Long days, short years
I talked with the patient’s sons to understand our common goals…
My name is Julia. I’m a medical social worker with Penn Home Palliative Care. My job on the team is to help the patient tell their story in terms of what matters to them most now at this stage of their lives. I view symptom management as a basic human right that we should all have access to regardless of where we come from.
When people hear what I do for a living, and remark on how difficult my job must be, I tell them that it restores my faith in humanity on an almost daily basis.
Last week I visited an 85 year old woman suffering from both Parkinson's Disease and Dementia, who was being exquisitely cared for by an inspiring pair of devoted, exhausted tag teaming sons. One son lived with her full time, and the other son was working third shift job and then coming back to give his brother brief respite.
During our time together she was lethargic and soft spoken, but beautifully quaffed and kind to a fault. She was reclined in her favorite bedroom chair next to an open window, snuggled beneath a set of handmade blankets and wearing a mask her sons had considerably placed on her lovely face.
It was clear that this woman's decline had accelerated in the past few weeks, difficulty swallowing and walking, weight loss, less lucid and more lethargic. A hospitalization to address a urinary tract infection. And so gingerly I talked with the patient’s sons to understand our common goals while she rested serenely by our side.
As our visit closed and I said farewell, she opened her eyes with effort and said quietly. “It's starting to get chilly out there. Are you sure you don't want a sweater?” She took my breath away with her kindness delivered even through the foggy end-stage of two cognitively debilitating diseases.
Even though she had dementia, she was talking repeatedly about going home. And she was in her home where she had raised her own children, but to me it seemed like she was talking about her spiritual home and she was asking her loved ones how to catch the train or a plane to get there. That symbolic language goes back to the essence of what people care about, and really shines through during serious illness.
In palliative care and hospice, we talk a lot about how there are so many similarities between the beginning and end of life. The sons described to me that the patient was having sundowning episodes during the afternoon and evening. The patient gets their days and nights confused, and that's what happens a lot of the time for people who are starting to die.
One of the things that I've learned from my patients is that the days are long and the years are short. In the midst of a pandemic, it can feel ‘How are we going to get out of this? I just want this to be over.’ And then I know, from experience, this time is just going to go by in a flash. The memories that are going to last for me are those connections I've made.
It's really a blessing to be able to do this work. We're going through a really hard time right now. But then I walk into a patient's home, and they could be going through the worst of illnesses and there can be so much love and compassion between the patient and her family, the patient and me.
It's therapeutic and soothing for me to tell the stories. I think a lot of people are afraid of stories of suffering, they're afraid it's going to wash on to them or make them sad. Or they they're thinking that my job must be so depressing and they don't want any of that in their lives. But storytelling and listening is part of what makes us human.