During serious illness, bad news piles up. It’s like an El Niño—you have to weather a string of storms. At first, each deluge floors you and knocks you off your feet, but you get back up. Then it happens again, and again, and again. When you think the news couldn’t get worse, it does. Regardless of how prepared you are, how low your expectations may be, it’s always a shock.
- Dr. Steven Pantilat.[1]
This is what it felt like when my husband Ken was first diagnosed with AML (acute myeloid leukemia) and received intensive treatment—spending a total of 120 days in the hospital in 2019—which culminated in a bone marrow transplant (BMT). The “curative” transplant was not the end of the story, however. Unlike many other illnesses and treatments that can have a definite end date and cease to be a part of daily life, allowing the patient to transition back to life as it was previously, transplant issues and complexities become a new normal, a chronic struggle to balance things that previously balanced themselves.
After surviving the treatment and obliterating the leukemia, Ken and I now find ourselves looking around after the storm and feeling like we were blown over a cliff and now are in a strange land with unexpected realities and seeming absurdities. The intensity of the storm is over. We have landed on the ground after what has felt like a free fall from a cliff, but now we face a new life of chronic pain and struggles. The delicate balance of medications that sometimes causes new medical challenges and the awareness of the possibility of relapse are two new realities that we did not previously live with. We frequently pray for shalom (“peace, order”) within Ken’s body as his new immune system wages war against parts of his old body, causing new medical challenges. All transplant patients face particular challenges and a range of symptoms and treatments, and this causes the caregiving experience to be unique in each situation. But topics like instability, fatigue, and endurance are common to many caregivers.
Instability and Peace
The instability of the present and the future is something that all caregivers must wrestle with. There is a constant underlying fear of recurrence of the disease or of intensification of the chronic issues and the possible devastating ramifications either one can have on the relationship. The illusion of personal control over one’s life is shattered, and the new reality is unstable and unpredictable.
In Life after the Diagnosis, Dr. Steven Pantilat observes that “serious illnesses progress at different rates. Some move so quickly that you feel like you’re out of control. You can barely catch your breath. . . . You’re constantly besieged by new problems that demand more urgent action. You feel like you’re in a storm or falling off a cliff.”[2] Other times the concerns are more chronic or develop slowly over time. Regardless of how the illness progresses, the frustration of the situation and the helplessness and sadness of watching a loved one struggle so deeply are commonalities among caregivers. As the patient loses abilities or freedoms, the caregiver watches from the sidelines. The immediate facts of the situation and the intensity of the treatments and side effects can create turmoil and terror, but the unchanging truth about God and his unending faithfulness can create peace, a peace that surpasses all understanding and that guards the hearts and minds of patient and caregiver alike (see Phil 4:7). I felt the tremendous peace of God throughout our ordeal and even into the present through music that reminds me of God’s love and faithfulness, scripture reading and meditation, and honest (often raw) prayers with God. With an increased awareness of the fragility of life, I see God in a new way, and am drawn to him with a renewed intensity. This closeness and acknowledgement of God’s sovereignty is freeing, and brings peace in a surprising way.
Fatigue and Grace
Most caregivers feel an immense fatigue and pressure of the situation, often feeling unable to let their guard down or to relax. Casting anxiety and burdens on the Lord is a huge relief and blessing (see Matt 11:28–30; Phil 4:6–7; 1 Pet 5:6–7), but there is still a strain in everyday living. The way that medical challenges dominate personal thoughts and conversations with others can also be wearisome. Fatigue can lead to isolation as the caregiver and/or patient does not have the capacity for the busy schedule and relationships they may have previously enjoyed.
Caregiving also usually means an increase in responsibilities and often the need to learn how to do new things. This can include the need to run interference with others for the patient, trying to explain to inquiring friends and family what is happening, what treatments are being pursued, and what physical needs can be met, as well as what the prognosis for the future is. Caregivers can also be tasked with being the intermediary between the medical professionals and the patient, which necessitates learning the complexities of the diagnosis, the treatment options and medications, and the subsequent possible side effects. This increase in responsibilities can be stressful for the caregiver and cause further fatigue. Galatians 6:9 is a helpful reminder to “not become weary in doing good, for at the proper time we will reap a harvest if we do not give up” (NIV). The caregiver chooses to stay and to serve out of love, which is such a beautiful picture of Christlikeness. God himself chooses a relationship with us and stays committed to us.
