The Lives and Journeys of Cancer Caregivers

What Caregivers, Families, Friends, and Employers Need to Know

Photo credit: National Cancer Institute on Usplash.

An Unpaid and Untrained Lifeline

Are you a cancer caregiver? Do you know a cancer caregiver? My experience as a cancer caregiver inspired me to learn from other cancer caregivers about their journey. Cancer caregivers consist of spouses, partners, children, grandchildren, relatives, friends, and neighbors. Many cancer patients have more than one caregiver.

According to the American Cancer Society (ACS), close to 1.9 million new cases of cancer will be diagnosed in 2021, and more than 600,000 people will die. A 2018 report from ASCO (American Society of Clinical Oncologists) indicates that the number of cancer caregivers in the U.S. ranges from an astonishing 2.8 to 6.1 million, with caregivers providing an average of almost 33 hours a week to care for their loved ones tackling cancer. A 2016 report by the National Alliance for Caregiving indicates that the majority of cancer caregivers are women (58%). The age of cancer caregivers range from age 18 - 88, and the median age is 52.

The American Cancer Society defines cancer caregiver as “the person who most often helps the person with cancer and is not paid to do so. In most cases, the main (primary) caregiver is a spouse, partner, parent, or an adult child. When family is not around, close friends, co-workers, or neighbors may fill this role. The caregiver has a key role in the patient’s care.” Cancer caregivers are the unpaid and untrained lifeline of the cancer patient.

In this article, I want to bring awareness to the journey, experiences, and lives of cancer caregivers, not only from my perspective but from the perspective of other caregivers. Cancer caregiving is not just about taking a loved one to appointments, sitting in the waiting room, being by their side during chemo treatments, or sleeping in a chair overnight next to the hospital bed where your loved one is lying in post-surgery.

Through the lens of four caregivers, I hope to increase awareness about, and an appreciation for the physically, mentally, and emotionally draining, but also rewarding journey that is caregiving.

I interviewed four cancer caregivers, the youngest age 39 and the oldest age 52. All shared their experiences related to how their lives changed when they became caregivers, their caregiving responsibilities, the highs/lows of caregiving, self-care, physical and mental health. They offer advice to those who become caregivers, and advice to the friends, families, co-workers, and employers of those on their caregiving journey.

Lifestyle Disruptions

The lives of cancer caregivers are changed in many ways when a loved one gets a cancer diagnosis. They take on new responsibilities. Lifestyles and work schedules are interrupted.

“Our lifestyle changed,” said Diane, 45, a hospital x-ray technician from New Jersey, and mother to Parker age 14, and Kaleigh age 11. Her husband Ron John was 46 when he died in 2020 after being diagnosed in 2017 with stage IV colon cancer that metastasized. To help her accommodate and attend to her husband’s chemotherapy treatments and other appointments, Diane had to request work schedule changes.

Photo courtesy of Diane Koczon

Not only do work schedules change but so does seeking more work hours while taking on the responsibility of caring for a family member diagnosed with cancer. Taking on additional work hours or a new job for financial reasons is not uncommon. Research shows that caregivers either have to quit a paying job, take an extended leave, or take on another job.

Danielle, 39, a coach and fitness instructor from Massachusetts, and mother to 10-year-old Grace, took on a new job as she cared for her husband Mike, after he was diagnosed with rectal cancer that metastasized to his liver almost two years ago. “I took on a different job for health benefits and to increase my salary.”

While some caregivers need to find employment that pays more and offers better health benefits, others will need to request an unpaid leave of absence that can impact their income.

To care for her 91-year-old grandmother Charlotte, suffering from stage IV lung cancer and receiving palliative care in her home, Anita, 52, a domestic violence and breast cancer survivor, worked two jobs. She was able to maintain her full-time state government job and to work remotely during Covid. Anita adds, “I took a leave of absence from my part-time job at the local running store. I am fortunate I still have a paycheck coming in.”

In addition to making unexpected changes in employment and work schedules, some caregivers have no option but to relocate or change their life plans. Anita had to move from

Northern California to care for her grandmother in Southern California. Others are suddenly uprooted.

Andrea had to change her plans in order to take care of her father Eric, who had been suffering for many years from stomach cancer. “I was traveling in Thailand when I got an email from my dad that said that he probably only had four months or so left to live. I left the country immediately and flew home, and lived with my dad full-time until he passed,” said Andrea, 47, a book designer from Canada.

