The Beautiful Burden of Caregiving

KATIE POLSKI | CONTRIBUTOR While in my early thirties, my mom was diagnosed with a debilitating brain disease. I was told by the doctor that she would lose every ability “from her head to her toes.” Within months of the diagnosis, mom lost the ability to form words. Shouts, groans, and tears became her agonizing way of communicating. Not long after, she lost the use of her legs and hands. My father passed away years before mom’s diagnosis, and since I was the only sibling who lived in the same town, I quit my job and assumed the role as primary caretaker. She lived for two years after the diagnosis, so between caring for my young children and keeping up with life’s ongoing demands, caring for mom often felt burdensome. As I’ve watched friends face the inevitable challenges that accompany aging or ill parents, it’s become clear that my sentiment was not unique. But what I discovered amid the challenging journey, by the grace of God, is that the burdensome call of caregiving is also one that is profoundly and incomparably beautiful. The Burdensome Exhortation Scripture makes abundantly clear that we are to honor our parents (Deut. 5:16; Ex. 20:12; Eph. 6:2). Though short, these verses are layered with meaning, and it is easy to apply them in the way we see fit. It’s important, however, to take care to not interpret these words from God based on our own feelings or agendas. The Pharisees did this, and Jesus rebuked them (Matt. 15:3-6). For us to obey this command, trust in God’s perfect Word is required. There are times when honoring parents is confusing, challenging, and difficult. And while honoring may look different from one situation to the next, there are no caveats given with these verses, though we sometimes wish there were. One of the many ways we honor our parents is by caring for them in their time of need, and not because of what they have or have not done for us, but because sacrificial love has been demonstrated for us in the gospel...

The Beautiful Burden of Caregiving2024-01-21T14:50:48+00:00

Caregiving with Compassion and Respect: Learning from Jesus

ELIZABETH TURNAGE|CONTRIBUTOR When my dad’s cancer spread to his bones, and he became at risk for falls, my brother and I acted quickly. Out of concern for his safety, we helped him move from the home where he had lived alone for the past twenty years into a comfortable assisted living facility. My dad often half-jokingly referred to the assisted living facility as “Shawshank,” after the prison in the movie “The Shawshank Redemption.” To an introvert who had lived alone since his divorce forty-five years before, being suddenly surrounded by so many people probably did feel like imprisonment. Caring with Compassion and Respect Our story with my dad reveals a common caregiver struggle. As caregivers, we seek the safety of our loved one, and in so doing, we sometimes ignore or minimize their desires. In our commitment to safety, we can also make the mistake of treating adults as if they were children, unable to make wise decisions for themselves. Even when dementia or disease prevents our loved ones from thinking clearly, we still must care for them with compassion and respect. To learn how to navigate this challenging terrain, we must remain centered in Christ’s compassion. Learning from Christ’s Compassion As he cared for people, Christ showed compassion by looking at and for people, by asking good questions and listening to the answers, and by gently pointing people to the hope they had in him...

Caregiving with Compassion and Respect: Learning from Jesus2023-08-15T13:35:11+00:00

