5 Insights from Two Decades of Caregiving

By Dorian Martin, I Start Wondering Founder

September was full of memories for me. 

That month marked the 10^th anniversary of my father’s death and the 19^th anniversary of my mother’s. It also was filled with news of hospice care for one of my elderly relatives and a friend’s husband, along with the passing of others in my network of connections.

As a result, I was swept back in time and down the rabbit trail of caregiving memories; recent columns by I Start Wondering’s Danielle Legg and Myka Alley on their experiences with aging parents and Dolly Parton’s recent death after caring for her husband kept the reminiscing flowing.

Although I tend to tell people I spent 11 years in a caregiving role for my parents, that period encompassed the up-close, hands-on experience. What it doesn’t include is the nine-year slow immersion when my parents’ health began to fail, and I had to begin assuming ever-increasing responsibility for their care. All totaled, I spent 20 years – two decades – providing support to my parents in some way in the last chapters of their lives.

While I think we all experience caregiving from a personal perspective, I want to share my caregiving insights that you won’t always read in articles about the topic.

Caregiving often starts earlier than the official diagnosis date.

We often think that caregiving has a “start date,” as if you’ve been officially hired for the role. But in my experience, caregiving creeps up on you. It starts with something like a medical diagnosis, a situation (such as a fall), or an instinct that something has shifted. 

In my case, it was a combination of those somethings. My realization happened shortly after my parents moved from West Texas to Austin in the mid-1990s to be closer to me. They focused on staying active and engaging in a new city; however, Mom’s breathing became more labored, a signal of worsening chronic obstructive pulmonary disease.

The irrefutable sign that things had dramatically shifted happened one afternoon when I stopped by my parents’ condo on the way home from work. Spotting large dark red blotches on the front step, I offhandedly thought, “This looks like someone got stabbed here.” 

It turns out that what I saw was blood – my mother’s. Upon entering their home, I found Mom sitting in the breakfast room with her heavily bandaged leg propped up. She had been outdoors gardening when she hit her shin on something that was never determined. She didn’t rip her pants or knee-high stockings, but did tear her skin, which was extremely thin due to the steroid prescription she was taking. As a result, she had to have 37 stitches.

From that day on, it seemed like the little things became huge health hazards. We had to rush to the hospital after Mom’s airway closed after biting into a pepper at a Mexican restaurant. Another ER trip was prompted after Mom hit her elbow on a wooden armrest at a theatre, which opened up a skin tear that wouldn’t quit bleeding. 

These various instances served as my signal to start bracing myself. My days of caregiving were starting, even though I wasn’t diving into the deep end of the caregiving pool yet.

Long-distance caregiving is part of the reality.

In 2000, my parents moved back to West Texas in hopes that the drier climate would be more conducive for Mom’s labored breathing. At the same time, I moved two hours further east. As a result, I was seven hours away by car, and there was no direct flight that could get me to their city any faster than that. 

That proved to be a challenging time as both of my parents started to struggle physically and mentally. And because of their move to Austin, their West Texas network of neighbors and friends who could have been a support to them had fallen apart.

As their health declined, I found myself trying unsuccessfully to piece together their situation from regular phone calls. The faulty information was compounded by my mother’s increasing memory decline and loss of judgment. 

This showed itself one evening in December. Mom called me in tears when my father was suddenly hospitalized with a heart issue.  She had navigated from the hospital back to the house but couldn’t get the garage door to open. She ended up calling the firefighters to assist her, but I have always wondered if she had forgotten how to use the remote control because of the combination of mild cognitive impairment and all the stress she was under that night. 

When we spoke, she was planning on heading back to the hospital for the night. She told me she was going to leave their aging dog outside, not taking into account that a hard freeze was predicted. I talked her through the various decision points that night and fortunately, the situation resolved itself – but this experience also served as a warning flare that my parents’ issues were escalating and would soon make it exceptionally difficult to provide appropriate support from a distance.

Caregiving brings up relationship shadows.

Emotional issues and unhealthy relationship patterns can and probably will show up in these situations. I saw this emerge with my father, who increasingly was unable to emotionally navigate Mom’s deteriorating situation after they moved. He started calling me regularly, telling me to get a pen and paper to write down what he was seeing. His expectation: I would talk to Mom about his observations. 

While his concerns may have been valid, he put me in a compromised position to the point where Mom thought I was his ally. She angrily confronted me during one get-together, expressing her concerns that we were ganging up on her. 

