Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive

 
You have to take care of yourself. If you don't take care of yourself, you won't be able to take care of another person.
 
--Dorothy Calvani, former staff nurse in the Geriatric Clinic of New York's Mt. Sinai Hospital, comforting the adult child of an Alzheimer's patient
 
I am that adult child.
 
 

At the time of this writing, I am fifty-eight years old. My mother, Rebecca, age ninety, has been widowed for close to three decades, almost from the age that I am now. She has been suffering from dementia for the last half dozen of those years. It's Alzheimer's disease, according to the many doctors that Mom and I have visited during this time. Of course, they add, only an autopsy can absolutely confirm the diagnosis, which has become irrelevant. More to the point is this overwhelming reality: my mother's in a bad way, and she's slowly getting worse.
 
            My mother-in-law, Hazel, now ninety-eight, suffers from a host of problems resulting from the deterioration of the machine that is her body. Simply, and sadly, the parts are wearing out. You could open a pharmacy with the medication and pills that this frail woman must takeeach day just to make it to the next morning. "Old age is hell," she tells me one day when we speak on the phone. She begins to cry.
 
            Both women were once capable, outgoing, and highly independent.
 
            Now each is widowed, ill, painfully lonely, and very much in need of attention and care. And I? I feel consumed by their situation.
 
            But most of all, I feel guilty.
 
            Guilty because whatever I do for "the mothers" (as I've come to refer to them in conversations with my own grown sons), I know it is not enough.
 
            Guilty because I permit both my sister and sister-in-law ("the saints") to do too much.
 
            Guilty because of my periodic outrage at a much-loved brother when I have felt he wasn't doing enough.
 
            Guilty because I'm healthy and able to go out to the movies and enjoy dinner with friends when my mother sits alone, at night, in her home.
 
            Guilty because I've come to view visits to my mother and mother-in-law as an obligation. (At the same time, I worry that my sons will feel similarly one day about visiting me.)
 
             I also find myself feeling angry.
 
            I feel anger when my mother, who was always neat and well-groomed, insists on wearing the same soiled red woolen jacket day in and day out.
 
            I feel anger when I find myself pressed to respond, once again, to a question that Mom has asked six times within a period of three minutes. (First I feel impatience, then annoyance, then a rising anger. I feel badgered.)
 
            I feel anger when I'm forced to shout because my mother refuses to wear the hearing aids we had obtained after she and I sat through interminable visits at hearing clinics, after we had seen a private doctor, after we had spent a lot of time and a ridiculous amount of money to have the proper aids made. "Talk louder," my mother says to me, to her doctors, to the speaker at the senior center that she sometimes attends. I find my temperature rising when each doctor who newly examines my mother turns to me and advises, "Your mother really needs hearing aids." I feel exasperated.
 
            Then I feel guilt for reacting with anger and resentment.
 
            I feel fear that my mother's condition will grow worse. I am also afraid that, as the disease progresses, I may not be up to the task of providing the quality and level of care that may become necessary.
 
            I feel frustrated when, after successfully arranging for a housekeeper to provide Mom with much-needed assistance two mornings a week, my mother sends the woman away, insisting that she does not need any help. (I feel terribly sad, now, because Mom has moved on to needing, and accepting, the services of a home-care attendant seven days a week.)
 
            I feel frustrated when, each time the issue is raised, my mother flatly refuses to move out of her apartment when my sister has lovingly offered Mom a place in her own home. I feel frustrated even though I know that, in rejecting help, my mother is clutching fiercely to what remains of her independence, her personhood. I also feel that help must come from another quarter. My sister is not well enough to care for our mother on a full-time basis. And I am not prepared to make the commitment.
 
            Which explains, in large part, why I also feel unworthy. "Thank you, thank you," my mother tells me whenever I do the littlest thing, like calling each day to check on her welfare. "How are you?" I ask when she answers the phone. "Now that you called, I'm much better," she responds. "You made my day."
 
            I handle the doctors' visits for Mom because, it's generally acknowledged in the family, I am good at research, at organization. In fact, i feel disheartened by my inability to organize my mother's life, to know what it is that should be done, and then to help by implementing the necessary changes, to make things right for her.
 
