Who cares for the caregiver?

Marie Bidetti carefully sorts the medications and places them into pillboxes on her kitchen table. The containers are labeled with different times so she knows when to deliver each medicine to her husband, William.

Like nearly one-third of the U.S. adult population, Mrs. Bidetti is a caregiver. Since 2009, she has been doing everything necessary to keep her husband of 43 years in their Arden Heights home. In addition to chores around the house, her responsibilities include administering medications for her husband’s Parkinson’s disease and other ailments, lifting him out of bed and feeding him.

“My kids tell me I wasn’t taking care of myself because I was caring for my husband,” said the 66-year-old who has medical issues of her own.

But last year, she could no longer put her needs on hold. Mrs. Bidetti was diagnosed with breast cancer and needed chemotherapy and radiation treatments. Already overwhelmed by her responsibilities, she wondered who would watch her husband while she was in treatment.

A nurse from the Visiting Nurse Service of New York (VNSNY), who was helping with her husband’s care, referred Mrs. Bidetti to Ralph Parmegiani, a clinical caregiver advocate who helps those experiencing “caregiver burnout.”

“A big problem for caregivers is that it impacts their health. The stress is something that’s serious enough, but it’s also their own neglect,” Parmegiani explained. “They tend to make sure their mom, dad, husband or wife is being cared for, but they don’t take care of themselves.”

‘SAVED’

Through the Family Caregiver Support Program, which was launched in 2010 with support from the Staten Island Foundation, Parmegiani ensured Mrs. Bidetti had the help she needed. While she underwent radiation five days a week for eight weeks, an aide was caring for her husband.

“Ralph saved me,” Mrs. Bidetti said. “I was able to go into it [treatment] with a clear mind.”

In addition to help with respite services for caregivers, Parmegiani offers referrals to other caregiver programs and lends his ear to caregivers.

“I like that particularly. It makes me feel good when I finish. It’s psychotherapy, talking to people about how they feel, their mental status and how they’re coping,” the social worker said.

Caregivers tend to become stressed and depressed; it can be so severe they consider suicide, Parmegiani said. Unlike parenthood, which tends to be a choice, caregiving is usually thrust upon a person.

As they get deeper into their caregiver role, he said, people often become isolated as their life revolves around their loved one. The majority don’t ask for help, Parmegiani continued.

“The last thing a caregiver should do is try to do it all alone,” Parmegiani said. 

ASK FOR HELP

Catherine Nyhus agreed that caregivers should ask for help. The social worker at Staten Island University Hospital runs the support group, “Who Takes Care of the Caregiver?” at the Nalitt Institute on the hospital’s Ocean Breeze campus.

Each month, she sees children, in-laws, spouses and others who feel stressed out and alone. Many believe others won’t or can’t give of their time.

Caregiving usually falls to one person in the family no matter how many people are in the family,” Mrs. Nyhus said. “They need someone to offer comfort and free time. I tell the caregivers that if they don’t take care of themselves, they can’t take care of the other person.”

People often underestimate the role of caregivers — many of whom also work or have children — and tend to turn away from them instead of offering that much-needed support.

“They are afraid of being asked to help, so they don’t find out how they’re doing or stop by,” Mrs. Nyhus said of family and friends. “Sometimes, just having someone sit with you for an hour and have a cup of tea makes a difference.”

During the support group, she offers suggestions on how to get others involved. For example, ask them when they are free to help out, instead of giving them a date; this way, they can’t argue that they already have plans.

The caregivers in the group also share ideas and find relief in talking to others going through a similar experience, Mrs. Nyhus said. 

CAREGIVER GUILT 

Samuel Berman of New Springville began attending the caregiver support group after having difficulty balancing his needs with those of his wife of 57 years, Harriet.

His wife suffered a stroke, followed by a broken hip, Berman explained, and, although it was accidental, he blamed himself for the hip break. He briefly left her in a store without putting the brake on her walker, and she fell.

“I know better,” the 76-year-old said. “I feel responsible for my wife.”

Going to the support group helped Berman overcome his feelings of guilt. It also helped him learn to put his needs first at times, something he was struggling with as he now had to cook, clean and shop for both of them.

He also learned to set “ground rules” for his wife, who is still recovering from the fall. “If she wants something, she has to walk to get it,” Berman said. “The worst thing is to cater to her to such a point where she will become too dependent on me. I know what she can and can’t do.”

Berman said he now feels better about his caregiving responsibilities, and hopes to pass on a lesson he learned from Mrs. Nyhus to others in a similar situation.

“You have a right to live your life,” he said. “You have to be there for her or him, but you have to remember to still be there for yourself.”

Original article published: Monday, May 07, 2012 by Andrea Boyarsky of the Staten Island Advance