A Sweater to Remember
Staring at the table in front of me, surrounded by colleagues, I took a deep breath in and released, readying myself for becoming vulnerable as I prepared to share my story. I knew from the pain in my throat and the muscles pulling in my face I would probably cry, not just a few tears but a really ugly cry. This terrified me, but I so desperately needed to share what I’d just been through in a safe place. This was a crossroads I was reaching in my life. This was an experience I felt deep in my soul - gut-wrenching from loss and shocking to my inner acceptance of my own mortality. I began my story….
I started out describing the precipitous event that cascaded into the final days of my uncle’s life. An aide was assisting him on the commode, and he fell forward, losing his capacity to hold himself up. It was the last time he would be up and around, the last time he would feel what it was like to have any sense of autonomy. This was the beginning of a new phase, one that we all knew would come for him and eventually for us someday. But, you’re never ready for it when reality takes up the future’s space. The air felt thin as I contemplated what would come next, taking up the space in my chest, pushing my shoulders up and my jaw clenched as I wanted to be a rock my family could rely on. Pushing back tears to stay strong, to do what was right, to listen as my aunt processed her own fears and uncertainty. I remember her telling me that he could be in bed for months, describing this with both exhaustion and hope. Deep down, I knew we didn’t have months anymore and I was angry. Angry at the doctors who poisoned him with chemotherapies that seemed to make him worse instead of better. I couldn’t shake the feeling that there was some better preparation our health system could facilitate than to feel like this impending death was a shock.
After days of mastering how to turn my uncle using sheets, feeding him and reminiscing about wine and cheese, and getting to know the wonderful aides that supported him and my aunt, I was beginning to hope that maybe we really did have more time but deep down, I knew. Then, things changed again. He was no longer interested in food. His feet were cold and dark. He began sleeping most of the time. That was when a hospice nurse gave me “the look” after taking a quick peek at my uncle’s feet. As I met her head in with that look, with no words necessary, she let me know that it’s time. As I pursed my lips and gave a slight nod, I knew it was my moment to be strong. She called me and my aunt into the living room to “talk.” Showing her depth of skill tapping into empathetic communication, she carefully chose her words to describe to us that he was close. We needed to hear these words of honesty, to know what was happening and I could see on her face, it was serious. Her verbal and non-verbal communication gave me the truth – something I felt had been missing for years as my uncle struggled through heart disease and then cancer. It was a moment of relief.
Over those next 2 days before his death, there was a flurry of phone calls to share the news so that family could gather to say good-bye. This was another source of anger for me. I kept thinking to myself, “Why are we doing this now? Why are we doing this when he’s lost most of his communication abilities?” To this day, it baffles me that we wait to say good-bye or the things we always wanted to say but de-prioritized because we always assume there is more time. Again, I reflect on my anger towards false hope relayed so often by our exalted medical providers. “Giving” this extension of time as if it was a gift to live longer rather than relish in opportunities to share during conscious clarity. Hospice is trained to have these difficult conversations, to prepare us for this inevitable transition and I am forever grateful for this true gift she gave me on that hard day.
On the day before and eve of his passing, I devoted myself to being by his side as much as I physically could. We decided, as a family, he could not be alone when he died. His breathing intensified in a laborious way, reminding me of the incredible pain and beauty of childbirth. In labor, we are trained to count between contractions so that we have a better sense of how soon the baby will come. I counted between his breaths in the same way, realizing that as the pauses became longer, we were getting closer. That night I counted along with his breaths, in part to stay awake and also to manage my emotions. I stopped occasionally to read Dylan Thomas poetry, which he was quite enamored with in the last six months of his life. I read, “Rage, rage against the dying of the light” and then would begin to count again. I was alone with him in this cadence, the night silent except for us dancing through this transition together. And, the morning light came and he continued to breathe in between pauses extending with time. As the sun came up and family gathered again, the house became noisy again and I realized our special time the night before was a gift I would have forever. It was just us and I was his labor support person on his journey.
I learned that my uncle passed around lunch time that day via text from my sister. I wasn’t there. I’d taken a break to eat and take a shower. I wanted to be there with him through the end and was immediately mad at myself for leaving to care for me. I was devastated and needed closure. As I arrived at the door, I noticed the pastor and asked him to pray with me alone with my uncle. To this day, I do not know why that was so important to me. I am not a religious person but I needed that spiritual connection my uncle related to. I needed him to know that I revered his spirituality, especially passing into wherever the next place would be.
I stayed with my uncle that day, helping my aunt wash his body and put his beautiful silk pajamas on. I kissed his head and told him I loved him, wondering if maybe he heard me somewhere, somehow. For weeks, I would see cardinals and wondered if they were my uncle trying to tell me that God was real and he’s happy. I heard from a close friend that was there when he passed, that a cardinal was outside the window in the tree when he died. I sought comfort in whatever way I could just to get through the immediate days and weeks after the loss. For every cardinal I see, I think of my uncle and am reminded of his confidence, courage, kindness, and love.
So, there I was sharing this story with a group of colleagues, patients with serious illness, caregivers and bereaved caregivers. I’d been working with that team for months providing insights around how to improve communication between health care providers and patients/caregivers with serious illness. This team allowed me to share my darkest moments of anger, pain, and sadness as I watched and experienced communication failures that neglected to take into account quality of life and caregiver exhaustion. With the passing of my uncle, I was more motivated to do something and dedicated myself to the important and grueling work of changing culture.
I’ve had many professional titles throughout my career and at the very heart of what I do, I am an advocate for change. This group allowed me to be honest without political consequences and to think out loud, sharing ideas for the sake of innovation. On days we’d meet, I would wear one of my uncle's “old man” sweaters to feel his warmth and acknowledge this as a symbol of a story to be told that may touch someone else. I express my deepest gratitude to those who used their power and expertise to value and pull together this team, to those we’ve lost along the way for their bravery and gifts of insights, and to those who are caregiving or bereaved caregivers and family members – I feel your pain and thank you for understanding mine.
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Thank you for sharing so deeply of yourself and your uncle. I will live in your story and honor your beautiful love when I see cardinals and old man sweaters.
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2 ReactionsOh, what an amazing, sad, yet uplifting story. I think that your uncle and aunt were so fortunate to have you travel this path with them. Cardinals and old man sweaters, I will live in the love of your story...I couldn't have said it better than Marv.
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1 Reaction"But, you’re never ready for it when reality takes up the future’s space." Thank you for sharing your story.
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1 ReactionThank you so so much for sharing your story. Your words brought me back to the last days of Deb's life and the incredibly compassionate and helpful conversations we had with our Bayada Hospice nurses. I know that sharing here, in your own way, will help others as they work and often struggle to navigate their serious illness journey as a patient or a care partner. Thank you!
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1 ReactionThank you so much Stephanie for sharing your story about your Uncle .
When I first read this story this morning I was so overcome with emotion I couldn’t write a response. Now I’ve gathered my wits (so to speak ) and need to acknowledge how deeply moving your story is.
Thank you for being willing to expose such deep heartfelt experiences. Your story will touch so many as it touched me.
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2 Reactions@stephnh just wanted to make sure you saw these comments. Thank you again for your sharing. I hope you are still finding comfort and "warmth" in wearing your uncle's sweater. Today it is especially freezing here in Grantham and for some reason this is the first thing that popped into my mind when logging onto the community.