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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Dementia Awareness in India: Some Recent Observations

Some days ago, I was asked whether dementia awareness had improved over these last few years in India. Not an easy question to answer, for two major reasons. One, I don’t socialize much, and most people I end up meeting are people I know because I am a caregiver and a volunteer in dementia care — obviously a biased sample. Two, even when I do get to meet other people, I don’t really go around surveying them to understand the level of dementia awareness.

But I do have some recent anecdotes to narrate –  all these instances happened in the last few months.

Earlier, when I met people outside my dementia care circles, I would not mention my caregiver role in any detail. All I’d say was that my mother needed care. This was because I found most people uncomfortable with any mention of illness, and anyway they did not understand dementia. Even a factual statement from me about what occupied a large portion of  my life was enough to make them start avoiding me, as if getting pulled into a caregiver role is contagious.  But for the last two years, as I have increased my blogging and my volunteer work in dementia care, if someone asks me what I “do”, I say I am a caregiver and that I also do volunteer work in the area of dementia care. This has led me to some of the experiences that I am sharing below.

I have qualified in engineering and management from reputed institutions, and worked in well-known organizations before starting my own consulting practice. So there are people who expect me to be a “professional” and whom I meet in various alumni meets. It was in one such alumni party that I met a high-profile social worker, whom I shall call ”Cee”.  A person in the mid-50s, with a family that included parents and elderly in-laws, Cee spends most of the time helping some big volunteer organizations with their strategy, getting them funding, doing  advocacy – things like that.

Cee and I got talking, and I tried to understand more of what Cee was doing. I was asked, in turn, about my own work and career, and I explained that I was a dementia caregiver and volunteer. Cee looked blank at the word “dementia.” So hey, I have practice on this, and I gave Cee a very simple explanation of what dementia was. Blank. I gently pointed out that, as Cee lived with four elders in their seventies and eighties, and probably knew many others in that age group, perhaps this could be relevant, because otherwise Cee and family could mistake early stages of dementia with normal ageing, and thus miss the window where treatment was effective. Also, there are reversible dementias.

Cee was polite, and made the usual, social comments, but I did not sense any real interest or curiosity. I was a bit disappointed; to me, Cee was the profile that needed to be aware of dementia  — because of age, living with elders in high-risk age groups, and because of Cee’s social work background.  But I reminded myself that dementia is probably not appropriate party talk, and we exchanged e-mail ids and moved on to the food tables.  We sent each other emails later, and I repeated a few basics of dementia and gave links in case Cee wanted to read up more, but I got  a feeling that Cee felt that dementia was irrelevant to Cee’s personal situation, and just another sphere of social work.

At the next alumnus meet, I encountered another person (let me call this person ”Dee”). When, at introduction time, I mentioned that I was a dementia caregiver and volunteer, Dee took me aside. “Tell me, if you don’t mind,” said Dee. “What is the difference between Alzheimer’s and dementia?” Over the next hour, we nibbled at snacks as I explained things about dementia and answered Dee’s questions.

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My mother, a collage of my memories

I’ve been writing a lot about my mother as she has been these last few years. She is now bed-ridden, apparently peaceful and happy, and mostly silent, uttering a few words for an immediate need, but not articulating anything complex. But she was very active some years ago, sharp, very clear about what she thought and wanted, and today I’ll step back into the past and share more of the person she used to be before all this happened.

My mother was a very private person, for one. But she was also very particular about helping people and often went out of her way to do things for them. One thing she was very insistent about was about donating her body. At a time when she was already facing problems writing, she once heard someone say that body donation does not happen if the person has not clearly declared the intention of body donation. A couple of hours later, she handed me a paper. Here’s an excerpt:

My mother does not know I blog. But given the above, I think I am meeting in intent what she would have wanted.

Outside India, people understand that people who get dementia were not “lazy” or inactive, low-IQ laggards who could have avoided such a fate by being active. But in India, as I wrote some days ago, people behave as if dementia is something that touches only people who were, in some way, negligent.

No one could have called my mother lazy or low in willpower or negligent.At a time when women barely studied and very few studied up to graduate level, my mother completed multiple post-graduate courses. She taught in colleges and schools till she had to give it up because of my father’s frequent transfers and other such problems.

When I was in school, my subjects were very different from what she’d studied. But till I reached class eight, she tried to stay abreast and teach me when needed. She had never studied geometry, but she picked it up for me. And Sanskrit.

She loved driving. Absolutely loved it. Drove much better than my father did. I remember once, when a colleague of my father had to be dropped somewhere, he somewhat hesitantly requested that my mother do the driving instead of my father 🙂

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Hints and misses

In those early years, before my mother was diagnosed, and in the period just after, there were several small things that struck us as odd or surprisingly hurtful.

I did not piece them together into ‘dementia behavior.’ I saw in them patterns that indicated out-of-touch with contemporary life, unfair use of ‘authority’, lack of love, inconsideration, and worse. I responded by withdrawing, hurt and bewildered (what had I done to deserve this), and an occasional protest. I did make some attempts to explain and understand; often these seemed to go well, but within a few hours, my mother was back at accusing me of all sorts of motives and complaining about me to anyone and everyone. Often when I meet caregivers now, I find them going through the same phase of hurt/ bewilderment/ frustration/ helplessness. Many are angry, others are sad, but helplessness about how to cope underlies most situations.

