The caregiver learning curve

Many persons (who understand dementia) advise caregivers to be calm and loving and to never argue with patients. It is good advice, but these advisors then expect the listening caregivers to see the wisdom of the advice and change immediately. They forget that their suggestions require the caregiver to change habits built across years, and also involves the caregiver going through a very hurtful emotional acceptance about a family member who now has dementia.

Some habits are required to cope with the situations and people around us, and are deeply ingrained in us.

Suppose I go to a shop and buy something, and after I have paid, the shopkeeper demands money again. Will I opt for humor, distraction, cajoling, agreeing with him, and paying again? Or will I explain and then (if that does not work) argue?

Suppose I have spent three hours cooking an elaborate dessert for my kid, and the kid has consumed it all. Then the kid claims she never got the dessert, is hungry, and has been starved. Will I agree that yes, I am mistaken? Will I argue? Will I feel no annoyance or frustration or anger? Then the kid goes and tells the neighbors the same thing, and they believe the kid. What will I do?

Or consider this. Suppose, two years ago, a relative visited us and while living with us suffered an infection serious enough to require hospitalization. As I am sitting with my husband and talking of a neighbor who has suffered the same type of infection, my husband claims he has never heard of such a disease. Will I mention the two-year-old episode or not? Okay, so I do. Now he claims there was no such visit, no such relative, no such hospitalization. Will I say, Of course, of course, you are right my dear, would you like some chamomile tea? Or will I start convincing him, giving cues, arguing, maybe fishing out an old diary as proof? Or even go to Wikipedia to show the listed symptoms to convince him I am right…

What I am say is that arguing, convincing, proving one’s point, and making sure others accept our memories as “the facts” is something most of us do all the time. Life would be extremely difficult if we did not do so. Not all of us sit cross-legged in the Himalayas.

These habits misfire when talking to dementia patients, but we still need them in other spheres of our life, as we have been doing to deal with stuff right from childhood.

And the people advising family caregivers often expect them to change this life-long pattern of behavior overnight.

I have to admit I have always found it difficult to change habits. I find it difficult to even make minor changes– getting out of bed the other way, changing minor food choices (like the amount of chillies or salt), reducing my daily quota of chocolate, changing my sleeping hours.

Luckily I was never a smoker, so that is one habit change I have been spared 🙂

When I started changing my way of talking to my mother, it did not happen overnight. Lapses were frequent in the beginning, then reduced. I could manage the new way of communicating easily for some types of situations but not for others. I required constant mental reminders and lip-biting and nail-pressing-into-palms, heaps of deep breaths whenever my old habit would surface and I would determinedly set it aside and behave in a new way. I often caught myself mid-sentence and corrected my way of talking. It was exhausting work, but as the payoff started getting visible (better communication, fewer “episodes”), my mistakes reduced. Hey, I would not even call them mistakes; they were part of my learning/ transforming curve. They were unfortunate incidents, but I emerged, as did my mother and I will neither deny and hide them, nor feel guilty about them. I did my best in my own way.

And frankly, I do not know any caregiver (family or institutional) who had never made a mistake. Nor do I know any caregiver (family or institutional) who did everything the right thing from day 1 incident 1, or one who never lapsed, never got irritated.

When discussing how to understand and help dementia patients, we often talk of how we can do this best by understanding and respecting their reality and then working within that context to communicate with them and help them.

May I extend that to say: the best way to understand and help caregivers would be to understand and respect the family caregiver’s situation and reality, and then offer empathy, suggestions, and resources relevant within that context. I think this is the best way to help caregivers move over to more effective ways of caregiving as well as lead fulfilling lives themselves.

Another thing: I don’t know about you, but I don’t listen too well to people who tell me I am wrong, I am stubborn, and that I don’t change fast enough. I don’t like people telling me what my duty is. I don’t like people who trivialize my problems and keep telling me what to do. Okay, so I may not yell at them or act rude, but I switch off and stop paying attention to what they are saying. I may either feel annoyed or I may just feel sad that they don’t understand. I’m not the sort who feels guilty easily, but I suspect that easy-to-feel-guilty people would mentally block out criticism that makes them feel guilty.

When advisors talk as if they never make mistakes, I don’t believe they are being truthful. Or I feel I’m no saint so what this person is saying won’t apply to me. Personally (and perhaps I have lived my life in the wrong circles) I don’t know a single person who has expressed unconditional love and wisdom day in and day out, and has done so since bawling childhood days.

In my opinion, everything in life involves a learning curve. It may be short or long, easy or difficult, but it exists. Lessons can be conveyed by an advisor, but learning and changing are processes the receiving individual must undergo.

Think of it this way: if just listening were enough, why would we need so many algebra practice sessions to solve quadratic equations when that is merely the application of a formula? Or why doesn’t a parent who knows swimming just tell his child what to do and make the child an expert swimmer in a day?

I think we must recognize that caregivers go through individual learning curves. Different people progress at different speeds, and all that another (more experienced and helpful) caregiver/ advisor can do is to travel alongside a newbie caregiver to help this newbie caregiver cross this curve faster.

I do not think it is practical to expect a family caregiver to overhaul and transform their entire modality towards a patient after attending one training session or reading one book or a few pages on a website. Often people who learn effective caregiving (including those who acknowledge their mistakes and learning curve) assume that now that they know how to handle dementia patients, they can transmit the wisdom through a few words and that the listening caregivers will, right away, be convinced that they must change, be willing to change, and be successful in implementing the change. As far as I know, it unfortunately does not work that way.

Family caregivers face problems on multiple fronts. Rapid transformation is easier said than done. Lectures are easier spouted than implemented. When advisors show impatience/ judgment/ criticism or doubt the caregiver’s motives (these family members don’t care enough to change), such talk works no better for family caregivers than it would for any other human being in any other learning situation. Such expectations do not show enough respect for the caregiver’s situation; they do not accept the caregiver’s reality.

If you are bubbling with advice for caregivers, here is what I suggest. Think of the caregivers’ situation– -the visible decline of a person close to them, multiple adjustments to make in life, caregiving that fills days and nights, social isolation, the lack of support and resources, all of which will continue to impact life for years—and then decide what suggestions you want to give, and how best you can give them.

More blog entries on caregiver role and identity are available here: Caregiver Role.

Resource page to prepare for the caregiver role is available here: Understand the caregiver’s role

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages:

2 Responses to The caregiver learning curve

  1. Supriya says:

    Your right Swapna, the caregivers learning curve is so steep. And by the time you have figured out the best fit behaviour a lot of time has slipped by. Sometimes very little is left. Looking at it from the other side anyone who has never ventured into caregiving has no awareness of what emotional and physical trauma we caregivers are faced with. Its always so easy to give free advice. Perhaps as caregivers like you share thoughts the awareness will grow and some of it will rub off on non caregiving family members too.

    Till then …….

    • swapnawrites says:

      Thanks for sharing your thoughts, Supriya. Much appreciated, as usual. You are doing a great job as a caregiver, and your sharing your experience is probably a great help to other caregivers, too…

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