            More and more, of late, I have found myself feeling helpless. In the past several months, for example, my mother has taken to asking in our every conversation, morning or evening, on the phone or in person, "So what is there for me to do with the day?" She wants a plan. She wants direction for her life. And all I can do is answer: Go to the senior center; read the newspaper; and (if it isn't too windy or cold out, if I'm not concerned that she will fall) go for a walk.
 
            I feel powerless because I cannot shape her life. And because I do not know, in this situation, what there is for each of us to do.
 
            At times, I find myself wondering not so much whether my mother will make it through a particular day, but whether I will. i feel overwhelmed.
 
            A recent experience serves as an example. I'd arrived at my mother's home to drive her to the geriatric clinic. Despite having phoned Mom the previous evening and twice that morning to alert her to the fact that I'd be coming by, when I let myself into her apartment she expressed surprise at seeing me. She then took a long time getting ready, changing one sweater for another, topping it off with the red woolen jacket, while I grew impatient. An hour's drive lay before us.
 
            Heading uptown on the FDR Drive, a twisty, narrow highway bordering Manhattan's East River, I glanced in the rearview mirror to locate the motorcycle I'd heard. There was no motorcycle in sight. The rumbling sounds were coming from my car. Was it the exhaust? The engine? My concern grew.
 
            All the while, Mom kept up a barrage of questions: Have you heard from your children lately? Where are they living? What are they doing? How is your mother-in-law? Do you think it will rain tomorrow? It looks like it will rain tomorrow. Did you speak to your mother-in-law lately? As I answered each question, my mind centered on the image of two stranded women, one in a red woolen jacket, standing by the side of the highway, thumbs extended, as hundreds of cars whizzed by. When at long last we made it to a parking lot near the hospital, the car was in far better condition than I was.
 
            Nurse Dorothy Calvani greeted Mom warmly. "Hello, Rebecca, you're looking great," she said. She then turned to me. "Your mother looks fine," she said, the dimples in her cheeks deepening with the warmth of her smile.
 
            "Yes, she does," I replied through gritted teeth. "I'm the one who's about to jump out a window."
 
            Dorothy's expression turned serious. "Let's talk," she said quietly, taking a seat beside me in the busy waiting room where white-haired men and women and their caregivers, seated in rows of orange plastic chairs, gazed listlessly at the walls adorned by posters proclaiming the importance of good nutrition and exercise.
 
            Talk we did. I told the nurse about my emotional state. She listened. She didn't criticize. She spoke to me about the possibility of my joining a support group for caregivers. In fact, just talking with Dorothy helped me feel calmer, better. After leaving the clinic, I drove my mother home. The car rumbled even louder on the return trip. Yes, the problem was still there. Only now I felt as if I'd be able to handle it.
 
That is the kind of support that I hope you, the reader, will find in this book. I hope you will feel listened to, enlightened, and supported. I hope it will help you to cope.
 
Knowledge Is Power
 
If you are reading this book, chances are that at the very least you're concerned about your parent's physical or mental condition and wonder if, and how, you should step in. More likely, you're already involved, either providing direct care or directing the provision of care by others. Each time you think you've managed a problem, another one crops up.
 
            When parents reach the point where adult children find it necessary to intervene in their behalf, those same children quickly discover a whole world of knowledge that they must plug into. These concrete issues include such matters as: learning about the specific disability; finding the right doctor; identifying appropriate social services; locating capable caretakers; helping parents manage their finances; dealing with bureaucracies; filling out forms; investigating adult day support services and respite programs; finding a residential facility, and, if necessary, working with a nursing home.
 
            Many books and organizations deal with these issues, and I have found myself turning to them for information as needed. (A suggested reading list appears in Appendix D, page 245.) You will find a great deal of practical information in this book, as well. Because the focus throughout is to help you, the caregiver, care for yourself, it is important to provide as much direction as possible.
 
            "Knowledge is power," says Dr. Lori Bright-Long, geriatric psychiatrist and medical director of the Maria Regina Residence Center on Long Island, New York. She tells caregivers, "If you don't have any strength or energy or you don't know any way that you can face the problems, you will become much more overwhelmed than if you say to yourself, 'Yes, I've got something I can do, I've got some power in this situation.'" Information is one of the most important coping mechanisms you can have.
 
