A Daughter’s Reflection on End-of-Life Care
Chapter One
Many professional women write about the unconscious bias around the motherhood penalty and their related self-censorship when writing on professional forums, when making presentations or how they ‘show up’ in their professional workday. Over the past few months, I admit that I have been self-censoring, withdrawing even, from maintaining virtual connections, social media engagement and writing. Why? Not due to my responsibilities as a parent, but the escalating demands as a caregiving daughter. Very little felt genuine when compared to the reality of caring for my mother who was approaching end-of-life.
There is no work-life balance when you start your day providing a parent with medication that provides her brain functionality. That segues to constant monitoring in search of a sweet spot, an ‘on window’ between meds when she can swallow and consume life sustaining calories. The summer of 2021 was dedicated to caring for my mother, her cognitive and physical decline accelerated having pulled through a case of severe sepsis.
As I write, I am at the beginning of my grief journey. And as a friend wrote to me recently, it is a new kind of hurt, and one that is never going to disappear. It is something that I will learn to live with.
So why share elements of the caregiver journey with my professional network when I have barely accepted that my mother has passed, and only 18 days shy of her 80th birthday? Because I know my experiences and insights could influence future decisions for your loved ones, and that the completeness of life deserves space at this time while the pain is felt deeply and is raw at every edge. And dare I say, there may be a nugget of inspiration for human-centered healthcare innovation.
I do not yet have a clear plan for how much I will share, the brain fog is still circling. Writing helps with the healing process. I assume there will be a couple of installments. This is chapter one.
Two Decades Ago
On Thanksgiving weekend 2001, I was sitting in my rental car with my mother after spending a morning at the Ontario Science Centre with her, Dad, my niece and nephew. She had something she wanted to share privately before I headed to the airport to return to my home in Vancouver. In my rear-view mirror, I recall watching Dad manage the heightened energy of my niece in the truck parked right behind us. Mom said, “I have Parkinson’s”. And then she said, “I don’t want anyone else, including your Dad to know, just yet.”
Mom’s symptoms at the time included early incidents of ‘freezing’, a perilous and frustrating inability to move your legs on demand. The mind-body connection stalled.
And so began a 20-year journey together in care management, medication mastery, healthcare advocacy and keeping secrets.
Naturally, the time eventually arrived when symptom progression and care needs demanded we bring more family members ‘in the know’, including Dad.
Trips to the Neurologist & Medication Management
Our first trips together as a family to her neurologist also aligned with Dad’s retirement. A blessing for Mom. A devastating reality for Dad, retiring from his lifelong career as a fertilizer salesman to shift to his new role as Mom’s primary caregiver.
Note that I mention — family trips to the neurologist. From the beginning, I timed return trips from BC back to Ontario to align with Mom’s appointments. That decision was key in building a relationship with her neurologist that gradually evolved to his trust in me. No, I am not a trained medical professional, however, with a background in science and a day job immersed in research and assessing the latest healthcare innovation, I had confidence in my ability to advocate for Mom. In partnership with her neurologist, we fine-tuned Mom’s medication protocol, balancing benefit and side effects at every step along the way.
It was also essential that Dad attend these appointments. He didn’t want to. He wanted to leave it up to me. But I wasn’t her full-time caregiver. He was. When it comes to supporting someone with a chronic, progressive condition, knowledge it critical. I needed him to experience the questions asked, the physical tests given, the observations made. It was essential to enrolling him as a monitor of Mom’s subtle symptom changes. And importantly, to fuel his understanding versus denial. Parkinson’s is a neurological disease that over time, presents symptoms that are much more devastating than loss of motor function and limb control.
Prior to every appointment, I would ask both Mom and Dad — what do you want to accomplish today? What is the most important share, experience, frustration, symptom change that you want your doctor to know about? What is your greatest concern? It was a ritual that prompted my quiet, never complains about anything Mom, to disclose things that helped us tweak medication protocol no less than a dozen times over the years. We would write down the answers and show up to every appointment with a list. We added, subtracted, increased dosage, decreased, changed the timing and regularly fine-tuned and adjusted combinations to optimize her ‘on windows’ throughout the day.
Dad developed new observation skills that included the ability to differentiate between ‘snoozing’ and ‘not present’. That was our family language. Dad and I also built simple vocabulary to describe movement changes that he could share with me over the phone — was she slow waltzing more today Dad or jitter-bugging?
Naturally, symptoms become worse when Parkinson’s meds wear off between pills, improve again after PD medicines have time to kick in. The magic is in finding the balance so as not to trigger new side effects with too high a dosing schedule as happened at one point. We were trying to manage the shortening of her ‘on windows’ that was a consequence of disease progression. The result was that Mom’s motor symptoms, her dyskinesia, became wild and Dad had to spend hours holding her in bed to keep her safe until we got the dosing under control again.
