My dad is dying at a pace hard to identify. He has Alzheimer disease and appears to be headed into his “end of life” phase. He’s a great guy and even in his progressing dementia, he is clearly working hard to exhibit cooperation and a positive attitude.
As a physician assistant for 13 years and an athletic trainer for more than 25 years, I’ve learned how to put on the game face when the people I’m blessed to encounter as patients experience grave injury or illness. I’m a good compartmentalizer, something that my wife asserts is a gender thing. “You men are good at that,” she says. “Men can compartmentalize.” And I can do it with the best of them.
But wading into this experience with my father puts me face to face and in touch with what my patients and their families deal with all the time.
How do I juggle job, family, friends, self-care and being present for my father, who lives almost 200 miles away? How do I navigate family and medical leave, and minimize the impact of my absence on my workplaces while doing what I absolutely must do?
I have no choice but to answer the call that comes once — the call to provide badly needed help in the care of my dad as he heads out the gate.
I also am experiencing “empathy bleed,” where my raw emotions about my father’s nearing death are impacting the way I experience my patients.
I’ve sought out settings my whole career in which patients are homeless, severally ill, ravaged by addiction and products of childhood trauma and neglect. I find the patients I work with inspiring in their courage and the way that they persevere, and I learn from them daily.
But when patients get very sick and when they die, I’ve had to learn to distance myself from the process to be able to stay in my field and to avoid burnout.
However, now that I’ve had to open the door to real emotional engagement regarding my father’s illness, I’m finding it hard to close it when it comes to the patients I work with. Consequently, I have been more impacted by their challenges and have been thinking more about them when I am away from work.
This is hard. My father’s illness and his sad decline go here in this box, but the pain and suffering of my patients goes in this other box? I’m getting the emotional boxes mixed up and am finding it challenging to keep them neat, tidy and orderly.
But I am doing it — with the support of my wife, the few friends who know what’s going on and dear colleagues who know what it’s like and are there to help just with their smiles and nods of understanding. Work in and of it’s self is one of the finest therapies, providing focus and meaning during a time when these things are easy to lose.
As for my Dad, he comes from a sports background – first as a collegiate football player then as a longtime coach and athletic director – which has shaped his “team player” spirit. It’s harder and harder for him to talk to me on the phone. He doesn’t really know what the phone is at times, and will just stop talking or put the phone down completely.
Despite these challenges, my dad works hard to converse even though he can’t put more than one or two words together. Almost every call starts with a long wait as his facility gets a phone and takes it to him. When he does come on the phone, he asks in a very muffled almost ‘hot potato’ voice, “That you Jim? That you?”
I try to tell him a few things, like how Oregon State did in football and if Oregon lost, something our family historically celebrates almost as much as an Oregon State Beaver win. Mostly I don’t think it makes any sense to him, but he’ll just snort a little laugh, say “well,” and trail off.
When he tries to talk, he’ll maybe say something like “well…I went…they…well” and so on. But usually at least once in our calls, he will say something like “oh, pretty good, pretty good,“ his effort to stay positive and upbeat, in spite of what is probably an ever dimming view of the world around him.
One of my favorite events of recent was taking him for a little walk in the courtyard of his “memory care” facility. There is a small herb garden in the courtyard, and I took him over and had him smell a couple of the herbs. Taking some rosemary and rubbing it between my fingers, I put it up to his nose and said, “Sniff Dad. Smell it!”
He has a hard time managing a sniff – blowing first out of his mouth, and then snorting with a look of confusion. When he finally manages a sniff, he quickly straightens up and stands tall. His eyes open widely and with a look if wonderment he exclaims, “Hey!”
We do it again with the mint, and the same thing occurs. The smell of the herbs seem to cut through his deep fog and bring him back for just a second.
So onward we go. I’ll move through the process as gracefully as I can, trying to draw on the inspiration of my patients past and present, who have dealt so skillfully with family illness and death. I will try to stay open to the rush of memories and feelings that are part of this process, while keeping my hand on the door to emotional regulation. I’ll try to keep this door open with my patients when I can, but remember how close it a little, in order to stay healthy and ready to serve.
Jim Anderson, MPAS, PA-C, ATC, is chair of the American Academy of Physician Assistants Health Disparities Work Group, founder of Physician Assistants for Health Equity and faculty of the Department of Anesthesia and Pain Medicine at the University of Washington School of Medicine in Seattle.