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Metastatic Breast Cancer
Caregiving – A Challenging, but Rewarding Job
When a loved one is diagnosed with metastatic breast cancer, it is a blow for the patient and caregiver alike. Whether it is recurrent disease or a late-stage diagnosis, the treatment information, emotions and myriad of responsibilities that come with this news can be overwhelming. Caregivers, however, are vital to the lives of their loved ones living with cancer and routinely rise to this challenge, which often requires great sacrifice.
“Cancer is a rude wake-up call to how vulnerable we all are. Never is this more acute than when metastatic or recurrent disease happens. What we hope for as a caregiver may change during the cancer trajectory experience. With recurrent metastatic cancer, for example, you may hope for less suffering,” said Phyddy Tacchi, RN, CNS, LMFT, LPC, Psychiatric Advanced Practice Nurse, M. D. Anderson Cancer Center. “We all want our loved ones to live longer, but that might not necessarily be a reality. We all must train our minds to look for ways to truly treasure this day. For example, place your hand on your patient’s chest and memorize their heartbeat with your fingertips… and be grateful.”
Metastatic breast cancer treatments have improved significantly in the past decade and women (as well as men — although they represent less than 1% of all metastatic breast cancer diagnoses) are living longer with the disease. There are multiple lines of therapy now available, with oncologists offering highly individualized plans for patients. Because of these innovations, the onset of metastatic breast disease may involve a steep learning curve for both you as the caregiver and your loved one.
Experts stress that communication is a key factor to successfully navigating the tasks and decisions involved in a chronic disease such as metastatic breast cancer. Healthy communication between the caregiver and a loved one living with cancer can aid in minimizing frustrations and will go a long ways toward managing difficult emotions such as fear — for both the patient and the caregiver.
“Communication is so important — that the caregiver and the person living with cancer understand each other and know where they are headed. There is so much to consider, starting with the physician and including the family, the caregiver and the woman herself,” explained Deborah Stewart, RN, BS, Breast Educator, Johns Hopkins Avon Foundation Breast Center, and breast cancer survivor.
“What is it that the woman really wants? What are her treatment options? Does she want to opt for quality of life over quantity? Everyone needs to have an understanding of what is being accomplished, about how to approach treatment, how long to continue treatment, and when to stop.”
Medical Needs
“It’s a shock to find out that your loved one has progression of disease,” Stewart continued. “It’s a whole different perspective because now your loved one will live the rest of her life on treatment. She is now living with cancer.”
For many women diagnosed with metastatic breast cancer, they may be experiencing grief or shock that their disease has advanced. They might not understand — or are not ready to digest — the medical information associated with the diagnosis. Caregivers are often relied upon to help interpret treatment options and manage physical symptoms — with no previous medical training. It may be difficult to ask questions of experts, but doctors, nurses, and pharmacists, as well as reputable cancer education Web sites, are all helpful resources for information. Clinical trials are also of special interest to women living with metastatic disease, and caregivers can assist in this area by speaking with doctors and researching potentially available trials.
“There is a constellation of tasks that the caregiver has to do. They have to look at the practical and emotional aspects of providing care for their patients,” Tacchi explained. “Included in this is managing the side effects of medicine and other attendant medical problems — primarily pain management, nausea/vomiting and fatigue. Those are the top three medical concerns that most patients are dealing with, and by association — so is the caregiver.”
Practical Life
Once a treatment decision has been made, it can be hectic going to appointments and starting therapy, and it is frequently a highly emotional or fearful time. Additionally, the patient may have significant side effects, and a caregiver must assume many of the jobs formerly done by the patient.
“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.
“It is not uncommon for a caregiver to operate under the belief that ‘If I just work hard enough and long enough, I can keep my loved one alive.’ This fever-pitch activity can become emotionally and physically exhausting. A caregiver does not have the power to keep their loved one alive, but rather a more realistic goal may be to keep their loved one comfortable. A confident caregiver is one who can identify, build and use their strengths in service to their loved one.”
Caregivers are regularly confronted with a lengthy list of practical life issues that have to be managed. Financial management such as paying for expensive medications and monitoring insurance coverage becomes an important issue. Providing transportation to appointments, interfacing with the medical team, managing the home, informing family members, delegating tasks and accepting help are but a few of the numerous tasks that caregivers assume. Toward the end of your loved one’s life, decisions will need to be made regarding home health, palliative care and hospice. Cancer treatment and medical centers have beneficial resources, including oncology social workers and financial counselors. For insurance issues, case managers at your specific company may be able to provide important assistance. Caregivers may need supportive friends and family, a support group or even professional counseling to help them share frustrations and find solutions.
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 underestimated. While caregiving may bring the benefit of greater closeness with a loved one living with cancer, it will likely be the hardest job you ever do. Caregiving carries many difficult emotions, such as fear, anger, sadness, and worry. Caregivers frequently keep these feelings to themselves rather than burdening their patients. Open communication, although difficult, may actually lighten the load for both.
This is particularly true when caring for a loved one with recurrent metastatic disease. “‘Been there. Done that. And here it is all over again.’ I sometimes call this extreme caregiving. 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, 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. Many cancer centers offer support groups or educational programs, and there are outstanding resources on the Internet.
“When your loved one has metastatic disease, it is often very lonely for both of you. For men caregivers in particular, they don’t realize that they need support too – and we tell them they cannot be afraid to ask for help,” Stewart said. “The men tell us they are frustrated because they can’t ‘fix’ this. 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.”
SIDEBAR: Tacchi has compiled six self-care steps she recommends to all caregivers:
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1. Feed your body.
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2. Feed your mind.
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3. Feed your soul.
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4. Preserve your energy.
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5. Evaluate your priorities./li>
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6. Find your strength.
Additional Sources of Information
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