Carolyn Day is her husband’s constant companion. Five years ago, Jerry Day was diagnosed with Alzheimer’s.
Today, the disease has progressed to the point where his wife can’t even slip away to attend a caregiver support group.
“I can’t leave him alone anymore,” she said while sitting with her husband at their dining room table. “He goes looking for me, so I can’t ever leave him alone. I guess that’s the hardest part.”
Carolyn said patience is a gift for dealing with the challenges. “Right now, I figure I can take care of him better than anyone else,” the 75-year-old woman said.
Jerry Day, 80, a retired public works official, sipped coffee from a Father’s Day mug and dozed. Their Delmar home is filled with family photos, evidence of a satisfying life raising four daughters, who help as often as they can.
Kristy’s Barn is a frequent stop for mother-daughter shopping for fresh produce and treats.
With no help outside the family, Carolyn doesn’t get many breaks. She misses the little things: daily walks, coffee with friends, and gardening. But she takes her husband for long drives along Albany County back roads. “It’s something he enjoys, and I do too because I’m a country girl.”
Caregivers like Carolyn Day provide care worth about $25 billion a year in New York, according to research by AARP, and it delays or postpones costly nursing home care.
“We want to see a real commitment from the state in the next state budget to help the over 2 million family members providing caregiving services,” said Bill Ferris, AARP New York state legislative representative.
“These people need a break,” Ferris said. “You can give them a pamphlet, you can educate them on how to care for someone in their home, but at the end of the day they need a break.”
More state-funded programs providing adult day services and respite would ease their stress, he said. The state now provides just $2 million for respite and social adult day services, such as training for volunteers who come in so a family member can run errands or go to appointments.
“One of the problems is access to services. It’s difficult to find services because they’re scattered, they’re under different agencies [with] different eligibility standards,” said Carol Levine, director of the United Hospital Fund’s Families and Health Care Project. “It’s not a consistent program and it’s hard for family caregivers to put this all together.”
She added, “It’s probably not enough to say we need more.”
The burden falls hardest on family. Elisa Futia lives across the street from her 85-year-old father-in-law and often checks in on him. Other family members shuttle him to kidney dialysis three times a week in nearby Albany.
“Yeah, they all help me,” said Frank Futia, a retired contractor who is adamant about staying in the Cape Cod-style home he helped build in Delmar.
“I can see where in the future there’s going to be a need for us to start looking at what else we can do as he starts to decline more,” Elisa Futia said.
Marcy Fiacco moved her mother, Venitah Sanders, 81, to her home in Schodack. Fiacco oversees her mother’s rental property in North Carolina, has a child in college and two teens at home, and is maintaining her dietitian business while caring for everyone.
“I’m struggling to find enough support services or things where I can keep her busy and occupied so that I do not close [my business].” Taking care of an older relative is an important value, Fiacco said.
“It teaches children compassion and patience,” she said. “This is what we do in our family.”
If you need help, check out:
- The caregiving section on AARP.org;
- Families and Health Care Professionals “Next Step in Care,” a United Hospital Fund campaign about transitions in care
- New York State Office for the Aging, which also offers a help line at 1-800-342-9871.
Donna Liquori is a freelance reporter in upstate New York.