Stories

Sheila Carpenter from Maryland

"I’m frustrated, I’m overwhelmed, I’m scared and I worry about other people who don’t have an advocate by their side."

For most nanogenarians, the workaday life is a distant memory. But not for Willie. He was in such good health when he entered his ninth decade six years ago that he was still working as a cook, housekeeper and driver for a prominent political family in Washington, D.C.

Willie has since quit his day job, but his health has deteriorated over the years. He suffered a stroke six years ago, has cancer, and has problems with his lungs and kidneys. He now takes seven medications a day and is monitored on a regular basis by an innovative in-home medical house call program of doctors.

Willie has no immediate family members who live in Washington, D.C., so he has relied on help from nieces and nephews who live in the area. They have helped him manage his confusing medication schedule, make and keep appointments with his team of doctors, and get to the emergency department when necessary.

Sheila One of his nieces, Sheila, has taken on most of Willie’s caregiving responsibilities. During visits with Willie’s doctors, she grew concerned about Willie’s ability to communicate with his providers. "He was talking to his doctors, but he wasn’t doing a good job communicating with them," she says. "Most seniors don’t ask questions. They just kind of accept things. They don’t know what questions to ask."

For Sheila, 52 — who holds a demanding full-time job that involves extensive travel — adding Willie’s caregiving responsibilities to her list of things to do has been no easy task. But she wouldn’t have it any other way; helping her uncle make his way through the health care system, she says, is the right thing to do.

Still, it takes a toll. "I’m frustrated, I’m overwhelmed, I’m scared and I worry about other people who don’t have an advocate by their side," she says.

Sheila devotes much of her precious little free time to caring for Willie. She does his grocery shopping, helps keep his prescriptions filled, talks with his doctors, nurses and nurses aides about his condition, and visits him when he’s been in the hospital. She spends time with him at least once a week and calls him every other day.

Her life, it seems, revolves around catastrophe. During the workday, she manages a catastrophe team for an insurance company and in the after hours she tries to prevent catastrophe for her aging uncle. "I have very bad work-life balance," she says.

One of her greatest challenges is poor communication with some of Willie’s providers.

On one occasion, Willie had been admitted to the hospital for diverticulitis — an intestinal inflammation — and he complained to the doctor about an ingrown toenail, which can be a minor ailment for a young, healthy person but can disrupt life for a man in his 90s.

The toenail was causing Willie pain and affecting his mobility, but his doctor didn’t seem to take it very seriously, Sheila says. Three days passed, and no one had responded to his complaint, she says. Sheila asked the doctor about it, but "he just ignored me," she says.

She also asked his doctor how he planned to treat Willie’s diverticulitis and questioned whether his plan was too risky for a man of Willie’s age and health. Willie’s doctor "took offense" to her questions, she says, and "talked down" to her because she was neither the patient nor a provider, she says. "He took it as me questioning his judgment."

So Sheila wrote a letter of complaint to his supervisor, who then called and took the time to answer Sheila’s questions about the procedure. Sheila and Willie ultimately decided against the procedure, and Willie recovered with the help of medication. Meanwhile, three foot doctors came to treat Willie’s toe. "My persistence paid off," she says.

This is not the only bad communication experience she has had over the years. The hospice social worker and nurse do not always keep Sheila informed about Willie’s appointments, and one social worker recently dumped Willie as a patient to avoid dealing with Sheila.

But she’s grateful Willie is enrolled in a program that helps make it possible for aging men and women to stay in their homes. Thanks to the program, Willie hasn’t had to move to a nursing home, and Sheila has someone to call if she has a question about a drug or a doctor. "It’s a godsend," she says.