Breast Cancer

Caregivers Provide Selfless Service

When a loved one is diagnosed with breast cancer, it is a blow for everyone — the patient and her loved ones alike. The shock of the diagnosis, the treatment options, the myriad of decisions to be made and the potential changes to everyone’s future can be overwhelming. The caregivers, who are vital to their loved ones, often find that this new journey requires great sacrifice, but they routinely rise to the challenge.

“It’s a shock to find out that your loved one has been diagnosed with breast cancer. For many men caregivers in particular, they want to fix this problem, but it’s very frustrating for them because they cannot fix this,” Deborah Stewart, RN, BS, Breast Educator, Johns Hopkins Avon Foundation Breast Center, and breast cancer survivor, explained. “We encourage them that while they can’t always fix what’s happening, they do so much by just being there for their loved ones.

Caregivers can provide important assistance immediately by gathering information and doing research. Women now have multiple lines of therapy available, and patients may have to make numerous decisions, obtain a second opinion and digest a great deal of information in a short period of time.

In addition, a patient’s daily life can change dramatically once treatment begins. “There is a constellation of things that the caregiver has to do. They have to look at the practical aspects of providing care for their patient, may assist in taking care of children, managing finances, legal matters and all those sorts of things that the patient had previously done. And then of course, they have to handle the physical symptoms of what the patient is dealing with,” Phyddy Tacchi, RN, CNS, LMFT, LPC, Psychiatric Advanced Practice Nurse, MD Anderson Cancer Center, said.

Experts stress that communication is a key factor to successfully navigating the tasks and decisions involved in being a successful, and healthy caregiver. Good communication between the caregiver and a loved one undergoing treatment can aid in minimizing frustrations, and will go a long ways towards managing difficult emotions such as fear — for both the patient and the caregiver.

“Communication is so important — that the caregiver and the person with cancer understand each other and know where they are headed. There is so much to consider, starting with the physician, the caregiver, the family and the woman herself. Everyone needs to have an understanding of what is being accomplished and about how to approach treatment,” Stewart explained.

Managing Patient Needs During Treatment

Many women diagnosed with breast cancer experience shock at first and then grief at the loss of their “normal” lives — or even specifically with the potential loss of their breast(s), possible reconstruction and sexuality issues that accompany these changes. They might not understand — or are not ready to digest — the medical information associated with the diagnosis.

The caregiver is called upon to monitor physical symptoms, assist with side effects of medicine and provide emotional or psychological encouragement — often with no previous medical or counselor’s training. Tacchi indicated that the top three medical concerns most patients face are pain management, nausea/vomiting and fatigue.

“It is the tendency of caregivers to, at least initially, ‘overfunction’ for their patients in their enthusiasm to overcome cancer. The golden rule for caregivers: Don’t ever do for your patients what they are capable of doing for themselves. The caregiver must evaluate their loved one’s ability and willingness to participate in daily self-care, and begin to define their own role in the cancer experience,” Tacchi said.

Supporting the Caregiver

Many caregivers experience both physical and emotional fatigue, often neglecting their own needs for nutrition, adequate sleep, exercise and socializing with others. The toll that this stress takes on their health and well-being cannot be overstated. Caregiving carries many difficult emotions, such as fear, anger, sadness and worry. Caregivers frequently keep these feelings to themselves rather than burdening their patients.

“Monitoring the health of your loved one — and then helping them handle their fears as well as your own — can feel like an uphill battle. There is a yearning for normal, and to return to yesterday and life before cancer. To cope, it is imperative for caregivers to take time to care for themselves. Rather than thinking of this as selfish, research is showing us that self-care is medically necessary to keep yourself physically and mentally strong,” Tacchi said.

Offering support for caregivers is gaining more widespread attention, as research confirms the need for them to stay refreshed in order to best assist their loved ones. Many caregivers have to suspend their own lives for their loved ones, and report feeling isolated. Tacchi has compiled six self-care steps she recommends to all caregivers: Feed your body. Feed your mind. Feed your soul. Preserve your energy. Evaluate your priorities. Find your strength.

“When your loved one has cancer, it is often very lonely for both of you. For men caregivers in particular, they don’t realize that they need support too,” Stewart said. “We tell our caregivers that they cannot be afraid to talk about their difficulties, and to ask for help if they need it.”

Six Self-care Steps for Caregivers

  • Feed your body
  • Feed your mind
  • Feed your soul
  • Preserve your energy
  • Evaluate your priorities
  • Find your strength

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