Cancer Caregiving Responsibilities

Changes in employment and work schedules, and relocating are only some of the many disruptions and changes that come with the many never-ending caregiving responsibilities. These include, but are not limited to, communicating with the patient’s doctors, accompanying the patient to chemotherapy, radiation, surgery appointments or the doctor's office for a second opinion, home care, paying the medical and hospital bills, managing insurance claims, and spending hours on the phone battling for insurance approvals. But there are other duties that can’t be ignored or put on the back burner.

As Diane points out, “taking care of children, children’s school activities, and house needs,” are responsibilities that do not cease with a cancer diagnosis. Diane had to manage Ron John’s pain and needs, while working and attending to their children’s school schedules and activities.

Danielle's other responsibilities include "getting second opinions and doing errands when my husband is undergoing chemo or recovering from surgery.” In addition to communicating with her grandmother’s doctors and accompanying her to appointments, Anita had a big responsibility for which she received no training. She shared, “I learned to drain her lung, a medical procedure.”

“I took him to appointments, picked up his medicine, helped him at home, kept him company, called the ambulance when he fell off the toilet, made arrangements when he became palliative, and helped arrange everything after he passed,” recalled Andrea. Caregiving responsibilities do not end after a loved one has succumbed to cancer.

Low and High Moments

Caregiving is challenging and difficult. There are low moments. For Anita, the family dynamics proved to be a low moment as she cared for her grandmother. Anita took care of her grandmother during the day but when her aunt, who used to take care of Charlotte at night, took on a night job, there was a gap in her grandmother’s care. “My mom explained that my aunt wasn’t ready to be a caregiver and needed an excuse,” said Anita.

The American Cancer Society points out that caregiving is “frustrating and painful.” The caregiver will become aware of their “severe sadness and emotional distress” and will feel overwhelmed. Some do not want to be caregivers because they feel unprepared and unqualified to cope with the new responsibilities and the feelings that accompany caregiving.

Sometimes different family members and friends offer unrealistic approaches to the patient's diagnosis as they cope with the situation. This can make it very challenging for the patient and caregiver to navigate. Andrea shared that her Oma and family friends thought if her Dad took shark's cartilage, he would be fine. "It was hard for me and my Dad to navigate that. One of the hardest parts for me was being bombarded by all the distress and dysfunction that was swirling around me," said Andrea.

For Andrea, the lowest moment was when her father fell off the toilet. “It was a lot for me to handle all by myself.” However, caring for her father was a gift. “Spending a lot of time with my father was very special. I remember feeling that my priorities were very clear and crystalized around care, love, and kindness.”

Photo courtesy of Andrea Schmidt

But there are high moments caregivers cherish. For Diane, one of the high moments of caregiving was when Ron John was feeling better. “We were able to do things as a family, go to the beach or go fishing. The lows were when he wasn’t feeling well.”

Danielle shared that doing anything to contribute to her husband’s health and well- being was a positive in her journey.

Self-care

A research report by the the National Alliance for Caregiving, in partnership with the National Cancer Institute and the Cancer Support Community, points out that cancer caregiving is intense, demanding, and results in high levels of emotional, physical, and financial stress.

Self-care needs to be a priority for cancer caregivers. An unhealthy caregiver is good to no one. Feeling frustrated, stressed, anxious, and depressed are par for the course but managing and reducing these experiences is vital.

Research shows that self-care is important to help caregivers cope. Daily Caring, a caregiver website recommends cancer caregivers set limits so they don’t feel so overwhelmed and trapped. They should turn to social workers and counselors at the hospital where their loved one is receiving treatment. Caregivers should not do everything by themselves. They should join a local or online support group. They must take time out for themselves, and do things to take their mind off cancer and caregiving duties. However, some caregivers may be too overwhelmed with caregiving and other responsibilities that there is no time to take care of themselves.

“Self-care was not a priority. I had no time to care for myself. My time to myself was my ride to work in the morning. On the way home, I was making calls for my husband or my children,” shared Diane. Self-care was also not a priority for Andrea. Consequently, depression set in and old habits returned. “Because so much was out of my control, I was in a daze of action and errands. I was probably in a bit of a depression and my addictions were in full blast, for example, smoking,” said Andrea.

When Danielle’s husband Mike was diagnosed with cancer, he went on disability. “I had to take on greater responsibility at work in order to help sustain our family and home.” Danielle’s tasks increased tenfold. Filled with periods of stress, she continued to manage and was able to care for herself.

Danielle got acupuncture, and free counseling at the hospital her husband was receiving treatment. “I sought counseling that I am incredibly grateful for. It was incredibly instrumental in my mental well-being during the toughest periods of care.”

