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.

Summary post for the Jan 2011 blogfest

Having driven myself crazy trying to locate something in my own blog, I finally decided to create this summary post to give a quick reference point for all 31 posts I made this January. Here goes:

Jan 1: A new year, and this begins my month-long blog-a-day : Declaring my intent to blog through every day of January 2011

Jan 2:Day 2 and warming up to the blogging: How people, because of their ignorance about dementia, may be inadvertently hurting dementia patients and their family, and comparing awareness of dementia with other medical problems

Jan 3: Ignorance is not bliss… : Sharing memories of how persons, ignorant about dementia, have repeatedly hurt my mother by their insensitive and presumptuous remarks, and dismissed my explanations because they projected their own needs on my mother

Jan 4: Enjoying fun time with my mother : How I have found that my mother and I can enjoy many activities together, such as playing games and telling stories, even though she cannot really remember rules of games or follow a story.

Jan 5: The unexpected quality of openness : Having fun time with my mother resulted in our being relaxed with each other and her being able to open up more about her fears and problems

Jan 6: Being the Wind, being the Sun: Meandering thoughts about the years, my mistakes, my opening up, and learning. A decision to look into the past to see those mistakes and see how things could have been different if I had understood dementia earlier. The past is over for me, but others are still on that caregiving journey…

Jan 7: Pattern spotting : Explaining my belief that the tendency to fit every behavior into a rational model (that attributes intention) causes a lot of pain if the person behaving oddly has dementia; we see stubbornness and meanness where the real reason for the behavior is possibly confusion and disorientation. Sharing anecdotes that could be interpreted in alternate ways if I’d known of her dementia

Jan 8: Hints and misses : Things are always clearer in hindsight. Looking back to see how some incidents in the past (before her diagnosis) were indicative of dementia

Jan 9: Learning from our experiences : Explaining why I have decided to share, in the following blog entries, the progression of my mother’s dementia, and how it changed her life and mine.  What follows over the next few days may not be pretty.

Jan 10: Beginning to understand the reality of “memory loss” : How it started becoming obvious to me that “memory loss” was not just forgetting where you placed a key; it meant you couldn’t read TV timetables or make out whether it was morning or evening: anecdotes shared

Jan 11: Murderers, thieves, and an old woman amidst them : My mother’s confusion and disorientation created many difficult situations for us. She was scared and unhappy, and I was hurt by her accusations and clueless on how to handle suspicions

Jan 12: She doesn’t cook for me : Describing the difficult years of care, of being accused of neglect by my mother because she forgot things, of embarrassment I faced, and critiism

Jan 13: Hurting herself without meaning to : Incidents recalled when she exposed herself to cold weather or hot, skipped her medicines, and so on: all without wanting to hurt herself, but too confused because of her dementia

Jan 14: A common loneliness…: Looking back at those difficult years, trying to understand how lonely and insecure she must have been, how I did not understand, how I lacked ways to reach her. I, too, was overwhelmed by her constant suspiciousness and fault-finding and repetitive behavior

Jan 15: Care for everyone but a dementia patient… : Beginning to describe how I tried to adjust my life to care for her. How dementia onset is so insidious that one does not realize one is caring for a patient, and there is no guidance on how to handle it. I did not know I had embarked on a long caregiving journey…

Jan 16: Paring down to essentials : Continuing my description of how I had to keep shaping my life to cope with my mother’s continuously increasing memory loss and disorientation, and the consequent demands and accusations and insecurities. How people around me did not understand or support, and I had to keep cutting out chunks of my life

Jan 17: Reshaping career and identity : As my mother’s dementia grew, the impact started affecting even my ability to continue with professional commitments, and major adjustments were required

Jan 18: A new place, a new start : Describing the move to another city, how it was difficult for her to accept, and how I tried to gear the new apartment in the new city to exactly fit what my mother needed

Jan 19: The turning point, and becoming proactive : Sometimes, there are no simple solutions.  Describing how, when some persons close to us just would not understand dementia and kept hurting my mother by their comments, I had to take a number of drastic steps to give her a space that was safe. And how she finally started turning around and relaxing in this space I finally managed to create for her.

Jan 20: Not Alzheimer’s or Parkinson’s? Then why’s there a problem? : People are strangely reluctant to accept that someone could have a genuine problem if they have not heard of it.