Concrete vs. Emotional Issues
 
Studies have shown, however, that adult children, as a group, are far less distressed by the practical, financial, and physical aspects of caregiving than they are by the emotional aspects. Take the feeling of guilt, for example. It may be the most pervasive of all among the population of caregivers--even the most devoted of whom find reason, at times, to ask themselves: Did I do enough? All too often, they answer in the negative.
 
            My friend Ellen, fifty-four, unquestionably qualifies for inclusion in the "most devoted" category. After her eighty-four-year-old mother, Sophie, was operated on for removal of a malignant uterine tumor, with chemotherapy to follow, Ellen took a leave of absence from teaching in order to move in with the older woman and care for her. Ellen shopped, cooked, and played endless rounds of rummy 500 with her mother.
 
            One day, as Sophie was walking out of the bathroom, she stumbled, fracturing her right arm, which she'd thrust forward to break her fall. I should have been there, Ellen repeatedly rebuked herself, even though she'd been standing in the kitchen, only a few yards away, when the accident occurred. Ellen felt as culpable, perhaps even more so, as the son or daughter who lives at a distance from an aging parent and has to find out in a phone call from the parent's neighbor that Mom or Dad has fallen and been taken to the hospital.
 
            Those who care for aging parents would do well to accept that there will always be some amount of guilt. The point is, guilt happens. Anger happens. Frustration happens. Depression happens. Weariness certainly happens. The trick is to make much of the good moments, also, when they happen, for in caregiving there can also be moments of closeness, moments of sharing, fleeting moments of exchange or understanding, moments in which love also happens.
 
Who Is a Caregiver?
 
Anna H. Zimmer, formerly director of the Mutual Aid/Self Help program of the Brookdale Center on Aging at New York's Hunter College, defines caregiver as "someone who is involved in helping someone else manage to carry out the tasks of living." In a normal situation, for example, the parent is caregiver to the young child, who needs help with multiple tasks in learning to negotiate his or her way in the world. The turnaround, which we consider here, centers on the parent who has grown older, frailer, and more dependent, and on the shift that takes place in family relationships when you find yourself caring for the mother or father who once cared for you.
 
            Adult sons and daughters fitting the caregiver description include: the daughter who lives halfway across the country, hires a geriatric care manager, and places a weekly phone call to her ailing father; the son who goes in once a month to balance his mother's checkbook; the daughter who does all the marketing or who arranges for, and oversees, the hired attendant; the daughter-in-law who chauffeurs her father-in-law to his adult day-support program; the daughter who pays regular visits to the nursing home where her mother now resides; and the adult child who shares a home with the frail elderly parent, providing round-the-clock assistance so demanding and debilitating that it is often referred to as "the thirty-six-hour day."
 
            Amy Horowitz, D.S.W., senior vice president of research at Lighthouse International, conceptualizes caregiving behavior as falling into four broad categories: emotional support; direct service provision; mediation with formal organizations and providers; and financial assistance. Sharing a household, which she lists as a special form of caregiving, might encompass all of the above.
 
            Research has consistently shown that, in any family, one member occupies the role of primary caregiver--the relative to whom the older person turns for assistance when needed and who actually provides the most help. More often than not, that role is filled by the less-impaired spouse (when present) until the burden becomes overwhelming. Then, it is taken over by the adult sons and daughters.
 
            Geriatric care manager Nick Newcombe observes, "Sometimes just one sibling is doing the actual toileting, changing, bathing, financial management, all of that, and the other sibling is clear across the country, trying to be supportive or, in some cases, seeming to remain uninvolved. Still, it can be very hard for the passive caregiver to deal with his own emotions. The active caregiver can at least work out the relationship with the parent on a daily basis."
 
            Active or passive, we are fast becoming a nation of caregivers. And our numbers are legion.
 
