The Role of the Caregiver

“When someone has cancer, the whole family & everyone who loves them does too.” – Unknown

Nearly two million people will be diagnosed with cancer in the United States this year. Each one of these individuals is a daughter or a son, a father or a mother, a sister or a brother, a grandfather or a grandmother, or a friend. 

The diagnosis is shocking. It is scary. There is so much unknown. The journey could be long. It could be arduous. It will be physically and emotionally taxing. And all of this can impact not just the patient, but also their caregivers and support circle.

One study found that the distress experienced by spouses prior to and after surgery for cancer was comparable to that of the patients going through the surgery. In fact, prior to the patient’s discharge, the distress experienced by the spouse was actually higher than that of the patient.1

Other studies have shown that caregivers of chronically ill patients have an increased risk of illness2 and increased risk of negative psychiatric symptoms3.

The symptoms and impact of caregiving can manifest through a disrupted schedule, financial problems, lack of family and social support, loss of physical strength, and a drop in self-esteem among other areas.

Despite all these risks, partners are often less likely than clinical or informal caregivers to receive mental and social support and certainly less likely than the patients themselves.

For all these reasons, it is important for caregivers to be cognizant of their mental and physical state as their mood and outlook can actually impact the outcome for the patient.

At Oklahoma Proton Center we proactively work with spouses and other caregivers such as parents or children to help provide them with the support and resources they need. This support comes in multiple areas:

Mental Health – The role of mental health for the patient and caregiver is extremely important. The stress of the diagnosis, treatment process and caregiving process can negatively impact mental health. 

The nurses, navigators, and physicians at Oklahoma Proton Center are capable of and often provide informal counseling and mental health support for patients and their caregivers. If a patient or caregiver needs more formal support the care team at Oklahoma Proton Center can connect patients and caregivers with trained professionals who can provide mental health counseling and support. 

This includes through organizations such as Project31 and the American Cancer Society, and through private appointments with counselors or psychiatrists.

We have seen many patients and caregivers seek out this informal and formal assistance and it can often be the difference between a successful treatment process and one that results in long-term damage to relationships such as marriages, that of children and their parents, and other important relationships.

Financial Assistance – Cancer treatment can be expensive. This places a heavy burden on patients and their caregivers. This can be exacerbated if the patient or caretaker is forced to take time off work. 

Oklahoma Proton Center is a not-for-profit facility that offers charitable assistance for patients in need. This can help offset the financial burden of treatment. Additionally, the Proton Pals Foundation, a partner of Oklahoma Proton Center, provides assistance with costs associated with travel, housing, and social support services that may not be covered by insurance.

Community and Social Support – It is very important for patients and caregivers to find a support community through treatment. This can come from friends or extended family. But often the best support comes from other patients and caregivers going through the treatment process. Patients do better clinically when they have a strong social support system during and after treatment.

Oklahoma Proton Center provides activities and opportunities for this interaction and support. These include a bi-weekly graduation luncheon, a weekly patient dine-around, a new patient orientation, and other informal functions throughout the week.

“Cancer cannot cripple love, cannot shatter hope, cannot conquer the spirit.” – Unknown

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Cancer is a disease that first and foremost impacts the patient. Hearing those words, “you have cancer” can often be the most devastating thing a person has heard in their life. The response at that point can take different forms. Flight. Fight. Fright.

Cancer impacts the caregivers of that patient too and they can have similar diverse responses. Flight. Fight. Fright.

At Oklahoma Proton Center we want patients to know that we will be there for each and every one of them – that we are there to support them physically, emotionally, and mentally. But we also want the caregivers to know that we understand what they are going through and want them to know we are there to support them in the same way.

Cancer may have started the fight, but as a team – the patient, the caregivers, the clinical staff, and doctors – we will fight the disease and fight the effects of the disease so that cancer is just a chapter in a life story, not the whole story.

1. M T Oberst, D W Scott. Post discharge distress in surgically treated cancer patients and their spouses. 1988. Res Nurs HealthAug; 11(4): 223-33.

2. L K George, L P Gwyther. Caregiver well-being: A multidimensional examination of family caregivers of demented adults. 1986. The Gerontologist 26: 253-259

3. R Schulz, P Visintainer. G M Williamson. Psychiatric and physical morbidity effects of caregiving. 1990. Journal of Gerontology: Psychological Sciences 45: P181-P191.

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