Jan 21: On diagnosis, on doctors who may not know or care : Sharing my distress at how poor awareness of dementia is even within the medical community. How doctors in emergency services and in other specialties dismiss my warning that my mother has dementia.

Jan 22: Our first consultation with a specialist : Beginning a set of entries on my mother’s medical problems and our visits to neurologists. Here, I describe the fall that marked the beginning of my mother’s problems, her deterioration, and our first consultation with a specialist who was a good shrugger and explained nothing.

Jan 23: When the specialist laughed at her : Continuing the description of our attempts to find out what the problem was; this second specialist was one who wouldn’t bother to look at her MRI and who laughed at her.

Jan 24: Finally, some clarity about the diagnosis: The third specialist gives us a diagnosis, and tells us what to expect, but I could have done with more input on the “care” aspect

Jan 25: Echoes across caregivers, touching lives : I talk of my commitment to share multiple caregiver experiences through my website, and share my experiences of talking to other caregivers; there are commonalities we all share. Yet many caregivers are unable to speak of our problems, even under the cover of anonymity, and instead carry the hurt inside them for years. Links to available interviews.

Jan 26: A sense of loss : When a dementia patient loses his/ her memories, we suffer not just because we see our loved one suffering; we, too, lose our shared memories and our shared past. For spouses of patients, this is especially heartbreaking.

Jan 27: Understanding, believing, denying: On dementia awareness, and why just saying “memory loss” is not enough; people do not get a measure of the horror of dementia with that innocuous phrase. And shared anecdotal evidence of how even persons, even medical persons, who theoretically accept dementia as being caused by a medical condition are not emotionally convinced of this.

Jan 28:Over years of caregiving…: A rambling of how over a decade of caregiving has changed, or hasn’t changed me. I talk of the shifting profile of my work, my social life, my approach to life, and yet some changes are not deep enough

Jan 29:Past tense and kadhi pakodi : How someone thought my mother was dead because I often use the past tense to describe her likes and dislikes. Tracing her fondness of kadhi pakodi over the years to show what has made me inadvertently switch to the past tense. We all change over the years…

Jan 30: My mother, a collage of my memories : A nostalgic piece about my mother, her childhood, my childhood, a jumble of memories, some shifts in impressions as I re-examine things with adult eyes. Some scanned memories, some tears that make me stop writing

Jan 31: Phew! A month-load of blogs done; time to pause to breathe and have dark chocolate : Blog marking end of 31-day blog fest and over 51,000 words, and declaring I’m off to have dark chocolate and pamper myself by doing weird stuff

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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 three post-graduate degrees: Psychology, Philosophy, and Education.

My mother taught in colleges and schools till she had to give it up because of my father’s frequent transfers and other such problems.

A few years ago, in a dementia daze, my mother tore off many important documents of her past, but some survived. For example, there is this thick typed document that was part of her M Ed work. It was a document she was particularly fond of, and work she felt deeply about.

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

Past tense and kadhi pakodi

A funny thing happened at one session where I was discussing dementia challenges with some caregivers.

We were all talking of problems typically found, and I was sharing some anecdotes of mine, some mistakes, some solutions. There was one gentleman caregiver who was in a bad state, desperate for solutions of how to handle his father. He was sharing his problems and listening to what others were saying, making notes.

At that moment, someone who knew me well asked me about how my mother was doing, and as I began describing, this gentleman interrupted me with a shocked expression.

“Wait,” he said, “you mean she’s still alive?”

Over years of caregiving…

Time for self-centeredness. Today is about I, me, myself…

I’ve often written about how I have tried to care for my mother, made mistakes at times, succeeded at times, made changes in my attitudes and in the environment around her and so on. I’ve talked about my involvement in dementia awareness and helping caregivers and all that.

Today, I’m talking about how (and if) these last several years have changed me. I’m looking back at the journey I started without knowing twelve years ago, then began resenting because it was a can’t-get-off-this-ride journey, and have finally slumped comfortably into (for the time being).

Being the Wind, being the Sun

I read a story long ago of the Sun and the Wind arguing about who is more powerful.

