Several years ago, when stressed because I couldn’t do more for my mother, who was suffering from lung cancer and dementia, I blurted out to a friend, “I just want her to have quality of life!”
I still remember my friend’s compassionate, quiet response: “You, too, need quality of life.”
This past year I watched as my brother’s children and his woman friend did what they could to ease my brother’s pain and discomfort with a terminal illness. They drove him to various specialists, organized and administered nine different medications, helped him bathe, arranged schedules, prepared his meals, encouraged him to eat, or at least sample the food, and simply spent time with him.
They were caregivers who gave with love. Their love and service also came with a personal cost.
In our county alone there must be hundreds of such caregivers, family members or friends, who attend, sometimes around the clock, to the diverse and often increasing needs of another, whether that be for someone with an incapacitating disease, advanced age and frailty, or dementia. One would think it unrealistic to expect any single person to be nurse, housekeeper, driver, counselor, personal care aide, cook and advocate — 24/7. And yet that myriad of roles is often what the caretaker assumes. The time and intensity of caregiving takes a toll, no matter how willing the care.
Caregivers may experience a sense of isolation, alone in the burden they carry. They may suffer from sleep deprivation, deal with anger, regret a lack of personal time and space and feel a loss of control, in part from not knowing what’s coming next. They need help to manage the stressors that can threaten their own health and psyche.
Sometimes another friend or relative can lend a hand, offering temporary relief. But friends and relatives have their own lives and responsibilities and can’t always meet the immediate need of the caregiver. In our county, our community, however, there are resources and agencies that can help assure quality of life for the caregiver as well for as the care receiver. This article highlights two: the Department of the Aging/NY Connects and Total Senior Care.
NY Connects was established in 2006 by the New York State Office of the Aging and the New York Department of Health to provide “one stop” access to free and comprehensive services to the elderly and those with a disability. It partners with agencies in the various counties of the state — in Cattaraugus County with the Department of the Aging. When a caregiver calls the county’s Department of the Aging for help, a care consultation is set up either at the agency or at the caller’s home to determine the need: services that may include times of respite, home
delivered meals, counseling, home visits, transportation, family meetings, support groups, and other. There is no charge and no income limitation required. According to the agency, its personnel see and help hundreds of caregivers yearly.
One of the most difficult and emotionally draining challenges confronting a caregiver arises when she or he realizes that the person cared for has such diminished physical and/or mental capacity that a nursing home future seems inevitable. Yet rare is the person who would willingly choose to end his or her life in an institutional setting, away from home. The caregiver, then, struggles with the oft-heard plea to “die in my own home,” against the realities of the individual’s condition. Total Senior Care in Olean offers an alternative. Through its Program of All-inclusive Care for the Elderly (PACE), eligible adults 55 or older can remain safe and secure in their own homes and receive all the medical and long-term services they need through a caring and professional panel of providers. Funded through Medicare, Medicaid, PACE lifts an insurmountable burden from the caregiver.
For more information about both of these resources, call Cattaraugus County Department of the Aging/NY Connects at 716-373-8032 or 1-800-462-2901 and Total Senior Care at 1-866-939-8613.
This writer recommends one further resource for those in the spectrum of caring, whether it be caregiver or care receiver, and for those advancing to one or the other position: the book by Atul Gawande, Being Mortal.
It’s all about quality of life.