While caring for her grandmother, Anita also took time out for herself. She partook in yoga on Zoom, and meditation. She ran on the beach. “It was incredible to hear the waves and see the surfers, cyclists, walkers and lots of dogs. The beach was full of life. I felt recharged when I was there,” recalled Anita. “Self -care was a priority." She trained for her next race. “Training for a 12-hour race kept me motivated.” Anita completed the Jackpot 12-hour ultramarathon, her last race before Charlotte passed.

Photo courtesy of Anita Hagen

No doubt self-care is important to maintain good physical and mental health, both of which are negatively impacted by the demands of caregiving. Caregiving is a heavy load. It’s physically and mentally draining. Depression, isolation, and anxiety can set in.

Mental Health

Andrea shared her mental health suffered but added, “I am stronger for having experienced this. It was a heavy burden but I will never regret it. It made me more resilient. At the time I felt a bit depressed though, but I had a lot of support and I got through it.” Anita shared her mental health also suffered but her mother was there for her.

Diane’s mental and physical health suffered. “Both suffered but you find a way to keep stable. Mentally, I would focus on work. When I got home, I would focus on my husband and kids. I told myself this is just how it has to be. Physically, it was draining. I just ended up doing what I needed to, and all the small stuff waited,” said Diane. “I managed to cope well. Once I realized that this was reality, I kept this in perspective. Each day was a blessing with him.”

Danielle turned to a meditation app, scripture, and prayer to help her cope with the physical and mental suffering that comes with caregiving and witnessing her husband endure so much. “I experienced periods of great anxiety during the toughest moments. Surgeries, incredibly hard to witness treatment after-effects, scanxiety, and fear of the what ifs. I work on managing all of this now through a meditation app I love called HeadSpace. But most of all, I read scripture and set aside prayer time daily at least ten to thirty minutes daily depending on the time I have.” Danielle added that joining Facebook support groups for colon cancer survivors and caregivers has been instrumental in helping her to cope.

Photo courtesy of Danielle Rogers

While it’s not uncommon for cancer caregivers to feel isolated and to join support groups, experiencing isolation or joining a support group was not shared by all.

Andrea said, “I talked to my friends. I sometimes felt isolated but at that point in my life I was learning to enjoy my own company, so it was ok.”

“My mother, cousins, and friends were a great comfort,” said Anita. This was her support group.

“I did not join a support group. I had family and friends to talk with. I did not feel isolated or alone. I had no time to feel that way. I had my children to take care of,” said Diane.

Danielle joined support groups on Facebook and did not fee isolated. She received support from her closest family, friends, and neighbors. “I have not felt isolated thankfully.”

Advice

As previously mentioned, the number of cancer caregivers in the US ranges from about 3 million to over 6 million. Each will have a different experience as a caregiver. Unless they are caring for someone tackling cancer, friends, family, co-workers, and employers might not be aware of the responsibilities and challenges that come with the caregiving journey.

“I’m doing the best that I can, and somedays it’s incredibly challenging to manage work, family, caretaking, and all he responsibilities,” said Danielle. She appreciates friends and family calling and offering to help. “It means the world to me.” Danielle added that employers should also check in on their employees who are caregivers. “Ask how they are managing and if they need any extra support or even if they could use a personal day, especially after an intense and challenging work week.” Anita, was grateful she was allowed to take time off from work.

Making decisions is an overwhelming task for caregivers because, as Diane pointed out, “Your life has changed forever. You will never be the same person you were before.” For her it was important for others to giver her space when she didn’t feel like talking but to continue to call and visit once in a while.

Diane, Danielle, Anita, and Andrea, like all caregivers, never imagined their loved one would receive a cancer diagnosis, and that they would be thrusted into the role of caregiver. As past and present cancer caregivers, they have experiences to share, and especially with others who might become caregivers.

Andrea advices the practice of self-compassion. “Exercise, meditate, talk, cry, take care of yourself. Don’t bottle it all in or “numb out” too much for too long.” Caring for a loved one is a “super intense, unique experience, and should be treated as special.” Her father’s cancer journey and her role as caregiver impacted Andrea in a positive way. “Looking back, it was incredibly valuable to my life path to have this example of a person who was not scared to die. That was the biggest gift to me. He was very religious and confident and he trusted he had influenced me greatly,” said Andrea.

Anita’s advice is to practice self-care and to be proactive. “You need to take care of you. Eat, hydrate, and get some vitamin D. Write things down, have a calendar, take notes, and ask questions. Be the advocate for your loved one.”

