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by Sue Tullos Duffy, Champaign, Illinois
When my husband, John, called me from the hospital and said he couldn't stand being transferred to a third nursing home, I knew I had to find caregivers fast. This was a completely new experience for me, but I had no time to fret. John would leave the hospital on Saturday, so I had only three days to get help. We used round the clock caregivers from March, 2012, until March 6, 2014, when John was hospitalized for the last time.
In October, 2011, John contracted C. diff, a potentially fatal and difficult to treat intestinal virus, which was finally cured in June, 2012. Three months later, he was diagnosed with terminal, advanced, metastatic prostate cancer.
I cared for John alone from October, 2011, until his first hospitalization on January 5th, 2012. I became completely exhausted and realized I could never do this again. Since I have fibromyalgia and arthritis in addition to being totally blind, I could not do turning or moving. Finding at-home caregivers, therefore, was essential for both of us, since neither of us had family who could help.
When I called my church for possible referrals to caregiving agencies, the secretary recommended a company which turned out to be far too expensive. This agency, however, suggested a second, more affordable company, and I called to set up the initial interview. The next morning, the owner and the case manager came to our home to talk with me and then went to the hospital to interview John. They were matter-of-fact about my blindness and promised to inform the aides about it before they arrived for work. The owner assured me that the company was bonded and that all the certified nursing aides had passed background checks. This is extremely important, since the caregivers work in the home for many hours, sometimes when you and the patient are both asleep. The company we used did not take Medicare, Medicaid, or long-term care insurance, but this policy varies. Hourly rates in our area range from 16 to 25 dollars, but holiday and weekend rates are higher.
As the name implies, Certified Nursing Aides have taken requisite coursework either during high school or at community college, and many go on to become registered nurses. Their duties may differ slightly from company to company, so be sure you know what your particular CNAs can do. For instance, CNAs cannot give medication but can place it in front of the patient for him to take himself.
When John went to the hospital, the CNA followed in her car, but could not ride in the ambulance. Once John was admitted, she had to leave the hospital, since he was legally under the doctor's care at that point. She accompanied us to scheduled appointments, but her job was walking with me from place to place, and, if we stayed all day, going with me to the cafeteria for lunch. I became a client of the agency myself so that the aide could be paid for assisting me.
At home, the CNAs did light housekeeping, such as cleaning the bathrooms and helping me label cans in braille. They could run errands and do grocery shopping if we paid their mileage, but their major duties involved caring for John. They bathed, dressed, and toileted him, since he was confined to bed and could not transfer into his wheelchair anymore. I cooked, shopped, did laundry, scheduled doctor's appointments, and spoke with the advisory nurse when unforeseen problems, like a sudden fever, occurred.
When John's pain from his terminal cancer increased, and he had to take stronger pain medication, the aides and I, at the nurse's request, kept a detailed chart about the dates, times, and amounts of his medications. When emergencies happened, the CNAs provided visual information for the advisory nurse, which was extremely helpful. Finally, when I became ill for two weeks in January, 2014, the CNAs prepared meals for both of us. We could never have survived without them.
Though the CNAs knew about my blindness beforehand, they really had no idea what to expect, especially at first. This was particularly true of the aides from foreign countries, who had only seen blind people begging on the streets or singing for money. The American CNAs were in a similar situation, though, since they had cared primarily for older blind people, who had not received any rehabilitation training, and who, many times, needed more help.
The CNAs were stunned that I could walk around my own house without getting lost and were amazed that I knew how to cook. Since all of them offered to help me in the kitchen, I know they were afraid that I would hurt myself or catch something on fire. Some of them actually watched me while I cooked, which made me nervous. But when nothing happened, everyone calmed down.
Since the aides and I worked so closely together, our relationship was quite informal, and we called each other by our first names. However, I did complain about one CNA who called me "dear" and "honey" constantly. Some of the CNAs chatted too much on their cell phones, and one talked to her boyfriend all day and cried. At my request, this person was replaced. A few aides fell asleep at night and had to be awakened. One balked when I asked her to make a bed. These behaviors, though, were the exception. Most of the CNAs were kind, conscientious, knowledgeable, and professional.
Since caring for a dying patient is hard work for everyone involved, here are some ways to make life easier. Be sure to label the microwave in both print and braille. The CNAs bring their own meals and beverages and will need to heat them. It's thoughtful to have coffee or tea available, especially for the CNA who works from eleven PM to seven AM. If a CNA accompanies you to the hospital, offer to pay her parking fee, as you would for any other driver. If, while your family member is being treated, the CNA takes you to the cafeteria for lunch, offer to buy her meal, too. If she declines, at least you've made the gesture. In bad weather, let her park her car in your garage. If your family orders dinner in, ask if she wants something. Offer her a slice of dessert. Ask about her family. Above all, thank her for jobs well done, and, when appropriate, praise her to her supervisor. CNAs make very little money, but their contributions are priceless.
Taking care of a terminally ill person over many months is both physically and emotionally demanding, so remember that this is a team project, even though you're paying for the company's services. Give everyone some slack, including yourself, but report any major problems promptly.
Despite the best will in the world, there will still be some trying days. Sometimes, John was angry, I was teary, and the aides were exhausted. At other times, the three of us ate apple pie and watched old movies when we had caught up on work. Once, one of the aides beat John at checkers, and three CNAs brought us sweets at Christmas. Two of the aides, the case manager, and the owner of the company all came to John's funeral, where we hugged and cried as we ended our journey through a stony and challenging valley.
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