 
We live at a time when there are so many older people, the term "aged" itself has had to be subdivided into "young old," "middle old," and "old old." Many of us, as we grow older, are fortunate enough to have our parents with us for a very long time. The pleasure of having parents around to continue to share in our lives is evident, especially when the elder parent remains alert, able, and active, as is so often the case.
 
             One of my acquaintances recently traveled to Europe with her mother, a woman in her nineties. Another friend continues to enjoy a round of golf with his father, who is ninety-two and still goes in to work every day. And the father of yet another acquaintance just celebrated his eighty-fifth birthday by remarrying and heading off on a honeymoon cruise with his seventy-nine-year-old bride. Clearly, many older people lead productive, active lives. May we all be thus blessed.
 
            But the fact is that the preponderance of stories about parents that I hear from my contemporaries, and from people who straddle both sides of my decade, has to do less with accompanying Mother to Paris than with arranging for Mom to see yet another doctor, to take yet another medication, to make it through yet another day. The challenge of longevity is that it is often accompanied by serious ailments, such as memory disorders, malignancies, and chronic diseases. Many of us find that our older parents need our help not just occasionally but on a continuing basis.
 
A Nation of Caregivers
 
Although the reality of the aging of America is well known, a look at some actual statistics serves to present a clearer picture of the magnitude of the challenge we are facing. In August 2000, there were about 35 million Americans over the age of sixty-five. According to the U.S. Census Bureau, that number is expected to more than double, to about 77 million people, over the next forty years. The population of people eighty-five and older, now more than 4 million, will more than triple, to over 11 million. Some 66,000 of our citizens have celebrated the one-hundredth anniversary of their birth. If current demographic predictions are accurate, more than 800,000 Americans will be one hundred years or older by 2050. "This raises many questions about how our communities, our congregations, and our health care system should be revised to meet the needs of our aging society," says Dr. Richard Payne, a physician and director of Duke University's Institute on Care at the End of Life. "Centenarians have become the fastest-growing segment of the population among the industrialized countries," according to Leonard W. Poon, director of the gerontology center at the University of Georgia. All of this has led The Economist magazine to declare, "A new human age, the super-old, is fast becoming reality."
 
            People are not just living longer; they are living longer with disability. Failing hearing and eyesight are but two of the issues that plague the old and require them to seek assistance. Failing memory, especially after the age of eighty-five, is particularly devastating. Medical advances are keeping alive people who in another time would have died quickly of cancer, stroke, or heart attack. Nowadays, we lose our parents bit by bit.
 
            What we're looking at is a society in which people of middle age as well as the "young old" increasingly are seeing to the needs of the very old and the super-old. According to a 2004 study by the National Alliance for Caregiving and AARP, 32 percent of family members caring for aged and ill people are between the ages of thirty-five and forty-nine, while another 43 percent are aged fifty and older. That's a far more complex picture than the popular image of caregivers, by and large, as members of "the sandwich generation"--men and women who are weighed down by the needs of children on the one hand and parents on the other. Reality requires a broader frame to accommodate a larger group of people, including the wife who is torn between spending time with a retired spouse and caring for a frail, dependent parent; the working person who juggles job demands with filial obligations (over 26 million family caregivers in the United States are now struggling to manage work and elder-care responsibilities, according to the NAC); childless spouses; single men and women; "children" facing the assaults of the process of their own aging. We caregivers are members of a very large family.
 
 
This book introduces women and men who, like you, are struggling with the challenges of parent care. Their stories and their insights, born of experience, make up much of the material. Although I have changed the names and clearly identifying descriptions of the people I interviewed, I have retained their wisdom and their own words throughout.
 
            The questions I asked of them had to do with their own work and family situation, their parents' situation, the caregiving role, its effect on home and work obligations, support and stress in the sibling situation, present and past history of the parent/child relationship, feelings of loss and mourning, financial matters, and more, so much more. And always, in every interview, I sought to find out: What program or person has been most beneficial? Who and what has helped you to cope?
 
            Not surprisingly, the answers varied widely. The daughter or daughter-in-law whose own children are in school and who drops in daily on Mom is faced with different pressures than the single woman who lives several states distant from her mother and cannot take time off from work to make frequent visits. The son or son-in-law assisting a housebound parent faces different concerns than the adult child whose parent is able to get out of the house but may not remember the way back home. The type of disability, financial circumstances, geography, cooperation among siblings . . . these are just some of the many factors that make each caregiving challenge, and response, unique.
 
