Caregivers Rediscovering Their Identity
A friend’s wife suffered through a rough couple of years with cancer, and he served as her sole caregiver. Meeting up with him one day, I asked, “How are you doing?” He quickly replied, “Well, we’re doing okay. She just got home from the hospital, and seems to be having some better days. We have a long way to go, but our situation is better than it was.” He then shared test results his wife had, and gave a comprehensive update on her condition. After he paused for a moment, I pointedly said to him, “I asked how you are doing.” The ease of speech used to relay his wife’s circumstances instantly vanished. As tears welled in his eyes, he managed to stammer, “Peter, I’m scared and worn out.”
Both responses my friend gave me reflect the condition of virtually every caregiver I know—including myself. We tend to lose our identity in the story of someone else. When a caregiver answers direct questions in third person singular (he, she, etc.) or first person plural (we, our, us), it’s a good indicator the loved one overshadows the caregiver’s identity. When asked about our own hearts, however, we find ourselves caught off guard, and usually struggle to share our feelings.
One of the caregiver landmines is the loss of identity.
It’s simply too easy to become lost as the person pushing the wheelchair. We’re become the one standing in the hospital room corner, the one doing laundry or meals, etc. How can we talk about our own broken hearts or weariness when our loved ones have such drastic illnesses or challenges? Too many caregivers feel guilty for saying anything construed as complaining or wanting a break. After all, the suffering loved one doesn’t get a break from pain/disease/ disability. But our injuries and wounds, whether physical or emotional, require attention—regardless of how they compare to others.
The loss of identity is the first step on a downward spiral for a caregiver.
If we don’t start paying attention to and taking care of ourselves, a strong resentment can quickly take hold. In a relatively short time, we can find ourselves tied in all kinds of emotional knots of guilt, and other negative feelings. Most don’t understand that caregivers can easily lose their identity in caring for that loved one. In seemingly no time at all, it becomes difficult for caregivers to speak from their own hearts, pain, anger, frustration, and sadness. This loss of identity is the first step on a downward spiral for a caregiver.
Oddly, understanding this truth didn’t come from counseling or support groups (both of which I recommend), but rather I learned this one at the piano. Playing the piano since age five, I eventually earned a degree in music. In college I met Gracie who, although hurt from her terrible accident, is a wonderful singer. I mean, a no- kidding singer! For years, we performed together, and I accompanied her on countless stages and in the studio. When Gracie’s health declined and she could no longer maintain a regular public schedule, my public performing appeared shelved, as well. Surprising me day at church, my pastor asked a special request, “Peter, would you play before services each Sunday morning as people gather and facilitate a more reverent atmosphere in the sanctuary?”
Finding The Melody
Agreeing to his invitation, I sat down to play hymns I’ve played since childhood, only to experience an unexpected issue. Within just a few measures, I discovered my mind played a trick on me and I kept hearing Gracie’s voice. This led me to leave out the melody and I played only the accompaniment. The chords were nice, but they didn’t communicate the song. Quickly adjusting, I forced myself to play the melody.
We caregivers often find ourselves in this place: we lose the melody. Growing accustomed to someone else’s voice, we find ourselves playing a supporting role. The loss of our own voice, our melody—our identity, is a landmine with disastrous effect. That’s why I spend so much time on this issue for my fellow caregivers. We avoid this by reclaiming our identity and acknowledging our feelings out loud. Using our own voices we can express, “I’m tired,” “I’m lonely,” “I’m scared,” “I’m angry,” or “I’m weary,” and seeking the help we need.
Caregivers can also reclaim healthy identities by cultivating trusted and appropriate relationships. In those relationships, caregivers can safely express feelings and challenges with someone who understands their needs. Not limited to just friendships, a relationship with a trained mental health counselor can help sort through issues.
In addition, counselors can help connect to various respite and other type community services. Although each of these remain critical steps, they all start with a caregiver uttering: “I need help.” The next time a trusted friend asks, “How are you?” it may feel strange at first, but try and answer in first person singular. Appropriately sharing your own heartache and feelings is not self-centered; it is healthy—and healthy caregivers make better caregivers!
Resentment seems to be a regular companion for caregivers. It comes in flash points when we feel presumed upon, undervalued, and unappreciated. That resentment, however, cripples us as caregivers far more than it negatively affects others.
A pianist for even longer than my three decades as a caregiver, I often find myself at the piano working out the kinks in my soul. The music won’t come, however, if my fists remain clenched with resentment. Something beautiful flowing from my hands and heart requires opening both, along with a willingness to let go of resentment.
