When Parents Need Care
(Woman’s Day)

From the Editor, Jane Chesnutt

An unusually large number of features in this issue have personal significance to me... The piece that speaks to my heart, though, is Claire Berman’s “When Parents Need Care”. My mother’s mother lived with us when I was growing up, and for the most part I have happy memories of that time. But as Grandma grew older and more infirm, problems developed, and throughout my teens I watched my mother struggle painfully with three of the six issues Claire covers. It took a huge toll on my mother—and on the rest of us. There are no easy answers, and I suspect the Woman’s Day of 100 years from now (whatever form it’s in) will have articles on this very subject. But to my mind, there’s no one better than Claire—who’s written and lectured extensively on this subject—to help you deal with these tough questions. Many of you are, or will be, coping with what my mother went through. I only wish Mom had had a piece like Claire’s to read, and I hope what she says will make a difference to many of you.

When Parents Need Care
Ways to cope with their needs—without losing sight of yours

“Your mother has Alzheimer’s disease.” As I listened to the doctor say those words, I sat stunned. Not my mother. Yet the diagnosis explained Mom’s periodic dizziness, her increasing forgetfulness and dependence on others to make decisions for her.

In the weeks that followed, I found myself paralyzed by fear of the illness and by a lack of knowledge. I didn’t know what was necessary to enable my mother to manage her life. Mom wasn’t the only one who needed help; I did, too.

Looking for answers to my questions, I researched and wrote a book, Caring for Yourself While Caring for Y our Aging Parents, which led to my speaking about the issue on television, radio and before groups across the country. I had struck a common chord. Nearly one in four households in this country is involved in caring for an aging relative, according to a survey by the National Alliance for Caregiving and the American Association for Retired Persons.

In talks with caregivers, I am struck by the similarity of people’s concerns, the way certain problems are continually raised in almost identical language. Here, some of the most frequently asked questions, along with suggestions for coping.

How do I deal with my feelings of guilt?

“I’m in a role reversal and I don’t like it,” says Marion Crawford, 60, whose 80-year-old mother, Johnnie Mae, is a diabetic and has heart disease. “I’m my mother’s social director, secretary, chauffeur and nurse,” says Marion, who lives 10 minutes away from her mother’s home in Inglewood, California. “I resent not having time to spend with my husband, but then I think ‘how would I feel if Mother were not here?’ and feel guilty about my resentment.”

Of the many emotions caregivers experience, guilt is the most pervasive. Guilt, if you’re in the kitchen preparing lunch and Mom slips on her way to the bathroom. Guilt, if you respond sharply to a question that’s been asked at least six times in half as many minutes. You’d do well to accept that there will always be some guilt. Other suggestions:

  • In dealing with my own mother, I’ve found it important to realize what I can and cannot do, and have put in place people and programs that can help her when I can’t. Do I still feel guilty sometimes? Of course. The trick is to acknowledge my feelings, make sure Mom is OK, and move on.
  • Change your thinking. Instead of feeling guilty about not doing everything possible for your parent, says Lisa P. Gwyther, M.S.W., at the Duke University Center for Aging in Durham, North Carolina, tell yourself:
    • I did what seemed best at the time.
    • My choices have been, and continue to be, limited.
    • If I had selected another course of action, I might be having doubts about that as well.

How can I manage long-distance caregiving?

Debra Bard, 45, struggles to meet the needs of her father, Bill, 82, who has stomach cancer and is legally blind, and her mother, Rose, 78, who suffers from spinal stenosis, a condition that makes walking difficult. Although they have a 24-hour attendant, the New York City couple still rely heavily on their daughter, who lives in Los Angeles. “It’s a tremendous responsibility,” says Debra.

Debra shuttles from coast to coast to find them doctors and homecare workers, and remains uneasy about the situation. Countless Americans face the challenge of providing care from afar.

“The major concern is that the long-distance caregiver cannot possibly meet unscheduled needs, while the problem with frail, older people is that they have unscheduled needs,” says Gwyther. Still, there are steps you can take:

  • Schedule a visit home and plan to stay awhile. You need to understand what the problems are.
  • Learn what services are available in your parents’ community. Use the phone directory or call the Eldercare Locator at 800-677-1116. Call associations on aging, religious and community institutions, and relevant disability groups. Ask about day-support programs and transportation services. Keep records and make follow-up calls.
  • Build an informal support network. Contact your parents’ relatives, friends and neighbors and explain the situation. Let them know they can call you.
  • Consider hiring a geriatric care manager. A licensed social worker, psychologist or nurse who specializes in assisting older people can arrange for in-home care, review financial or medical issues, provide crisis intervention and act as a liaison to faraway caregivers. For information, call the National Association of Professional Geriatric Care Managers at 520-881-8008.