            Within this variety, however, one is startled by how often the same experiences are repeated, the same feelings are described. In hearing others' stories, in listening to the men and women I met in support groups and to those who took the time to share their experiences with me, time and again I found myself thinking, This is how I feel, too; this is what I am going through. The recognition that one is not alone, the knowledge that certain deeply felt responses to events and circumstances are shared, that they are normal, can be therapeutic. I return to these voices time and again when I am in need, and hope that you will, too.
 
            I have spotted the accounts throughout the narrative. Not surprisingly, the story lines frequently intersect, falling under more than one category. For example, a person who's a supercaregiver (see chapter 1) may also carry the burdens of an only child (chapter 4); a long-distance caregiver (chapter 5) may also be experiencing some tension in dealing with his siblings (chapter 3). I have placed the various case histories where it seems to me that they best fit, knowing that there will be a certain overlap. As you use this book, please do not pass up the sections that seem not to relate to you. They may contain suggestions, and solutions, that will ease your way during this time.
 
            Daughters are more strongly represented among the caregivers you will meet here. This is true for society as a whole, where more than 60 percent of informal caregivers are female. Researchers explain this difference by citing women's traditional role as nurturers; their stronger emotional ties to the family of origin; and their availability to provide care. (This is becoming less the case as more women enter the workforce.)
 
            Men who take on the role of primary caregiver tend to be those who are only children, or who have been raised in an all-male household, or who live geographically closest to the parent. Studies show, however, that when a family has only sons, the daughter-in-law is much more likely to take responsibility for reliant elders. Other family members, if involved at all, play secondary roles.
 
            You'll also find mothers outnumbering fathers among the frail elderly people whom you meet in these pages. This, too, is the general case. It rests on several factors, among them: women tend to live longer; they marry men older than themselves, and care for them when they become ill. Women are also less likely than men to remarry following the death of a partner, with the result that their care is more apt to fall to adult children or other relatives.
 
Finding Peace with Yourself
 
The time spent in caring for an aged mother or father, the intimacy imposed by the arrangement, forces many of us to confront feelings that have lain dormant for years, perhaps decades. "Sometimes you love someone and do not tell them," says a daughter whose mother was disabled by a series of strokes. "Caring for my mother allows me to show her how much she matters. It is my chance to give something back."
 
            Others whose relationship with a parent was not quite as close use this time to gain a better understanding of, and improved relationship with, a parent. I believe that this is one result of the time I am now spending with my mother. In caring for her needs, I have come to care more about her as a human being, and as my mother. In some perverse fashion, I am glad to have been given this chance.
 
            And then there are adult children, like Wilma, who rail against the situation they now find themselves in. At age fifty-two, Wilma drops in daily on her eighty-four-year-old mother, who suffers from Parkinson's disease. (A health care aide stays with the older woman at night.) "Whenever I'm with my mother, a self-centered woman who's always been more interested in herself than in me, I find my throat constricting and I have trouble breathing," Wilma says, "and yet there I am, dancing attendance upon her as always. You'd think that at this stage of my life she would no longer have this hold on me." Wilma's anger is debilitating and must be addressed. Joining a support group and seeking professional counseling are two actions that Wilma should consider in order to survive her mother's illness.
 
            Reconciliation between parent and child is not always feasible. Resolution is another matter. This book speaks to the importance of resolving the relationship with a parent. Resolution enables the adult child to do a responsible job, to delegate certain tasks, and to move forward toward his or her own future with the increased self-respect that comes from knowing that you did the best you could. That is all we can ask of ourselves.
 
            Caring for an aging parent is a balancing act. The primary intent of this book is to help you, the caregiver, come away with the confidence and tools that make it possible to achieve a workable, livable balance between meeting your needs and addressing the needs of your parent. There's just no getting around it: If we are to successfully manage the care of our parents, we have to learn, first of all, to care for ourselves.
 
Copyright 1996, 2001, 2005 by Claire Berman