Life as a Caregiver: Balancing Roles as a Husband and Father

Written by Melissa Schenkman, MPH, MSJ

For Matthew Ames, life as a husband and father was everything he had ever imagined and so much more.

After a long-time friendship with his now-wife, Liz, the two began dating and a few years later got married.

They shared a passion for early morning, hard-core workouts and travel. No matter where they went, they would always make it a priority to map out a run to explore a new city on their own two feet.

After a few years of marriage, they took on the next adventure: building their family. They had two sons, both active as mom and dad, but with a passion for soccer.

Life was great.

Like many fathers, Matthew worked hard to find the right balance between his demanding work life, where he is partner in a law firm, and spending time with Liz and their boys. He had hit his stride when in July 2019, something knocked him and Liz off their feet.

A healthy and highly fit 39-year-old, Liz went from having a hernia (which she was about to have surgically repaired) to learning that the distention in her stomach, digestive distress, and fatigue she had been experiencing was the result of appendiceal adenocarcinoma. It’s a rare, aggressive form of cancer that develops in the appendix (a finger-sized pouch located between the small intestine and large intestine).

Matthew shares with us the challenges of simultaneously being a caregiver to both young children and a wife who was fighting for her life. He gives a voice to the often-unspoken emotional toll of being a caregiver and the value of finding the right support, and what it took to find his.

As Liz reaches the amazing milestone of five years with no evidence of disease, he reflects on how transitioning from husband to caregiver changed his (and Liz’s) perspectives on life, and why he chose to write a book, Through the Impossible, to help fellow caregivers navigate one of the most uncertain but rewarding and important roles a person could serve in a loved one’s life.

The Beginning: Navigating the Diagnosis

To explain how rare Liz’s type of cancer was, you just need to look at the numbers.

“The most current estimates were that there are about 1500 cases a year of appendix cancer diagnosed – and of those 1500 cases, 10% of that number is what's called the high-grade cancer, which is the most dangerous and aggressive form of the strain. That's unfortunately what Liz had,” Matthew said.  

“We like to say statistically speaking that we had a better chance of winning the lottery than we did being diagnosed with her disease.”

He found the diagnosis impossible to process all at once.  Only a few days before receiving the shocking news that Liz had cancer, the very same hospital told Liz her distension and digestive distress was caused by the hernia she was about to have repaired. Getting past a rare cancer diagnosis seemed like an impossibility.

“I mean one day you're living your life and living it well. Then the next day, you're facing an existential crisis from something that you've never heard of, and you can’t even pronounce,” Matthew said.

While processing all of this information and what it meant for their lives took time, he quickly understood his main focus in life would be as Liz’s main caregiver.

Balancing the role of husband and father amidst uncertainty was challenging, but with each passing day he learned a little more on how to make it all work.

“A lot of my role as caregiver in the first year was tending to Liz first and foremost, but also making sure that all of the other things in our lives that were important got the attention that they needed,” Matthew said.

That meant administration of their home and their lives. Getting their boys to and from school, scheduling childcare with friends and family while he was scheduled to be at Liz’s side, taking care of the household itself, and continuing to work and keep up with his job as best he could.

Describing caregiving as a multifaceted role doesn’t even begin to cover it. It completely redefined his identity and his priorities.

“It's just a total reframing of how you spend the idle moments in your day thinking about your life and what's next and your priorities,” Matthew said. “Time is your most precious commodity.”

Matthew Ames, a father, husband, and caregiver to his beloved wife Liz during her treatment for appendix cancer, who has added the title of author to his list.

He wrote a book to share his experiences as a young father in the caregiving role for a spouse, a role in which resources are lacking, especially for millennials and Gen Z.

Shifting Priorities: From Family Life to Caregiving

Long before Liz got sick, Matthew prioritized his family over work.

When he first started practicing law, he remembers observing other practicing attorneys who spent entirely too much time away from their families.  Many were financially successful but with unhappy home lives.   

“In viewing all of this as a young guy before I had a family on my own, I thought to myself, ‘I don't know what life has in store for me, but I don't think this is what I want,’” he reflected. “So, long before Liz got sick, I was focused on getting that work life balance right.”

That established emphasis on work-life balance served Matt well as a caregiver. Liz endured a brutal 14-hour surgery as a part of her treatment, and when she came home after her three-week hospitalization, she required hands-on care during her recovery. She was struggling with anxiety, exhaustion, and unforgiving pain. At the same time, their young boys still needed care and attention also.

“A big part of the caregiving demand in my role was giving additional attention to our children. Even though they were too young to know what Liz was going through, on some level they knew that something wasn’t completely right at home,” he said.

To ensure the boys had the attention they needed and to maintain as much normalcy as possible, he made changes to his work schedule to make sure he was regularly present, and readily accepted help from others.

 Matthew told his law partners early on about Liz’s diagnosis and what the road ahead would look like for his family. He made arrangements to work from home, distributed some of his work to other colleagues, and spent weeks away from the office to focus on Liz’s care.

As much as he wished to be in two places at once, he learned to accept help from family members and close friends to care for his boys when he was tending to Liz at the hospital or caring for her at home.

Emotional Impact: Challenges of Caregiving

An unspoken part about being a caregiver is the emotional toll it takes. That was a surprise to him and to Liz, who did not expect the emotional impact of the trauma to extend long after her treatments ended.   

“When I go back in time, we faced such difficult odds when we were first diagnosed. We didn't spend a whole lot of time imagining what life was going to look like when Liz was done with her treatments. We were just praying that we were going to make it through,” Matthew recalled.

