Advice for carers of loved ones with cancer
Of all the nicknames we can imagine in our future — child, wife, parent, professional — hardly anyone would imagine having a caregiver on the list. But when loved ones are diagnosed with cancer, loved ones are often counted on to take on the role. The caregiver is an essential member of the cancer patient’s care team, yet the task comes without a job description, instruction manual, or set schedule, and most of those who take on this role have no prior experience. A caregiver often has multiple roles and may be tasked with looking after a variety of medical, emotional, and home needs, while also handling responsibilities such as coordinating and attending doctor’s appointments and treatments or completing and submitting insurance policies. No wonder exhaustion, exhaustion, and guilt for a caregiver are very real concerns, and anyone who embarks on the journey should be aware of what is in store for them.
Just as each patient’s cancer is unique, so are the physical and psychological side effects of dealing with the disease. But some feelings and challenges are universal, especially for caregivers.
“Cancer is a traumatic event for the whole family, not just the patient. It’s not like the flu where you see an end point. The most common emotions we see among caregivers are helplessness, anger, frustration, pain, guilt, anxiety, worry, and loneliness.
Often caregivers are so focused on the patient’s needs that they ignore their own. Experts say this is the most common and most worrying mistake caregivers can make. “Caregivers need to make sure they’re eating, getting enough sleep, and keeping up with their medical appointments, because they can’t help anyone if they’re sick,” Callahan says. “It’s like an emergency on a plane: When you lower the oxygen mask, you’re supposed to put the mask on first. As caregivers, we take care of everything a patient needs and forget about ourselves. It’s easier to focus on the outside than on the inside. It’s cliched, but I tell People all the time have to take deep breaths. It activates the diaphragm and forces you to focus on your breathing and relaxes your body. You can take 30 seconds out of this crazy day and breathe while you wait for the water to boil or when you’re at the red light or in the bathroom.”
She advises all caregivers to find a coping mechanism that works for them. If you find yourself feeling angry, for example, acknowledge it and learn how to deal with it, he suggests. Be aware, too, that many patients deal with their frustration with their caregivers. If this happens to you, try not to take it personally. “At this point, ask the patient if there is anything they need and then give them a little space,” he says. “When a caregiver is feeling overwhelmed, it’s okay to take a break.”
When Kathleen Fincham’s husband, Mike, was diagnosed with stage 4 colorectal cancer in 2013 at age 35, neither of them had any idea what to expect. The Fincham family had five young children, including a baby boy, and Mike Fincham supported the family, working long hours on his dairy farm in Northeast Kansas. Over the course of about two years, he underwent two surgeries, six months of chemotherapy, and spent more than three months in the hospital. Kathleen Fincham found herself struggling to take care of her husband while juggling motherhood and helping out on the dairy farm. While the Fincham family has been fortunate to have a lot of help from family and friends, Kathleen Fincham still had moments of feeling overwhelmed and apprehensive about an uncertain future with her husband. In her case, she was strengthened by strong faith in dark times.
“I have faith in my firm belief in the sovereignty of God and know that if this is the end of his life here on earth, we will not be able to control circumstances and that is not our job,” he recalls. “We told ourselves we would stay here as long as God wanted us here, and we had an eternal perspective. We were really at peace with that. We obviously expected more, and luckily it turned out that way.”
I also found it helpful to take some time each day to recharge by going for a run or reading her Bible. She knew she was not being hard on herself. “During Mike’s illness, I told myself it was okay if I didn’t keep up with everything like I did before,” she says. “I didn’t do much homeschooling that year, and the kids are fine.”
Robert Bloom, MD, a psychiatrist at the Chicago Hospital, echoes Kathleen Fincham’s sentiments, adding that it’s also helpful to forgive friends and family who may be oblivious to the physical and emotional cost of providing care. He and his wife, Judy, know firsthand the challenges of caring for a sick person. Blooms’ daughter Rachel, who was born with spina bifida, lived with her parents until her death in 2016, a few months before her 36th birthday.
“The main thing I’ve learned is that most people who aren’t in your shoes don’t understand how difficult it is,” Dr. Bloom says. “Care is a 24/7 responsibility and it can be very stressful. Right from the start, I’ve been advising everyone with three rules: Don’t feel sorry for yourself, don’t look down on yourself, and don’t compare yourself to others. Instead of judging, try to explain.”
For Judy Blume, talking to other parents of disabled children helped her come to terms with her special situation. She found a support group when Rachel was a little girl, and decades later, these people are still some of her best friends. “For me, meeting a group of friends with healthy 3-year-olds didn’t help,” she says. Find a group of like-minded people, both online and in person. I met a lot of people online and never met them in person, we sympathized and shared tips with them. Nobody understands this unless they are in your place.”
Jodi Bloom also saw a therapist to manage feelings of anger, depression, guilt, and resentment, all emotions common to caregivers. Learn to ask for and accept help. “At first, it was easier to get angry with someone for not offering them help than to ask them to do something, like go to the grocery store or make a meal,” she says. “Most people like to help someone if they are asked to.”
Here are some other tips doctors can follow to help relieve stress:
- Develop a support network, both online and in person. It is helpful to talk to other people in the same situation. If you can’t find a support group, ask a medical professional for recommendations.
- Be an advocate for the patient. Take your loved one to medical appointments. Do your research and ask questions that the patient cannot think of or are afraid to ask. Make sure to take notes.
- Be aware of your physical and mental health. Pay attention to your diet and take time to exercise. You will feel better and have more energy if you are healthy. If the patient is able to walk together or be pushed into a wheelchair. Chronic stress can affect physical health.
- Do things that are not part of your responsibilities as a caregiver: eat lunch with a friend, watch a movie, or pursue a hobby that you enjoy, such as drawing or reading.
- Forgive yourself. You are human and you will have days when you are short, moody, upset, or exhausted. let him go.
- Ask for help and accept help when it is offered. Most of us don’t feel comfortable relying on others, but your friends and loved ones may want to do something, but they may not know what you need. Keep a mental list of needs, such as meals, a walk, someone to do the shopping, sit with the patient while they take a break, or watch your children for a few hours.
- Encourage open communication with the patient that allows both of you to express concerns and concerns. Experts say patients and caregivers are often stuck in thinking they should be positive about the other person, but find it healing for both parties to talk about their feelings.
- Participation in activities with the patient not related to cancer. Play cards, a board game, or pop some popcorn and watch your favorite TV show.
- Go to national resources for caregivers that can help you throughout your journey. These include: