Who will care for Me?

By Valerie Schlitt, Origin Magazine, Spring Issue 2005 Volume 5 Issue 1

When Sarah's sister called to say their grandmother had died, Sarah almost didn't believe her.

"You certainly can't mean Nanny," she reacted impulsively. Sarah (not her real name) had expected news of her grandfather's death.

After all, her grandfather had been the one with chronic heart disease. He had been repeatedly admitted to hospitals and rehabilitation center. For months on end, he had required 24/7 attention. He was bathed, fed, dressed, and under continuous supervision.

It was, in fact, Sarah's grandmother who had been her grandfathers' constant caregiver. Always healthy, strong and diligent, her grandmother had assumed the duty of attending her husband with a stubborn sense of obligation. And, she had accepted virtually no help from family or neighbors.

Then, only ten months after grandfather falling seriously ill, this healthy 83-year-old woman was gone from Sarah's life forever.

What happened to Sarah's grandmother is not unusual, according to Geriatric Care Manager Beverly Bernstein Joie. Joie, President of Elder Connections in Newtown Square, PA says, "It's the caregivers who get sick faster than their peers and who die younger. Caring for a family member or a loved one really wears on people. It takes a huge toll."

Joie's firm helps families with practical, affordable, and caring solutions to quality of life issues for elderly family members.

"We share a lot of the care giving with the families, and allow family members more time to simply love and enjoy each other. Our intention is to make a difference in people's lives and this actually happens."

Joie believes there are two key ingredients to survive as the effective caregiver: knowledge and support. By "knowledge" she means having information about the disease itself, including the treatments. A caregiver's ability to stay up-to-date on the disease often means the difference between life and death to the loved one.

"But "support" is just as critical," says Joie. By this, she means using the resource virtually all communities offer to ease caregivers' burdens. These include: respite care, caregiver support groups, transportation services, home aides, and more.

"If caregivers don't get some support," Joie says, "the stress often causes them to loose their relationship as a wife, a daughter, or a son." Joie believes that keeping these relationships intact is so critical to being a good caregiver.

Karen Rosenberg is director of Senior Services at Children of Aging Parents (CAPS) for Philadelphia and the area suburbs. She agrees, "There is so much stress and guilt involved in being a caregiver. No matter how much caregivers do, they never feel they're doing enough."

Rosenberg said that many nursing homes offer multi-day respite care for seniors, and some even offer care for a single day. This provides caregivers a break for personal time or a vacation. "People don't take advantage of respite and day care enough," Rosenberg believes.

Caregiver support groups are also top on her list. They let caregivers talk to others in the same position. They share ideas, frustrations, or just talk. Rosenberg says caregivers call her office at CAPS to locate support groups and she often helps them start new ones, if none exist in their area.

"Homemaking, cleaning and cooking services, as well as home health aides take some of the burden away," Rosenberg says. She recommends that caregivers contact their county's Agency on Aging, the main source of information on available services. "Some are free. Others are on a full scale," she says. But, she stresses how vital it is for caregivers to learn about and use the services.

Sarah's grandmother had absolutely refused any outside nonmedical help. Probably because of this, Sarah saw a big change in her grandmother's personality. "She became disgusted and angry. She easily lost patience with my grandfather and the rest of the family, especially those closest to her." Sarah said it was almost like losing the grandmother she once knew.

In the final months of her life, Sarah's grandmother spent nights on the family room couch next to her husband's hospital bed. "She couldn't sleep because he called for her throughout the night. I saw how it affected her both physically and emotionally."

One morning, a fellow church member paid a visit, only to discover that the caregiver had passed away. No one had seen it coming.

To this day, Sarah's sister is resentful of her grandfather, feeling it was his fault that her grandmother had died so suddenly. Her grandfather lived a whole year longer in a nursing home, still calling out for his wife in the night.

Sarah didn't have the experience that some others do, however. Sarah and the rest of her family continued to work full time. Rosenberg says many caregivers give up their jobs to attend to loved ones. This places them under tremendous emotional and financial strain. Rosenberg adds that women typically assume the caregiver role.

Rosenberg also adds that many families do not take care of financial and legal matters while they are capable of doing so. "I get call every day from people who haven't set up advance healthcare directives or power of attorney. Legal and financial worries only compound the emotional and physical stress of caregiving," she says.

Elder Law Attorney, Jerold E. Rothkoff, whose firm has offices in Philadelphia, Lower Bucks County, and Cherry Hill, NJ, says "Many of my clients come to me for legal and financial help when they're in a crisis situation. Although I can provide many viable planning solutions in a crisis situation, planning in advance of a crisis is always the better options.

Rothkoff works closely with both CAPS and geriatric care managers. He knows that legal issues, while significant, are just part of the picture. "I make every effort to ensure that my clients have access to the best caregiving arrangements that are right for them, especially when a loved one needs continuous supervision," Rothkoff believes.

Today, the business community has also recognized the importance of employees selecting the right caregiving arrangement. Employers see the impact of decrease employee productivity and increased turnover and absenteeism when staff is caring for loved ones after business hours. Several Delaware Valley companies now offer brown-bag seminars for employees to discuss caregiver options, legal and financial issues, and caregiver support services.

Sarah attended the seminar offered by her company. But, the sessions were held a few months after her grandfather had passed away. Sarah still wonders, "would things be different today if I had been more aware of the options then?"