Many of us are — or will become — a caregiver to a parent, spouse, child or other loved one.
When that happens, you will need to find out a lot about a disease or condition, ask good questions about treatment options, and make the best decisions you can.
But don't be surprised if, like me, you also learn some things you wished you had known earlier.
For the past few years, I was an intermittent "virtual" caregiver to my 82-year-old father, Patrick, who died last fall. Even though he lived 450 miles away, we kept in close touch with regular phone calls and visits.
Like many people his age, my father had several chronic illnesses and previous surgeries. These included lung disease, early Alzheimer's disease, heart problems, and a knee replacement. He took 18 different medicines and was on oxygen at home during his last year of life. He was extremely fortunate to have a terrific wife who helped him manage his medications and appointments. She also was essential to his enjoying his life beyond dealing with health issues.
One of the challenges my family faced was learning how to manage things that became part of my father's daily routine, like his oxygen machine. Other caregivers may have challenges in organizing weekly medicines or arranging transportation to and from various medical appointments. These relatively simple tasks can quickly become more complex when you are caring for a loved one with several ongoing medical needs.
There are resources that help caregivers meet some of these challenges. But finding help can take time and effort when you already have a lot on your plate. Local connections — your friends, church, or workplace — are an important place to look for help.
In our situation, the visiting nurses and aides were very helpful to my father and stepmother. This was especially true after he came home after a hospital stay.
Your local Visiting Nurse Association may be a good place to start if you need nursing help in your home.
Another challenge was more serious, but all too common. On one occasion, my father needed to be re-admitted to the hospital because of a miscommunication about his blood thinner drug. Instead of taking a 2 milligram dose of his blood thinner, he was taking 2 pills that were 2 milligrams each, or double the correct dose.
Readers of this column know that my agency, the Agency for Healthcare Research and Quality (AHRQ), has funded many projects to identify and prevent medical errors, including taking blood thinner medications safely. We have developed a video and an easy-to-read brochure, which are available in English and Spanish.
In my father's case, the miscommunication that caused his overdose might have been prevented if his nurse had asked my stepmother to repeat the blood thinner instructions back to her. This type of feedback can be as simple having the nurse say, "Tell me what you heard. Say it back to me, so I know we're on the same page."
One project that AHRQ funded and is being used by hospitals across the United States does just that. Project RED consists of an 11-step checklist and a follow-up phone call a day or two after a patient goes home from the hospital to find out if the patient or the caregiver has any questions about medicines. In a study at Boston University Medical Center, patients who took part in Project RED had 30 percent fewer hospital re-admissions than patients who did not.
A guide developed as part of Project RED helps patients when they leave the hospital. It has space for patients to list their medications, follow-up appointments, and phone numbers for whom to call if they have questions once they get home.
My recent experiences have truly strengthened my belief that patients and their caregivers should ask questions about their care. Many doctors — myself included — were trained to think that a "good patient" is one who doesn't complain or ask too many questions. In fact, people who ask questions and get answers they understand are more likely to fare better overall.
I'm Dr. Carolyn Clancy, and that's my advice on how to navigate the health care system.
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Carolyn M. Clancy, a general internist and researcher, is an expert in engaging consumers in their health care. She is the director of the U.S. Agency for Healthcare Research and Quality.
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