Turbulence and Transformation: The Real Story of Caregiving

Providing care for a loved one diagnosed with a serious illness can pose significant challenges, but there are steps you can take to make it an enlightening journey.

By John Leifer

For many of us, life flows unabated until certain events intrude and turn our world upside down. It may be a diagnosis of cancer in a close family mem­ber, the early signs of Alzheimer’s in an aging parent, or perhaps the heart-breaking realization that a child has a chronic condition that will require a lifetime of care. In such moments our roles and reali­ty change in an instant. We become caregivers.

It happened to Darrell H. more than 20 years ago. A Methodist pastor, whose reflective manner communicates the profound depth of his faith, Darrell says special­ists spent more than two years de­bating the underlying cause of his wife, Patricia’s, odd constellation of symptoms. Then, in November 1993, they finally reached a con­sensus: Patricia had an unusual form of lymphoma.

But the difficult news did not stop there. At the same time that Darrell and Patricia had been struggling to determine the source of her symp­toms, they were desperately seeking an explanation for the apparent de­layed development of their daugh­ter, Meghan. Within 24 hours of Patricia’s diagnosis, Meghan was diagnosed with severe autism.

However he defined himself be­fore those fateful events, Darrell was now, first and foremost, a caregiver. It was a “new normal” with profound ramifications—a revised reality that had the capaci­ty to bring both great joy and deep sorrow. It’s a role that would shape two decades of his life with Patri­cia, before lymphoma ultimately claimed her, and a lifetime with Meghan. It was also a role that would challenge his faith to the core yet lead him to emerge stron­ger and with deeper conviction.

The Growing Ranks of Caregivers

Darrell’s story is not unique. Ac­cording to the National Alliance for Caregiving, there are current­ly more than 65 million Americans serving as caregivers. That number is forecast to grow steeply based on two seemingly immutable trends: our aging population and the trans­formation of our healthcare deliv­ery system.

Decades ago a prescient writ­er named Ken Dychtwald warned that, as baby boomers began to age, a virtual tsunami of older Ameri­cans would one day overwhelm the healthcare system. He termed this phenomenon the age wave.1 Today more than 10,000 baby boomers turn 65 on a daily basis, and the impact is proving profound: “Over the past 20 years, there has been a rise in chronic disease prevalence, and the majority of the older pop­ulation, over age 65, now suffers from multiple chronic diseases,” according to researcher William Hung.2

The effects of the tsunami are dramatically intensified by a healthcare system that has divorced itself from meeting the daily needs of many chronically ill patients. As a result, untrained family mem­bers must pick up where healthcare leaves off, which can be a daunting prospect.

Evidence of these changes abound. Studies conducted by MetLife and repeated at various intervals show that the number of women providing basic care has grown from 9 percent in 1994 to 28 percent in 2008.3

A Disproportionate Burden on Women

The number of men providing care has increased as well but remains far below that of women. In fact, the distribution of caregiving re­sponsibilities among the sexes is far from equitable. Not only do women shoulder two-thirds of the responsibilities but they are also of­ten required to provide the most de­manding and stressful elements of care—addressing what are known as activities of daily life (ADLs), which include eating, dressing, bathing, and using the toilet.

Irrespective of gender, caregiv­ing is a major responsibility that requires a sustained commitment. While Darrell may be an outlier— as someone whose role as a caregiv­er has consumed much of his life— the majority of caregivers report extended periods of care, many taking on the role for a minimum of three years.

The Unseen Toll on Caregiver Health and Well-Being

Researchers have known for years that there can be a high toll asso­ciated with caregiving—emotion­ally, physically, and economically. At the extreme, evidence suggests that it can even have an impact on mortality. The degree to which the health and well-being of caregivers is negatively affected appears to be tied to their perceived level of bur­den and their ability, based on their underlying physical and mental health, to manage the stress.

A survey conducted by the Na­tional Alliance for Caregiving found that 53 percent of caregivers rated the emotional stress of care­giving as moderate or high. Wom­en were significantly more likely to experience high levels of stress, as were people in fair to poor health. Caregivers providing for Alzhei­mer’s patients were also more at risk.

