RaeAnn Hartman

Disclaimer to all my friends reading right now believing this title has something to do with a romantic life I’ve kept from you this summer. Not. No clandestine, torrid affair consuming all my time. It was family love.

Every senior is one fall away from disaster. Or perhaps it’s all of us. At age 88, my dear old dad still had his car and enjoyed his days, his friends, and family despite the ongoing shrink wrap of life, naturally happening as one ages and life slowly gets smaller.

At age 85, my dad’s mobility capacity noticeably shifted. He went from walking five km every day to shorter walks because of arthritis in his knees. At age 86, he rarely travelled too far or for any distance without one of us, his children, as his wranglers. We whisked him away for a family reunion in Tofino, and he had the time of his life surrounded by his children, grandchildren, and every grand dog. At age 87, his love of reading diminished, probably for subtle cognitive reasons, and managing his online banking was harder for him. His snail mail, email, and coffee visits with friends and acquaintances evaporated. So many he knew were dying or changed, and incapable. I’m struck by how much grief this generation, and all of us, will experience with the passing of time as friends are lost. At age 88, shopping was harder and he found giving cheques or cash for birthdays and Christmases easiest. He put up fewer and fewer seasonal decorations and passed on most of them to all of us. Sure, he was shuffling more and using a cane and now a walker more often to pad about his independent living building, promising only to drive between his house and mine. When asked about giving up his driver’s license however, he still replied, “Close, but not yet.”  So, he and I kept a weekly coffee date whereby he drove and I made sure he still had the reflexes, neck mobility, and shoulder mobility, making him drive and me the tester. Then, he had his first fall.

We had just gone to get his spring CoVID immunization and were walking from the pharmacy to get coffee and gelato. I had made the appointment mid-afternoon for this reason. We were transitioning up a ramp whereby the parking lot meets the sidewalk, and with all his practice shuffling, his foot just didn’t make it high enough past a piece of curb and down he went on his left side. He needed to have lifted his foot about another half an inch. He immediately knew something was wrong with his left arm.

Fast forward to his doctor, x-rays, and how to manage moving the strained arm. It wasn’t broken, but his arm became limiting, as he could not lift it on its own. He needed to use his right arm to lift his left arm to grab anything. What did this mean? Getting stuck on the toilet…we installed a raised seat. Getting stuck in bed…we installed a bed rail assist between his frame and mattress. Getting stuck in his Lazy Boy…we inserted a high memory foam pad. Fearing he would have more difficulty with showers and other activities of daily living, my brothers and I paid more attention and were on standby to help if needed. Driving was over, which he knew, but also thought as temporary until his arm healed and his mobility improved.

During this time there seemed to be an inversely proportionate relationship of these minute, subtle changes happening alongside larger, cognitive shifts. We had to write more things down. We visited every day to ensure his well-being. We noticed small changes with him remembering. As a nurse, I often checked in, performing a Mini Mental Exam with him, and he still passed. Then difficulty with a clock face, and perseveration with time, was noticeable. We started phoning morning and night to check in. Some days were still great, others not so much. And one Saturday morning, he didn’t answer his phone.

Sometime, between getting ready for bed in his bathroom and going to bed for the night he fell, somewhere in the in-between. He was closest to his bedroom door when I arrived, but stuck on the floor, Lifeline sitting next to his bed and the phone too far away. Immediately, I deduced he’d been there for some time and in that deduction also discovered he was making no sense about anything except his name.

The first responders came, firefighters first and then the paramedics, assessing him quickly and efficiently and me, as historian. They were fantastic, and that is one feature of telling this story. Every single health care provider we encountered and whom cared for dad was outstanding. And that is not the story we are currently hearing enough. Following him to the ER, I continued as historian, as my dad was clearly suffering from a severe delirium. Fortunately, he remained fairly settled versus being agitated, but was unable to follow directions and orient to time and place. We stayed close for two nights until he was admitted to the medical unit, not knowing when the delirium would clear. Within a week, he had an indwelling catheter and because he couldn’t follow directions well or clearly, it was unsafe for him to mobilize and we understood that slippery slope all too well. Delirium to immobility to changing care needs. The shrink wrap on his life was squeezing him tight.

My dad remained in hospital for six weeks. The upside to the daily visits my brother and I maintained were how well he was cared for, and the number of nurses I encountered that I had taught during my career as a nurse educator. It was a clear, real time outcome to having the full baccalaureate degree nursing program at our local college, keeping the graduates in our community. We always joked at the college that “you couldn’t swing a broom without encountering a graduate.” I was experiencing it every day. Out of all the nurses that cared for my dad during his six-week stay, I knew and had taught all but three of them. Seeing so many graduates was a testament to the initiative taken back in the early 2000’s when the commitment to the full degree program became reality. Many grads I only saw in passing as they held regional, leadership positions. Many grads were encountered in hallways, elevators, or the parking lot. And it was a gift to catch up with their professional and personal lives. However, the tremendous gift was experiencing and seeing the caring, professionalism, advocacy, leadership, and trust for everyone’s nursing care, including my dad’s. This included all the RNs, LPNs, HCAs, rehabilitation team, physicians, food service and cleaning staff – it was as it should be and not what I expected, if one listens to the news. Sure, are there staffing issues at times? Is one person working in the place of two? Is the food cart a little late because someone was sick that morning? Yes. The difference was no one ever made that my dad’s problem. They remained professional, adapted (as unfair as it could be), triaged, were grateful if we as family could help, and continued to care, embrace the chaos, and make it work, whatever the situation or circumstance or dangerously precarious workload. It was outstanding, phenomenal care. Not the gloomy, broken health narrative the public gets exposed to. And that’s also a good story.

