A nuclear family sans elders, blissful ignorance about ageing and elders, rude awakenings

While I continue mulling about ageing, here’s a confession about my blissful ignorance about ageing and dying as I grew up in a nuclear family, just my parents and I, and then moved over to my own nuclear family with my parents nearby. Truth is, right till I was almost forty years old, I never spared a deep-enough thought towards ageing or death. Not that I imagined that people lived forever. I knew people died, I even knew they got frail and dependent and fell ill, often more so if they were older, but I never thought of how it impacted them or their families and all that.

I’ve learnt stuff since then, though 😦

My mother’s parents died when she was very young, as did my father’s mother; my father’s father (whom I called Baba) lived with his stepdaughter in Delhi because my father was on postings outside Delhi. Baba would visit us for a few weeks every year, a frail man who carried a cloth bag full of Urdu and Persian books when he went out for long walks. He did not have anything much to say to me. For those few weeks when he was visiting, home would seem somewhat different, but not by much. He was in good health, and except for his habit of smoking the hookah, there was no oddity of his that I noticed too much.

When my father finally got posted to Delhi, I remember this discussion on whether Baba would want to move in with us, but Baba wanted to stay in Delhi 6 with his cronies nearby. My contact with him was this once-a-month visit when my mother would drive down to Turkman Gate with me, and Baba would come to our parked car by rickshaw and she would drive him home for lunch with us, and a few hours later, he would be dropped back and all would be normal again for him and for us. Then he started falling ill, and his visits reduced, and then he fell more ill, and there was talk of whether he should now be looked after by his one and only son, my father. Read the full post here

Of mirrors, identity, and the faces of dementia

I’ve always been bad at recognizing faces. If you have stood in a school’s lobby, peering at dozens of kids in uniform, not quite sure which of the alleged cherubs is your son, then you know the sort of problem I’ve lived with all my life. I dread to think how this problem will make things worse for me if I get dementia. And I know that for my mother, who had a similar difficulty with face recognition, this would have added to the woes of her dementia confusion.

Most people see the same face, the same person, regardless of the person’s changing expressions. But for me, each person has many faces, depending on the mood or place or what he or she is doing. This means, I have to remember so much more if I want to be able recognize someone. Other clues are not dependable either; people change their styles of clothes, their hairstyle and color, they put on weight, they lose weight….so very unfair, I tell you 😦

Decades of living with or near my mother has, however, made me confident about recognizing her face in all its moods. As I saw her slip into the confusion of dementia, I would watch her once-sharp-and-beautiful eyes look glazed, confused, even dull. I became familiar with those tiny changes in the muscles of her face that indicated the beginning of agitation; I tuned myself to preempt her agitation before it became full-blown. Her face is, to me, a collection of parts, and I know how each feature changes through her range of emotions.

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Understanding, believing, denying

Because of my concern about dementia awareness in India, I participate whenever I can in awareness programs, talking to people about dementia and caregiving.   The Dementia India Report 2010 says, “Awareness of dementia in India is low.” I see this as a polite understatement in a country where people usually fail to recognize dementia as a medical problem because they see the symptoms as either normal old age, or a mental problem (read: madness). Many (most?) doctors are not alert about dementia.

Awareness of anything, as I understand, needs both information and belief.

Usually, when we explain dementia, the focus is on disseminating information (and maybe case studies/ stories/ incidents), assuming that people exposed to the facts will believe them. But sometimes, even after hearing or reading about dementia, people don’t register what it is.  Information percolates only if people are willing to believe it, and many things come in the way of believing that dementia symptoms are caused by medical problems.
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slipping one unfiled paper at a time

This is an anecdote, but not about a dementia patient. This is an experience related to me by a friend, and about her father who remained mentally alert till he died.

My friend, let’s call her R., lived near her father – a professional who had been very organized all through his work-life. After retirement, he remained particular about his records and filing. Once, when he fell ill for a prolonged period, R had to look through his papers, and realized that they were somewhat disorganized as the files her father was using were the old government tag-file types.  He had also not kept a record of his earnings as his tax was below the minimum limit.
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this month, a year ago

Last year, I blogged daily through the month of January, and I always felt I had a lot to share. This year, as I go through this a-blog-a-day month, I find myself in a very different frame of mind. More mellow, with less to say…

A few posts ago, I mentioned how much has changed in my mother’s state in the last year. As dramatic, as important, has been the shift in my perception and attitude. Last year, around this time – give or take a month or two – I was busy sorting out my approach to my mother’s challenging behaviors. She would have mood swings, she would say things that hurt, she would swing dramatically between sweet coöperation and gentle behavior, and angry, frustrated words and actions. Thinking and blogging and reading – these helped me explore what could be happening and how to handle it.
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Knowing what dementia is, versus understanding what it really means

A few weeks ago, as I was working on how to increase awareness about dementia, I realized that most people who know about dementia don’t really know about it. They can talk about how unfortunate memory loss is, and how awful it must be, but the sentences are more like quotes from articles they have read, or what they have heard. Because, a few minutes later, they slip into behavior that can be extremely stressful for the patient, or come up with suggestions that leave the caregiver scratching his/ her head, wondering how to explain it all over again.

Memory loss is one of those overused phrases. We joke about it all the time. Misplaced the car keys? Joke: You are getting senile. Joke: Maybe you have dementia. Senior moment. Whatever. Forgot a birthday? hey, you’re getting old. Grin.

So when someone says, dementia is memory loss, we assume it to be more of the same. Maybe losing five car keys? Forgetting ten birthdays? It is bad, inconvenient, but not heart-wrenching. And just as we don’t make too many concessions for someone because they misplaced their spectacles or car keys or forgot which day of the week it is, we expect a dementia patient to, more or less, be normal (except that she has misplaced her keys, poor dear, smile).

For years after my mother was diagnosed, I made this same mistake. I made allowances for memory loss, but didn’t quite understand (or try to) how memory loss could so totally affect behavior.
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thought experiments and dementia-related priorities

In a rather interesting presentation I attended, an expert asked a roomful of persons associated with dementia caregiving: how many of you believe you will get dementia? Picture a roomful of people, sixty or more. Only two persons raised their hands.

The percentages are not quite that way, folks 🙂 . The 2009 report on dementia facts and figures (USA) gives Alzheimer’s as the sixth leading cause of death, and the major risk factor is age. According to American statistics (see 2009 report from alz.org (PDF file)at www.alz.org) Of the current population in USA that is 71+ in age, around 11% men and around 16% women suffer from dementia (there are more women because they live longer). It is estimated that more than 20 percent of women reaching the age of 65 would ultimately develop dementia (estimated lifetime risk), compared to approximately 17 percent of men.
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