The role of a caregiver is complex. The caregiver sees someone requiring attention, and he, or she, chooses to put his own needs second.
“This is crazy. With the cost of health aides and nursing homes, I quit my job and moved my mother from Boston to take care of her after she was diagnosed with Alzheimer’s. It was devastating for us financially, but my family was supportive,” said Caren Irons, Geneseo, in her early fifties at the time.
Caregivers are not paid to provide assistance like professional home health care aides that work for a fee. The most familiar caregiver is that of an adult taking care of aging parents. However, caregivers are also found as spouses caring for husbands or wives, other relatives, middle aged parents in charge of disabled adult children and children caring for disabled parents or grandparents.
“It is a challenge. You accept it and go with it. My philosophy is that love overcomes everything,” stated Richard Bondi, 85, Dansville, who is caring for his second wife, Mary, diagnosed with Alzheimer’s. Previously Bondi had been the caregiver for his first wife who had ovarian cancer.
A caregiver may be living with a family member in need of help, or a caregiver may lend support to a neighbor or relative outside the home. The tasks that they perform vary from shopping for groceries, checking in on a daily basis and performing routine hygiene. Caregivers are service providers, companions, advocates and decision-makers.
A person does not sign up to be a caregiver, get licensed, or in many cases may not even consider themselves a caregiver, but in all reality they are stepping up to the plate and performing the services for another person in need.
“The attitude about giving is what makes one qualified, along with life long nurturing skills,” said Dale Sells, Caregiver Coordinator at the Noyes Caregiver Resource Center. The center serves residents of Livingston County and is a collaborative effort between Noyes Hospital and the Livingston County Office of the Aging. Sells is employed by Noyes Hospital but the Office of the Aging funds the program.
Situations are as unique as the people involved. Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team according to the National Family Caregivers Association.
“I never realized how exhausted I was, and with my disabled daughter to handle as well, I was torn in every direction that you could imagine,” stated Irons.
Caregivers often neglect themselves and suffer with high rates of stress related disease.
“Unless one lives the factual problems of this disease [Alzheimer’s] one cannot fathom the onslaught and the distortion of one’s life in the caring demands and zombie future until death is forthcoming,” stated Bondi in an informational letter to Senator Charles Schumer explaining the problems caregivers face day in and day out. “When it comes to a loved one I will beg.”
As the first wave of baby boomers reach their 65th birthday in 2011, demands for health care services from the rapidly growing elderly population will significantly affect health care delivery.
“There are four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will become caregivers and those who need caregivers,” said Rosalynn Carter, former first lady and president of the board of directors for the Rosalynn Carter Institute for Caregiving.
“Everybody’s journey is different. Your emotions lift up and down. It is the longest goodbye to a loved one. You feel angry and cheated that you have to deal with it,” said Irons.
“And then there are the denials. Family members don’t want to deal with the problem, wish to remember a loved one as they once were and even can’t handle the problem. In my case my kids and grandkids are wonderful,” said Bondi.
“The older generation has been raised to handle things on their own. They are unselfish givers, but there is help out there to ease the lonely walk. That’s my role to get people connected to the services they need to ease their way,” said Sells, Caregiver Coordinator.
In other cases, a working family gathers its strength and emotional caregiving support under one roof for a young adult child thinking that it might be a temporary illness, but as time goes on it becomes a more complicated health issue. Life has thrown them a curve that two generations have chosen to work out together.
“I can’t put a price tag on caring for my mother, and my spirituality got me through,” said Irons.
“I am very fortunate. Each day is beautiful,” said Bondi.
Taking time to smell the roses along the journey of giving compassionately to others blooms abundantly in caregivers who have learned to face each day with hopefulness.