Dad experienced, more than anyone, the beauty that aligned with Mom’s ‘on windows’. She brightened, she became a chatty Cathy and typically wanted to dig into reminiscing by sorting through her hundreds and hundreds of old photographs.
The First Difficult Conversation with Mom and Dad
Have the difficult conversations early in the care journey. For example, as it relates to medication management. This is where my experience and expertise with due diligence as a healthcare investor was of significant benefit. I could interpret research, assess risks and identify the options we wanted to present to mom’s neurologist. More on advocacy later.
When mom was still mom, clear thinking and practical, we talked about the probability of accelerating the onset of dementia as we tweaked medications to maintain fluid motor function. I asked the question, what is most important to you? Do we adjust meds to promote physical independence, or limit changes and avoid the risk of accelerating dementia? Sufficient research pointed to the link between dosing and onset of dementia.
Both Mom and Dad always answered — independence.
The Penultimate Difficult Conversation with Dad
The notes that follow in this Penultimate Difficult Conversation section are taken from my journaling June 2021. Advanced care planning is uncomfortable. We need to figure out how to introduce the difficult conversations with our parents as seamlessly as we execute on wills and estate planning.
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I am writing this while I am still in the joyful position of being able to hug my Mom. Often reflections are written once parents have passed. I am writing having recently experienced the longest flight of my life, not knowing if she would pull through a profound case of sepsis and kidney failure. She was already frail. I did not believe she had the physical resilience to recover.
After a weekend in ICU, she pulled through.
I find myself wanting to share some of the realities I have witnessed and experienced over the past month while still raw, perplexed, relieved, frustrated, dazed, grateful.
My mother’s name is Katherine Adelle Irwin. She was diagnosed with Parkinson’s Disease at the age of 60, 20 years ago. Reflecting on the phases of her decline is not the objective of this narrative. What I believe will be helpful for others who have the quarterbacking child role in the family is a few notes on advocacy.
Starting with the DNR (a ‘Do Not Resuscitate’ order). In the first 24 hours of Mom’s admission to the ICU, I was challenged by two doctors and one medical student about the decision not to implement a DNR. In front of them was a fragile and very ill woman. Their logic was sound. The likelihood was very high that she would be in worse physical condition following efforts to resuscitate if indeed that situation arose. My response ‘there is no DNR at this time’ assuring each medical practitioner that I understood the risks and that my response was fully informed and not an emotional response. Yet, I felt sick to my stomach at the thought of what she might endure if indeed there was a time when she required physical resuscitation.
I had my mother’s Medical POA. I told the attending physician, ‘I will not make that decision without a conversation with my father when he is NOT in the middle of also experiencing her current crisis. He is currently in complete shock and so very sad and broken.’ In retrospect, I wish that I had the conversation with Dad years prior.
Mom had a three-week stint in hospital. The universe was on our side in that the very day Mom was transferred out of ICU to the ward, it was the first day in sixteen months that visitors were allowed in hospital. I spent thirteen of the next seventeen days stretching the limits of what was allowed for visiting (siblings with less work flexibility took a couple of weekend shifts). The primary purpose of my daily vigil was (1) to ensure my mother was fed during her few ‘on windows’ driven by her medication cycles, and (2) to make sure Mom was not alone. I wanted her to know that family was always going to be there when she opened her eyes and ‘wanted up’, her go to demand to be liberated from bed and sit in her wheelchair.
On June 18th, one week after she recovered from the infection, Dad had his first hospital visit with his wife of 59 years. Mom was barely responsive. Time for the difficult conversation. It was after that visit he agreed that implementing a DNR was the right choice. She had become so frail. It was the right thing to do.
The Promise, Possibilities & PCOT
Mom’s hospital physician advised against bringing her home. Sepsis aggressively accelerated her decline. And her ability to swallow her pills, now on a two-hour cycle, was hit and miss. There can be no miss with Parkinson’s medication.
Many years prior my mother made my Dad promise to do whatever was necessary to support her passing away at home. No matter what. He promised. There would be no plan to put her into long term care. And so, I faced the responsibility of supporting his promise.
When she was in the ICU, she had a nasogastric (NG) tube inserted. During a video chat with Mom, I asked the ICU doctor, is it common for patients to be discharged with them to have at home? The answer was ‘no not common, but possible’.
I knew we had to find new options to ensure that Dad could get her medication administered, every two hours, regardless of her state of wakefulness or ability to swallow.
I saw the path to bringing Mom home. She was discharged from hospital June 30th, 2021.
