A thoroughly revised edition of the authoritative guide to caring for aging parents
For women and men who are involved in caring for aging parents, and for those who see caregiving in their future, this empathetic and practical book offers complete coverage of all the practical issues you are likely to confrontwhile addressing the emotional stress and particular needs of caregivers. Claire Berman, drawing on her own experiences, the experiences of many other adult children, and interviews with specialists in the geriatric field, discusses the wide range of emotions that can accompany caregiving.
This completely updated edition includes
• new discussions of the Internet as a tool for seniors
• new sources of prescription drugs
• information about emergency response systems
• recommended exercises and exercise videos and adaptive clothing
• an extensively revised resources section
In a wise and compassionate voice, Caring for Yourself While Caring for Your Aging Parents teaches you everything you need to know to help your parents through the stressful and humbling challenges of aging.
"A compassionate book that offers support for the caregiver, plus solid advice on how to fulfill your parents' needs without turning into a martyr." Horizons
|Publisher:||Holt, Henry & Company, Inc.|
|Edition description:||Third Edition|
|Product dimensions:||5.50(w) x 8.50(h) x 0.62(d)|
About the Author
Claire Berman specializes in writing about the emotional dimensions of relationships. Her other books include Making It as a Stepparent and The Day the Voices Stopped (with Ken Steele). She has appeared on national and local television and radio programs to promote her books.
Read an Excerpt
Caring for Yourself While Caring for Your Aging Parents
How to Help, How to Survive
By Claire Berman
Henry Holt and CompanyCopyright © 2005 Claire Berman
All rights reserved.
Supercaregivers: Struggles and Successes
As other children grow up with fairy tales, I spent my early years listening to family stories about Bubbe Rachel, my father's mother, who made her home with my parents from the day they were wed until the day that she died, some fifteen years later, in my first year of life. As recalled for me by my parents and older siblings, my bubbe was a wonderful woman: straight of stature, sage, caring, and supportive. It was Bubbe Rachel who taught Mom how to run a house and manage three children. My mother's face lights up today at the mention of her name. When my grandmother began to fail, this same family she had cared for so lovingly was there to return the favor.
My husband tells me about his maternal grandfather, Grandpa Nathan, a widower who made his home with three unmarried daughters. The women prepared his meals, gave him his medication, saw to it that he had his newspaper at the ready, and otherwise made it possible for the older man to spend his afternoons sitting outside, talking with his cronies. In the once-upon-a-time that is our heritage, such dedicated caregiving was unremarkable.
It is not uncommon today, as well, but the pressures of modern life seem to be different and the provision of care more complicated than in times past. As has been noted, women (the traditional caregivers) have joined the labor force in great numbers. Children grow up, move away, and live at a distance from their parents. Furthermore, our parents live longer with debilitating illnesses. The wonder is that so many adult children continue to make such extraordinary commitments to their parents' care, often at the expense of self-care.
This chapter introduces you to the supercaregivers, to their struggles, and to the ways that some have found to lighten the burden.
Meet Joel and Sharon Stayman
"Had we realized then what we know now, we probably would have done things differently. We would have found some other way to care for my father-in-law than to have him come live with us."
The speaker, Sharon Stayman, is a comely woman in her mid-fifties. She sits next to her husband, Joel, who looks younger than his fifty-seven years, in the sunlit family room of their split-level house outside Philadelphia. The home has the cared-for, orderly appearance often found in households where the children have grown up and moved out.
On the mantel over the fireplace are framed photographs of the Stayman family: a bridal portrait of their daughter, Dena, and her husband, Brian, taken five years earlier; son David at his college graduation two years ago; their two-year-old granddaughter, Michelle, smiling from the confines of a backyard swing; sepia-tinted portraits of Sharon's late mother and father. To the right, in a silver frame, is a picture of Ben, Joel's father. Ben moved in with this family when he was seventy-five and was cared for by them until his final illness ten years later.