When Downslide is a Downside for People with Down Syndrome

STEPHANIE HUBACH|CONTRIBUTOR STEPHANIE HUBACH|CONTRIBUTOR Upon picking my son Tim up from work one night, enclosed with his paycheck was a paper reminding employees of the company dress code at the grocery store where he works. (In his role there, we affectionately refer to him as “Cart Man.”) As I perused it, Tim asked me what it said. Reading it out loud, I quoted, “Hair of male employees shall be neatly trimmed and groomed.” To which Tim blurted out, in his jovial way, “What am I? A PET??” This type of wry humor has been characteristic of Tim for most of his teen and adult life. But not all of it. Have you ever seen the film Where Hope Grows, or do you watch Born This Way, or do you remember the TV series Life Goes On? If so, you likely have a positive picture of people with Down syndrome and their quality of life in the world. I am really thankful for that. I am deeply grateful for advocates in the generations before and during my son’s lifetime who have invested to create a more open society, a better public education system, and improved living conditions for people with Down syndrome (DS). A lot of social progress has been made for people with DS in the last several decades. If you are blessed enough to know someone with DS personally, you likely also have been embraced by a person who is frequently open-hearted to others, forgives easily, laughs heartily, worships joyfully, and dances freely. The ways in which many people with Down syndrome excel in life as image-bearers of the Living God can take my breath away at times. Many of them reflect God’s character into the world in stunning ways. My 31-year-old son Tim, who has Down syndrome, can be like that. But if we only characterize people by the successes we have made as a society on their behalf, or the ways in which their functioning is admirable, we miss the fuller picture of who they—and we—are as human beings. The Functional and Social Dimensions of Disability Disability can be characterized as having both a functional aspect and a social aspect. The functional aspect is the part of the body that doesn’t work the way we expect it to. In DS, this involves possessing an extra copy of the twenty-first chromosome. (Hence the medical name for Down syndrome: Trisomy 21.) This extra bit of chromosomal material creates a vast array of complications in learning, in communication, in the immune system, in heart health, and in digestive health—to name a few. The functional aspects of disability cry out for merciful engagement  from others. I like to rely on the definition of mercy that was posited by St. Gregory of Nyssa—that “mercy is a voluntary sorrow which enjoins itself with the suffering of another.” While most people with DS would not describe their lives as being characterized by suffering, in my personal experience, most people I know with Down syndrome would acknowledge that their extra chromosome does present genuine challenges in their daily functioning in the world...

When Downslide is a Downside for People with Down Syndrome2023-08-15T13:42:03+00:00

Whining vs. Biblical Complaint in Caregiving

MARISSA BONDURANT|GUEST When my kids wake up in the morning and complain about getting dressed for school, and the breakfast options I’ve offered, and the color of their lunch box, and the way their sister looked at them… I tell them to “stop whining.” When my own heart is dissatisfied with how my pants fit or my husband’s work schedule, or the fact that I wasn’t invited to something… I tell myself to “stop having a pity party.” But when our hearts are broken, sad, overwhelmed, and discouraged at the suffering of our loved one and the life changes required to care for them, should we still say “stop whining” to our tender hearts? Or is there another way to think about the brokenness we are experiencing? I believe there is a real difference between whining and biblically complaining. Whining is what we do when our preferences aren’t being met. Biblical complaint is when we acknowledge the disconnect between the pain of our lived-in reality, and what we know is true of God’s character and his plan for redeeming our world...

Whining vs. Biblical Complaint in Caregiving2023-08-15T13:44:52+00:00

How to Cope with Anticipatory Grief as a Caregiver

ELIZABETH TURNAGE|CONTRIBUTOR As Marissa Bondurant mentioned in our last article in this series, caregiving, while a burden, is also a calling. Today I want to explore one of the common challenges of this calling: anticipatory grief. Anticipatory Grief Three years ago, Lara’s father was diagnosed with Alzheimer’s disease. As his primary caregiver, Lara is struggling. She finds herself crying frequently, losing her temper daily, and feeling anxious constantly. Like many caregivers of people with progressive or terminal disease, Lara is experiencing anticipatory grief. According to bereavement counselor Marty Tousley, “Grief occurs in anticipation of and following a loss. Extended illness, disability, severe accidental injury, a terminal diagnosis, or the aging and decline of an elderly family member can produce anticipatory grief.”[i] Symptoms of anticipatory grief may include anger, anxiety, depression, denial, irritability, and difficulty concentrating. The caregiver may also experience a sense of hope as she imagines the coming relief from her caregiving burden. Following that sense of hope, she may feel guilt. While many psychologists call this grief “anticipatory,” others note that “anticipatory” may not be the most accurate term, because the caregiver is experiencing grief over current loss—the loss of the ability to enjoy life with her loved one as she did in the past, the losses her loved one now experiences due to limitations, and the loss of the caregiver’s “normal” life. The first thing caregivers need to know is that both anticipatory grief about the future and present grief about the loss of past joys is to be expected. In addition, the caregiver can take comfort from and learn from Jesus as she navigates anticipatory grief...