I found myself increasingly resenting my father, especially since I wasn’t seeing the things he was describing. I eventually talked to a therapist in an effort to deal with my increased stress levels, which were impacting me physically and starting to undermine my job performance. 

The therapist eventually told me, “Based on your situation, I believe you have a couple of options. The first is to continue as you’ve been doing with your father. The second is to adopt a position that your parents are both adults, and they need to handle their problems and issues until they ask you to step in and take over. I’d recommend the second.”

I took the therapist’s advice and began setting boundaries with my father. That wasn’t easy, but I needed to focus on self-care and my own sanity instead of being torn apart by my parents ’relationship and health issues. 

In hindsight, I also realize that my father had been emotionally shutdown throughout his life and always avoided conflict. He had always relied on Mom to handle any conflict that emerged, whether those issues were with my brother and me or with the fabric stores that they owned and managed. When Mom was no longer capable of handling the role and instead had become a part of the conflict, Dad desperately looked for someone to offload these challenges. As a result, he tried to “select” me for that role instead of figuring out how to navigate it himself.

Compassion fatigue is a thing.

We also are raised on Hallmark movies that idolize the caregiving experience. While that can be true, I have found that long-standing relationship dynamics can tip the scales the wrong way as caregiving requirements increase.

Ultimately, I found that while I had the best caregiving intentions, by the time I was about seven years into the in-person, hands-on caregiving journey, I was suffering compassion fatigue. According to Psychology Today, compassion fatigue is “a state of intense emotional disconnection, exhaustion, and distress that's also known as secondary or vicarious trauma. People experiencing compassion fatigue can struggle with acute symptoms that put their physical and mental health at risk, making them wary of giving and caring.”

I’d describe compassion fatigue as being the proverbial frog who is put into a pot of water and then the temperature is slowly turned up. The frog doesn’t realize what’s happening until it’s too late, and it boils to death.

As I’ve noted before, I burned out physically, mentally, emotionally, and spiritually, resulting in my decision to take a year-long fallow period toward the end of my father’s caregiving. By that point, he was in an assisted living facility, so I could carve out more time and space to begin to decompress and rejuvenate. However, it took many years to fully recover physically, mentally, and emotionally from the overall caregiving journey.

Starting with the end of caregiving in mind – and then reviewing how it went. 

Ultimately, caregiving for elders is part of many women’s lives and it can be a noble calling, albeit difficult.

With that said, probably the best thing I did when my caregiving days were starting was to determine how I wanted to feel when those days were over—or as Stephen Covey says, “Begin with the end in mind.” 

While “relief” was one word that came up, my other words included proud, thankful, integrity and no remorse. I wanted to deepen my understanding and relationships with my parents, and help them navigate their final chapters in a peaceful and loving way. I also wanted to ensure that my relationship with my brother was strengthened by the time my caregiving days were over. 

Ultimately, looking back, I feel I succeeded for the most part. I wasn’t perfect; I lost my temper several times (especially with my father) and at times resented that my priorities were no longer appreciated. With that said, I also learned important lessons in boundaries, advocating, and self-care. I became clear about what I would do – and what I wouldn’t do.

After each parent died, I contemplated my experience and gave myself a grade. Because I was closer to my mom, I perhaps overinflated my self-administered grade of A-plus.  Still, I had made sure she was well cared for while also keeping my life afloat. I kept my brother and other family members in the loop and didn’t take on the emotional tasks that my father would have wanted me to handle. While I couldn’t fulfill her wish of avoiding a nursing home, I did show up almost every day and held the nursing home staff accountable.

My father was a tougher case, but I’d still give myself an A-. We did establish a closer relationship over the years, eventually reaching détente. I tried to lovingly guide his medical care when I could, whether that was in physician selection or end-of-life decisions. I was there when he had emergency surgery and remained in the hospital for over 40 days. I also served as “the parent” and sternly called my father to task when he made inappropriate comments to the assisted living center’s staff. And again, I kept my brother as well as Dad’s brother in the loop as best I could.

Revising My Definition of Legacy

Ultimately, I’ve accomplished a lot over the years – and still hope to live a full rich life in the future.  As we age, we start thinking about our legacy, which is often guided by society’s emphasis on external achievements such as job titles, promotions, and awards. 

While I’ve been fortunate enough to burnish that part of my life resume, I personally find that those achievements have been surpassed by how I handled caregiving for my parents before they died. In truth, taking on that role was my worst fear – and ultimately, my great gift. But that’s a topic for a future column….

How did your journey into caregiving begin? How are things evolving – what are the good parts and the more challenging ones?