The arrangement was arrived at by agreement, not design. A victim of severe vision loss, which affects almost 3.5 million Americans aged sixty-five and older, Ben suffered from age-related macular degeneration; legally blind, he had only peripheral vision left. Over the years, as his sight diminished, he had come to rely more and more on his wife, Helen. When she died, he grew panicky at the prospect of having to manage on his own. "I take cheese out of the refrigerator and don't know if it's spoiled or not," he told his son Joel. Nor could his sense of smell alert him, since it was not much stronger than his eyesight.
For more than a year after becoming a widower, Ben roomed with another man, but would spend every Thursday, Friday, and Saturday with Joel's family. (Sharon cooked meals to last him the rest of the week.) Then, following a gallbladder operation, he went from the hospital to their home to recuperate; while there, he asked to remain permanently. "The way my father looked at it, family has got to take care of family," says Joel.
"So that's just how it had to be," adds Sharon. "We had no choice." And so Ben and his children became part of a growing statistic: one out of seven people over the age of sixty-five lives with a son or daughter; for those eighty-five and older, that number is much higher; for women it is higher still. One out of every four women over the age of eighty-five lives with an adult child.
Should a Parent Move In with You? Some Considerations ...
The decision to have elderly parents move in with adult children must be made cautiously and after a lot of planning, say the experts. Several factors should be considered, chief among them the often complicated preexisting relationship. If, based on past experiences, there is ill will between parent and child or if there's a problem with communication, living together is likely to create added stress. A different arrangement should be considered for everyone's sake.
Another factor in considering whether to bring a parent to live with the adult child has to do with how long the parent has resided in his or her home or neighborhood, and the support system that exists where they are. Loneliness is a big problem for the elderly, who frequently do better where they can continue to see old friends and neighbors. Also important to their well-being are familiar places: the house of worship where they've traditionally gone to seek comfort; the local bank; the tailor or shoe repair shop that they've patronized for years. Doctors Amy Horowitz and Barbara Silverstone have written about people "aging in place," meaning that they grow old in the old neighborhood. For many elders, the gerontologists point out, familiar surroundings often become one's security.
* * *
The Staymans gave little thought to such matters and believe now that they all would have fared better if there had first been some discussion, some deliberation, about the advisability of the move. "In hindsight," says Sharon, "I think we should have arranged to bring in someone who could help care for my father-in-law in his own apartment. Relocating to our home separated Pop from all his friends and isolated him, and that was bad for him."
Privacy became an immediate issue for the family. For one thing, the home they then lived in — a compact ranch of the kind that real estate agents generally refer to as a "starter" house — was a snug-enough fit for two parents and two growing children. (Dena was nine and David six and a half when their grandfather came to stay.) It could not accommodate another adult, especially one who was in constant danger of tripping over the children's playthings, and who needed quiet and care. "We considered building out," Joel says, "but decided instead to move to this split-level home because it had a den that we could convert to a bedroom and bathroom for my father. We needed our own space and closed doors, and so did he. Pop paid for the renovation."
Creating an Elder-Friendly Environment
In setting up the elder apartment, Sharon and Joel included a number of safety measures — the kinds of precautions that make sense regardless of whether a parent lives with you or remains in his own home. They installed wall-to-wall industrial carpeting (no throw rugs, no shiny wooden floors) to minimize the danger of a fall. They also installed handrails in the hallway leading from the bedroom to the bathroom as well as in the space connecting the older man's apartment to the family's living quarters. With these extra supports, he could navigate his living space with greater ease. (If there are stairs in your parent's home, try to place handrails on either side.)
The bathroom came in for special attention. They placed nonslip strips on the bathroom floor and a nonskid rubber mat inside the tub. Grab bars were installed near toilet and tub, and a set-in-place shower rod was used instead of a suspension rod. They also hung a liquid soap dispenser next to the tub enclosure so that Ben would not have to fumble with a bar of soap. ("My father groused about that for a while," says Joel, "mostly because it was unfamiliar, but we just told him he would grow to like it. It was okay.") They made sure that the lighting was bright.
"Pop wasn't a person who cooked for himself," says Sharon, "so we didn't do much about safety-proofing the kitchen, but we did buy some plastic dishes and cups and placed them on a lower shelf for ease of access. In short, we did the best we could."
