Living with Intention for Caregivers
Written by Melissa Schenkman, MPH, MSJ
How do you define what it means to be a “caregiver”?
For many in Generation Y, the first thought is being a caregiver as a parent to young children. But like so many things in our generation, people in their 20s, 30s, and 40s are expanding and even redefining the role of caregiver and what that looks like. More than ever before, we are experiencing becoming a caregiver for other adults earlier in life.
According to Johns Hopkins Medicine, a caregiver is defined as “a person who tends to the needs or concerns of a person with short- or long-term limitations due to illness, injury, or disability.”
When you are in the prime of your own life, taking on this rewarding yet challenging caregiving role – be it to a spouse, parent, or older relative in particular – has major impacts on your personal growth. It completely changes the dynamics of your day, what you prioritize, the time you have available, and ultimately how you view the world.
Matthew Ames knows this firsthand. He became a caregiver to his wife, Liz, when she was diagnosed with appendiceal adenocarcinoma. It’s a rare, aggressive form of cancer that develops in the appendix. Matthew was in his 40s and Liz in her 30s when they received their diagnosis. They had young children at the time.
He shares with us his hard-earned lessons on living with intention as a caregiver through embracing this role, shifting priorities, the power of tapping into your vulnerability, making time for self-care, and more. He hopes his voice will make a difference in helping fellow younger caregivers prepare for and navigate this role.
After all, caregiving is a part of life. As former first lady Rosalynn Carter once said: “There are only four kinds of people in the world — those who have been caregivers, those who are caregivers, those who will be caregivers, and those who will need caregivers.”
Embracing the Role of Caregiver
For Matthew, Liz’s diagnosis was shocking and impossible to process. He was certain right away, though, that he would embrace the caregiver role.
“There's no more important job in the world than to serve in that role for Liz. There's no life that I can imagine for myself that doesn't include her. So, if being a caregiver is part of the job description, then I enthusiastically accept that,” he emphasized.
Yet, part of embracing this role is acknowledging the profound change.
“I’m a different person, and I will probably always be a different person than I was before,” Matthew said. “I think if you're doing it with your heart and not filled with resentment or led only by a sense of dread and obligation, becoming a caregiver really is the shedding of your old skin and stepping into a new identity.”
It’s an identity that can require embracing change, as the needs of the person you give care to evolve. It was for Matthew. Initially, the role required hands-on-care, when Liz came out of surgery emaciated, frail, and in unforgiving pain – only to be followed by more chemotherapy treatments.
“She's years away from that now. If you look at her, she's back to running marathons. But she still needs care, just in a very different way,” Matthew said. “The more enduring part of the caregiver role is not the hands-on-care but more of the comforting side –- the voice of positivity, the encouragement, the safe space for her to be real about how she's thinking and what she's going through. And those conversations still happen all the time.”
He knew he would be a caregiver at some stage in his life. But like for so many of us, the timing and reality of when you step into the role can look very different.
“What you don't spend a minute thinking about until you're there is what that looks like when you're in your 40s, you're in the middle of your professional career, and you've got two small children who need comfort, care, attention, and everything else,” Matthew said. “I felt very unsupported, but not in a careless or neglected kind of way. It just seems like there weren't a lot of guys out there who were young dads and who suddenly found themselves thrust into this unimaginable situation.”
One of the reasons he wrote his book, Through The Impossible.
Matthew at an event talking about his book, Through the Impossible: Lessons in Caregiving From a Husband Who’s Been There.
Prioritizing What Matters Most
If you ask people under the age of 50 how often they feel ‘present in the moment,’ you’d probably be hard pressed to find even half who would say they do. For Matthew, caregiving changed that.
“Most of the time now, we focus on enjoying today and not letting a moment of this blessing of additional time go to waste,” Matthew said.
Being mindful and reframing his thinking about his priorities has helped him navigate the pressure he feels, like other younger caregivers, to do more at this stage in his career. He knows his decision to spend more time outside the office has come at real sacrifice professionally with missed opportunities. Yet, caregiving has taught him what matters more.
“When I sit and reflect on it, there's no life I would rather be living than the one that we share together. even if that means that my professional trajectory has been altered. By creating such an emphasis on time together as a family, it's a choice that I happily make every time,” Matthew said.
