Debi Boyle M.S.N., R.N., A.O.C.N.S., F.A.A.N.

This is not a commentary about a nurse becoming a patient. Rather, it is a narrative depicting firsthand experiences of joining the ranks of “unknown soldiers” — caregivers.

Families are pseudo doctors and nurses. They are expected to be proficient in administering medications, overseeing and using medical equipment, recognizing side effects, do dressing and wound care, care for tubes and drains, be a dietician, physical therapist and counselor, all with no training and support for assuming these foreign roles. Additionally, they provide basic personal care, assist with their loved one’s navigation around their home, arrange and attend medical appointments, participate in treatment decisions and advocate with health care and insurance providers.

Family caregivers leave the hospital setting following a cursory review of home care expectations rendered in a context of heightened anxiety and worry. They are given a list of printed instructions, a handful of prescriptions and a date to return to their primary physician’s office. Classes are not offered on how to move, turn, medicate and evaluate their loved one. I have repeatedly asked myself: how does a lay family caregiver with no medical training do this ominous job in the absence of teaching and ongoing support?

While the role of family caregiver is one with potential life-threatening implications, we pay more attention to teaching high school students how to apply for college and teenagers how to drive a car. This educational deficit in health care will only grow in importance as the “Silver Tsunami” (the aging population) escalates in the near future. Family caregivers will then be faced with considerably more responsibilities as fewer siblings will be available to share the demands of caregiving, life expectancy lengthens and the prominence of divorce results in adult children being expected to provide care to multiple sets of ill or frail elderly family members.

Particularly stressful are those critical times of transition such as moving from the hospital to one’s home or from the specialist’s office to hospice care. A recent study documented the differences between the uncertainty associated with these realignments when it was handled optimally and when its management was substandard. Those lacking necessary support reported feeling like they were abandoned in the wilderness, experienced profound anxiety and a sense of desertion which resulted in inefficient care delivery, family conflict, delayed patient recovery and avoidable health care system use. Caregivers also reported an overwhelming sense of fear of inadvertently doing harm to their loved one.

I have stepped over to the opposite side of the bed on several occasions and found this new caregiving world both frightening and overpowering. These responses evolved despite my decades of nursing tenure. I got confused about my husband’s medications, forgot within minutes what the physician just told me and was constantly frustrated about the sparse amount of time allocated to my needs for information and instruction. When my husband’s care transitioned to hospice home care, I asked myself if could I trust them? Will this new team know the specifics of my husband’s needs and will they be there for us like the office staff were? The angst of abandonment was profound at a time when I knew my husband’s days were limited.

Over my four decades of oncology nursing practice, I can still vividly recall two oncologists’ commentary after returning from out of state to care for their elderly, acutely ill parents. They were mortified at how they were treated as concerned sons.

No one talked to me about what was going on with my mother.” 

“I had to call the office repeatedly and badger the receptionist to ask the doctor to return my calls.” 

“When he added those two new meds to her regimen, didn’t he realize she already was taking 15 pills every day?” 

These physician colleagues were profoundly affected by their personal experiences of being on the opposite side of the bed. I subsequently witnessed a change in them: greater patience, more time taken to explain and an increased sensitivity to family needs for support.

Some of my colleagues have reminded me of an interesting comparison between human and veterinary medicine. With pets, explanations are often extensive, detailing the nature of the malady, often with visual depictions of diagnostic findings to ensure the owner understands the repercussions of the illness or injury. Time is taken to ensure the owner understands how and when to move their pet, administer medications and when to call for help. Follow-up phone calls are routinely made to determine how the owner and pet are faring and if any new problems have evolved. I poignantly remember an eloquent wife of a patient who died of acute leukemia shared her analogy with me. She stated, “You know when my dog died, I got a card from my vet. When my husband died, I got nothing.”

Caregivers, not physicians and nurses, render the majority of health care in the United States. They are the glue that holds the recovery process together. It is time to embrace family caregivers as partners, not extra work. The professional members of the cancer team shouldn’t have to sit in the lonely shoes of caregivers on the other side of the bed to appreciate this family imperative. In the promotion of healing and the provision of comfort, this family-centered paradigm within cancer care warrants urgent attention.