The caregiver and the patient eventually must come to an understanding of the new reality (after the diagnosis) along with its limitations. Comfort can be found in the apostle Paul’s struggles with his thorn in the flesh (see 2 Cor 12:7–10), how he begged God repeatedly to take it away, but how God promised him that his grace would be sufficient, and his power made perfect in weakness. Like Paul, we hold on to God’s purpose for weakness, even when we don’t know or understand it, so that Christ’s power may rest on us. For Christ’s sake we strive to delight in weaknesses and in limitations, knowing that when we are weak, then we are strong.
Oswald Chambers asks the following soul-searching question:
Which are the days that have furthered you most in the knowledge of God—the days of sunshine and peace and prosperity? Never! The days of adversity, the days of strain, the days of sudden surprises. . . . Any great calamity in the natural world—death, disease, bereavement—will awaken a man when nothing else would, and he is never the same again. We would never know the “treasures of darkness” if we were always in the place of placid security.[3]
This lesson of God’s strength in human weakness is just as true for the caregiver as it is for the patient. God’s grace is available for the caregiver who falls short, is impatient, or gets frustrated or exhausted or overwhelmed with the crushing circumstances and increased responsibilities of providing care. When caregivers feel overwhelmed with the fear of recurrence or sadness over the severity of the pain their loved one experiences, God’s strength is unwavering. When the caregiver feels helpless or fatigued because of the added responsibilities, God’s strength is abundant. When the caregiver is running interference and explaining to the many inquiring, concerned people the list of current maladies that are being faced and attempted remedies that are being implemented, God’s strength provides the grace and patience that is humanly lacking. Reflecting on Psalm 107:27–28, one poet writes, “Remember—at ‘Wit’s End Corner’ / The Burden-bearer stands / …But only at ‘Wit’s End Corner’ / Is the ‘God who is able’ proved.”[4] When the caregiver feels inadequate and at their wit’s end, it is there that God’s strength is made perfect in weakness.
Hope and Endurance
Part of a caregiver’s job is to point the patient toward hope, whether in physical recovery or the blessed hope of eternal life with our Lord. As people of faith, we ultimately place our hope in God, especially his goodness and ultimate plan. Even people without faith may acknowledge that “hope is an essential part of the human spirit. Hope is durable; it evolves and persists. It is also a powerful, highly motivating, and driving force. Hope can push you beyond your limits, vault you over obstacles, and thrust you beyond expectations. It can help you keep going when everything seems lost.”[5]
The endurance of hope (1 Thes 1:3) can be instilled in numerous ways. Some of the practices my husband and I employ during times of despair are reading/memorizing selected psalms, lamenting to God about our pain, listening to our playlist of songs that point our hearts back to Jesus,[6] praying together and reaching out to ask friends to pray, making a list of “Reasons to Fight” or of things we are thankful for, reading other’s reflections of God’s faithfulness in their seasons of suffering, and creating our own list of “God Sightings” throughout our time of suffering.
Caregiving and Godliness
Dr. Pantilat gives good advice to caregivers:
If you do become a caregiver, do your best and don’t blame yourself or feel guilty about anything you did or didn’t do. As with parenting, perfection is not required or possible, and good caregiving is great. As in all aspects of life, and certainly in all issues involving serious illness, there is no one “right way.” In order to live as well as possible with a serious condition, decisions about caregiving must be personalized. Find an approach that suits you and your family . . . Finally, remember that caregiving is stressful, whether provided by family and friends or professionals. Take breaks, recharge, and make sure to take care of yourself. A burned-out caregiver means that two people need help. Know your limits, get more help, and remember that caregiving is a marathon, not a sprint.[7]
As a person of faith, I would add the following advice for caregivers: be confident that God is caring for you constantly in much the same way that you are caring for the patient and that he can lift you up when you feel like you don’t have anything left to give. He wants to bear our burdens and walk this difficult path with us. As 1 Peter 5:6–7 states, “Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.”
