a situation worse by over-reacting as well as under-reacting. You need to constantly ask yourself, "How big are the problems today?" Only then can you effectively deal with them.
You also have to know what you need to do yourself and what you can/should delegate to others. Others could change her pajamas or dole out pills or prepare her food as well as I could or, probably, better. None of them had as much trust as she placed in me. None of them could make her smile or laugh as much as I could…or reassure her that someone who loved and understood her was watching out for her, taking care of her bills and her apartment, etc. My assistant John could deliver items to her but I had to be the guy in charge.
When they'd done as much as they could do for her in the hospital, we moved Carolyn at first to what they call a Skilled Nursing Facility — and at this one, the "skilled" part seemed mostly correct but not always. It was more often correct when the staff there knew she had someone like me around to supervise and complain.
Then she spent eleven months in an Assisted Living Facility where the remainder of her life played out. The nurses there were great and we quickly found the proper balance of what I had to do for Carolyn and what I could trust them to handle.
They really loved her. So did a lot of the other residents in the facility. Until things got really bad, she was the sunniest presence there, making all assume she was much younger than she was and offering kind words plus that great smile to all. When John or I went to the market for Carolyn, she'd usually ask us to get some candy or fresh fruit she could pass out to the other residents. It seemed to actually help Carolyn — her mood if not her health — to do that.
A number of cartoonists we knew — including Jim Davis, Sergio Aragonés and Scott Shaw! — sent "get well" drawings which Carolyn put up on her wall. Other residents would stop in to see her gallery and be very impressed that Carolyn knew such people. She put one of the Pogo collections she edited in the communal library and got us a few new Groo the Wanderer fans by passing around copies she asked me to bring her.
There was a woman there…I guess she was in her late eighties. The last month or so, she didn't see Carolyn because Carolyn was confined to bed in her room. Every time this woman spotted me in the hall, she'd asked me, "Is she any better? Is she any better?" The answer was always no and I felt bad for this woman that I couldn't say yes.
I mean, I could have engaged in some phony optimism. I did a certain amount of that with Carolyn for months but I knew how it was going to end and after a time, Carolyn did too, especially after Kaiser turned her case over to the palliative care department. She stopped asking me, "Do you still think I'm going to make it?" At some point though, and without discussing it, we mutually agreed to be more realistic. We didn't talk much about dying but we spoke less about not dying…because we both knew that "not dying" was not going to happen.
Friends keep asking me, "Was there a moment when you knew it was almost over?" Yes, several. A year or so earlier, Carolyn had signed an Advanced Care Medical Directive which essentially said that if and when the time came that she was unable to make medical decisions for herself, I would be legally empowered to make them on her behalf. Even if you're in great health, you should have one of these…though as I type this, I realize that I need to make out a new one. Mine still says that if I can't decide for me, Carolyn will.
When the palliative care folks called and said, "As far as we are concerned, you are now deciding for her," I knew she had weeks, not months left. One of her doctors had laid out a timetable for me of what would happen and when. If you added about 16 days to every approximate date he gave me, he was right on the money. In the next few weeks, there were other indicators that the end was closing in on us but that was the big one.
I'm sure someone reading this will write and tell me of a horrible experience with palliative care and/or hospice. Don't bother. I'm not saying they're all infallible or even good. I'm just telling you my story and expressing my gratitude to some fine doctors and nurses. I cannot begin to tell you how much they helped her…and in many ways, they helped her by helping me to help her. I'll write more about this in a few days.