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I poignantly remember an eloquent wife of a patient who died of acute leukemia shared her analogy with me. She stated, “You know when my dog died, I got a card from my vet. When my husband died, I got nothing.”

Family Caregivers: The 'Pseudo' Doctors and Nurses

Editor’s Note: This piece was submitted by a contributing writer and does not represent the views of CURE Media Group.

I have been an oncology nurse since 1971 when Nixon first proclaimed the “War On Cancer.” I have seen firsthand the devastation this frightening illness has imposed on thousands of patients and their loved ones. Despite new promising treatment options for a number of malignancies, however, the ominous threat of cancer remains. Those diagnosed continue to fear the likelihood of a premature death, while families silently suffer anticipatory grief. Another aspect remains constant. Lay family caregivers, not health care institutions, are expected to provide the majority of care for those with serious illnesses like cancer.1

A recent joint report from the National Alliance for Caregiving and the American Association of Retired Persons (AARP) quantified that one in five adults — about 43.5 million Americans – are providing uncompensated care to sick, frail or disabled loved ones with the economic value estimated at $470 billion in 2013.2,3 Eighty-five percent of these family members are caring for a relative, namely a parent or parent-in-law in half of these cases, a spouse or partner for another twelve percent, and the remaining a mix of uncles, aunts, grandparents and others. Putting their lives on hold, nearly a quarter of caregivers report that their health has been negatively affected, as evidenced by delaying or skipping physician visits, having poor eating habits and developing clinical depression. Women and wives in particular fare the worse.

Overall, female caregivers provide the most personal care (i.e., dressing, bathing). Nearly one in four family members spend 41 hours or more a week caregiving. Eighty-four percent state that they need more help and better information and that their major worries include keeping their loved one safe, managing their own stress and making end-of-life decisions.

When I became a cancer caregiver, I had an employer who allowed me to take the time off work I needed to get my husband to his numerous appointments. But I repeatedly thought of those spouses less fortunate than I who were still required to work their 40 hours per week, who didn’t have a sister-in-law who came to help with their husband’s care and who lacked an army of friends who orchestrated meals and helped with childcare. Yet despite this degree of support, even I, an experienced oncology nurse, was overwhelmed. I remember our bathroom being cluttered with dozens of pill bottles. One day after just getting off the phone with my husband’s oncologist, I froze, unable to remember the advice given just minutes before about which combination of medications I needed to change to manage his escalating pain.

We need to learn from the Alzheimer’s experience where the demands of caregiving are acknowledged as evidenced by formal programs to educate, support and provide respite to family carers. The future portends an even greater crisis in caregiving as the percentage of “at risk” elderly (the largest developmental subset to develop cancer) will escalate mostly due to the aging of Baby Boomers and a shrinking pool of caregivers will prevail.4 This is largely driven by households now having two working adults limiting an available caregiver. Geographic distancing of adult children, a high rate of divorce or never-married status, lower fertility and increased rate of childlessness, all contribute to this evolving social trend impacting caregiving potential.

Caregiving can be bidirectional; namely that a patient’s health impacts the health of the caregivers’, and the well-being of the caregiver affects that of the patient.1 Cancer continues to be an equal opportunity oppressor. Only when we recognize — with a significant increase in manpower and programmatic resources - that cancer affects the entire family, will we have the needed supports in place to augment the deleterious effects of cancer on an increasing number of unsung heroes.

1. Wittenberg E & Prosser L (2016). Health as a family affair. New England Journal of Medicine, 374(19): 1804-1806.

2. National Alliance for Caregiving, AARP Public Policy Institute (2015). Caregiving in the United States: 2015 Report. Available @: http://aarp.org/conten/dan/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf.

3. Russo F (2016). The givers. Scientific American Mind, 27(2): 29-37. Schulz R & Eden J (Eds.) (2016). Family caregiving for an aging America. Na

Debi Boyle M.S.N., R.N., A.O.C.N.S., F.A.A.N.

Family Caregivers: The 'Pseudo' Doctors and Nurses

A Call to Action for Unsung Oncology Heroes

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