Summary: Caregiving for cancer patients and the terminally ill is a stressful job that takes a fast toll on any caregiver, whether partner, family member, or friend. While most of the focus is generally on the patient and bringing them back to life free of disease and illness, the caregiver is often forgotten in the chaos. Caregivers needs just as much care, attention, and stress relief as the patient- sometimes even more. Caregivers are responsible for the life, medical care and treatment of another human, and that in itself is a heavy task. If you have or know a person who is proving care for another ill human in their lives, take action to help them and make sure they have what they need to stay physically, mentally and emotionally fit during this trying time.
One of the most trying and overwhelming jobs on the planet is being a caregiver or partner of a cancer patient. In today’s world of shorter hospital stays and the shift towards outpatient care and treatment puts a lot of strain on to the caregiver, and patient. While rapid advances in our cancer treatment and understanding have improved the ability to wholly heal and enhance survival rates, cancer is now considered more of a chronic illness than a life-limiting killer. When cancer arises in patients and their caregivers’ lives, it is usually unexpected, leaving the pair with no choice but to step up for battle.
Due to the changes in medical care and shortened hospital stays, this has increased the burden on caregivers to take care of the patient, while often neglecting their own needs in the process. The rising rates and statistics of those providing care for patients with cancer ranges from 2.8 million to 6.1 million adult individuals, which average nearly forty-hours of care per week (NaFC). Not only do these caregivers use their time but, in many cases, they also contribute funds and help to pay for certain costs associated with caregiving (ACS). Twenty-five percent of caregivers also make long-term employment changes to accommodate their new caregiving responsibilities (ACS).
The Negative Side of Caregiving
While many people may think that a family member is willing to care for a sick patient, simply because they are family, they may be wrong. The uncompensated care, time cost and energy depletion is simply too much for some to even consider taking on. In some cases, the main breadwinner of the family is forced to choose between caring for their partner and family and abandoning their job, or staying at the job to support the family, and hiring outside help for their patient.
Caregiving increases risks for psychological things like anxiety, depression, and hopelessness. Physical ailments which can affect the caregiver include poor sleep quality, poor immune function, cardiovascular disease, and increased risk for autoimmune disease (ACS/NaFC). Studies done by ACOS have shown the rates of depression in caregivers rises between twelve and fifty-nine percent, and the rates of anxiety grow to thirty to fifty-percent. Seventy-six percent of caregivers also report that insomnia became a steady part of their lives while taking care of their cancer patient. Constant caregiving for those cancer patients who face a grim or troublesome outcome can also hinder the grieving process, furthering mental incapacity after their patient’s possible death.
Additionally, the caregiver burden has the potential to negatively affect the quality of care the patient is receiving from the caregiver. Studies done show that caregivers who have been diagnosed with depression and anxiety have more patient reports filed for distress and inappropriate care. These caregivers have also reported feeling aggression, which in some unfortunate cases, was then taken out on their patient.
Why We need to Support our Caregivers
Caregivers, whether family members, friends, or the spouse or partner of the patient, need a great deal of support in a myriad of ways. Recent studies done on caregivers have shown that further education before beginning the caregiving process in regard to psychoeducation, problem-solving skills, and cognitive behavior therapy can help ready them for the heavy, and at times, burdensome task of providing care for their loved one. This type of caregiver treatment has shown to improve the caregivers’ skills with self-efficacy, confidence in their role, and the ability to navigate and guide their patient through prolonged or intense challenges they may face.
Short term therapies or things that could help a caregiver, and allow them to experience, while taking a break for caring for their patient are:
- Yoga or Meditational classes that can help them focus on themselves and mental clarity.
- Being relieved for a few hours a week to experience or live their own passions or hobbies so they do not lose sight of their own wants and needs in life.
- Therapy and support groups with other caregivers, which allow the sharing of feelings that many can relate to and experience daily.
- Assistance and help with the smaller tasks like laundry, house cleaning, or meal preparation.
- Learn to watch for the signs of distress, which usually begin with the key phrase, “It’s fine.” Or “I’m fine.”
- Listen more, talk less. The stressed-out caregiver is most often in dire need of adult conversation that is not solely medical related, or about the daily happenings between them and their patient.
- Facilitate and organize a help wagon specifically for the caregiver. This means asking them which tasks need done, making a list, and grouping together like-minded and helpful individuals to get it done.
- Offer help when it comes time to research treatments or cancers. Allowing others to help and see what things are truly like can make it easier for others to empathize and offer help in the ways that the caregiver most needs it.
If you know a caregiver who is struggling with the process and themselves, reach out to them and offer a shoulder, assistance with themselves, or how you can help with their patient. Caregivers are some of the most important people on the planet, as it is usually them informing the doctor of issues, new sickness, or distressing side effects and issues from their cancer. Doctors and nursing staff rely on caregivers to be at the tip top of their game but cannot offer assistance until they are made aware of the stress, or distressed caregiver. More broadly, as health-care professionals supporting families facing cancer, we must press strongly and advocate for policies that broadly acknowledge caregiver burden as a national health-care issue as well as continue to encourage a paradigm shift from patient-centered to family-centered care.
The ASCO Post
National Alliance for Caregiving
National Alliance for Caregiving: Cancer caregiving in the U.S.: An intense, episodic, and challenging care experience. 2016. Accessed August 16, 2018.