Some problems I faced were minor irritants, some were major issues. In today’s post, I’ll share some of the minor ones, which could have been taken as hints of her condition had I been better informed:
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Ramblings on love, hate, and a life worth living

February has been a mixed month for my mother, the most painful part being when she went down with fever but could not tell us where the pain was. Being a dementia patient in an advanced stage, she cannot communicate her problems to us, which means we have to be detectives. Much investigation and deduction was attempted, without success, medication given to control the fever. Two days into the problem, she broke and swallowed a tooth–ouch! She broke another tooth again, the next day. Ergo, a tooth infection. Fever’s under control, and a dentist was requested to make a home visit to assess her dental status 🙂 A major project is now to be planned–a trip to the dentist to remove another tooth that is tethering on a breakdown, and to clean up the stuff left behind by the two not-so-neatly broken teeth. That she is fully bedridden makes the challenge more, well, challenging. Ah, well.

But what’s prompted me to write this blog is something quite unrelated, actually, a few unrelated things, that happened these last two weeks.

Firs, I’d like to share a memory dating around seven years ago. Seven years ago, I was still naive about dementia and how it affects people, still thinking increased memory loss was like losing ten keys a day instead of one. My mother was in her own denial mode, unwilling to admit to any memory loss. The world around her (as I can see in retrospect) bewildered her, and she was not going to tell anyone that. She was a fighter, she was. Often I saw her writing with a fierce concentration in a diary, and snap it close when I entered her room. One day, she left it open near her breakfast tray, and there it was, written with a red pen, written so angrily that the pen had torn through the paper. There were many broken sentences on the page, and I stopped short when I saw my name. She had written that she hated me, written it again and again and again, and written about others she hated, and at the end, there was: I hate hate hate the world.
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Decision making for dementia patients

As I mentioned earlier, one of the most frightening parts of caregiving for me is taking decisions on behalf of the patient.

In most aging, the elder takes his or her own decisions, but in the case of dementia patients, decision-making is the caregiver’s responsibility. Is the patient in pain or not, and should I call the doctor? What, exactly, is paining, and how much? Did the patient’s pain reduce with the medication? If the doctor offers a choice, should antibiotics be given or not, if the patient may not benefit from them? How aggressive and invasive should treatment be? Should the patient be hospitalized?

My current phase of caregiving may require tough decisions that my mother can no longer participate in, as she just does not understand anything. There is so much confusing information around, so much “there is no right answer” type of advice, so many pros and cons to weigh.

Let me illustrate with an example.
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We need more of us sharing our caregiving experiences

In many of my blog entries on dementia and caregiving, I have shared my impression that poor awareness of dementia in India is a major concern area. I often feel that dementia is far less understood in India than in some other countries, and that the role of the caregiver not seen as a significant, contributing role  that needs special patience and skills.

Relevant in this context is the work of 10/66 Dementia Research Group. To quote them:, “10/66 refers to the two-thirds (66%) of people with dementia living in low and middle income countries, and the 10% or less of population-based research that has been carried out in those regions.” This group is a collective of researchers working on population-based research into dementia and related areas in these countries.

Interestingly, the website includes a report on Qualitative Studies which confirms my view of poor awareness of dementia and caregiving in India.

The report reminds me of a support group meeting where a caregiver shared how, when his father was diagnosed with dementia, the family was so ashamed they wanted to institutionalize him and  isolate him (hide him, get rid of him so that they were not associated with him), and when the son took over the caregiving, they isolated him, too.

I think we need more people speaking up about dementia, and about caregiving. We need more people admitting that the elders in their family have dementia (admitting to themselves, admitting to others). I hope more people will write about it (blogs, books, articles, reports, novels, whatever), speak about it, think about it, so that one day people with dementia in our country can life a fuller life to the extent their ability allows them, and carers can care for them and lead fulfilling lives of their own, all done with dignity.

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of excuses and reasons and cognitive ability

My last post was about how my mother lowered the complexity of what she read, and altogether stopped reading books and novels. I wondered whether this was a contributory factor in her cognitive decline, or an outcome of that condition.

This reminded me of my reading habits. I love reading, and devour books of any sort. But, come to think of it, I don’t always read attentively. Often, in my eagerness to finish a book, I skip through the descriptions, or paragraphs that seem long and don’t have any dialog (I read the first few sentences, skim the rest, and read the last sentence.  I consider that to be a choice for optimizing reading time and amount I can read; I do not consider it laziness.

Of late, I wonder whether would I be able to stay attentive and read those dense paragraphs if I wanted/ needed to.

The reason I started thinking about this is a remark of my son. His reading interests are very different from mine, and he often sends me links to TED talks and to articles on the topics that fascinate him. A day or two after he e-mails them/ mentions them on chat, he will ask me – have you read it? What did you think? Sometimes I read what he sends me, and sometimes, especially when the article is dense and long and about a topic that is of no prima-facie interest to me, I do not read it.