(Information on how to safety-proof an older person's home is found at www.aarp.org. Look under "Care and Family." You'll also find referrals to certified aging-in-place specialists in your area.)
Even with the new living arrangement, privacy became a remembered luxury for Joel and Sharon. Their daily life now had an audience. Their free time was circumscribed. They took to having friends in because it was just too hard to arrange an evening out. When people visited, however, Ben invariably would join the gathering, nodding off as the evening wore on. Their friends would leave early. In desperation, the young couple set aside Saturday night as a time apart. No matter what, they decided, they would go out and do something together. "Saturday nights are what saved our sanity," says Sharon.
It was not, however, salvation without cost, for on Saturday nights the kids would be home with their grandfather, whose child-raising philosophy differed sharply from their parents'. Joel says, "We'd come home to find my father sitting up in his pajamas, waiting to tell on the children: 'Dena watched too much television' ... 'David didn't want to go to sleep. He's still up.' Pop wouldn't yell at David. He would just sit there. Our son kept asking us, 'Why doesn't Grandpa go to sleep?' He felt guilty that his grandfather was staying up because of him. It became a stressful situation."
During the week, Joel, an accountant, was hardly ever at home. To make ends meet, he juggled several jobs and would often see clients in the evening. The major responsibility for Ben's care and social life fell to Sharon, a former editor who now found herself busier than ever as a homemaker and full-time caregiver.
"I'm the one who would take Pop for a haircut, I would take him to the doctor, I'd take him for everything," she says. "I was his maid, his chauffeur, his company keeper. I felt I had no life of my own, and I was unable to go out and find one. At times, I would complain to Joel about being tied down, being unable to go back to work, which would have been good for my sanity and our finances.
"Then, when I'd find myself feeling most resentful, I would look at this gentle man and feel guilty because, with it all, there were some very special times, some very warm moments between us. These were the afternoons when the kids were in school and Pop and I would sit together and talk. I'd ask him about his childhood, and he would tell me wonderful stories. We had a rapport, he and I. You can't spend all that time with someone without growing very close. And we did."
When Siblings Don't Share
"Sharon was the good person, and I became the bad one, because I wasn't around very much," Joel says. "But best of all in Pop's estimation was my brother, Harry, because he placed a phone call once a week." Mention of Joel's brother serves as a signal for Sharon to get up and go into the kitchen. It's as if she still needs to place some distance between herself and the subject.
"Harry is a history professor who lives with his wife and three sons in Durham, North Carolina," Joel explains. "Five years older than I am, he was always a school ahead of me. When I was in high school, he was in college. When I was in college, he was in graduate school. I got the feeling that he always felt a bit superior to me ... which I could live with, except that he and I had a mother and father in common, and the father happened to require a great deal of care. Harry would call once a week, and Pop would come away from the phone glowing."
The absence of brotherly support brought additional strain into the Stayman home, with Sharon being the principal protester. "I grew up as an only child," she says, returning with a fresh pot of coffee. "I always thought it would be wonderful to have a sister or brother, someone who could be there to support you, who would be your closest friend. But here was Joel with all the responsibility, and his older brother did practically nothing and offered to do nothing. That hurt."
There came a time when Joel didn't wait for an offer. "The whole family needed some respite if we were going to keep our sanity," he says. "So I phoned my brother and I told him, 'It's our anniversary and we're going away. I'm putting Pop on a plane and you have to be there to meet it.' I initiated the visit, I was firm, and it became a precedent. From then on, Pop always stayed with Harry for two weeks in December and again for two weeks in the summer when we would take a trip with the children. That was really important."
Geriatric psychiatrist Lori Bright-Long confirms the importance to caregivers of coming out and asking for the help that is needed. She explains, "Often people never even ask for help. Instead, we retreat into magical thinking when it has to do with family relationships. We think, You ought to have known that I needed help with Mom, and then feel resentful when the help that we wish for isn't forthcoming. If we do ask for help, we're vague about what we need. People say, 'I need help,' when they ought to say, 'Hey, I need you to watch Mom on a Saturday while I go out and do something' or 'I need you to chip in some bucks each month because I know you can't come in from Poughkeepsie to help out, and I have to hire someone.'
