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.”

From the Los Angeles Times (registration required):

A new industry of caregivers is emerging to take care of the growing ranks of elderly who are staying alive longer, thanks to advances in medical care. Where adult children may once have been able to keep an eye on their elders, the globalized economy has drawn many to workplaces far from home.

… an industry of local care coordinators is emerging to bridge the gap between far-off relatives and aging parents who may be overwhelmed by the labyrinth of medical and other services designed to help the aged and infirm survive in their own homes.

(more…)

From the Orlando Sentinel:

The sheriff’s office in Polk County has launched “Project Safe & Sound,” in which people with special needs are assigned a bracelet with a phone number for the sheriff’s office, a request to call for help and an identification number.

Officials say the program is designed to help children and adults with special needs get home safely.

The program was spearheaded by Crystle Feran, whose daughter has Down syndrome. (more…)

From the [UK] Telegraph, [UK] Guardian:

The Alzheimer Society in Britain is proposing an initiative that could lead to satellite tracking of tens of thousands of people in the early stages of the degenerative disease. A national debate is anticipated.

The charity said about 700,000 people in Britain had some form of dementia and up to 60 percent occasionally felt compelled to walk away from home without knowing how or where to return. This exposed them to danger and caused anxiety among relatives and carers.

(more…)

From the St. Paul Pioneer Press:

Early-stage Alzheimer’s disease patients and their caregivers get a new kind of support

Hectic holidays often expose symptoms of Alzheimer’s disease