Then they spot this man walking on a road below, wearing a cape, and decided that whichever of them could make the man take off his cape was the more powerful one. Wind took the first turn, and blew a gale hard on the man, hoping to force the cape off him. The man only drew it close around him, gripping tightly like his life depended on it. The harder the Wind tried, the tighter the man clung to his cape. Then the Sun took his turn, and shone gently on the man, and the man relaxed and took off his cape.

Of course, the story doesn’t make all that much sense if we factor in that the Wind did the only thing it could, and so did the Sun. But I always think of this story when I remember my years of caregiving for my mother.

Preparing for the caregiving role

As a caregiver, the most unpleasant phase for me was when I acted as a functional caregiver.  I tried my best to do things right, but had not grasped the full impact of the disease on my mother’s personality and behavior, and didn’t know how to avert or handle challenging behaviors. I used  ‘common sense’ and rationality, and when they failed, I got frustrated, irritated, angry, exhausted, or just depressed. Those emotions didn’t help, either.

I was stressed, and struggling to keep a normal life running so that this stressful activity did not swallow me up.

The switch happened when I sat down to review my life and saw how all-pervading the impact of my caregiving role was. My social life had vanished, my circle of friends pruned down significantly. I had been forced to adjust my career direction and intensity dramatically. My mindset had changed, my emotional and intellectual mind-share had changed.

shifting roles in caregiving

This month is a month of introspection for me as I look back at the years I have been caregiving.  Like most caregivers I made mistakes, got overwhelmed and exhausted. I won’t even try to count the number of times I was angry (not just irritated or frustrated), unable to handle ‘difficult behavior.’

One interesting thing I notice in hindsight is that there were distinct phases in my caregiving role, and that as I progressed along these, caregiving became more meaningful and fulfilling, and less irritating and exhausting.

To begin with, I did not even think I was, or would become, a caregiver. Perhaps I can call that phase as absent caregiver This was when my mother’s behavior showed anomalies and caused problems, but I thought they were because she was getting old (all old people have memory problems, don’t they?), or felt she was being uncooperative, egoistic, and stubborn. The doctors had mentioned atrophy and ataxia, and I did not understand (or want to understand) the impact on her ability to do things. Her strange acts were sometimes amusing, sometimes an embarrassment or an inconvenience (sometimes severe). I kept my distance, coped with it, and planned no further.

stages of dementia

The progression of dementia is often understood and explained using ‘stage of dementia’.

Often, in its early stages, dementia is so much like normal aging that it is indistinguishable and often under-diagnosed. As dementia progresses, the differences between dementia and normal aging start becoming prominent. Often, at least in India, it remains under-diagnosed, and families just assume the elder is being stubborn and troublesome (which is why we need more dementia awareness programs). Then, as the situation worsens, families start realizing that this particular elder needs something different, something special. Doctors are consulted, diagnoses obtained, and treatment started as appropriate. Behavior at this point often includes stuff that harms the patient or others around him/ her, and gets tricky to handle. Often, even at this stage, non-pharmacological approaches are not considered, and it is assumed that only medicines can be used to manage challenging behavior.Then, dementia progresses to a point where the dependence is obvious, the disease is obvious, and the patient needs full-time caregiving.

The stages of dementia are often defined in terms of the decline in the functional abilities of the patient. A description of the seven stages can be seen here and here.

Essentially, the stages are:

thumbs down

My mother holds three Masters degrees (Education, Philosophy, and Psychology).  Being highly educated has been, to her, a very important part of her personality. She considered anyone uneducated as less intelligent and just…less of a person.

When she saw someone use a thumbprint instead of sign a document/ cheque, she would wrinkle her nose. Being an अंगूठा छाप (one who needs a thumbprint for a signature), was, to her, the ultimate insult.

Things have changed now. She cannot sign any more, not even hold a pen correctly. She does not remember her name, or remember what writing is.Today, with great hesitation, we needed her thumbprint on a life certificate that the authorities require. I was dreading her reaction  –  but she did not seem to register what was happening as the doctor (with an expertise that shows this problem is common enough) pressed her thumb on an ink-pad and took its impression.

I don’t know whether to feel relieved that she did not mind, or to feel that her not minding is yet another tragedy of her situation…

My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes

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there and yet not there

Nowadays, my mother sleeps for most of the day, and the rest of the time, she looks sleepy. I have tried holding her hand and talking to her, she smiles lazily, sometimes utters a word or phrase, and then closes her eyes.  If I ask her whether she is sleepy, she nods her head.