How to Cope with Anticipatory Grief as a Caregiver2023-08-15T13:46:46+00:00

Caregiving as a Calling and Ministry

MARISSA BONDURANT|GUEST If Jesus visited your church this week, which ministry team would he sign up for? This is a hypothetical scenario, but I think Jesus would sign up for the ministry of caregiving. When you hear the word “caregiver” you might think of a trained professional like a home health worker or a nurse. However, the dictionary definition is much broader. A caregiver is described as anyone who regularly looks after or cares for a child, an elderly, or a disabled person. National surveys estimate that 40% of adults in the United States are caring for an adult and/or a child with unique health needs1,2. For this article, I skimmed the book of Mark and counted thirteen stories of Jesus healing individuals, and three separate accounts of Jesus healing entire crowds. If we know God has a heart for caregiving, and we know that 40% of our church members are caregivers, the question to ask is: are we treating caregiving as a ministry? As caregivers, do we see ourselves as having been called into this role? And as churches, are we training, equipping, and supporting one another in this mission field? In this caregiving series, Elizabeth Turnage and I want to help start some of these conversations. We will do that by shining a light on some of the lesser discussed aspects of caregiving. Things like anticipatory grief, giving dignity to a sick or dying loved one, and the difference between whining and biblically complaining...

Caregiving as a Calling and Ministry2023-03-24T17:44:33+00:00

How Jesus Cares for Caregivers

MARISSA BONDURANT|GUEST There is a picture on my phone that is hard for me to look at. It’s of me lying on the sofa with our four-year-old daughter lying on my chest. She’s completely bundled up in a thick, furry blanket. It wasn’t a cold day, but because of how sick the cancer had made her, it was the only way she was comfortable. I remember feeling exhausted that day. And overwhelmed. And sad. So sad. Deep in my heart, I asked God tough questions about my child’s suffering. I wondered what the days ahead would look like. I lamented the fact that I really didn’t want to be in that caregiving position. After all, caregiving is hard. Not only do we grieve the suffering of our loved one, but we also process our own losses. Caregiving requires us to lay down our preferences and plans, and pick up the holy calling of meeting the needs of another. Caregiving also means keeping. Keeping appointments and medicine schedules. Keeping doctor’s numbers and medical details. Keeping up with cleaning, cooking, and other family members’ needs. Keeping track, keeping up, keeping on top of. In the marathon of caregiving, we might hit a point where we look around and think: In all my caregiving, who cares for me?...

How Jesus Cares for Caregivers2023-03-24T17:46:48+00:00

Labor Day for Caregivers

STEPHANIE HUBACH|CONTRIBUTOR Most of us think about Labor Day as a day for eating hot dogs and hamburgers, getting that last taste of fresh farmstand produce, and signifying the beginning-of-the end of summer. Where I grew up in Maryland, it also represented the last day of childhood freedom before the new school year began. The actual history of Labor Day, however, harkens back to the late nineteenth century, when organized labor groups sought recognition for the work of laborers in society during the Industrial Revolution. Today, I’d like to honor a group of laborers who are as diverse and disconnected as can be imagined, and yet contribute significantly to the health and well-being of society: caregivers. When we think of labor, our minds tend to gravitate to manual labor and workers who receive wages in the marketplace in exchange for their efforts. But there is an entire army of laborers who care for people who lack the ability to care for themselves. Caregiving is a voluntary role, borne out of the need for assistance. This care can include physical care, emotional care, spiritual care, financial care, and logistical supports. Caregivers may care for young children, people with disabilities, people with chronic illnesses, or the elderly. In other words, caregivers are the unsung heroes and the unpaid labor force of the family economic system...

Labor Day for Caregivers2023-03-24T17:50:08+00:00
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