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A guide for children of aging parents addresses such issues as guilt, long-distance caregiving, and monetary concerns
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Claire Berman, a widely published author of books and articles, specializes in writing about the emotional dimensions of relationships. Her other books include Making it as a Stepparent and The Golden Craddle. She has appeared on national and local television and radio programs to promote her books.
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 take each 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 ado...
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