Postcards from Equanimity # 008
"Dearly beloved, we’ve gathered here today to get through this thing called life." - Prince
Built into this life thing, there are detours and there are pauses. The detours may or may not be distractions, are just as often unintended as not. But the pauses are quite often instructive, a lesson bundled into a packet of time, presented to us as an offering to teach a lesson.
I was planning to write about clothing in this post, the next block in our Maslow's hierarchy grid after the last post's discussion of food. But my Mom was hospitalized last Thursday for acute decline complicating her late stage Parkinson’s disease. I was actually scheduled to go to San Francisco to attend a family wedding. Since I already had time off, I diverted my plans to Ohio and was able to spend time from Friday night thru Tuesday visiting with my Mom. She was diagnosed with unexplained encephalopathy, was stable after initially presenting with severe hypothermia, was occasionally responsive but showed some progress from my first day to the last during my brief visit. Heading home from that visit, I began writing this post.
For those three days in Ohio, a part of my brain was on pause. No matter how much I tried, I couldn’t focus on anything well. Given the situation, that was ok, and understandable. As I was sitting in a corner in my Mom's room, between her paroxysmal waking spells, the steady beats of an ICU room pacing my thoughts, l was starting to think that this was a pause, not a detour.
Beyond trying to engage my Mom to see if she would respond, suctioning mouth and nose secretions and adjusting her pillow and the towel rolled under shoulder to better position her neck, there were long moments of holding her hand, talking with her, telling her how much I love her, and that she is, of course, the best mom in the world. The pause was not stillness. It was a deliberate collecting of myself, stepping off the fast paced road of daily to-dos, to walk back and forth from memories of my past to the hopes for my future.
My mind was looking to create sense and meaning of that moment, and my brain was the switchboard operator offering to connect so many wires of thoughts traversing the length of time. My Mom was comfortable; she needed a thermal blanket to help regulate her body temperature for most of my visit although there were a few hours after the lumbar puncture when she managed without it. I devoted time to reviewing all her imaging and lab tests; all were normal with regard to the acute situation, and I felt frustrated that I didn't have an answer. I thought of all the past events and imagery at my disposal to replay in my mind, in short or in toto. I tried to tell my mom a joke or two to see if she would chuckle as she usually does.
By the time I was leaving, my elder sister was in town (my middle sister lives in town). We were exchanging information and making plans of care. I was feeling guilty for leaving but had to go back to Florida to attend to my job, and all the other humans who depend on my showing up at certain places. After working a few days, and getting news of stability, I returned this weekend to spend more time with my Mom, and be here with my sisters and my Dad.
To put salt on wounds, OhioHealth hospitals only lets one person go in at a time under Covid rules (two person policy at my hospital), and the front staff was being difficult about changing the designated people with or without proof of vaccination and screening.
My mom has managed to protect her airway, no intubation, temperature has normalized, is slightly more responsive, and is minimally recovered with the tube feeds. I had a long chat with the hospitalist taking care of her this weekend, to layout a plan toward being able to bring her home. He agreed with my suggestions.
My closest friend is a palliative care physician. He listened to me and counseled me on my choices, which I am conveying to my non-physicians family members. There are many misconceptions around the word 'hospice' and different people need different amount of time to come to terms with the illness of a loved one, especially when there is a sudden downturn.
I guess I have been going through stages of grief too. In my mind there has been the prolonged experience of letting go of my Mom, watching her decline over the years. But she surprised me by recovering so well from Covid last summer that once again, perhaps as I did when I was a child, I felt that my Mom will be around forever.
Now as I am exploring the nuances of home care vs hospice care, my mind jumps ahead to next fall, perhaps without my Mom around. Human beings are strange in how we process information that isn't "live" in front of us. I am jumping ahead to that future life without her but also jumping back to all the years gone by, looking at photos of my Mom and I, when I was a baby, a teenager, and through adulthood.
Sitting here late at night, I am holding on to this pause, where there will be a lesson. If not now, then later. At least it feels like a pause. My Mom going through Covid last year felt more like a detour, where she came out slightly worse off but still with us but I didn't learn any particular lesson. Now I am at risk of losing her in the near future. Once you lose a parent, you become a very different person. I know I am not ready and also that I am.
"You, me, or nobody, is going to hit as hard as life. But it ain't about how hard you hit. It's about how hard you can get hit and keep moving forward." - Rocky Balboa, 2006
I know I have what it takes to keep moving. I appreciate being able to share this processing of my feelings, and hope to also someday share the lesson. Some lessons from prior pauses when it comes to caring for my parents have been:
You must have a hobby, something you look forward to other than work. If you don't, and you stop working, you brain will die a slow, agonizing death.
You must have a conversation with loved ones about how you want to be cared for when extremely sick.
We must cherish all the moments with our loved ones, even the ones where we didn't see eye to eye. We must learn to love hard, be easy to forgive, and truly let bygones be.
Grief can take our strength away but mourning can restore it. I am mourning the loss of vitality and awareness for my Mom. She is still with me, and will still have moments of lucidity, for which I will forever be grateful.
As a physician who sees cancer patients, I have seen my share of death and explored people's thoughts on dying. We must do a better job of discussing our expectations around end of life care. We must communicate well, and clarify how we want to die. We must balance the needs of those who live and need to come to terms with letting go and the one who is ill and must be able to live their final days with dignity and quality of life intact. We must do so in order to attend to the more desirable task that comes before dying, living an intentional life.
This holiday season, above all, I will wish peace and clarity to all.