Day 2 and warming up to the blogging

Yesterday I thought I’d do a neat fit-into-boxes categorization of a month’s worth of blog entries, but I found I was too scattered in my thinking, so I’m letting my instinct take over till I get back my “blogging fingers.”

Here, for example, is one thing that bothers me…

Sometimes, when I tell others (non-caregivers) of the stress that dementia caregivers face, or of the challenges posed in looking after dementia patients, they semi-shrug and say, “Oh, we know the problems of looking after elders–doesn’t everyone! But our parents brought us up, so it is our duty.” Some even say, “You think those people have it tough because of their parents? You should see my parents! Really, my parents are the limit!”

It is almost as if mentioning dementia problems or the difficult situations faced is making a mountain of a molehill or angling for sympathy without having done anything unusual.

After all: Don’t we all know, the world is full of “difficult” people…

I think I know what this post is going to be about — it will be about the diagnosis of dementia and why people need to understand that dementia is not the same as ageing. It is a medical condition, and needs to be understood as such.

Every medical condition brings it challenges and stress. And a diagnosis of a severe condition necessitates a shift in the way the family handles it and  supports the patient.

For example, when a parent has a heart problem, and is hypertensive, the whole family gets tense along with the patient, scared to do something that may upset this matriarch with a not-so-nice (physically) heart. Oftentimes, the patient is treated overcautiously. See her about to lift a bucket? Run and snatch it from her hand. See her about to climb stairs because the electricity went off and the lift is not working? Make her wait while the we get the maintenance man switches on the generator and makes the lift work again. Family’s just eaten a rather spicy snack and the patient is complaining of gas? Take no risk, rush her to the hospital, it could be a heart attack instead of gas. We are all tuning our lives around the reality of the patient’s condition, hoping nothing goes wrong, trying to support. It gets too much work sometimes (or often), but we understand there is a problem, and we do what is needed.

A cancer patient and his/ her family faces the bleak prospect that the surgery, the radiotherapy, the chemotherapy may not work, juggles with remission/ relapse statistics along with the inhuman nausea and the intense pain the condition and the treatment bring. Talk of stress, and it’s here, full dose, and everyone understands this…

Yet, when it comes to dementia, the family and others dismiss the medical reality underlying it and view it as “inevitable with age”, like a form of “exaggerated age”.  The people around the family (and sometimes the caregivers) behave as if interacting with the patient is the same as interacting with a stubborn or disabled person. This totally ignores the situation being faced by the patient.

Most of us live busy lives, and while we all want to do what is right and to be considerate and all that, we frankly don’t have the time and energy to go around understanding others’ problems and helping them–heck, we have enough problems of our own.

On the other hand, we don’t want to hurt others either.

To give an example, if a neighborhood lady has heart problems, we may not go and chat with her about it or offer help to the family, but we also don’t walk up to her and say, “Why can’t you walk up the stairs? Why are you so fussy? Where’s your willpower?” And if we notice the lady struggling with a saggingly heavy shopping bag, and we are headed the same way, we may even offer to carry it for her (or pretend we haven’t seen her so that we don’t have to offer 😦  ).

Here is my concern:  our society-level ignorance of dementia makes many (most?) of us downright inconsiderate and hurtful to dementia patients and their family. Because we equate the patient’s problems with “old-age” and term the problems as “normal”, we interact with the patients in ways that are stressful and cruel to them. By criticizing the family members as being “neglectful” of such elders, (basing our criticism on our ignorance of the needs of a dementia patient), we place pressure on them to do things that could make things worse for the patient.

Ignorance can be pretty dangerous….

Imagine a diabetes patient and his spouse forced to live in a joint family where diabetes is not recognized or understood. Everyone plies this person with foods that make the patient’s sugar levels shoot up. The patient’s (and the spouse’s) protests are ignored; the patient is told not to be fussy, to stop pretending there is a problem and be normal, and is told, “You look perfectly fine. There’s nothing wrong with you.” And the spouse is told, “You have been pampering him too much. He should live normally, not have all these fussy eating habits. All of us eat sweets, there is nothing wrong about eating sweets, why is he acting fussy?”

Sounds unfortunate?

Now imagine a dementia patient, who is increasingly disoriented about the surroundings. This man faces problems understanding people and doing things. People around him say, “Come on, everyone grows old. You don’t have to give up like this! There’s nothing wrong with you. Do a couple of sudokus every day, and you’ll be fine. And stay active. Look at Mr. ABC, be like him!” And then people also tell the children, “You should make your father a more active life. He is slipping because he is not active. It is up to you to make sure he remains okay. Take him to meet people, force him to do new things.”

This probably does not sound as bad as the previous example, but I think the situation is analogous. Because of general ignorance about dementia, most of us treat it as an  “attitude problem.” We adopt behaviors that are unsuitable and inconsiderate and harmful towards the patient and unsupportive to the family.

The way I see it, accepting that a dementia patient’s problems are different from the challenges of normal ageing is not a sneaky way of getting sympathy for the patient or family; it is an acknowledgement of a reality so that our interactions with the person and family are suitable and considerate.

I think I’ll continue on this tomorrow…

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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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