So You’re A Caregiver Now…

I’m Cara Wagner. I’ve held many professional titles and worked in various industries (including IE&EL), though in this bit of real estate, we’re going to talk about a very different job function….my role as a caregiver. This mini-series has one goal: help others in similar situations feel seen and supported. Maybe even take away a few tips or tricks to the endeavor. I’m happy you have found this little corner of the internet and my sincerest hope is that it gives you peace, grace, and perhaps even joy.

The simplest fact I know to be true about caregiving is that it is the hardest job one will ever have. I have shoveled horse stalls, worked as a security guard (yes, all 5’2” of me), and even handled public relations (PR) for the Boy Scouts of America. Trust me when I say, caregiving isn’t for sissies.

In early 2018, I had big plans – especially for my career. I was working as the lead marketer and publicist for a start-up tech company and I was catapulting my skills to create a reputation for my work in the industry. There were years of early mornings, networking, and skill building that brought me here and I was proud of my determination to climb the ladder and earn my place.

It was March when I got the phone call. On the line was a family member who had seen my dad at my grandpa’s estate sale. My dad had made rumblings about having an outpatient surgery in a couple of weeks to ‘remove a fishbone in his throat.’ To preface, my dad and I were not regularly communicating. He was private about his business, and health for that matter, so to hear anything at all was telling. In his 64 years on earth, he was rarely sick, went to the doctor a handful of times, and never elected for surgery. I assumed that this was an iceberg situation…you know, something that appears small on the surface but quickly grows.

Two days later I found myself driving him to a scheduled out-patient surgery at the local hospital by a general surgeon in his small town. Turns out there wasn’t a fishbone in my dad’s throat at all. The surgeon’s attempt to remove a large, balloon-like growth in my dad’s throat was unsuccessful because it was attached to his vocal cords. We were referred to an ear, nose, and throat (ENT) specialist in the city some two weeks later.

During the ENT appointment I deduced that my dad had a short amount of time to live. There was a basal tongue growth so massive it made talking, swallowing, and breathing nearly impossible. This outcome was a lifetime of combined alcohol and chewing tobacco use in the making. To cope with the realities, I feverishly took notes as the doctor talked about next steps. I even got permission to voice record this appointment (and subsequent ones) to make sure I understood all the facts and choices my dad had.

Walking in the parking lot after the visit, I knew that my dad had one choice to make – suit up to fight or find the bench. As we walked out, numb to the findings, my dad habitually reached into his back right pocket for his dip and before he had the lid off, I had slapped it out of it his hand into the parking lot. As disbelief filled his face I asked him,

“Dad, do you want to fight this thing or plan your last days? Before I put in the work, I need to know what your goal is here.” To which he replied, “let’s get busy livin’, buddy.”

The next weeks were a blur. The only way to beat this mass was to 1) place a trach to buy time to 2) shrink the mass using both chemotherapy and radiation. Since cancer treatment was not available in his small town, my dad came to Indianapolis to live with us on the night of his 65th birthday. That night my husband and me took him to Ritter’s Frozen Custard for a celebratory treat. I’ll never forget standing in line and thinking how many times I’d taken an outing like this for granted. Everything would soon change and yet this moment seemed so uninterrupted.

Initially I took my dad to every appointment but in just a couple of weeks found my career wasn’t built to support being a caregiver. My dad had just undergone a tracheostomy to keep him alive long enough to receive chemo and radiation therapy. At the trach placement, a biopsy gave us a name for the mass – squamous cell carcinoma.

My first experience truly advocating was telling the ENT specialist about his alcohol addiction (before surgery) and fear of his withdrawal (post op). After two nights in the hospital, it was determined withdrawal would have already happened. Thus, he was discharged to us, even after I pleaded with the staff. On our way out I received a five-minute crash course in trach care from the nurse, more equipment than I could carry, and a hotline if I needed help.

By 8pm that night my dad was went into alcohol withdrawal. I sat with him all night, certain that death would take him before dawn. 

In short, we were in a constant reactive state due to the aggressiveness of this growth. We did not have time on our side and many decisions were made instantly. I was barely sleeping, eating empty carbs, and dreaded coming home to deal with the responsibilities that awaited me. No one in my social circle had been a caregiver in their 20s and the weight that I carried left me feeling isolated. My dad was unmarried and though I communicated his status to select family, it was made clear that his journey was very much mine to manage.

Building up walls and protecting myself seemed like the best survival tactic. At work, I spent every possible moment between blog approvals, responses from media, quote requests, and sales support looking for resources to lighten the load.