One of the most incredible realizations through my personal experience with caregiving is that God is truly the ultimate caregiver and that our capacity to be caregivers is an aspect of being God’s image. His care for us can be seen when he willingly enters into a relationship where he is constantly needed. The loyalty that God has for people is an aspect of God’s character that humans express as they show loyalty and care for other people. God’s willingness to become human, to be a sacrifice for us through his death on the cross, and to resurrect the human body is the most amazing picture of caregiving. Many caregivers I know, while not capable of dying in the place of another, have willingly sacrificed their freedoms and comfort in order to focus on the needs of others.
The Christian caregiver has the additional benefit of knowing that their patient is God’s image and, as such, has intrinsic dignity and worth. “To recognize that others are created as God’s image should compel us to treat them with dignity.”[8] The work of a caregiver, while sometimes exhausting and frustrating, is life-giving work and pleases the Creator of the cosmos. We are like God when we provide care for others. As Carmen Imes so aptly states, “Our job is to ensure the flourishing of those around us.”[9]
God’s good care for us is multi-faceted and beyond comprehension. As the writer of Psalm 8:3–4 proclaims, “When I consider your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is mankind that you are mindful of them, human beings that you care for them?” Amazingly, God does care for us, and we, in turn, get to care for others. And through it all, we understand more of who God is and his tremendous love for us.
How does the church get involved in this God-ordained caregiving process? We were incredibly blessed to have a Christian community that rallied around us and was like a parachute for us as we were caught up in the storm of leukemia and blown off the cliff, facing new realities like the very real possibility of death or living a life that is cured of cancer but now exists with limitations and chronic pain. There were so many ways that our church family gave care to our family during this time. They donated blood, provided meals, helped transport our three young children, wrote encouraging messages to us, shared impactful songs with us, provided needed supplies like air purifiers and blankets, took care of house cleaning and yard work, purchased gas, food, and even massage gift cards, wore bracelets with Ken’s name as reminders to pray, hosted driveway welcome home celebrations when Ken was able to return home after a difficult round of treatment, shaved their heads in solidarity with Ken’s loss of hair, and there was even a retired pastor who came to sit with Ken almost everyday in order for me to get a break to shower and take a walk. These are just some of the ways that the church stood with us, locked arms, and helped ease the pain and trauma we were going through.
Our family also developed an immense appreciation for healthcare professionals. The nurses were encouraging and helpful. When Ken was about to receive his very first bag of chemo, we had a Christian nurse who encouraged our family to take a moment, lay hands on that bag of chemo, and pray together. We were thankful for her suggestion and felt God’s peace in an unexpected way as we surrendered the process of healing ultimately to him. Ken was diagnosed a week before our oldest daughter graduated from eighth grade and he was unable to attend her graduation because he was in the hospital being treated. His nurses found out about this and created a graduation party on the oncology floor, complete with décor and cake. It’s because of our firsthand experience with these amazing caregivers that the same eldest daughter (now in college) has become a CNA (certified nurse’s assistant) with the ultimate goal of being a nurse herself. Caregiving is powerful and important, and it is something we can all be actively involved with. God himself sets the example of caregiving and we are like him when we do the same for others.
References
[1] Steven Z. Pantilat, Life after the Diagnosis: Expert Advice for Living Well with Serious Illness for Patients and Caregivers (Boston, MA: Da Capo Press, 2017), 192.
[2] Pantilat, Life after the Diagnosis, 51.
[3] Oswald Chambers, The Philosophy of Sin: Studies in the Problems of Man’s Moral Life (London: Marshall, Morgan & Scott, 1937; repr., CrossReach, 2017), 31.
[4] See Mrs. Charles E. Cowman, Streams in the Desert, vol. 1 (Grand Rapids, MI: Zondervan, 1965), 167, May 23.
[5] Pantilat, Life after the Diagnosis, 153.
[6] See kway’s “Courage for the Battle” playlist on Spotify, https://open.spotify.com/playlist/152Dx8WwzoRA1r1qBmdZ3T.
[7] Pantilat, Life after the Diagnosis, 190.
[8] Carmen Joy Imes, Being God’s Image: Why Creation Still Matters (Downers Grove, IL: InterVarsity Press, 2023) 56.
[9] Imes, Being God’s Image, 57.