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HEART Insight:
doi: 10.1097/01.HEARTI.0000422822.90774.c3
Features: Heart-To-Heart

When a Caregiver Needs Care: Roles Reverse While a Middle-Aged Mom Recovers from a Heart Attack

Prentice, Kathleen

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Photographs by Glenn Triest

The evening before my heart attack — before the pressure in my chest swept my legs out from under me — I bicycled to the beach and swam in the cold lake water with my 18-year-old daughter.

A few hours later, in the very early morning of June 26, 2007, life as I knew it changed.

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At 55, I am a “sandwich” — parenting children in college and graduate school, while also helping aging parents (still independent in their mid-80s and living in their own home a plane ride away). This has meant a schedule with days blocked for “extras,” like driving my teenage daughter to college and cooking meals for my parents, tacked on to the usual hours spent on household tasks and my work as a writer.

I am the overseer, the “psychological parent” who knows my kids' class schedules and close friends, and how to reach them at a moment's notice. The family cook who orders the Thanksgiving turkey, the holiday maker who remembers favored authors and favorite colors and how to make the stuffing that everyone likes. I also bought concert tickets and planned family vacations and loved that caregiving role.

In the emergency room while medical personnel were inserting IVs and placing electrodes on my chest and abdomen and telling me they thought I was having a heart attack, I was telling my husband, Bob, to let our daughter know why we weren't home, and to call one of our friends to pick up the dog and feed the cats. You know, the essentials.

“We're beginning to see [heart] disease affecting women of younger ages, often finding themselves in the transition phase of life, caring for children and adolescents and at the other end of the spectrum taking care of elderly parents,” says Alexandra Lansky, M.D., Associate Professor of Clinical Medicine and Director, Clinical Services, Center for Interventional Vascular Therapy, Columbia University Medical Center in New York City.

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“Life changes once you've had one of these events. You become much more aware of your vulnerability. Life can be switched off from one second to the next and that puts everything in a different perspective. Things that didn't seem important yesterday become important today and that has tremendous impact on family,” says Lansky.

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“I'm often telling caretakers, women patients, they're not going to be effective caring for their elderly parents if their own health is not in order,” says Elizabeth Jackson, M.D., M.P.H., Clinical Assistant Professor, Department of Internal Medicine, University of Michigan Cardiovascular Center in Ann Arbor.

I was — I am — the woman who “has a hard time letting that responsibility go, and asking family members for help and making sure she's taking care of herself,” according to Dalene Bott-Kitslaar, R.N., M.S.N., C.N.P., Mayo Clinic Women's Heart Clinic in Rochester, MN. “Part of your recovery is realizing you can't take care of someone else before you take care of yourself.”

After the shock of the diagnosis and in the immediate aftermath of treatment (angioplasty and insertion of two stents), my husband, daughters and I found all of our roles shifting. I ended up in the hospital three times that summer, first for the heart attack, then to treat spasms in the stented artery. Each time, I got pushed back to Square One in my recovery and rehabilitation.

The day I was released from the hospital the third time, my daughter, Caitlin, and her friend, Francis, arrived from Scotland for a planned visit. But nothing went as I'd envisioned.

The house was as I'd left it, with laundry piled in the living room and no curtains over the half-washed windows. I asked Bob to make a path, pull the shades, run to the grocery store. Grapes were on the list, and he brought home the kind with seeds. It was my first exercise in letting go.

Caitlin and Francis cooked dinner the night they arrived and ended up on kitchen duty for their entire visit. Different cuisine, different plan, but it worked.

During my recovery, the exhaustion I experienced some days was unlike anything I'd ever known. We canceled out of a larger family reunion when I realized that I didn't have the energy to make the trip. Another day we had plans to picnic at a nearby lake and then to attend an evening concert. That morning I knew I needed to rest, so the younger family members headed to the beach, and Bob and I met them later for the concert.

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My life had changed from being a biker and swimmer to feeling grateful to be able to walk from the sofa to the shower by myself, grateful to be home, grateful to be alive, grateful to share a laugh with my daughter.

I had to accept letting Bob, Caitlin and younger daughter, Lily, take over the household and my care — and to accept how they did it. My older sister who lives in Barrie, Ontario, flew to Sacramento, CA, for a week and stocked my parents' freezer with precooked meals. At the end of their visit, Caitlin and Francis helped Lily pack for her second year at college and drove her to Maine when I was unable to make the trip.

I felt like I had relinquished control over my job description, my identity.

“First of all, women shouldn't feel guilty that they have to let go of that role a bit. When people offer to help, let them take the load off of you,” says Bott-Kitslaar. “This is a new set of balls people are juggling with elderly parents and kids and a heart attack. Sometimes they feel like they just want to sit down and cry. They need to ask for help,” adds Jackson.

What I wanted most of all, was to return to normal. What we've ended up with is a blend of pre-and-post heart attack routines. A new normal.

“I would hope that my patients don't totally go back to normal. Maybe normal is what got them where they are. They need to take better care of themselves, physically and emotionally,” says Bott-Kitslaar.

Once the medication got the spasms in my heart under control, I started to heal. Today, I'm back at the hub, overseeing the household and all that entails, but lowering expectations and the accompanying stress (which I believe played a role in my heart problems) is part of our new normal.

Bob continually reminds me not to take on more than I can comfortably handle. He also is great at reminding me to slip a cell phone and nitroglycerin into my purse or pocket when I go out, making time to accompany me to doctor appointments for moral support and staying on top of changes in the management of my health.

Once I was cleared by my doctor for travel, we planned a trip to visit Lily at Bowdoin College in Brunswick, ME — a 1,100 mile drive. In some ways venturing outside what I'd come to regard as a “safety zone” — home and medical care — was like jumping into a cold lake. I didn't know what to expect. What would happen if spasms or other symptoms returned miles from home, my doctors and our familiar hospital? It was one of those times in life when I just had to take the plunge, get in the car and go. Luckily, the trip was medically uneventful.

I still occasionally feel so exhausted I just can't move. Before my heart attack, I would have poured a cup of something with caffeine and kept on going. These days, I curl up for a midday rest. I'm planning a trip to see my folks in Sacramento, but it will be with my sister, and we'll do the cooking and the visiting together.

Asking for help is getting easier.

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© 2008 American Heart Association, Inc.