Each time my hands open to play the piano, it signals to my heart that it’s okay to release grudges, slights, or bitterness. It’s not easy, but the music flowing from that decision is soothing and healing to my soul—as well as listeners. We all possess the ability to make and enjoy beautiful music and art in our own ways. As caregivers, that beauty is not limited by the harsh circumstances we face and carry, but rather limited only by our unwillingness let go of resentment.
A goal I’ve set for myself as a caregiver is to one day stand at a grave. While I can’t guarantee outliving my wife and ensuring she and our sons aren’t left to deal with her massive medical challenges without me, I can, however, guarantee a better chance of doing so if I live a healthier life. Part of living a healthier life is avoiding carrying resentment. I don’t want to stand at that grave with clenched fists resentful at her, others who didn’t help the way I wanted, myself, or at God.
Letting go often starts with the simple act of opening one’s hand.
The heart will follow.
Few things rise to the level of the deep appreciation that I feel for my father and the impact he continues to have on my life. As a caregiver for a wife with extreme disabilities, I now recognize skills and behaviors learned from a man who didn’t journey down the road I travel, but nevertheless prepared me for it by modeling five specific behaviors.
- See beyond the symptoms. In his role as minister, I observed him engage individuals, couples, and families in all types of drama and trauma. Seeing past reactive behavior, he paid attention to the non-verbal cues, and directly addressed wounded hearts. As a caregiver for a woman in relentless pain, my wife’s body does not always get to take priority over her hurting heart. The moan of the body often muffles the cry of the heart, and it requires extra discernment to speak comfort to core hurts. Listening to that heart, however, requires a skill set not easily learned, but effectively modeled by my father.
- Lead by serving. Even after long days, my father often grabbed the vacuum cleaner, mop, or dishrag and help tidy things. He did not view the home as his castle, but rather a place to serve his family. Growing up with five siblings, we each had chores, but Dad led us all through his example. Although the surgery count for my wife has soared to nearly eighty, like most caregivers, I spend more time with laundry, cooking, and general housework than dealing with the medical community. Thanks to Dad, I learned to serve and to clean—long before becoming a caregiver.
- Treat others equally. Finding something in common with everyone he meets, Dad affirms the dignity of each person. This lesson helped me better understand people, as well as engage with America’s vast medical bureaucracy. During three decades of caregiving, I’ve needed the help of dozens of physicians, as well as nurses, techs. custodial staff members, and hospital managers of the twelve hospitals she’s visited. Dad taught me the common language of human dignity that inspires, motivates, and elevates people from all walks of life.
- Stay on Message. Whether due to his generation, or decades of ministry and military service, Dad seems to possess an amazing ability to stay on message. Knowing what he wants to say and accomplish, Dad navigates the quagmire of human drama with the deftness of a tightrope walker. As a caregiver, I daily face an onslaught of medical, emotional, financial, and other issues. If I allowed myself to travel down every rabbit hole—I’d get nothing accomplished. Thanks to Dad, I’ve learned to better keep the main thing—the main thing.
- Aggressively Love. My father passionately loves my mother, my siblings and myself, and our families. Showing deep interest in each of us, I remain amazed how one man can love and value so many. He demonstrates that value with astonishing service and sacrifice. My father exudes a joy in loving those who cannot currently, or may never, match his love. Yet it still flows from him. Dad’s love for others is a picture of God’s inexhaustible and unearned love for us. Daily putting myself between a vulnerable loved one and worse disaster, I’ve come to better understand that love.
No greater lesson for a caregiver exists than to learn to love those who may not be able to reciprocate.
The imprint (good or bad) of a father stretches into generations. That imprint contains the power to shape and direct long past the life of a father in often surprising ways.
It remains deeply satisfying for me to know that, however small at times, a reflection of my father is imparted to each wounded heart I encounter—including the most special of all to me: the heart belonging to my wife.
For more than thirty years, I’ve been a caregiver for my wife through a medical nightmare that continues to bring new challenges—often daily. With a surgery count that has mushroomed past six dozen, and treatment by now nearly 100 different doctors, this journey shows no signs of slowing down. Along the way, I’ve had ample time to make virtually every mistake one can make as a caregiver. Sometimes, I feel like the “crash test dummy of caregivers.”
Through this journey and through all the mistakes, I’ve also gained hard-won wisdom, and experienced teachable lessons on the challenges, predicaments, and heartache of the caregiver.
One of those teachable moments came following a snowmobile excursion in the forests of Montana with our youngest son, Grayson.
Ten miles from the paved road in a tiny town in Montana, my wife’s family’s home backs up to the national forest. No stranger to snowmobiles, Grayson, and I took off into the mountains and traveled deep into the vast Montana wilderness one afternoon. Trails are marked by reflectors posted periodically on trees, and if you are not paying attention, it can be easy to miss one of those markers. Although logging in many hours on those trails, this particular day was a windy one, and the fresh snow covered any tracks from previous riders made along the trail, and I missed a marker. Grayson and I found ourselves on a slope, in a deep snow drift, and my machine sank into the drift—and quickly became stuck.