The Costs of Caregiving

Caregiving takes a toll not only on our physical health and well-be­ing but also on our wallets, as re­vealed in a 2011 report titled The MetLife Study of Caregiving Costs to Working Caregivers.3 The report focused on the 10 million adult children (ages 50 and older) who serve as caregivers for their parents. Among the numerous, eye-popping statistics were these estimates of the financial toll of caregiving:

  • “The total estimated aggregate lost wages, pension, and Social Security benefits of these caregivers of parents is nearly $3 trillion.
  • “The cost impact of caregiving on the individual female caregiver in terms of lost wages and Social Security benefits equals $324,044.”
  • “The total impact equals $283,716 for men.”3

Women, once again, bear a dispro­portionate burden associated with caregiving—in this case, financial.

Inoculating Yourself against the Potential Pitfalls of Caregiving

There are inescapable realities to caregiving. Yet a caregiver’s abil­ity to shift the focus, from one of burden to a beneficence and grace shared with the care recipient, has much to do with preparation, at­titude, and adoption of some very specific behaviors.

Here is a short prescription for improving the journey through care­giving:

  • Begin with education: learn about key resources that offer free, invaluable information for caregivers, including AARP, Family Caregiver Alliance, and the National Alliance for Care­giving.
  • If you have a family member who is aging, disabled, or otherwise impaired, consider how their needs may change in time. Is there a plan in place for address­ing these evolving needs? If not, AARP offers a great template on its website for how to construct such a plan: aarp.org/content/ dam/aarp/home-and-family/ caregiving/2012-10/PrepareTo­Care-Guide-FINAL.pdf.
  • Caregiving will, in all likeli­hood, disrupt your work, so it is important to understand your employer’s policies, as well as your rights to modify your work schedule based on the potential demands of caregiving.

As a caregiver, it is essential that you have a simple plan for taking care of yourself—and that you stick to it. It should address exercise, good nutri­tion, maintaining important social relationships, honoring one’s fam­ily, and ensuring that your health needs are addressed.

  • Explore the numerous inter­ventions designed to improve well-being, including mindful­ness/meditation, journaling, and gratitude exercises. They can be powerful antidotes to distress.
  • Relinquish any guilt you feel about resenting the role in which you find yourself unex­pectedly cast. It is quite normal to feel both tremendous love for the person you care for as well as resentment at times.
  • Finally, for those caregivers who take solace in their faith, Dar­rell advises that one’s faith may be tested before it is strength­ened: “Think very, very hard about the questions of faith. If you’ve already got [faith], think about it again and be sure you really have it. If you don’t have it, take a hard look at the evi­dence and search for it.”

Caregiving sweeps you up in a powerful current and can carry you in directions you never anticipated. It can be a turbulent and distress­ing journey or a transformational one—and likely both. Ultimately, when you find yourself on the other side of the experience, there is no doubt you will be forever changed and enlightened.


References

  1. Dychtwald K, Flower J. Age Wave: How The Most Important Trend of Our Time Will Change Your Future. New York: Bantam; 1990.
  2. Hung WH, Ross JS, Boockvar KS, Siu AL. Re­cent trends in chronic disease, impairment and disability among older adults in the United States. BMC Geriatrics. 2011; 11:47. doi: 10.1186/1471- 2318-11-47.
  3. The MetLife Study of Caregiving Costs to Working Caregivers: Double Jeopardy for Baby Boomers Caring for Their Parents. MetLife Mature Market Institute, June 2011. Avail­able at: http://www.caregiving.org/wp-content/uploads/2011/06/mmi-caregiving-costs-work­ingcaregivers.pdf. Accessed April 17, 2016.

John Leifer has spent more than 30 years im­mersed in the healthcare in­dustry as a se­nior healthcare executive, con­sultant, academi­cian, and writer. An outspoken advocate for patients’ rights, he has published widely on the need for patients to receive appropri­ate, safe, effective care, including two, recent books: The Myths of Modern Medicine: The Alarming Truth about American Health Care and After You Hear It’s Cancer: A Guide to Surviving the Difficult Journey Ahead. Leifer is the founder and chief executive offi­cer of My Cancer Advocate, a not-for-profit organization committed to empowering patients with the right information and resources needed to participate actively in their can­cer care. For more information visit afteryouhearitscancer.com or e-mail mailto:jleifer@leifer.com.