Part 2 of a series

Reporter Erika Schultz, writing in the Seattle Times, documents the lives of 65-year-old Ron Johnson and his 41-year-old son Ronny, who has autism and is nonverbal. Ron had been managing as the sole caregiver for Ronny and was determined to do so indefinitely, but emergency heart surgery intervened.

Ron’s health emergency pushed Ronny to the top of the waiting list for state-provided care, and so he’s now able to live in a group home. But Ron’s not sure the placement is a good solution for his son — or for himself.

This story is part of a Times series on people with intellectual disabilities who outlive their caregivers. See earlier post here: For adults with intellectual disabilities, an uncertain future.

From the Wall Street Journal, Los Angeles Times and elsewhere:

Health-care institutions must rapidly increase training in geriatric care to ward off an “impending crisis” as 78 million baby boomers head toward old age, according to a report by the federal Institute of Medicine.

Calling the U.S. health-care work force “too small and woefully unprepared” for the growing elderly population, the 242-page report lays out a stark picture of increased demand for health-care workers — unmet by a stagnant or even dwindling supply of those trained to treat the elderly.

“This could be seen as evidence that our society places little value on the expertise needed to care for vulnerable, frail older Americans,” said John W. Rowe, chairman of the committee that wrote the report and former chairman and chief executive of health-insurance giant Aetna Inc.

(more…)

From HealthDay News in the Washington Post, USA Today:

An estimated 10 million American baby boomers will develop Alzheimer’s disease in their lifetime, placing enormous strains on the U.S. health-care system and the already overburdened network of caregivers, a new report predicts.

Currently, at least 5.2 million Americans suffer from Alzheimer’s, including 200,000 to 250,000 people under age 65. By 2010, projections say there will be 500,000 new cases of the mind-wasting disease each year, and nearly one million new cases annually by 2050, the report estimates.

When Dave Kendall promised to love Diana, he meant it

Writing in the Washington Post Magazine, Liza Mundy profiles a marriage that has been irrevocably changed by Huntington’s disease, a hereditary degenerative disorder. Since his wife Diana was diagnosed in 2000 at age 48, Dave Kendall has become her primary caregiver. An excerpt:

He is taking the ultimate test of marital commitment in the modern medical era.

In the past several decades, something known as “family caregiving” has entered the American lexicon. As the baby boom generation has moved into late middle age, some 44 million adults find themselves caring for an ill family member, usually an elderly parent. Caregivers are now a constituency. They have Web sites, support groups, alliances, lobbying organizations.

With good reason: Family caregivers provide billions of dollars in uncompensated health care for some of the country’s most chronically ill citizens. Within this group is a subset, an estimated 14 million who are caregivers for their spouses. Most are aging wives and husbands taking care of older or sicker mates. But some, such as Dave Kendall, are caring for spouses at a far younger age than would be reasonably expected.

Theirs, of course, is not an entirely new predicament. (more…)

Writers on Caring for Family, edited by Nell Casey. Writing in the New York Times Book Review, Joyce Johnson finds much to admire in a collection of essays by writers about the peculiarly solitary and often harrowing role of “caregiver” in today’s society. An excerpt:

“Caregiver” is a deceptively professional-sounding term for a role in which most of us are complete amateurs, and for one that is apt to descend upon us like a blow from fate, stunning and unforeseen.

… Our society would rather not focus on this area of experience and makes little provision for it. In the past, when families were much larger and life was more often cut short by disease, caregiving was more integrated into normal life. Women were brought up to become the selfless angels of the household, the built-in care system in any emergency

… Today’s caregivers are likely to find themselves peculiarly alone, exiles from the busy, heedless life around them …

(more…)

Here’s a video from Leeza Gibbons’ “Health Corner” on Lifetime TV:

They may not necessarily mean to be unkind, but people around a child with disabilities may make insensitive comments or ask inappropriate questions sometimes. How do you deal with that?

Meet Johanna, whose 4-year-old son Jack has Down’s Syndrome and Alopecia. Many people, especially children, ask questions out of curiosity. Sometimes she’s happy to educate and enlighten others – other times, it’s very trying. She worries that Jack can understand comments people make around him.

Through it all, Jack has proved a blessing for her, and his special situation has taught her some things, too.

Gibbons talks about her family’s experience as her mother developed Alzheimer’s disease. Her father had cards to distribute: “My wife has a memory disorder. Please be patient.”

See also:

• Leeza’s Ten Commandments of Caregiving (Examples: Do not take anything personally. Do not fall prey to shame and stigma. Find humor in many places.)
  
• Entertainer Leeza Gibbons named to key Alzheimer’s post

Said to be ‘virtually trapped in their own home’

From the [London] Times:

A growing number of elderly and disabled people are being denied help with washing, dressing and eating as more local authorities ration social care.

A report showed that seven out of ten councils restrict help to very serious cases, leaving others to pay for themselves or rely on family and friends.

The annual report from the Commission for Social Care Inspection found that thousands fewer people qualify for care now compared with three years ago, despite a 3 per cent rise in the number of people over 75.

… “People who only five years ago qualified for council-arranged help are today excluded by the system and left to fend for themselves,” said Dame Denise Platt, chairman of the commission.

… “People unable to rely on families or friends and unable to pay for care services themselves are simply left to cope with everyday life, while some become virtually trapped in their own home.”