A labor of love


Margaret_Bean2Caregivers respond to those in need

By Claudia Mathis
SUN staff writer

According to a nationwide survey by Caring Today magazine featured on NBC’s Today show last November, nearly 80 percent of family caregivers are finding the caregiving experience to be emotionally rewarding. This is surprising, considering that initial perceptions of caregiving are negative.

The Caring Today survey also shows that caregivers have distinctly more positive feelings after caring for a family member than they did before they were about to take on the responsibility.

Margaret Bean, receptionist at Onondaga County Catholic Charities Elderly Services Office, exemplifies the caregiver who thinks of her caregiving duties as a blessing. Bean cares for her developmentally-challenged 41-year-old daughter. Bean is 77 years old and does not consider her daughter, Gloria Togni, a burden. Togni is the youngest of Bean’s seven children. In addition to her disability, Togni underwent four heart surgeries before she was seven years old.

In May 1997, Bean received the Onondaga County Caregiver of the Year award. The judges thought she deserved the award because she was not only caring for her daughter, but she was also watching over her mother-in-law who had Alzheimer’s Disease. Additionally, Bean was studying to obtain her GED diploma.

Bean said she felt taking care of her mother-in-law was a burden at times but there were also times when she enjoyed being with her very much. “These people that I have taken care of, have been a joy,” said Bean. “God gave them to me to take care of.”

Bean said she has never taken a vacation away from her daughter. She does receive respite from her daughter’s care when Togni spends a few hours three times a week with a representative from Exceptional Family Resources in Syracuse. The representative routinely takes Togni out to dinner, to the library or out for a walk.

“Knowing that people care is very supportive to me,” said Bean. “When she was born, her doctor told me that she wouldn’t walk until she was five, but she did walk before that. I like the idea that I can still take care of her. It’s rewarding. I still call Gloria ‘my little angel.’”

Bean credits her mother-in-law for inspiring her to persevere through her added responsibility with her daughter. “When she was dying at St. James Square, she would always tell me ‘Everything in my life is based on love,’” explained Bean. “That’s what kept me going — love.”

Bean mentioned several things that have helped her cope with the added responsibility of caregiving. “The first is to treat them like they are not sick,” said Bean. “I never treated Gloria any differently than I did my other children. Another is to let them do their own thing.”

Arden McLaughlin, a parishioner of Holy Cross Church in DeWitt, also cares for a family member — her husband Edward who is quadriplegic. A former nurse, Arden took care of Edward around the clock. Then, due to some health problems of her own, it became necessary for Arden to hire home health aides to help out.

Arden’s  responsibilities include overseeing the aides’ payroll, maintaining the medical supplies and medications for her husband, grocery shopping, planning his meals and taking Edward to his doctor visits. Arden added that she also turns the pages of the material for Edward when he reads.

“You really lay your life down for the person you are taking care of,” said Arden. “We have four children and all but one live out-of-town. I can’t get away to visit them and my grandchildren.”

Arden said that a room has been built on the back of their house to accommodate her husband’s needs. “Edward is very appreciative of everything that is done for him,” said Arden.

Arden credits the help and loyalty of her friends for helping to get her through the challenges she faces at times. But, most importantly, Arden cites her strong faith and her love for her husband for getting her through the tough times. The couple has been married 50 years.

Nan Bader serves as a family caregiver for the Hospice & Palliative Care Associates. The non-profit organization provides a compassionate and dignified alternative for people with an incurable illness and limited life expectancy. A team of professional staff and volunteers provide physical, emotional and spiritual support and equipment, supplies and medication needed to ease pain, address the symptoms of the patient’s illness, and enhance the quality of the patient’s and family’s lives.

The family caregivers are trained by Hospice staff to help the patient and family. Possibly the caregivers’ most important skill is their ability to be good listeners.

Bader has volunteered her services as a family caregiver since 1986.

“I got involved because I really care about people,” said Bader. “I feel like I’m called to do it.”

The first family that Bader was assigned to stands out in her mind. The patient lived for one year after he was told he would die within six months. “I got very close to him and his wife,” said Bader. “I visited them once a week. First, I would talk to him and then I talked to his wife. She appreciated my visits.”

Bader said that family caregivers’ duties vary according to the family’s needs. Looking back over the years, Bader said she has visited with just the patient or just the family. She has also sat with the patient while the primary caregiver took care of his/her needs. “I remember one case where I read to the patient from the Bible,” said Bader.

“I’m now doing bereavement assessments — that’s when I support the family for 13 months after the death of the patient,” said Bader. After six weeks, Bader contacts the person who was the primary caregiver to see how things are going for that person. If they are having trouble adjusting and getting back to normal, Bader contacts the professionals at Hospice.

Hospice conducts a monthly support group for family caregivers at which a speaker gives presentations on pertinent issues for caregivers.

“It’s very rewarding and a privilege to be a part of the whole process,” said Bader. “My reward is seeing how the family appreciates the support from the Hospice team. I have a lot of faith and that sustains me.”

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