John Coffey of Albany and seven of his siblings have stepped up to provide round-the-clock, in-home care for their 91-year-old mother who was recently diagnosed with dementia.
They take turns sleeping over, providing meals and making sure she stays safe.
The family is fortunate to have so many hands available to pitch in, but concerns remain about how to adequately meet the ailing woman’s needs.
Coffey said he and his siblings lack information on dementia and how it progresses, need suggestions on how best to keep their mother safe and aren’t sure how to make sure her hygiene needs are met.
They don’t know where to turn to get help.
Similar concerns and many others were voiced by the family caregivers and eldercare service providers who, along with Coffey, gathered Monday at Albany’s Hilton Garden Inn for a Caregiver Listening Session.
The gathering, hosted by AARP New York, the New York State Caregiving and Respite Coalition, and the Council of Senior Centers and Services of New York City, is one of nine being held across the state to gather input on the needs of New York’s 4.1 million unpaid family caregivers.
“They’re contributing more than $32 billion worth of care, which is far in excess of any government contribution to caring for frail people. It’s about double the Medicaid component for long-term services and support, so these folks are literally the bottom of the pyramid that supports community-based long-term services and supports, and what we’re concerned about is how do we keep them doing what they want to do,” said Neal Lane, president of AARP New York, who moderated Monday’s Listening Session.
AARP plans to compile the data gathered at the nine listening sessions, along with what the organization believes are appropriate responses to the challenges family caregivers face, then create a legislative agenda, Lane said.
New York ranks 48th of 50 states for its support of family caregivers, sharing a bottom-of-the-barrel ranking with Mississippi, Alabama and Kentucky, according to the 2011 State Long-Term Services and Supports Scorecard produced by AARP, The Commonwealth Fund and The Scan Foundation.
The study looked at the quality of five areas of each state’s long-term support and services system: affordability and access; choice of setting and provider; quality of life and quality of care; support for family caregivers; and effective transitions and organization of care.
Overall, New York ranked 41st out of 50 states for its long-term care services and supports.
The state’s service and support deficit can play a part in caregiver burnout and add to financial strain.
“We hear stories about younger caregivers who had to leave the workforce, cared for their mom, dad for eight years and now they’re an older worker and trying to get a job in this economy. They’ve forfeited their retirement monies because they’ve either spent it or didn’t have enough time in the system, so they’re looking at a very bleak future,” Lane said.
Concerns voiced at Monday’s session included affordability of eldercare and the lack of case managers to help caregivers develop a comprehensive plan to successfully care for a frail loved one.
Also worrying participants is the lack of training available to family caregivers who are often called on to perform nursing duties, and the lack of funding for respite services.
Caregivers said their jobs would be easier if there was more local transportation available for the elderly — especially those who are handicapped — and if there were more local adult day care centers.
Several attendees also voiced concern about patients who were placed in local nursing homes but were then moved to an out-of-state facility because of behavioral problems.
The changing health care system offers a huge opportunity for advocacy, said Phil McCallion, director of the School of Social Welfare at the University at Albany, who sat on a panel of experts during the Listening Session.
“We, as family caregivers, need to be considered as part of the care system, and as well as advocating for government to say some of these things should happen, we also can play a role ourselves in speaking up,” he said.
AARP New York’s State Legislative Representative Bill Ferris, who also sat on the panel, agreed that family caregivers need to make their voices heard.
“These problems are unacceptable to AARP and we’re going to try to do something about, it but we can’t do it alone,” he said “We need your involvement in this because down at the state Capitol, if the voters and the people living out there in these communities do not get involved in these issues, these issues do not pass.”