As my dad’s care progressed and he stabilized medically, his new cognitive and mobility baseline emerged and independent living was no longer an option. The decision making that began with both my dad’s changing level of care and an eventual, looming discharge to a transitional care unit required a lot of information. It saddened me to know there were others in a similar situation without family, advocacy, support, or resources. Private pay, subsidized waitlists, remaining in hospital, red zones, risk, community supports, readmissions via Emergency, safety considerations of everyone – so much whitewater to navigate that becomes a new language. And this is the common story. All too common. Every day, everywhere, perpetually. Change is fast. Transition is slow. We were transitioning.

Finding a long-term care facility, planning for my dad’s move, ending his tenancy in his independent living suite, choosing preferences for subsidized beds, navigating community discharge liaison, obtaining a case manager, having the long-term care assessment, exploring community options, providing the POA, tax NOA…all is a process. As a nurse myself and having one physician specialist brother, a family physician sister-in-law, and surrounded by health care friends and colleagues, one might perceive us as more in the know. Nope. Not at all. It is a large and community specific system between acute, community, and long-term care. But it worked. And I understand with the pressures of our aging population, it is actually improving. Sure, there are still waits, gaps, bridges difficult to cross, however what I found was caring, human people caring about human people, regardless of their circumstance and clearly understanding care needs. Outstanding, phenomenal care transitioned with us from acute to long-term care.

Throughout all of this, and our decision-making, my dad was actually getting stronger, better. I know much of it had to do with him getting up, getting dressed in real clothes, getting into a routine, and getting to know care aides and them getting to know my dad. Still a process, but no longer wearing a hospital gown and relying on us for everything made all the difference. On his discharge day, he was ecstatic with wearing underwear for the first time in forever. What worked for us? Turning four yellow walls into a family gallery of memories, with as many family pictures we could fit in his new residence. Hiding hospital grade bed linens under a new, cozy comforter, stowing catheter bags under a wheelchair, making room for the blessed stack of blue pads in the bathroom, and having an overhead lift in the event it is needed. All of this started giving back pieces of independence instead of taking away. My dad was excited to see his familiar items once he moved in. He enjoyed exploring all the pictures on his walls, noting the scaled down closet of clothes, scooting in his wheelchair to pick out a CD to play, and watching his favorite MeTV shows. The shrink wrap loosened up just a little.

My compulsion to tell this story is because a) it is not unique but scarily common, and b) it has offered reflection for both full circle and bittersweet experiences. Frailty, physical and cognitive decline, changes to autonomy, advocacy, and dignity, all become layered and complex, bubbling and simmering into something different each day.

Just as my parents were my everything at the beginning of my life – caring, nurturing, loving, and trusting, so it is that we close this circle as our family are my dad’s everything at the end of his life – caring, nurturing, loving, and trusting. Sense-making is vastly different for my dad, but he trusts us with any settling fog for him. We are the beacon of safety and light in any of his experiences. My brothers and I visit every day, and his grandkids as often as they can. He looks forward to seeing us, telling us how his day has evolved and whether we understand or not, he makes sense to himself. So, we agree and keep any anxiety over the loss of short-term memory at bay for my smart, sarcastic, sweet, gentle dad. He has moments of either lucidity or insight or both. They are fleeting. He recently described the lovely, warm bath he experienced (with lots of bubbles, the right temperature, and squeaky cleanliness). My dad was previously meticulous with his clothing, style, hygiene, and it is heartwarming to see it still there. When I articulated how happy he sounded with the day’s bath, he clearly said, “Yes, and I know I can’t do that by myself anymore.” This, his single reflection, made the difficult decision-making, angst, stress, and outcome better for me and all our family.

However, it’s bittersweet. While we are happy with my dad’s care and long-term care residence, it’s sad, raw, vulnerable, and the grief of losing our big, strong dad while experiencing the anticipatory grief of his end of life is ever present. And what I really felt over the weeks of my dad’s path from fall, to delirium, to hospitalization, to decisions, to move, to long-term care is that at the heart of all these complexities is love. Nurturing, caring, compassion, and love is the language that crosses any abyss and is understood by my dad regardless of what else is going on. Those expressions of love are all that matters in my dad’s new world, and all of us as family are committed to making it so, leading with it every day and mindful of its time limited offer.

This was my summer of love.

Post script: I wrote this in September as we were transitioning with my dad to long term care. Unfortunately, he passed away in early November. Yes, it was more sudden and unexpected than any of us or his care team imagined. However, he had all of us, his children, with him, he had little to no pain and made his final transition still surrounded by love.