“One of the most frightening things about the disease as they're prepping you for surgery is they don't know for sure what is going on until they get inside there. There are limitations to what you can see in the scans.” They were facing several different possibilities, including the unimaginably tragic one where the doctor opens you up and says, ‘There's just nothing I can do.’

The emotional toll of caregiving – trying to stay strong for Liz and the boys amidst great uncertainty – would show up for Matthew in different ways. This included anger, sadness, and overwhelming stress.

Two things that helped him maintain emotional stability: exercise and recognizing the need for professional psychological support.

Exercise had been a reliable stress management tool for him in every stage of his life. While it fell down the list of priorities when Liz was first diagnosed, it eventually played a key role in helping him channel his stress in a healthy way.

Matthew with Liz when she was in the midst of treatment for high-grade appendiceal adenocarcinoma, or more commonly known as high-grade appendix cancer. It’s a very rare type of cancer.

As Matthew writes in his book, “Rather than falling into the trap of thinking I couldn’t afford the time to exercise, I turned the concept inside out. I told myself I couldn’t afford not to find the time to exercise.”

He also hit an early point when he realized that he needed to seek professional help. At the time, Liz was undergoing genetic testing to see if there was a genetic link to her cancer that could potentially also impact their sons.

The worry for his boys was so overwhelming it led him to seek professional counseling. It’s a decision that has served him and his family well.

“If you neglect your mental well-being, you’ll ultimately fail not just yourself but also the ones you are supposed to be caring for,” Matthew explained.

Support Systems: Finding Resources and Help

Finding support is crucial for a caregiver. But as Matthew discovered early on, unfortunately, there is not always a clear roadmap for finding it.

While he saw a therapist before Liz’s surgery, for a period of time there were just not enough hours in the day. Once she was back home and making her way towards recovery, he started speaking to a therapist again and found it indispensable.

“Over time though, I felt like I needed more support. The therapist who I was seeing was terrific, but there's something about the lived experience of being a caregiver that you can't replicate,” Matthew said. “You have to know what that's like, and I was missing that kind of support.”

After a false alarm scare on a scan approximately three years ago, he says he went to a really dark place. It was then that Liz suggested Matthew seek a support group for caregivers that would provide the additional tools he needed.

While he could not find one for young spouse caregivers, the head Rabbi at their synagogue introduced Matthew to a fellow caregiver.

“That sparked a friendship that has become deeply meaningful to me. To be able to talk to, confide in, share ideas with, and hear from someone who knows something about the journey has been a really important part of maintaining my mindset, my optimism, faith and gratitude,” he said.

It is one of the main reasons Matthew decided to tell their unflinching story in Through the Impossible: Lessons in Caregiving From a Husband Who’s Been There. It captures the real, everyday challenges he faced, how he coped with them, and the lessons he learned – lessons he wanted to share with other caregivers trying to navigate the daily balancing act as he had.

“If any part of this book can make a difference to someone else—whether a caregiver or someone in any moment of struggle—then all the better. Because I’ve benefited so greatly from leaning on my support network over these past few years, the idea of paying any small bit of it forward is a humbling one,” Matthew said.

Matthew at an event talking about his book, Through the Impossible: Lessons in Caregiving From a Husband Who’s Been There.

The importance also of having a strong support foundation of family and friends to lean into cannot be overstated.

Liz’s mother took turns with him to stay by her side during her time in the hospital. Friends and family members offered hands-on help to keep the Ames household running. There was a year-long ongoing meal-train.  There was help with weekly errands and drugstore pickups for Liz’s prescriptions. There were vouchers for professional laundry services.

These gestures were key to making it possible for Matthew to support Liz and the boys while also maintaining his own well-being.

Parenting Through Uncertainty

Accepting the offer of extra hands-on-care for the boys from family and friends was especially important to help maintain a sense of normalcy and stability amidst Liz’s illness.

“Mom and Dad may not have always been around, but there was never an absence of love or comfort in their everyday lives. I am glad that I resisted my initial (and ill-advised) instinct to think I somehow could handle all of their needs without major help,” said Matthew in his book chapter advising caregivers to rely on their support systems.

Another way to maintain comfort and stability was by continuing their family Friday celebration of Shabbat – a ritual that began long before her diagnosis. Every Friday, they would pause and take time to reflect and say what they were thankful for.

“It was very grounding and comforting to look forward to having that moment in time where we said we're thankful for one more week together as a family,” Matthew said. “That was a really uplifting part of the journey for us.”

Matthew with his sons fishing in the North Georgia Mountains.

Lessons Learned: Personal Growth and Insights

When he reflects on the past five years, he remarks that just reaching this point – with Liz now cancer-free – is nothing short of a miracle. Especially given what they were facing at the beginning of this journey.

For Matthew, the caregiver role has transformed his perspective on life, making family time of even greater importance, and teaching their family about the power of resilience. It continues to shape the way they live their lives.

They have a daily commitment to make their time count.

“We make sure we are living in service of our values and things that are important to us,” he emphasized. A big part of that is doing their best to remove the things that are time wasters and just not serving them. After all, as Matthew repeats, “time is your most precious commodity.”

“We have a real sense of urgency to see and do and consume as much of life as we possibly can, and we don't feel completely comfortable viewing it in terms of the same timeline that we once did. We're not going to be that couple that saves all the things that they want to do until retirement because we don't know what that looks like for us.”

Whatever that picture may look like, he knows he’s a changed person as a caregiver. But he’s more than okay with that, because it means he will forever be by his family’s side.

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