Diane advices prioritizing, setting small goals, and practicing ways to relax. “Take it one step at a time, one day at a time. When you first find out that a family member has cancer, you are on a mission to do research and everything you can to conquer cancer. You think you can do everything.” She recommends listening to music and meditating. “Even if it’s just for a five minutes. It helps relax your mind and resets your body.” Diane added, “Every cancer is different. Some cancers are curable. Others are not. What ever the prognosis, it is a challenging time.”

Danielle points to faith, leaning on others, and caring for your mental health. “Lean on your people and your faith. Don’t feel ashamed, embarrassed, or a burden. Prioritize your mental health as it is the foothold of your ability to get through a very difficult and challenging season. Have grace and know that God is taking special care of you and your family as you connect with Him daily and ask for support. Accept their help and it will lighten your load greatly. You can’t do this alone.”

These cancer caregivers have shared their personal experiences and perspectives. In their journey as past or present caregivers, they have remained resilient. Their stories resonated with mine.

In 2018, I became my husband’s caregiver when at age 58, Jon was diagnosed with stage IV rectal cancer that metastasized to his right lung. At the time, I was not working. I was able to be his full-time appointment secretary, and to be by his side at all his chemo and radiation treatments, doctor's appointments, and surgeries.

I became his advocate and communicated with his oncologists and surgeons via phone, email, and in-person. In the process, I witnessed Jon experience terrible pain. He wasn't able to eat. We didn't eat our meals together. I was overwhelmed.

Our adult children live far and have their work, career, and families. I felt alone and isolated. This feeling is confirmed by research that shows that with cancer caregiving comes feelings of isolation.

For my sanity and respite, and to earn money as we tackled the high cost of insurance premiums and the higher cost of cancer treatment and care, I looked for a position as an adjunct professor of religion studies, and was fortunate to be hired to teach two sections of Spirituality and Healing. It was the respite I needed to feel normal, lift my spirits, and to take a break from my unexpected role and draining journey as a caregiver in search of healing.

Like Diane, I researched everything about Jon's cancer, and took it one day at a time. Like Danielle, I turned to my faith and scripture. Like Anita, I ran. I ran three ultramarathons, and Jon, who never missed a day of work during his chemo and aggressive radiation treatments, except during his surgeries, crewed me at each one. Like Andrea, I cried and practiced self-compassion.

I read a lot about cancer caregiving and learned many things on the National Cancer Institute website including being prepared for not getting help from friends and family. They are coping with their own problems and responsibilities, may not have the time to help, are afraid of cancer, or don't know how to express they care. But I was blessed to have the support and prayers of four girlfriends, three of them also cancer caregivers at the time. One offered to handle matters pro-bono if Jon ever needed to apply for disability. They checked in on me daily and weekly via email and text, and I checked in on them. Their presence helped to lessen my feelings of isolation.

I also learned to keep up my routine, to keep doing what I love, to see a counselor, to join a support group, and to journal. After a long search, I found a local chapter of the Well Spouse Association support group. I attended meetings the first Thursday of every month for almost two years until Jon was declared in remission in 2020 during the pandemic.

Selfie by Jon

A year after his diagnosis, I discovered the counseling office in the hospital while Jon was

an inpatient. Every other Wednesday during his chemo infusions, I went to free counseling to help me process how I was feeling and the uncertainty of the future. I only wish this service was made known to me in the cancer patient welcome packet on the day Jon had his first appointment with the oncologist.

I kept a journal of the good and bad days, and how I was feeling. I also wrote to educate cancer caregivers. I wrote an article about the cancer caregiver to-do list, and wrote an article titled Life of a Cancer Caregiver. It was published and curated on Medium.

Resilient Cancer Caregivers

Cancer patients and their caregivers cannot not know the future. Some cancer patients will not survive. Some will be in remission, but worry about the future - what if it comes back. Others will survive and thrive.

But what is certain is that they will always have a lifeline on their cancer journey. That lifeline is their overwhelmed caregiver in the form of a spouse, partner, parent, child, friend, or neighbor, who will endure challenges as they try to figure out how to navigate the demanding twists and turns of caregiving.

While research on the resiliency of family cancer caregiving is scant, research suggests that most cancer caregivers caring for family with advanced cancer "undergo a resilient process throughout the caregiving period." The caregivers interviewed for this article are certainly resilient. They have taught us many lessons.

If you know a cancer caregiver, ask them how they are doing. If they have children, ask about them. They are caregivers, too. Both must not be forgotten.

© 2021

Do you know a cancer caregiver? Nominate them to be a recipient of Ultra Care for Cancer Caregivers. For more information, contact me.

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Read my most recent article, Cancer Did Not Cancel Our Plans , published in Cancer Today magazine.