caregiving is frightening at times

One of the most frightening things I find about caregiving is the decision making it involves.

For example, my mother is coughing after trying to swallow a pill. I thump her back, I try to make sure the pill’s gone down the right way. She continues coughing. She complains of chest pain. She says she cannot breathe. Her voice sounds normal to me, no rasp to it, no sense of gurgling. Her breathing is even, too. But she is coughing, and she is frightened. What do I do now? Do I rush her to a hospital? Do I tell her there’s nothing wrong? Other than her fright and her cough, there is nothing odd to make me suspect choking. So I have to decide.  Taking her if it is not needed will tire her and traumatize her; not taking her if needed is even more dangerous. In this instance, I try distraction by talking of something quite different for a while, and suggesting she rests. A few minutes of distraction, and she’s forgotten her coughing. If it were real ‘partial choking’, distraction would not have worked.

The problem is, once my mother thinks there is something wrong with her, she does not notice when the problem gets solved; she assumes something will remain wrong with her. So if I keep asking her how she is feeling, she will keep thinking she is unwell. But if I don’t ask, how will I know? I have to watch for her behavior, her facial expressions…

Then there is a problem of the mistakes she makes when telling me what is wrong. Like a few days ago, she complained of severe back pain. I feared a hairline fracture, but there was no swelling or redness anywhere. So I took a spot decision and applied a pain-relieving cream and asked her to rest. An hour later, she went to the toilet. Turned out, she was constipated. The pain she reported in her back (even pointed out to the spot) was actually at a very different place. It was in her abdomen🙂

But then there was the time she complained of pain in the eye and could not open it (she is a glaucoma patient), so I gave her an emergency medicine and rushed her to the hospital. The doctors could not say whether there had been a problem or not, because the medicine had been given (they said it was right to give it in case of doubt), but I still don’t know whether the hospital trip was needed or not.

Frankly, it frightens me to decide whether her problem is serious enough enough for immediate medical attention or not. She cannot articulate her problems, she gets confused about what she is feeling, and where, and whether it has gone or is still present. The problem gets worse when we reach a doctor, because doctors ask all sorts of questions, which, to her, are like an exam. She ends up either frustrated, or giving wrong answers that make the doctor prescribe over-medication or under-medication. I have even had a couple of instances of doctors refusing to medicate her, saying, ‘the patient is not cooperating’ when she cannot answer their complex questions.

As a software project manager, I have handled teams of programmers and analysts, and taken major decisions. But the tension they involved pales into insignificance when compared to deciding these things during a typical caregiving day. Because, those were just about money; these involve well-being of a person, even a life.

The problem of caregiving a dementia patient is made worse by interfering do-gooders and doctors who do not register the fact that a dementia patient cannot give correct answers regarding how long the symptoms have been there, and things like that.

A friend of mine told me of how her mother required an eye surgery, and how she told the doctors to ask her, not her mother, any medical questions, but a junior doctor insisted on asking the mother which eye needed the operation, got the wrong answer, and jotted it on the case-records. Luckily, senior doctors understand and correct such mistakes.

One instance I remember, is when my mother got a cough a few years ago. I started her on hot liquids and a generic cough syrup her old doctor had suggested as the first line of defense in such situations. She responded, and showed improvement.  On day 3, a visitor dropped by. She coughed in his presence, and he asked her how long she had had the cough. She said three months. He believed her, of course (poor little lady, ignored by ‘busy’ daughter) and summoned a doctor neighbor pronto (we have too many horror stories of neglected parents, and too few about dementia patients). This doctor asked her the same questions, assumed the three months were correct, and prescribed very strong medicines. He wanted an X-Ray for TB.

My mother, by the age of 12, had lost her mother and two sisters to TB. Mention that word and she is petrified. By the time I returned and realized what was happening, she was absolutely frightened, convinced she was about to die. The do-gooder gentleman who had not bothered to check up with me about the facts of her medical records started giving me a lecture on how I should not neglect my mother, and as good as said that he would from then keep tabs on how well I was doing my job.

I did not give her the medicines prescribed. I called our normal doctor to convince her she did not have TB, and to suggest a mild dose suitable to her frail state. Sure enough, she was fine in a few days. But the incident left a very unpleasant taste in my mouth. I was scared, not so much of my mother’s illness (a simple cough that was improving) but of the neighbor gentleman’s ability to bad-mouth me  all around and convince people, including my mother, that she was victim of neglect. Luckily I preserve her medical records meticulously, but it feels unfortunate that I need to act defensive.

People make mistakes all the time regarding their health and medical issues, some out of ignorance, some knowingly.They eat foods that do not suit them, they neglect coughs and colds, and fevers, they get allergies, they gain weight, they lose weight. They ignore pains that may turn out to be kidney stones. But that is what they chose to do, it is not that they are dependent on someone else who is making a mistake.

I knew an old gentleman (a very alert, active one) who assumed his dimming vision in one eye was cataract and postponed a visit to a eye doctor till the eye went blind, assuming that the cataract operation could only be performed then. Turned out he had glaucoma and he lost vision in one eye because of that. A very heavy price for a false assumption. But he took his own decision–when one is caregiving, we take decisions for others…

I guess being vigilant, thoughtful, and doing what one considers best is all one can do as a caregiver. I just wish people around us understood how difficult it was to be in such a position and were sympathetic and supportive about this while offering their suggestions. It is tough enough as it is.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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