This is not a sudden change, but it took me a while to register this new ‘default’ state. I realized yesterday that we had not played games with her for a number of days, because whenever I suggest a ‘game’, she shakes her head. I have managed to make her count my fingers, or identify colors and objects, but even that seems to tire her, and so I have to stop after a short while.

A year ago, she would do small jigsaws, place rings on a rod, and play games where  she recognized or matched colored pictures. She saw albums and commented on them. We used picture charts. She even read a few phrases from a large-print Panchatantra book.  She could read aloud letters from her grandson (written in simple sentences, printed out in large font). She practiced her signature every day, and sometimes managed it almost correctly.

love, without the trapping of a gift

A very interesting part of sharing experiences through blogging is that I get to connect with other caregivers, many of whom I would never have met otherwise.  On one of my recent blog posts, for example, I got a comment from Lori, who blogs about her own experiences as a caregiver at Alzheimer’s Speaks, and, while going through that blog, I found my way to a few other interesting blogs, such as the blog of Laura Bramly, ElderCareTalk.  They have recently been sharing their perspective on giving gifts for dementia patients.

Reading their blogs made me think of how my own gift-giving habits have changed over the years, with respect to my mother.

When I was young and in school, I would save my pocket money to buy a gift for my mother’s birthday. The gift was always a cotton sari that I would choose myself, and often it cost me the pocket-money of two or three months. I used to feel very great when she wore the sari I had presented to her (and told people that the sari was a gift from her daughter).

Once I began earning, and was living away from home, the occasion for the gift-giving became my visits home. It was still saris, sometimes more than one, handpicked to match her tastes. But sometimes, instead of a sari, I would buy her an embroidered shawl, or a special type of handbag.

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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A new phase of caregiving: a bedridden mother

I find myself strangely shy as I try to act out on my intention to blog every day through this month; as part of my attempt, I am wondering how I managed it last year, and I am surprised to find how very different my life is now.

My overriding mindshare, both last year and now, is caregiving, but the texture has changed completely.

Last year, I was busy accepting that dementia had altered my mother’s way of talking and responding, and that the changes in her memory and abilities (and the frustration they caused) were the main reason her behavior required a new paradigm of interaction. My focus was two-fold:  one, creating a method of interacting that took her reality into account; two, introducing whatever was possible in her days to stimulate her mentally within the bounds of her abilities, while making sure she had enough ‘successes’ to enthuse her to keep doing her best.

Over the year, on the plus side, we found that the behavior problems most caregivers face (and that I faced earlier), vanished and everyone was, consequently, more content and less stressed.

However, dementia is a progressive disease without a cure, and progress it will, whatever you do. The pace may vary, and the specific of the sequence of deterioration may vary, but the direction is the same: downhill.

And so, by the end of the year, my mother reached a completely bed-ridden state. She barely talks, and while we are trying to see whether any medical/ nursing approach can help, the overall thrust of caregiving has changed. While earlier, too, we were focused on making sure she is comfortable and feels secure and loved, this is now a major part of the approach. That, and trying to ensure we understand every clue about what she wants or whether she is in any discomfort.

For example, while feeding her (food has to be spooned in her mouth), we have to make sure she is swallowing it properly, and sense whether she wants to eat more or not (check facial expression, check burps, check that turning away of the face or the opening of the mouth).  She does not tell us when she is cold, thirsty, or in pain — again, body language is all we have.  She sometimes nods or shakes her head if asked very simple questions, but most of the time, she looks somewhat blank. For bulk of the day, she sleeps.

Yet, despite this significant deterioration, this extreme helplessness, she responds to affection, and is is both easy and fulfilling to given her the emotional company she wants. Sometimes I find myself just holding her hand, not speaking, for several minutes, without thinking (as I would have earlier, and as an observer may feel) that I am ‘wasting’ my time. She cannot eat her food herself, but when I put my hand in hers, she grasps it back with a strong grip and sometimes even pulls my hand to touch her lips, as if for a kiss.

I have not fully re-adjusted to this new phase of her dementia, but it is not as difficult as I thought it would be. Possibly, she is being productive in a meaningful way, because all of us around her find ourselves more able to give and accept love, at least while we are with her.

My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes

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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.