My mother took the best years of my life. When I was 39 years old, and she 69, she announced quite matter-of-factly during my visit to her home in Worcester, Massachusetts, that she now knew how she would cope with her recent first heart attack: "I'm moving in with you." It was a simple declaration; not really open for discussion.

The year was 1976. I was married and living in New York City in a small apartment with my husband and l0-year-old son. I visited her frequently in Worcester, where she had lived all of her life. It was also the house I associated with "home" even after I married. Living in New York City where my husband had his business and my son was going to school, I always felt quite lucky to be able to return to Worcester. My mother had provided our get-away vacation house, and we would go there whenever we wanted to escape the noise and heat of New York City. Evan, my young son, had enjoyed years of non-city living there and summers at Cape Cod.

My first thought after my mother's blunt announcement was, "Where would we go now?" It's funny how the most picayune thoughts clutter your mind when momentous things are happening. When my father died of a massive heart attack in 1948, I was only 10 years old; and although I adored him and would miss him terribly in the years to come, my first question to my mother was, "Well, who's going to feed us now?" I meant the question quite literally since he had been the cook in the family. Every weekend while my mother did housework, he did the cooking, preparing the most sumptuous meals.

I remember how alarmed and irritated my mother was with that question. "What's that got to do with anything?" she snapped, no doubt preoccupied with her almost unbearable loss. Now again, when my life was about to be turned upside down, I was asking another seemingly irrelevant question: “But what will we do for a vacation home?” When the shock of what we were both saying to each other ceased to reverberate, my mother explained what was behind her epiphany. "I probably will live only another year or two considering my ill health, and since you have an extra bedroom in your apartment, I'll move in with you. Why shouldn't I spend my last years helping my daughter? I’d rather save my money and give it to you.”  This declaration was coming from a woman who had vowed to all her friends that she would never, ever live with either one of her two daughters. "It would put too much of a strain on them." When I think back on this episode in my life, I wonder why I never thought to suggest another housing alternative. I think that I, too, believed she would not live that long. And how could I deny the poor woman her last request? When my mother was born in 1908, life expectancy was not more than 50 years, not the mid-70s of today. Many of my relatives had died before they reached 60.

So, one very long, hot summer in 1976, we set about to first sell and then empty her handsome three-bedroom cottage. I must have driven the five-hour trip from Worcester to Brooklyn Heights a dozen times that summer—always alone, but with the car loaded with her things. Actually, when I looked around my apartment, I realized most of “her things” were favorites of mine that I couldn't bear to part with: my father's mahogany three-foot-high liquor cabinet (a gift from his employees); Revere-Ware pots and pans; large decorative serving dishes; small end tables; books (lots of books); linens and even a meager four-piece Wedgwood collection—presents my sister and I had given her over the years. When my mother finally moved into the apartment and looked around, she couldn't get over the "junk" I had brought back. She was definitely not a collector.

During a period of transition to our new living arrangements, we both had terribly conflicted feelings. My mother wondered if she'd made a big mistake trading in her large comfortable house for a small room in my apartment. I concurred that it might have been a big mistake since we were both in danger of losing our independence. But once we'd taken the step, there was no going back. I had to make our new family composition work. My husband, whom my friends considered a saint for even allowing the move in the first place, seemed not the least bit concerned, as though this sort of thing happened to every family.  I attributed his compliance and sanguinity to the fact that he was a funny foreigner, an eccentric Englishman who liked little old ladies and probably had seen his own relatives do something similar. My son, Evan, at age 10, was at first delighted to have his grandma move in; but in later years as a teenager, he discovered some drawbacks: his beloved grandma was more like an older sister—she read all his mail from his girlfriends and this left its mark. To this day, he does not write letters to anyone.

In the years that followed, often in frustration to a particular situation, I wrote in notebooks. One entry was a list of countries I was unable to visit because of my mother's immediate medical problems. In the past, I was able to travel with my husband to wonderful new places; but by 1987, my mother's ill health prevented me from accompanying him on these enjoyable business trips. I did not go to Germany nor Wales nor Australia nor New Zealand. Even shorter trips to Hawaii or Puerto Rico were out of the question. When my husband was in Wales, I was home tending my mother's broken pelvis.

