Caregiving Roles Reversed

Becoming My Mother’s Mother

Michele H. Kimball,    Buurtzorg, Stillwater, MN, USA

In this chapter, the author tells about what she and her family experienced when she had to become the main caregiver of her parents when they became seriously ill. Her large family pitched in to assist as much as they could, and it was of enormous help that her employer afforded her both the opportunity to obtain the information and support she needed and the flexibility of schedule that allowed her to visit her parents’ home to care for them. That was a rarity at the time (during the 1990s), and things have improved since then; but there is still much room for improvement in terms of caregiver support and resources.

Keywords

Advance directive; do not resuscitate (DNR); power of attorney; hospice; long-distance caregiving

I went into labor at 28 weeks with my first child. As my then-husband rushed me to the hospital, I was terrified by thoughts of losing the baby. We knew it was a boy and had even decided on a name—Adam. I could feel him moving inside me, this new life with so much promise. It never occurred to me that something might go wrong.

At the hospital, I was hooked up to machines and IVs while medical personnel worked to stop the labor. I was married, 28 years old, living in Washington, DC, and working as a healthcare lobbyist for the nation’s largest consumer organization, AARP. And—like any other self-respecting, independent career woman in a scary situation—all I wanted at that very moment was my mother.

It was 1993. We did not own cell phones then, and there was no phone in my hospital room. My husband found a public pay phone down the hall and called my parents 400 miles away in Syracuse, New York. My mother sent her love and concern, but it wasn’t quite the same as hearing her calming voice, something I desperately needed at the time.

Fortunately, my labor was stopped, and more than 12 hours later, I was released to bed rest at home, armed with strict instructions and medications. The first thing I did when I arrived home was to call my mother. When she picked up the phone, I said, “Hi, Mom. Just want to let you know that I’m home now and the baby is okay. The doctor said his heartbeat is strong and the ultrasound showed everything looks great!” Her response caught me off guard. “That’s terrific, honey,” she said, “but I’m not worried about the baby. That’s your job. I’m worried about my baby. How are you?” And, there she was—my mother, always the caregiver.

Adam was born perfectly healthy 9 weeks later, and my parents made the 6½-hour journey south to see their first grandchild. Mom stayed 10 more days after Dad returned home to Syracuse. She loved that baby passionately—he had red hair, just like her—but it was me she took care of, washing clothes, grocery shopping, making meals, and watching Adam so I could shower and nap.

This was my mother, taking care of her baby. We had plans, she and I. Talking daily. Visiting across the miles. Vacationing together. She and Dad retiring early to be closer to my new little family, to watch my child—and perhaps future children—grow up.

Then the headaches started. Blurry vision followed, and finally a seizure. Three months after her first grandchild was born, my mother was diagnosed with a glioblastoma multiforme, de novo—a brain tumor. She was 52 years old.

My mother stayed strong at first, but Dad crumbled. They had been married 30 years. He could not imagine a life without her and could not accept the diagnosis. There was no hope of recovery. With surgery, she might live another 9 months, maybe even a year if she was lucky. All of their life plans (and mine with them) were suddenly gone, replaced with an uncertain future of surgery and chemo—and saying goodbye. Growing old together would never happen.

Both of my parents immediately turned to me. I was the problem-solver in the family, the daughter, the first-born, the organizer, the optimist, the natural caregiver. I would know what to do. But I didn’t, at least not at first. I felt helpless and scared—and angry. Then I fell back on my employer and my crazy, extended family.

I was one of the lucky ones thrust into a long-distance caregiving role. I worked for AARP, the very place most consumers turn to for information about caregiving, health care, long-term care, and even end-of-life care. I spent my working days mired in national healthcare policy. I had experts I could consult with simply by walking down the hall, and I had educational brochures at my fingertips. These were the days before widespread Internet use and Google. I didn’t know what I didn’t know, but I did have stacks of information and colleagues at the ready to help.

And, unlike most daughters thrust into a similar situation, I had a secret weapon—something every long-distance caregiver should have to maintain a work–life balance and their sanity. I had a huge, loving, Italian family—an army of aunts, uncles, and cousins within minutes of my parents’ home. These people are like the Red Cross, and they love a crisis. While I dealt with the practical issues of my mother’s medical care, they self-organized, coming up with a schedule of “community care”—cooking, cleaning, gardening, shopping, and staying with Mom when Dad was working during the day. The house was always spotless, the meals were endless, and Mom was never alone.

Shortly before Mom’s surgery, she and Dad and I sat down at the kitchen table to have what is arguably the most difficult conversation anyone can ever have with someone they love. Had it not been for my work with AARP, I would never have even thought to have this conversation—especially in 1993—but there I was, leading a discussion with my own parents about how Mom wanted to die. We discussed where and how. Did she want to be in the hospital or at home in her own bed? Hooked up to machines or comfort care only? Extraordinary measures? A feeding tube? Oxygen only?

We talked about the importance of an advance directive, a do not resuscitate (DNR) order, and a power of attorney, all while reviewing sample paperwork. And we made decisions, right there at the kitchen table. Not only did my mother have the chance to decide her own end-of-life care, but Dad got to decide, too. They had done everything together for 30 years, so it was only appropriate that they both made decisions for their own end-of-life care together. Dad’s advance directive and power of attorney would come in handy nearly 4 years later when, at the age of 59, he suffered a brain aneurysm and was placed on life support. I was able to calmly and without guilt make the decision to remove him from life support because I had in writing his own wish to do so.

After Mom’s surgery, we settled into a routine. Early every other Friday morning, I would pack my baby into my Ford Taurus and drive the 6½ hours to Syracuse, arriving by lunchtime, and returning on Sunday evenings. AARP gave me those Fridays as paid leave, an extraordinary gift for which I remain grateful today. During these times, I would take care of organizing things the rest of my family could not, and I would schedule Friday afternoon meetings with doctors, bring Mom to chemo—with her crying all the way—or deal with issues regarding Dad’s inability to cope.

One Tuesday afternoon before a planned Friday visit, one of my cousins called me at my office in Washington. My cousins never called me at the office. My extended family were all rotating through the house on a weekday schedule, staying with Mom during the day while Dad went to work, but I was the one who usually called to check in with one of them, and almost always in the early evenings. On this particular day, however, my cousin called to say that creditors were calling the house daily, and that she and the rest of the family were growing concerned. Did we need their financial help?

This was highly unusual. My parents were not well-to-do, but they always paid their bills. I thought perhaps they were overwhelmed with medical expenses and needed financial assistance. I told my cousin not to worry about it; I would speak with Dad when I arrived home on Friday. When I finally approached him about it, my father—without a word—turned and led me into the bedroom, where he slid open the closet door. There, on the floor of the closet, was a huge pile of unopened mail. My father had been so overwhelmed and depressed with what was happening with my mother that he could not deal with one of the most basic routines of life—opening the mail and paying the bills.

It was the perfect opportunity to use the power of attorney. I visited the bank with my father and had my name placed on their checking account. For the next 6 months, until Mom died—and for several weeks afterward—I opened every piece of mail and paid every bill. Ironically, I couldn’t bring myself to do my own. Thankfully, my husband stepped in and stayed on top of our finances. But what happens to those caregivers who are not cared for, who do not have someone to help them with their basic needs and routines, or just to give them a break?

Care for the caregiver is easily overlooked and rarely considered. Caregivers spend so much time providing for their ill loved ones—often while working full time and routinely caring for other family members, usually children (as in my case)—that they have little time to...