Once home, I then pursued the process for Mom to qualify for the Palliative Care Outreach Team (PCOT). Again, nobody at the hospital suggested this, I simply had sufficient insight into the provincial systems and resources to know this was an option.
Without question, my mother’s medical status and related care needs qualified for PCOT. Yet, once again I was faced with an uncomfortable conversation with a doctor, this time with her family doctor. His preference was to care for her on a palliative floor at his hospital (different community hospital than the one she was just discharged from). I insisted we could put systems in place to support her at home. He considered it overnight, called me the following morning and agreed to support the PCOT requisite recommendation. Once approved, the most essential feature of this program was that Mom was provided with daily nursing. What beautiful calm, comfort and relief that provided my father.
The NG Tube & Another ER Doc
Without question, our ability to care for Mom at home during her final three months was because she was discharged from hospital with an NG tube.
We asked for it. Mom hated it. It was irritating. As such, three different times, through the night, she found a way to pull it out even having lost the use of her hands. It required an ER visit to have a new one put in and to ensure proper placement with an x-ray.
In September 2021 when I was with her on one of these ER visits, we were waiting for five hours. That is a very long time for Mom; sufficient time for her to progress through major swings in state between medication cycles. Fortunately, I brought the tools to administer her meds on time orally. At one point, the attending ER physician took one look at Mom (his first look) and asked me ‘why are you still medicating her? Why aren’t you just providing comfort care?’ Translation, sedation and pain medication until she passes. He was witnessing Mom in her ‘off state’ between meds. She appeared comatose. Twenty minutes later, I had him come back to her room so he could see my mother singing along with Ann Murray to ‘How Great Thou Art’ — belting it out even. The ER doctor was stunned. And I said, ‘that is why’.
You know your family best. Healthcare providers observe patient life in segments and assess based on limited windows of observation, absent of complete history and associated circumstances. Never hesitate to FILL IN THE BLANKS FOR THEM. Even the most detailed EMR (if available) does not convey the nuances.
October 2021
Back to documentation and communication.
I made sure Dad, my two brothers and sister all knew where the DNR documentation was located in the home. Practically speaking, not only does it matter whether a DNR decision is in place, first responders and healthcare attendants need to know where the actual documentation can be found. Otherwise, they have a duty of care to activate their life saving skills even if the consequence may be causing other physical damage, due to brittle bones, in the process. Those are the facts.
Another form that I completed months in advance was an “Expected Death in the Home Protocol” (aka EDITH). That one triggered a myriad of emotions. On the one hand it was a brutal gut punch to execute; on the other, a wave of calm washed over me knowing we were setting up the environment that Mom craved for her passing. There would be no 911 call. None of the village volunteer firemen, including my brother racing from his day job to attend to a medical call — firing up the emergency vehicles we see on any given day out the back window from my parents’ home. Rather, the call made was to a funeral home.
EDITH is completed when an individual is being cared for by a palliative healthcare team in the home. It was also important to share the details of this document, as well as the implications, to every member of my immediate family.
Thanksgiving Monday 2021
Perhaps this will be the only chapter I write.
My goal is to inspire advocacy. And, to share something that I have kept private for years — just how very difficult it has been to care for a parent with a progressive, debilitating and demanding disease. Reflecting on the journey at this time, I know that being present was the greatest gift that I have given my parents, no matter the demands of my intense, unpredictable, yet exhilarating career choice. And it wasn’t just for my Mom’s care, it was also to support my father who was experiencing his own devastating reality of social isolation as a full-time caregiver witnessing his spouse slipping away.
I am inspired daily by my career choice. Energized at the possibility of making lives more comfortable and healthier, while also empowering individuals in their personal health journey.
I am a health technology investor. The latest healthcare innovations had little to do with managing the challenges in my mother’s final months and days. However, over the years, I have witnessed a multitude of possibilities where the nuances of disease progression need so much more attention. Perhaps thoughts on that topic will be the basis of a future chapter.
A couple weeks following the September ER visit to replace her NG tube, Mom passed. It was Thanksgiving Monday morning. She passed away peacefully at home. Dad witnessed his wife’s final breath. And the nurse who was present shifted from assessing vitals to comforting my father.
Dad courageously delivered on his promise. What a precious gift.
As I navigate the stages of grief, I am also beginning to resurface. It is a parallel process.
Brenda Adelle Irwin
About the Author
Brenda A. Irwin is a healthcare venture capitalist. She is the Founder and General Partner of the Relentless Venture Fund . Relentless has an unwavering commitment to identify disruptive technology, products and services that optimize access to healthcare and facilitate a robust continuum of care. Follow Brenda on twitter @irwin_brenda, or LinkedIn. For fund updates and industry notes, subscribe to the Relentless Roundup.