Time as a bug
Time is a bug in life. Not enough. Too much. Moments that won’t end and days that are too short. Races where 0.01 seconds made the difference. How to manage it, honor it, rest in it, appreciate it, make it. A lifetime is forever until all of a sudden that known end is visible. Living is what our species does with time, that active being on the clock. Honoring that gift of life, holding space in time.
I certainly have struggled with what to do with it these past six months with my time. In every aspect of my life. Family goals (boys home!), work goals (staff leaving, hospitals barren, tears everywhere), community goals (time for friends), team goals (can we just have stable pool time for swimming), organizational goals.. As the pandemic winds down and life transitions into normal, it is different. We are different. What we want to do with our time has changed. Transitioning to a new normal is not easy. Especially when my work space is still a race. We are 2 years into a marathon and our lack of training for this shows.
In the midst of my metaphorical time crunch— I had to pause and sit with my great aunt in her last hours of time, of life, of being.
Her family situation was complex, thus my presence. Years ago after a fall I found that she had named me her medical POA. I had offered to help and I hadn’t realized she took me up on it. When I discovered that she had, I sat down with her and asked those hard questions.
“What do you want me to do? How do I help your body and soul when it is needed?” Her plan, the plan of many humans, was to wake up dead one morning. No fuss, no drama and no decisions needed. But of course this isn’t how it works most of the time.
As what happens often to those who make it to their late 80s and 90s– with good genes and good self care practices, both luck and work— the body keeps going. For so many, death becomes a failure to thrive over time.
The body gets frail, balance is more difficult, food is less appealing, sleep and nap lengthen. That fall that is so predictive of mortality is NOT the complex medical event that the body cannot bounce back from but rather it is that GPS label/tag to show the world where things are. But so often it is preceded by increased frailty, memory changes, the body’s inability to absorb the nutrition from food.
The rest of us forget that a 93 year old person has a colon that is 93 years old, a heart also 93, lungs that have been breathing for 93 years. Patients' families and loved ones are always quick to point out about their elderly loved one– that they are a “good 90”. But those who were not good, didn’t make it to 90; the age of the organs matters. History has a role in time.
This was her narrative. A brain that began to lose its GPS, confusing her own story and narrative while her “healthy for 95” organs continued to do their best. So time passed and each day was a slight step closer to her end.
When the body is so frail that someone’s fall risk is so high— hospitals and nursing homes spend huge amounts of time planning and staffing 24/7 “fall spotters” and technologies. Families and administrators yell about a lack of safety parameters. But when an adult simply cannot support themselves and must be watched for 24 hours a day to prevent the fall (which isn’t hastening death but sharing time’s location) the real discussion should be about next steps. And not get lost in blaming who is responsible for the patient’s inability to stay upright.
So often the only way to stabilize a hip is to place an intramedullary nail/rod in the femur– to stabilize the femoral neck. Without this stability a patient cannot weight bear, or pivot. It often becomes a palliative intervention to pain management and movement. I discussed this with many trusted colleagues and friends before making the decision to send her to the OR this past summer. And after her repair– body functions that stop working as time winds out continued. The 95 year old heart that was healthy at rest, was asked to now run a cardiac marathon. Surgery, fluids, anesthesia. With these tiny new variables– her heart went into funny little rhythms. Afib. Ectopic beats. Transfer to monitored units. Cardiac meds. medication fine tuning. All the while– little appetite. Despite GOOD egg salad. Ice cream temptations. Enough to get by but not enough to heal. Skin requires nutrition and protein. Increasing the calorie count in a 95 year old- forcing more food into the mix doesn’t always improve a thing aside from messing up a good bowel regimen and making the patient stressed about meal time and feel full (no one likes this). A feeding tube doesn’t help these situations (and she didn’t want one. Ever). The statistics are absolutely clear on the feeding tube issues.
Yet I have a gazillion elderly patients with them. Pulling at them with dementia or fits of confusion. Having diarrhea. Continuing to be at high risk for aspiration and pneumonia. The time for these discussions– the words to teach a family member who simply loves the patient, to build that trust that allows them to honor your expertise for what it is. It takes much less time to simply place a consent and consult the team to do the procedure.
So surgery to stabilize the hip led to more weeks in a hospital (never good for the elderly), my role was simply to prevent interventions that she didn’t want and try to support her healing, her chance to walk again. Minimize her pain without increasing her confusion. (Not easy in our 90s)
My job was to build the boundaries of what we wouldn’t do while dealing with complex family dynamics and trying to educate family members who trusted no one. Honoring her wishes.
In the end– the failure to thrive contributed to what I suspect became an acutely septic picture.
Her wound wouldn’t really heal because her albumin/protein levels were so low. And one evening she turned, blood pressure dropped, heart rate climbed, a bit of a fever (which was impressive because these older bodies don’t always mount fevers!). Hospice goals changed. They had been on board and supporting her life, now they were called to support her death.
And as her body shut down-- I sat quietly next to her. Knowing that she was at her time’s end but not knowing how long this last road was. Not knowing if she was one of those who would wait for peace and quiet to die, to die alone, or would be a hand holder. Listening to Opera. Classic music. My singing (not the same as an aria). Lights on. Lights off. Times that I couldn’t believe she was still breathing because the movement in her chest had stopped and it appeared that simply a lateral twitch of her jaw was life’s only sign.
Hoping that she would not make it through the night. Feeling guilty about that. Then convinced that she would make it to daylight until we hit those witching septic hours between 4-6 in the morning. I recall a study that I once read suggesting that these early pre-dawn hours when our BP is at its natural lowest– is the most common time of death for septic patients. And that was what happened. Quickly. With comfort. Skin changes, breathing changes, extremity coolness. Loss of blood pressure.
And her time was then gone.
And with it- mine opens a bit. A horrible thing to type. But her care over the past few years had taken up quite a bit of mine. Giving her my time was my choice. I honored her with my time. And now I have to work on honoring others. Time is this complex bug. And I continue to work on honoring its gift. And I fail miserably. And that’s ok.