Once, when he asked me why I hadn’t read an article, I told him it was very long. And he said, “You shouldn’t lose the ability to read long articles.” His words struck me hard, and I started thinking – when I avoid reading long articles or dense descriptions, am I ‘optimizing’ my time, or am I just avoiding something I find tough and rationalizing my reduced span of attention?

I still haven’t read the article that prompted my son to say that sentence, and I have (conveniently?) forgotten where I saved the link, but perhaps next time he sends me a link, I’ll grit my teeth and labor through it just to make sure my mental gears haven’t rusted. And if they have, I guess I’d better start oiling them and getting them functional again…

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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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dependence

When my mother  was younger, she was fierce about her independence. She always said she would never become dependent on anyone, that she would rather die.

Then, as she became older and her physical and mental abilities reduced, her definition of what was ‘dependent’ kept shifting, always remaining slightly beyond where she currently was.

In my mother’s case, her dementia compromised her ability to understand the progressive nature of her problem and the inevitable growth in her dependence; it is hurtful to see that a person who valued independence so much can do nothing about her state, and understand nothing.

But thinking of her earlier determination not to become dependent, I cannot help wondering why the idea of dependence is so unacceptable to most people.

I think it is easier to say you will never become dependent or inconvenience people in the phase of life when you are independent. When I think of it, I cannot remember even a single person who, while dependent, remembers and acts upon this need to ‘not depend’.

I also think this concept of ‘never being dependent’ is often more about ego and sounding correct. It is wrong to inconvenience others; so, saying you “would rather die” sounds correct and possibly a bit heroic.

Why do people say they do not want to become dependent? Is it out of consideration for the potential caregiver, or is it ego, or both? I think it is very difficult to accept help gracefully, and it may be easier to refuse help (or ignore the help you are getting) than to accept it in a way that is fulfilling to both the giver and the receiver. I often think of the book, Tuesdays with Morrie, as an example of how people can ask for help and receive it with dignity.

Here’s a thought: most of us, if we don’t die in accidents or of a heart-attack, will end up in a dependent state for at least some time. It makes sense to be emotionally ready to accept this gracefully when it does happen–though we may try our best not to reach that state.

Consider an old man, determined to remain independent, frustrated and angry at an illness that makes him bed-bound, always talking of how he hates this dependence, and trying to sabotage his recovery process by getting up to do things (against medical advice), because dependence is abhorrent to him. People around him are equally irritated, and everyone is always frowning. There are no thank-yous, no smiles, only one man proving he does not want to ‘inconvenience’ people, and others arguing with him to accept that he cannot do anything himself.

Contrast this to someone who accepts that her current state makes her dependent, is ready with smiles and kind words to her caregivers, and asks for help in a simple, direct way. People around her may be tired, but they feel valued for what they do, and often find themselves smiling back at the patient.

Which patient would you rather caregive for? And which patient would you rather be?

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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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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.
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dreams and reality

I had one of my ‘favorite’ nightmares last night. It relates to reversal through time.

It starts with my mother being the way she is now, unable to do or remember anything much, but reconciled to it and peaceful (at least most of the time). I am driving her somewhere (usually to a doctor) and on the way, she starts changing. Her eyes get a life of their own, her way of looking gets sharper, her voice gets back its energy and coherence. I need to park to do something (buy something?), and when I return to the car, she’s in the driver’s seat.

At this time, she had become young again (well, around 60+, but that seems young to me given the way she is now). She is impatient with me, she remembers things that must be done (and that I have not done) and I realize that she no longer has dementia. She is, in short, back to being as…well… as energetic about her desires and values and about my mistakes as she used to be. She accuses me of having tortured and imprisoned her for the last few years under the pretense of dementia, and drives the car in a sharp u-turn just to prove how wrong I am, how very evil and scheming, and how competent she is.  Her face is a tight red with anger.
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Burnout and admitting that caregiving is not that easy

Admitting that you are finding something difficult takes courage, especially if it is not ‘politically correct’ to do so.

Which is what makes a couple of videos posted by Julie Winokur and Ed Kashi unique. A filmmaker and a photojournalist, this couple relocated and redesigned their life to look after Julie’s 80+ father, a dementia patient. As active professionals, with a young son and daughter, this meant a change in what their daughter called ‘a bunch of things’. The couple started out their caregiving journey feeling they were ready, that they were experts, only to realize as time progressed that no one can ever be ready for such a task.
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Of probabilities and acceptances and dementia risk factors

On this day eight years ago, a senior neurophysician told me my mother had dementia.

My mother and I sat in his consulting room. The doctor had conducted a number of tests, checked her MRI, and asked her many questions. When my mother, a highly intelligent woman who did masters studies in three subjects, was unable to answer his question of what equals 100 minus 7, she looked utterly woebegone, and somewhat ashamed.

Finally, the doctor turned to me and said that for her form of dementia, there was no treatment, let alone cure. He suggested that I try to keep her mentally and physically active, and hope the progression was slow.

I asked him, “Is the problem hereditary?”

“With a probability of fifty percent,” he said.

Fifty percent.

It was just too high.
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