"The sibling who lives farther away, or the one who's not as emotionally involved, really doesn't know what kind of help you need," she continues. "The caregiver has to ask for help and be specific. If you state concrete needs, often people will come through." (For a further discussion of sibling relationships, see chapter 3.)
Joel also busied himself with finding aids that would help his father live a fuller life. Tape recorders, talking books, anything that would let some light into the older man's narrowing world was researched and obtained. Learning about an illness, learning what's out there that can enrich the patient's life, provides the parent with help and the caregiver with satisfaction.
But more was needed to enrich the quality of Ben's life. Sharon spent days, weeks, months driving her father-in-law the length and width of the Philadelphia suburbs, looking for a golden-age club, a senior center, some place where Ben could find age-appropriate companionship. "And none of them clicked," she says. "Pop always found fault, whether it was the basket weaving, the card playing, the fact that he couldn't see, whatever. 'Not for me,' he would say, and that would be the end of it."
The Importance of Finding the Right Program
"Then this group started up in a church two townships away," she continues. "It was an adult day-support program for the frail elderly. It was run by a social worker. It had an activities director. There was one volunteer for every two or three clients. It was designed to meet the needs of individuals who required a structured environment and some assistance, but were too independent for nursing home placement. If Pop had to go to the bathroom, one of the volunteers would escort him to the john and wait outside for him. He was getting all this attention, and it was perfect.
"We had not realized that the senior centers were not for him," she explains. "He needed a group designed to meet the needs of the frail elderly. Eventually, the church got a bus and driver and could pick Pop up, so I no longer had to drive back and forth to the center daily. Pop was now taken care of weekdays, from one to four. It was wonderful for him. For me, it was a blessing."
Finding the day-support center opened doors to other supportive services. "What do you do when you have a wedding to attend, and you can't leave your father at home?" Sharon asked the center's director. "What do you do when you want to drive your child to her first day of college and you need someone to stay with your father?" The Staymans learned about a help registry run by the church, which maintained a list of responsible caregivers, a number of whom were willing to stay overnight. "Pop didn't much like the idea of being left with a stranger. But eventually he complained less, and we turned to the registry more. It wasn't cheap, but it was a godsend."
Making contact with a reliable agency, hiring people who are willing and able to relieve the supercaregiver when necessary, is essential, not extravagant. The edict that "family takes care of family" should not require of family members who subscribe to it that they do it alone.
The center also offered weekly support groups for caregivers. "We really needed that at the time," says Sharon.
Joel explains, "Pop suffered a number of ministrokes, or TIAs [transient ischemic attacks]. He became very distrustful and difficult to deal with. There were constant questions from him about his finances, which I'd managed for years, keeping scrupulous records of each and every transaction. Now he took to asking repeatedly, 'What is the balance?' I would tell him. Then, as soon as Sharon and I were out of the house, Pop would ask Dena to look at the bank statement and read him the balance. He was checking up. I didn't appreciate it."
Excerpted from Caring for Yourself While Caring for Your Aging Parents by Claire Berman. Copyright © 2005 Claire Berman. Excerpted by permission of Henry Holt and Company.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Preface to the Third Edition,
1. Supercaregivers: Struggles and Successes,
2. Helping Yourself and Helping Your Parent,
I. The Support Group,
II. The Internet,
III. The Adult Day-Support Center,
IV. In-Home Care,
3. Stress Among Siblings — Ways to Manage It,
4. Going It Alone: The Only Child,
5. Long-Distance Caregiving,
6. Focus on Finances: Reality and Emotion,
7. Making Decisions for Your Parents,
8. Loss and Mourning,
9. Keeping the Focus Clear,
10. The Nursing Home Alternative,
11. End-of-Life Decision Making,
12. Who'll Be There to Care for Me?,
A. Caregiver Bill of Rights,
B. State Units on Aging,
C. Caregiver Organizations, Information, and Resources,
D. Suggested Reading,
Also by Claire Berman,
About the Author,