Getting a sled out of deep snow is not too bad if you have two people, but the problem was, I didn’t know where I was. We’d have to work to get the machine freed and somehow make it back up the hill (in the soft snow) and find the marker. So if we spent all our energy digging the machine out of the snow, we still ran the risk of getting stuck even worse unless we knew where the trail lay, and could get our bearings there.
As the sun lowered over the peaks, the temp dropped. The wind howled and snow whipped around us, and I have to admit I felt more than a little unsettled. I wasn’t thinking about the house; I wasn’t even thinking about five miles down the mountain. I simply wanted to find that next marker, navigate to a place of safety, and get my bearings.
After a systematic search using Grayson’s machine, which he had kept back away from the soft drifts, we found the marker. Then, we worked together to free my sled from the deep snow. With my heart racing, I gunned the machine, felt it take hold, and made a beeline for the marker and the trail—where I knew the packed snow would make it easier to navigate, and give me a moment to catch my breath.
Arriving on the trail, Grayson and I then safely headed down the mountain.
Now, why was this a teachable moment for me as a caregiver?
We caregivers often find ourselves stuck in precarious circumstances—with deteriorating situations. Even if we spent the resources (money, energy, time) to get “unstuck,” we don’t often know where the path to safety is, and we risk getting in an even a worse spot—with fewer resources.
We need to know where the marker is. Stuck in that snow drift, I wasn’t thinking ten miles down the trail; I wasn’t thinking five miles down the trail. I just wanted to find the next marker and regain my bearings.
As caregivers, we often can’t think years, months, or even weeks down the road. We simply have to take the next right step and stay on a path to safety—and follow the markers to stay on a trail that is often hard to see.
In that snow-covered field, I couldn’t simply walk around. The snow was so soft that I sank up to my waist at times and had to be careful where I stepped. Each time I floundered in the snow, I risked getting hurt, wasting precious energy, stepping into a covered hole, and even compromising the ability of my son to help me.
This is our daily life as caregivers, but we often push ourselves to deplete what meager resources we have (physically, emotionally, and financially), and many of us get hurt in the process.
The markers are there, if we look for them. They’re a lot easier to find if someone who knows the trails helps point to them.
The first and easiest marker to find when we are freaking out and don’t know what to do is to “Do the next right thing.” Sometimes we work ourselves into a froth living way out in the wreckage of our future, and we’re paralyzed with fear in the present. The next right thing may be to just take a nap, have a bowl of soup, make an appointment with a physician or a counselor for ourselves, or call a friend. We don’t have to figure it all out in one afternoon. As caregivers, we simply encourage one another to do the next right thing, and before long, we will see a pattern of healthy choices.
That’s good to know, because “Healthy Caregivers Make Better Caregivers,” and today’s a great day to start being a healthy caregiver.™
In the face of overwhelming odds, we put ourselves in an often impossible situation, and keep doing it armed with little else than love—while spending blood, sweat, and treasure. I wouldn’t hang around somebody who treats me the way I treat myself, and I’ll bet you wouldn’t either. We treat ourselves mercilessly—thinking somehow because of guilt or whatever, we’ve got to push ourselves to the breaking point.
We’ve all heard the story of military drill instructors who look at a line of soldiers and ask for a volunteer. Then, everyone steps back—except the one guy who wasn’t in on the planned exit. He didn’t step back.
As caregivers, WE didn’t step back. We show up every day. Sometimes we do it well—other times, we make mistakes. Either way, our attendance record is perfect even if our service record isn’t. Regardless of what we do or don’t do, we still beat ourselves up because we didn’t do it as well as we think we should—or somebody else thinks we should.
There is a word for caregivers to remember: Grace. To me, Grace is the most beautiful word in the English language. I married a woman named Grace. I love saying her name. As caregivers, we rarely give ourselves grace—to our detriment. Healthy caregivers make better caregivers, and we cannot exist in a healthy state when carrying the crushing burden of guilt.
This kind of caregiver guilt isn’t about sins that get great press. Those things earn guilt. Rather, this type of guilt comes when a child is born with a disease or disability—or even something as simple as wanting to take a break for a day …or even a few hours. The list of things we punish ourselves for stretches beyond the horizon, but none of those things help us live a healthier life. We’re no good to anyone if we stroke out or become impaired ourselves by pushing ourselves to the breaking point.
Today is a good day to be a healthy caregiver, and that journey starts with extending grace to ourselves.