New Book Puts Human Face on Family Caregiver Statistics

60-year-old Shirley Grill worries about her mother, who needs more and more help with the activities of daily living. Shirley thinks that a senior living community would be the perfect choice for Mom. But for her mother, who lost almost all her family during the Holocaust and spent six years in a displaced persons camp, any sense of being controlled could trigger memories of that time. Home care turns out to be the best choice—though it takes several years to find a caregiver who is a good match.

When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions Paula Span Springboard Press 2009

The statistics on family caregiving and the aging of America can be mind-boggling: at present, over 50 million people provide care for a senior or disabled loved one…and with the aging of the baby boomers, this number will rise sharply over the next few decades and beyond.

In a new book, When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions, author Paula Span follows the eldercare paths of a number of family caregivers. Span brings the reader along for the ride as adult children work with—and sometimes, seemingly against—their parents to arrive at good living and care solutions.

The book is a good primer on the options available to family caregivers who need help. Span takes a look at some of the main living and care options: staying at home with support services; moving in with children or other relatives; assisted living communities; nursing home care; and hospice.

When the Time Comes offers a useful overview of each option, and the information comes alive through the stories and comments of sons and daughters who are dealing with the increasing needs of aging elders. Span, former staff writer at the Washington Post, recounts personal experiences with her own aging parents, and spends time with a number of other families during moments of crisis and transition.

Joel Gordon's mother, 96, has dementia and has become "hard to handle." The assisted living facility where she lives issues an ultimatum: Mom can only stay if family hires private aides to supplement her supervision. Then, the call comes from a local nursing home that Joel's mom has come to the top of the waiting list. Asked what will happen when the family tells Mom they think the nursing home is the best option, Joel replies with one word: "Nagasaki."

Span sheds light on some important facts that family caregivers might not be aware of—statistics which could allay some of the caregiver guilt so endemic to struggling adult children:

• Americans genuinely value caring for our parents. The percentage of family caregivers has grown over the past decades—despite the fact that many caregivers are still raising children, juggling demanding jobs, or dealing with their own aging issues.
  
  
• We should not judge ourselves by the perceived standards of previous generations, when the life expectancy was shorter and people seldom survived a debilitating health event for long. Span points out that with sophisticated medical technology prolonging life, family caregivers are called upon to perform medically complex care procedures—often with little warning or training.
  
  
• While many family caregivers believe they are the best—perhaps the only—ones who can take care of their elder loved ones, in reality trained professionals can often provide superior care. And Span notes that when a home care worker or hospice aide performs personal care tasks such as bathing and changing, this helps "preserve the traditional parent-child relationship."
  
  
• Most seniors do NOT want to live with their kids. Span cites eye-opening statistics that demonstrate that before the New Deal and Social Security, 70% of widows lived with their children. But once Social Security entered the picture, this number plummeted as elders began living in their own homes—which most would have preferred all along.

Span also discusses the issues that arise when an older loved one is near the end of life. She describes the important conversations families and loved ones should have, including advance directives and their loved one's idea of "a good death"— the quality of life experienced during the last stages of terminal illness. She emphasizes that being in denial about the seriousness of a loved one's condition will not lengthen life, but may prolong suffering.

When the Time Comes demonstrates that hospice can be a vital part of the eldercare continuum. Span explains that hospice care can be provided at home, or in some cases, in the nursing home setting. She cites a 2007 study demonstrating that hospice patients actually have a longer survival rate than patients receiving more aggressive interventions such as chemotherapy and surgery. She shares an impressive figure from a survey of families whose loved ones had received hospice care: "How many enterprises can cite consumer satisfaction findings like this one? Asked if they'd recommend hospice care to others, 98.5 percent said yes."

An overriding theme of the book is: "We step up." No matter what the challenges, says Span, Americans step up in record numbers to care for senior relatives. When the Time Comes offers a wealth of advice to help them in their quest.