“Time is a precious commodity. Most people don't walk around with that being a top of mind priority, particularly younger people, because you've got such a long horizon ahead,” he said. “We're distracted by so many things in our careers and our professional ambitions, it can be very easy to lose sight of the big picture and of the fact that the sand is slipping through the hourglass every moment whether you are thinking about it or not.”
Like so many young professionals, Liz and Matt lead busy lives with lots of demands on their time. Their caregiving and cancer journeys, respectively, have taught them to make it a daily exercise to make the moments count. They think hard about what invitations they accept and have the bandwidth for, and which ones they politely decline.
“We don't always get it right. We struggle and sometimes it's a painful decision, but the things that we take a pass on, even if they sound like they're fun, we know it’s going to exact a toll on us in some other way,” Matthew said. “One of the upsides of viewing time for the precious commodity that it is, is that it really does add richness and perspective to your life. We really do sit and soak up and reflect on a lot of moments that I think would be easy to otherwise pass you by.”
Finding Strength in Vulnerability
Another valuable lesson of Matthew’s caregiving journey is how it was shaped by expressing vulnerability. Many of us think vulnerability is a sign of weakness, but Matthew wants fellow caregivers to know that embracing vulnerability can actually help you find strength in unexpected ways.
After Matthew expressed to Liz how anxious and low he was feeling after she had false positive readings on a scan, she encouraged him to seek a caregiver support group. This led to Matthew connecting with another young husband and father who knew about the demands of caregiving. For Matthew, that friendship and support has been “a really powerful thing.”
“Caregiving is one of those topics that doesn’t get talked about enough for a whole host of reasons. One is if you're a caregiver, you don't want to seem obtuse or ungrateful, or self-centered by putting any of the focus on you or your needs. People just don't feel comfortable opening up about what they're going through,” Matthew explained.
“So, what ends up happening is a lot of people, and I would have included myself in this category for quite some time, end up suffering silently. I didn't have a support group and there wasn't like a survival guide out there, it felt very isolating. I felt like I was a part of a very small and underserved demographic.”
Through sharing his experiences with others, Matthew found new sources of strength to draw from and help him build resilience. He hopes fellow caregivers will share their experiences to find the same.
Self-Care and Personal Well-Being
Finding time to prioritize self-care for a caregiver is easier said than done. Yet, keeping yourself healthy is critical for sustaining the responsibilities a younger caregiver juggles.
In Through the Impossible, Matt shares a memorable experience while was in the process of rethinking his daily priorities shortly after Liz was first diagnosed.
He received a package in the mail from a friend with a note that read, “Don’t forget to take care of yourself.” It made him realize he needed to find a way to still prioritize at least some self-care. One of his strategies was to tap into a practice that helped reduce stress during other times in his life. For him, that was exercise.
“It's valuable in its own right to have balance, get my blood flowing, and to clear my head. But even more than that, there's something deeper to it for me now. As a caregiver, so much of the role involves rearranging the priorities,” Matthew said. “To have that one thing that's yours and yours alone, those few moments of your day where you can be totally inward looking, and selfish and guilt free about it. I think it is very important for maintaining balance and sanity, and being good to yourself.”
“It’s also about preserving a part of me just for me,” he said. He encourages every caregiver to find that one thing (or more) that they can reserve just for themselves, whatever it may be, that can sustain them.
Matthew spending quality time with his sons enjoying a day of fishing.
Translating Lessons into Everyday Life
The lessons Matthew has learned during the different phases of his caregiving journey have had an ongoing impact on his day-to-day life.
“It is so easy to lose track of the things that matter in our lives. For so many of us, we are overextended and overcommitted, leaving us feeling frayed, exhausted, and burned out at the end of every week,” he said.
After becoming a young caregiver to his spouse on her cancer journey, he’s learned that the better way to go about your week is to live with intention. He offers these practical tips on living life with intention:
In your personal life, choose to only do the things that make you feel good about doing them.
Learn to say, “No” to invitations and be okay with it. When given multiple invites or opportunities, choose wisely and stick to the choices you make to prioritize your time.
Be present in the moment when you're engaging with others instead of letting something else distract you.
Prioritize your own care and dedicate time to do things that you enjoy.
“Living with intention is about being really clear headed, and sometimes making difficult choices with how you spend your time,” Matthew said. “For us it is a deliberate, conscious daily effort to sort of push back against some of the many of commitments and asks, and say, ‘We don't have to do a great many of the things that we say we do.’”
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