Every once in a while a truly unforgettable patient enters your life and you hope the exchange between nurse and patient changes both of you. In the case of Karen, I met my match.
She is a 40-year-old sweet, gentle, sensitive female who carries the secrets of illiteracy as well as morbid needlephobia inside her every day. To speak with Karen is never to know she can’t read. She speaks easily. Her doctors did not know she was illiterate. She does not divulge that she takes her insulin “every once in a while” because she needs to gather up the courage to stick herself and it can take an hour to give herself a shot. She does not check her glucose levels because of the need to stick herself and she furthermore cannot afford the test strips anyway. She judges her glucose levels by whether she has a headache (hyperglycemia) or gets shaky (hypoglycemia). She can be late to work because of all the time she “wasted” giving herself an injection so she does not eat as she walks the half-mile to work.
Karen speaks impeccable English with choices of common words. She went to school for 14 years of special education but ultimately left without being able to integrate letters into a word. She knows numbers and she can read letters but cannot put those letters together to make sense to her. She has a wonderfully supportive family of sisters who help in any way, but Karen wants to live by herself and will keep info from them if she thinks it will endanger her independence. Her greatest accomplishment was in landing a job with a supermarket chain and one supervisor took a chance on her and gave her the gas station attendant job and for the first time in her life she could make a bit more than minimum wage. She often works double shifts to make ends meet. She cannot afford test strips and she “stretches” her insulin so she can afford the medication.
But the cloud gets a bit darker. She was diagnosed with thyroid cancer, had surgery and radiation but when she developed dysphagia again she chose to sleep with five to six pillows upright at night rather than to check into the problem. She told me that she was not going to have any treatment “because it takes away from her job.”
My to-do list was huge. Luckily, I established a good relationship with her and she easily confided in me. I called her endocrinologist office and reported the illiteracy and encouraged them to do repeated diabetic teaching for Karen each time she came in. I had been unsuccessful in finding a children’s diabetic program that required no reading. I tried the American Diabetes Association, the local diabetic educator at a nearby hospital, the NIH website to no avail. I begged the cancer center where she was doctoring for the thyroid cancer to also provide any diabetic education and support that they could but they pushed back, citing their need to focus on the thyroid and not the pancreas.
I linked her with a social worker at the cancer center and confided that she could not read and asked her to provide an escort for her as she traversed the hallways of the huge center on her appointment days so she would not get lost. Karen did not wish to have her sisters with her each time, took a bus and train to her appointments and I was afraid she would get totally lost from the whole experience. The social worker was very helpful in linking her to transportation to and from their center if she wanted it. She provided an escort for Karen and they also provided a “needleless” glucometer, which Karen loved but which required expensive test strips which she ultimately could not afford.
I convinced her to apply for financial support through the local city channels for help with medical payments. She balked but did it anyway. Sadly, they turned her down. The fact that she made more than minimum wage worked against her.
I convinced her to listen to the potential treatment plan for the thyroid cancer first before totally discounting it. That worked because she had her treatment and the throat and lung mets disappeared and she was back to work in relatively short time. They encouraged her to meet with a psychiatrist for the mental health support she so desperately needed to allay fears.
In one follow-up call Karen happened to mention she had her medications changed and was not feeling that great. The cancer center increased her thyroid medication and she was now taking the thyroid medication ordered by her endocrinologist plus the dose ordered by the cancer center. She was sure that that was what she needed to do. I quickly called the endocrinologist, reported that and they quickly got back to her to straighten her out. She had been double dosing and the rapid heart rate was causing the ill feeling.
Perhaps the biggest help to Karen, though, was the encouragement to level with those who are professionals regarding her inability to read. She will be able to understand and be more medically stable if she knows what to do. She will be less reliant on her sisters for interpretation if she herself can grasp what she needs to do.
I had her case open for seven months and in that time we navigated the waters of medical care as it applied to diabetes and cancer and I tried to link her to supports and tried to impress her to be honest with herself and others in what her needs are. By the end of January 2008, she was upbeat, energetic, back to work full time and had been given an appointment at the cancer center for a couple of months away instead of a couple weeks away. She felt she could handle her issues and we officially parted. I was proud that I could help a desperate woman who carried big secrets.
Karen, however, will always live in my heart and will always be my teacher in terms of the huge implications of illiteracy of adults. Now whenever I hear an adult hesitate when I ask what medications they use or when they say they “can’t find” the discharge papers I suspect a reading problem and assume illiteracy until they convince me otherwise.
