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The Accidental Caregiver

By Robert F. Bornstein, PhD and Mary A. Languirand, PhD

Rose and Betty had been neighbors in their senior high rise for months. They would often exchange pleasantries in the mailroom or the elevator, and sometimes wound up side by side in the Tuesday morning exercise class held in the rec room. Rose turned up in class after an absence of several weeks, wearing a knee brace and a worried expression. Betty asked how she'd been, and Rose explained that she'd been sidelined by a fall and a torn ligament that would prevent her from driving for a while. Sympathetic, Betty offered a ride to the grocery store the next day, which Rose readily accepted. They wound up shopping together for the next month. Betty also took Rose to her appointments with the orthopedist, and made some stops at the pharmacy, which happened to be on the way.

As Betty got to know Rose better, she realized they had little in common. Rose was nice enough, and grateful for all of Betty's help, but their conversations tended to be a review of Rose's latest woes. Among them was her lack of family support. She had a brother who lived somewhere across the country, and some distant cousins, but she'd lost touch with them all when she married. Rose had found herself pretty much alone after her husband passed away, and had moved to the apartment building in part to make some friends.

Betty introduced Rose to several other neighbors, and they, too, pitched in. They took her to the mall, to Bingo, to the grocery store. Winter came, and Rose slipped on the ice and broke the ankle on her good leg. She was deathly afraid of going out, and the rides became errand-runners, bringing her meals, groceries, prescriptions. Rose was endlessly grateful, and praised her "guardian angels"' to the skies. "I couldn't live without you!"

Spring came. Betty ran into Jane, one of Rose's "angels". As they chatted, Jane acknowledged that she'd been avoiding Rose, as she was tired of playing fetch and carry. Betty thought that a bit harsh, but noted that Rose was calling to ask for more and more favors. When Rose announced that her doctor had ordered twice-weekly physical therapy, and worried that she "didn't know how she'd get there," Betty realized she'd reached her limit, and made an excuse. Rose was gracious, but still: Betty began to screen her calls more carefully, and was slower to pick up when Rose's number flashed on her caller ID.

One afternoon, Betty saw an ambulance crew down the hall. She later heard from the super that Rose had had a stroke, and was in rehab. She rallied the neighbors to send flowers and a cheery card, and called to see how she was doing. Rose sounded weak, but noted that she was really looking forward to coming home. The doctors had advised her that she'd probably need round the clock aides, at least at first, since she couldn't walk on her own and needed help getting to the bathroom. "But I told them not to worry-I can count on you and the girls for help!" Betty made some reassuring murmurs and wished her well, but as she hung up, she was uneasy. What was Rose expecting from them? Running an errand now and then was one thing, but nursing a sick person 24/7 was quite another kettle of fish.

Rose came home in a few weeks. Betty kept meaning to drop by, but never quite found the time. The other neighbors were also busy with their own lives. Still, Rose had her aides; she didn't really need them. Rose was admitted to a nursing home about a month later, her health having declined to the point that in-home care was no longer feasible.

If you work with older adults you may hear some variation of this story from several different vantage points-the "abandoned" patient, the put-upon neighbor, the distant family members who wonder why help mysteriously dries up after people are admitted to hospitals and rehabs even briefly. Informal care giving arrangements are a key component of many seniors' ability to age in place, but they often prove fragile, especially as needs get more complex. The depth of relationship, the number of people involved, the resources and time available, and the degree of reciprocity and commitment required are all crucial factors in predicting whether someone will be able to get their care needs met at home.

Some suggestions for ensuring more successful outcomes in these informal care giving arrangements:

  • Discuss needs and expectations openly up front, and clarify who will pay for any expenses. Revisit these discussions as things evolve.
  • Determine who will do what, and when. Set a schedule and stick to it, as able. Honor the commitment as you would any other formal appointment.
  • If someone asks you to do something that makes you uncomfortable, speak up. It's better to risk hurt feelings or an argument (which might well result in successful resolution of a problem) than an unexplained disappearance that leads to disaster.
  • If you're on the receiving end of informal care, be willing to give more than praise in return. Almost all relationships involve some reciprocity; make sure you're giving, as well as getting, as one-way streets are less travelled.
 

Robert Bornstein and Mary Languirand are the authors of When Someone You Love Needs Nursing Home, Assisted Living, or In Home Care, which is available at amazon.com, or may be purchased directly from HarperCollins Publishers.

Our latest book is entitled How to Age in Place: Planning for a Happy, Independent, and Financially Secure Retirement, published by Ten Speed Press, a division of Random House.