Help for when the hospital is the home

People are living longer. Fewer seniors are entering nursing homes. Those are positive developments. Except that when a parent or spouse becomes chronically ill or is otherwise unable to care for themselves, the burden is likely to fall on a family member, even though the person may be working full time and still has kids at home. Often, there”™s little support or other help.

To provide support and share stories and advice, the Ulster County Office for the Aging (UCOFA) held its first family caregivers”™ conference at the Holiday Inn in Kingston June 22. The event was organized by Evelyn Flynn, a caseworker at the office and also founder of a caregivers”™ support group. It was attended by nearly 80 caregivers.

Noting that two-thirds of all home care is provided by family members, Flynn characterized family caregivers as “unsung heroes” in her introduction to the packed conference room. Indeed, Anne Cardinale, director of the Ulster County Office for the Aging, said in her remarks that family caretakers “are the bedrock on which health care depends. Caregiving is hard work.”

According to the National Family Caregivers Association (NFCA), more than 50 million Americans are caring for a chronically ill, disabled or aged family member or friend. This isn”™t just an issue for families. It also impacts businesses: More than half of caregivers have cared for someone while they were working, according to the NFCA.

Family caretakers comprise 13 percent of the work force, and the loss to U.S. businesses as the result of someone being late, absent or otherwise having to adjust their work schedule due to their responsibility as a family caregiver is $34 billion a year, according to the NFCA. Despite their status as a shadow force of care providers, the economic contribution to the health care industry is significant: their services are valued at $306 billion a year, twice as much as the amount spent on health care and nursing homes, according to the NFCA.

At the conference, all of the six family caretakers at this reporter”™s table had full-time jobs, and two were men. Deanna Young, a nutritional educator at the Cornell Cooperative Extension of Ulster County, said she was able to work full time and care for her mother, who in six months went from living independently to breaking her second hip and having to move in with her daughter, thanks to the adult day-care services offered by the Office for the Aging. Five days a week, Young”™ mother is picked up by an ambulette and taken to the center during working hours””a godsend, Young said, given that she has no other family to help out.

Flynn, who cares for her disabled husband, mother and mother-in-law, said one of the purposes of the conference was to educate family caretakers about such services. The county day-care program is also affordable. Thomas Conboy, aging services representative for the New York State Office for the Aging, based in Albany, who was one of the officials attending ”“ Susan Cummings, liaison representative for state Sen. John Bonacic (R,I,C-Mount Hope) and Dan Ahouse, representing U.S. Rep. Maurice Hinchey (D, Hurley), also were present ”“ said the day care costs $50 a day but is available to adults 60 or above for as little as $8 to $10 a day, depending on income.

Flynn and Conboy encouraged businesses to host an employee assistant program, in  which a county representative would speak about family caretaker issues and services. Deborah Glassey, executive director of Always There, a Kingston-based nonprofit providing in-home and day-care services to incapacitated adults, said her group has served 1700 families in the past year.

A morning presentation by keynote speaker William Colagrande, a psychotherapist and author who maintains a practice in Kingston, set the stage for a heart-tugging discussion about the difficult issues faced by family caregivers, many of whom were unprepared for the sudden responsibility. People spoke about not wanting to ask others for help because they didn”™t want to lose control or be told by the other person they could do it better; being ashamed of feelings of resentment against the incapacitated loved one; not sharing with grown children details of their relatives”™ physical care because it was perceived as demeaning to the disabled person; and lying to the cared one so as to protect them from unpleasant truths.

Workshops, on topics such as understanding memory loss and feeling confident with hands-on care, were scheduled in the morning and afternoon.

Flynn said approximately $4,500 was raised to fund the conference, including a $2,000 grant from Bonacic”™s office. A second platinum sponsor was Always There, and silver sponsors were the Ulster Federal Credit Union and Kingston Hospital Lifeline. Twenty-two local businesses also provided financial support. Even area youth chipped in: Flynn said the Hudson Valley Heat Baseball Team held a spaghetti dinner and raised $250.    

Besides hosting a caregivers”™ conference annually, Flynn said another goal of the UCOFA is to set up a respite center: a facility where family caretakers could drop off the person in their care overnight or longer so they could get a break. Currently, the option of dropping them off at a nursing home isn”™t really viable, given the red tape and shortage of beds. If the caretaker becomes ill and has to go to the hospital, the incapacitated person also sometimes has to be admitted because of lack of options ”“ a stressful experience that is also very expensive and a waste of money, Flynn said.