I pivoted by hiring caregivers to intermittently help with him at our house while I was working but it had different pain points (no-shows, inconsistent trach care, etc.). Brainstorming how to get him to and from appointments became my third job. Inside Marion County limits were resources through Little Red Door Cancer Agency and CICOA but they ultimately were not a good fit for a few reasons: 1) even if my dad could get to treatment he often didn’t know where he was going, let alone what he was there to do; 2) my dad had too little cash yet too many assets which disqualified him for needs-based services – even though he wasn’t actively working; 3) some of the available support actually created greater burden for me because of pick-up/drop-off locations, operating hours, or approval timelines.    

In May, a co-worker (a father and caregiver of sorts himself) took notice of my physical state and recommended I meet his friend Jean. Jean was a decorated nurse who owned KayBee, a start-up that at that time was focused on helping caregivers like me manage ongoing care for their loved ones. At our first coffee date I handed Jean my dad’s health binder and hired her on the spot. I knew Jean was sent from God himself to save me, the hidden patient.

Funny sidebar about this interaction… Jean shared her pricing sheet and asked if it aligned with our budget. I remember looking at it and thinking that it seemed generally expensive, but affordable if it meant I didn’t miss work. I told her that I would make pricing align even if it meant I skipped the ‘nice to me’ things like getting coffee or lunch out, getting my hair done, car washes, etc. I got her first invoice, and it was something like $50. I doubled her payment (with a tip) and told her that I valued her work beyond what she was charging. This gave her the marketing validation she needed for her entrepreneurial journey and truly bonded us beyond the cause for care. If you find yourself wondering what a reasonable cost for a service is, think about the opportunity cost of you doing it yourself.

Immediately Jean established a Caring Village account to streamline my dad’s care. My dad’s cousin, Doug Parish, was (and still is) a Medicare Specialist. He literally had my dad equipped with the right plans to cover every single procedure (save the county hospital visit) overnight. This opened so many doors for my dad that we otherwise couldn’t have pursued. Jean opened my eyes to a possible short-term stay at a skilled facility (with coverage from Medicare) that could transport him to his appointments and monitor his vitals. We really began making quick, actionable progress.

With Jean and Doug’s help, we spent a year helping my dad continue to live with his cancer, liver cirrhosis, and early-onset dementia from alcoholism. Jean and I tag-teamed different parts of his care and she was able to be me when I had to put my career (or being a daughter) first. Appointments, facility placement, facility transfers, billing, care plans, dietitian plans, trach care, dementia evaluations, on-site caregivers, and hospice – we truly did it all. Doug was family first (my dad’s cousin) but due to his work, he knew Medicare so well he could tell us financially how to pivot care and have it covered.

I have more stories than I can recount during this time. Each of them with some sort of unbelievable plot twist about my dad exercising his strong will. He would go on to clean his guns on his kitchen table in front of his caregivers; lock himself outside, overnight, without a coat, during a blizzard; talk nurses into buying him Shapiros (or other food he couldn’t actually consume); lose and have his cell phone washed by a facility multiple times; and even sneak out of his facility with anyone willing to drive him for ice cream.

The literal and figurative cost of this journey was significant for everyone.

In the spring of 2019, I tragically lost a family member in an accident. I left an out-of-state work conference an evening early to attend the funeral and when I made it to the office on Monday, I was let go from my job. Due to my caregiving journey or not, it felt related. Rather than spend what little energy I had fighting over whether my termination was legal, I leaned on my secondary revenue streams from a photography business and opted to spend time with my dad. He had survived the cancer and yet his cirrhosis was going to prevail.

My dad lived out his last days at home where he felt most comfortable. Just after his 66th birthday I physically carried his reduced frame out of my childhood home and settled him into nearby a hospice facility for closely monitored care. In less than a month he passed quietly before I could reach him for one final “see ya later.”

Writing this nearly four years later is cathartic – even with counseling and coping tactics. I try hard to focus on the best days with my dad rather than the worst. He had such a witty spirit paired with a sharp mind and I often miss his perspective and knowledge. Both things I so wish I could tap into in my adult years.

Thankfully I recorded many of our conversations and took ample videos of my dad doing things I loved – his little sideways smirk and eyeroll, the way he called me “buddy”, and how he held an ink pen. His laugh faded so much over the months and his eyes lost their sparkle. Eventually the shell of my dad remained but his spirit had long gone. Having those little pieces of him made me feel like he was still with me even though his body was no longer able to support him.

Losing a parent is indescribable and seemingly bumps you down life’s proverbial conveyor belt. I was 29 years old, married, and without children. I realized that if there were things I wanted to do in life, I had better get busy doing them. At this juncture I also realized that my life needed more flexibility. Thus, my marketing and PR business was born, my photography business was scaled, I began manning the phones part-time for IE&EL (as a favor to sweet Ms. Jenny, of course), and I used my core time as the executor of my dad’s estate. Being busy seemed like a good way to work through my grief.

Overlapping part of my caregiving experience, my mother and her siblings became caregivers for my grandmother. The role I was playing in helping them manage expectations, emotions, and care was also becoming a challenge…. Read about that in the next post of this series.

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