After the age of 80, her health began to fail dramatically. From 1987 until her death in 2002, she was admitted to the hospital 24 times. Besides writing in my journals, I learned that I must have with me at all times her written medical history. "Coronary Artery Disease" was the top heading. This saved tons of time for me and the medical personnel and probably helped save her fragile life for one more hospital visit. I learned from all these emergencies that the heart is a pretty strong muscle; she had six myocardial infarctions, none of which killed her. Together we coped with hip operations, pulmonary edema, stroke, pneumonia, and what we considered the minor problems: angina, dehydration, cataract and retinal surgery. However, before heading to the nearest hospital on an emergency basis, we always discussed whether it was truly merited. It was a "judgment call" we made on the basis of the problem. And if the crisis came on a weekend, we coped at home unless it was life threatening. I can still see her shaking her head and moaning, “But we can't go to the hospital. No one will be there. It's a weekend and a holiday!”

After she died in June of 2002, I realized my mother and I had been a team, not unlike buddies in combat who help each other when the other is down. Time and time again during unavoidable hospitalizations, we encountered and rose above inept interns, brusque nurses, officious bureaucrats, and even crazy patient roommates. We dreaded these hospital stays. They were exhausting and debilitating for us both. I would make at least two trips a day to the hospital, catering to her daily requests of needed items. When not so engaged, I would stay with her and try to catch assigned specialists, nurses and social workers. However, it was years before I found out that my mother dismissed every social worker who came to her hospital room before discharge, claiming she did not need the home health aide that Medicare would provide because she lived with her daughter who would take care of everything.

In the end, it was a hospital stay which killed her; not her frail heart. Admitted for a lingering cough, it was not long before I was informed by the doctors in charge that she had sepsis, a hospital infection which led to her death on June 2, the date she had been married 72 years earlier. Later, I was to read in one of my medical newsletters that one out of 10 hospital patients acquires an infection and these infections or medical mistakes kill about 100,000 people a year.

She was 94 when she died and I was 65, almost the same age she was when she first came to live with me. "Don't be sad when I'm gone," she would tell me toward the end. “It's getting too hard to live. My aches and pains make it impossible to enjoy life.” This was a mantra I heard from her almost every day of the last year of her life. But dismissing her complaints, I would physically lift her little frame so she could grasp her walker, and together we would make the hard trek to the bathroom or to the breakfast table or wherever she directed me.

After she died, I was surprisingly relieved at first, thinking that at last she was no longer in agony and my dutiful care had finally come to an end. But I was not prepared for the mind- and body-numbing grief which hit me. I literally felt nothing for years. Instead, my feelings came at night in dreams, re-living different episodes of our life together. For, indeed, her life had become my life, and a good part of me had died with her. I just never expected that. I thought when she died, I would be free to resume my former life—to pick up, so to speak, where I had left off. But my former interests and friends just weren't there. Long ago, I had sacrificed them to the greater good: keeping my mother alive and well.

I am now realizing, in my seventh decade, that my mother did indeed take "the best years of my life," but in a totally unexpected way. I was a caregiver for 25 years and experienced a kind of intimacy not otherwise available; and I was given wisdom by someone far wiser than most people I would have met in the busy twittering outside world.

When I'm feeling particularly worthless because I interrupted a career to take care of her, I wallow in the available statistics. As a caregiver, I am part of a group which has saved the country billions of health care dollars. I also have an assigned value. In 2004, two years after my mother's death, the economic value of informal caregiving was estimated by the National Family Caregivers Association for each state. I was one of 1,923,778 caregivers in the state of New York working 2,061 hours a year at an estimated market value of $20,443. Multiply that by 25 years and I would have earned (had I been paid) well over half-a-million dollars. There is so little that caregivers can cling to, to give themselves meaning and importance, that such statistics become strangely comforting. I still sorely miss my mother and it will be years before I find another comfortable identity for myself. So in the meantime, I'll settle for this price tag—not a meager amount for the best years of my life.

 

Nancy Jones was a caregiver for her mother for 25 years.  She has been a writer and editor at the Children's Hospital in Boston and later at the Albert Einstein School of Medicine in New York. 

 

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