What should I do when my parent says “No”?

“Dad’s ninety and Mom’s eighty-six. He uses a cane, she has a walker, but they won’t move out of their home,” says Vicki Blaho, 52, of Los Angeles. “Worse, Dad refuses to stop driving.” It’s a common dilemma. “Older people may view help as an assault on their independence and dignity,” says Anna H. Zimmer, M.S.W., at Hunter College in New York. Try this:

  • Put the request in terms of your needs. Try saying, “I want someone in your home for my peace of mind.”
  • Identify allies. If Dad won’t stop driving, get the eye doctor to say, “I no longer approve of your driving.”
  • Evaluate safety. Recognize the difference between disorder and danger. If the oven is not turned off, you need to take action.
  • Accept risk. Remember that you simply cannot solve every problem for a parent.

How do I handle conflicts with a brother or sister?

When a parent starts to fail, some siblings draw close in shared distress. Others take their grief out on each other. Ilene Schwarz, 51, of Ossining, New York, felt overwhelmed as she watched her 73-year-old mother, Pearl—“my best friend”—slide into dementia. “I asked for more help from my sister,” says Ilene. “She said she’d have to check her schedule. She wasn’t supportive in the ways that I needed.” The sisters had words and are no longer speaking.

No one wants the legacy of a parent’s last days to be the dissolution of a family. Leonie Nowitz, M.S.W., a family therapist in New York City, offers ways to improve strained relationships:

  • Keep the dialogue alive. You might say, “I’m feeling overburdened. Can we talk about this?” You may not be aware of the pressures they’re facing.
  • Be willing to accept what the other person is able to do, not what you want them to do. If you need more assistance, look for it in the community.
  • Try not to get into power struggles. It’s important to realize that there is more than one way of looking at things. Be open to suggestions.
  • If discussions tend to become disagreements, put your thoughts in writing. Be factual, not accusatory, and always invite a response.
  • If arguments persist, consult a social worker, minister or rabbi.

How do I raise the subject of my parents’ finances with them?

“After my father died, the bills weren’t being paid, but Mom would not let me look at her checkbook,” says Alice Hayes, 56, of Peekskill, New York. When Alice learned her mother had Alzheimer’s, she stepped in. “Taking over has been painful, but necessary.”

Money is both a practical and emotional issue in family life. And so, for as long as possible, many of us—parents and children—walk around it. That’s a mistake. “Financial discussions should take place when the parent is competent and mentally alert, before there’s a need for intervention,” says Daniel G. Fish, a lawyer and past president of the National Academy of Elder Law Attorneys. Try the following:

  • Have a general knowledge of your parents’ finances. Is there enough to maintain the parent if he or she becomes chronically ill or disabled?
  • Know where important documents are kept. Locate mortgage statements, insurance policies, deeds and wills, so that if you have to step in, you can do so efficiently.
  • Encourage parents to sign a durable power of attorney. This is a document that designates someone they trust to manage their finances if they become disabled. It can save both time and money if illness strikes.
  • As long as parents are capable of making choices, they should manage their own affairs. If they are no longer competent, consider consulting an attorney or money manager specializing in elder care about how to manage your parents’ assets or arrange for Medicaid.

How can I face the nursing home decision…and still face myself?

Like many caregivers, MaryAnn Costigan, 52, of Levittown, Pennsylvania, refused to consider placing a family member in “an institution.” She had cared for her mom and sister in their final illnesses, so when her dad, Frank, 85, began to suffer from Parkinson’s disease and dementia, MaryAnn moved him in with her. Two years later, her dad’s doctor persuaded her to put her father in a nursing home.

“Many people wait too long to consider placement because they’re in total denial about their parents’ situation,” says Seth B. Goldsmith, Sc.D., J.D., CEO of the Miami Jewish Home and Hospital for the Aged. “Moving a parent into a home doesn’t have to be a defeat if you’ve done your homework and found a good place.” The best time to find a home is before it’s necessary.

  • Visit several places in your area and in your parents’ community. You may find a major difference in cost based on location.
  • Evaluate the center. Does it give you an institutional or homey feel?
  • Are residents dressed in hospital garb or in their own clothes, which helps them maintain a sense of pride and self-identity?
  • Speak to residents or their visitors. Ask about the day’s menu or schedule of activities. You can learn much from their evaluations.
  • Pay attention to how staff members interact with the elders. Do they address people by name—Mrs. Jones or Mary—or do they call everyone “Honey”? Are they warm? Courteous?
  • Speak to the administrators. Find out if the home is certified to participate in Medicare, Medicaid or both. If religious services are important to your parent, ask about their availability.