dementia and repeating: when hundred is equal to one

Someone asks you a question once. You answer it. He asks it again, so, okay, you answer it again. The third time you answer it, you use an exaggeratedly patient, slow way of answering, and the person falls silent. One minute lapses, and you switch your mind back to where it had been before the question came.

And then, he asks it again, with an innocent air as if the question has occurred to him for the first time and it is really the most important question in the world. This time you grit your teeth.

What do you do the hundredth time?

If you are very, very patient, you take a deep (verrrry deep) breath and answer, or you excuse yourself and walk out to take that much-needed deep breath. Mostly, the chances are, you snap. You feel sarcasm well inside, or anger, or just an utter fatigue and frustration because you know that the question may be asked again, count: hundred-and-one.

Welcome to a typical episode in the life of a dementia caregiver. And the day is full of many such ‘challenges’, and many such fatigues. Because, for the dementia sufferer, the asking is not for the hundredth time–for each of the hundred times, it was a first asking.

Now, if only the caregiver could wipe clean the counter every time, too 🙂

There are tools to learn patience in such cases, easier said than done, but still, tools. There are ways to handle occasions when patience gives way, to take that brief time-out to center yourself before you face the patient who could be forming the question for count 101. There are facilities to ask for help, to take breaks by getting respite care, and so on. But at that instant when the question is asked, it is difficult to remember all these–at that time, there is only a reaction, and after that reaction, there is a secondary reaction of either smoldering anger/ deep fatigue, or guilt…guilt because, at some level, we remember that the patient is himself helpless, and we perhaps failed him in some way by forgetting that.

I have faced these situations for years, and patience has been hard to come by and difficult to build. It comes in flashes, then vanishes when subjected to more severe tests. At times I sit back and say, hey, I’m patient now–but a higher entity grins back and says, oh yeah, you think so? Now field this problem and let’s see. And while I do claim to be patient most of the time, I always touch wood when I say so, because I know I may not be patient enough if the test is too tough.

Why is patience so difficult? Why do we end up taking so much of a dementia patient’s behavior as a personal imposition even though we know rationally that the problem is caused by the disease and the helplessness it causes? I suspect this is because, to survive in the world, we need ego and identity, and whenever there is a stimulus, we feel we need to react to it in ways that are self-preserving. And somehow, we oversize our ego to see more situations as threatening than we need to.  Instead of seeing a question as just a statement to respond to (or maybe, not even needing a detailed response), we see it as an imposition that, at a minimum, robs us of time and attention.  We extend it to say, what if this happens again? How long can I take it? We personalize it (he doesn’t care I’m tired), we project it (how many years can I take this), we make it really big (I’ll have no life left!). If it was bad enough to begin with, we make it horrendous.

Funnily, this is a total mismatch with the way the patient is asking the question, because compared to our ultra-sharp memories of the past and our ultra-sharp ability to extend it to the future and feel the potential frustration right away, that person doesn’t remember having asked, and is not likely to remember the asking in the future.

There is no cure for dementia, only a compassionate handling and caring. But perhaps we caregivers can learn to take the problem as it is, and even if we cannot reduce its impact, at least we can stop bloating it into something more frightening and overwhelming. Perhaps, faced with a person who has no memory (and hence, no common threads of a personality), we can train ourselves to set aside our own ego and our need to protect ourselves. This is not what we are taught in schools and home, this is not how we think we can survive corporate battles, but perhaps this perspective can enrich other aspects of our life.

Imagine, for example, operating from a calm center within, where nothing people say provokes you or feels threatening, so you can always optimally act (without stress). Think of all the medicines you may not need, all the headaches you can avoid, all that fretting, worrying, scheming, and sobbing you can save on. Not just as a caregiver, but as one who also operates in other spheres of life.

Every one who interacts with us comes from his or her own world and own perspective. He or she brings into each interaction so much baggage and so much agenda that much of what they say is to do with what they are (or are not). If every time we have an ‘unpleasant’ interaction with anyone, we can remember this and see the interaction for an episode as such rather than a personalized attack, we may be open to so many more situations and solutions, to creativity. I think life may well be richer overall, and even be fun.

Perhaps learning to cope with caregiving activities will strengthen us in ways that help us in this and unexpected ways, if we accept this possibility.

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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.

2 Responses to dementia and repeating: when hundred is equal to one

  1. austere says:

    This is beyond the realms of what is humanly possible.

  2. Indra says:

    My husband has parkinson since 2003 and has now Alzimere ,I take care of him .

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