Families, support, privacy, caregiving and chaos and misunderstandings in unprepared families

I am an only child who grew up in a nuclear family and spent most of my childhood in cities far away from relatives, I always had this “grass is greener when you have siblings and a large family” conviction which was further boosted by all the talk I heard about how families were always there for you, they were the people you could depend on, the safety net, and so on. I even remember how, when I was around eight or nine years old, someone asked me what I wanted, and I said I wanted a brother or sister, “kisee bhee size ka ho”, something everyone around me found very amusing (except my parents, perhaps).

Cut forward several years, I started having doubts about this “normal family” warm, fuzzy envelop of love, of “your family is always there for you, with you” sort of business. My experience net had widened. I saw families that remained rock-solid together regardless of tsunamis of setbacks. I also saw families where siblings retained a relaxed amiability across distances that let them connect emotionally even if months has passed by between conversations. But then there were families where sibling fights were bitter and beyond reconciliation. And there were the other families where, whilst there were no outright yelling-slanging match, the gaps were unbridgeable and smiles stiff and reserved for when outsiders were watching, and the normal distance of cities and busy schedules were a matter of relief. There was no universal standard of “family”.

And I wondered whether the implied concept of “normal, happy family” and lasting sibling affection was more a matter of wishful thinking. Perhaps people kept talking of it as a norm when it was actually more of an “ideal”. I wondered whether repeated statements of “this is our culture” and “normalcy” around “family-oriented society” made people feel defensive, guilty, or inadequate about their differences and conflicts with siblings.

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When an elder in the family has dementia: the impact on children

A couple of months ago, the daughter of a dementia patient told me she was worried about how her children would be affected on seeing a grandparent get angry and accusatory and throwing tantrums. And again, a few days ago, another woman described a scene where her son yelled back at a grandparent who had been yelling. “These are not the ‘values’ I want my son to imbibe,” she said.

I’ve been thinking about this quite a while, and I feel that, in all our caregiver talk and awareness drives, we don’t focus enough on the impact on young children – on what to explain to them, and how to help them cope and adjust. In this context, I chanced upon a very nice article where the author describes how she, as a child, felt about the secrecy around a grandparent’s dementia: Essay: Children need to be brought into the Alzheimer’s conversation.

So what happens in a family when a grandparent acts forgetful, asks questions repeatedly, or says something harsh to the grandchildren? Do the adults act matter-of-fact about it and say it is the nature of dementia, do they take pains to explain things to the child and suggest ways to communicate with the grandparent and cope with strange behavior, do they “protect” the child by pretending nothing is wrong with the grandparent, or do they try to reduce interactions between the child and the grandparent?

Every dementia patient behaves differently, and every family is different in terms of the challenges they face. Some patients say things that hurt – like telling a granddaughter that they had wanted a grandson instead, or berating a child for being dark-complexioned, or short, or fat, or thin, whatever. These are tricky situations to handle, and consoling the children gets tough. In some families, the children get irritated and snap at a grandparent who is forgetful or repetitive, a reaction which typically makes things worse and ends up in a free-for-all yelling match.

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Down memory lane, one year of gathering caregiver perspectives, caregiver voices

I’m an asocial and risk-averse person, but I can be bloody-minded if convinced that something needs to be done, and so I sometimes start projects that defy sanity. That’s how I plunged into a rather hefty project around a year ago, self-directed, without any pressure from anyone but my own stubborn nature. It happened when I got sick of rummaging for dementia care stuff directly applicable in India, because though the Internet abounds with information on dementia, and also on its care, and there are plenty of books, too, most of these are designed for a different cultural context.

I wanted more tips that could be used here, in India, with terminology I could relate to, more examples, more situations. Stuff that took into account the abysmal awareness about dementia in India, and the lack of institutional support. Stuff that suggested resources available in India, or in Indian languages. Most of all, I missed the voices of fellow caregivers–their stories, their struggles, their successes. The community that remains hidden in shadows.

And so I created the Dementia Care Notes site.

Of course, there was no way I could say that anyone would bother to visit my new site. How would people know it existed? Why would they bother to read it? But hey, even if I lost some time and effort and money, at least I wouldn’t get this dirty helpless feeling that I hadn’t tried…

It was in September last year that I started planning an entire site dedicated to family caregivers looking after dementia patients in India. Not just a section on a website, not merely a few pages or a pamphlet, but a full-fledged site. I drafted out the core set of pages, and then bought the domain and made the site live. The website now has over 90 pages, all full of information about dementia and its care, resources in India, books, DVDs, presentations, and…plenty of interviews.

As of today, the Dementia Care Notes site has twenty-three detailed interviews, eighteen of them being interviews of caregivers: List of caregiver and volunteer interviews.

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A difficult story to write: A caregiver’s tale

This post is about two women I read about in the newspapers, Sangeetha and Baby. The first time I read about them was in December 2010, while scanning newspapers for caregiver stories. I read about them again the same way, in February 2011. For the last few weeks, I’ve been trying to make myself write this post about them. My way of honoring them. Because writing is my way of doing things.

Here is what I read in December, the first installment of the story.

The story starts in a simple way: Baby, a poor, widowed woman wanted her daughter Sangeetha to get educated, and slogging for years as a laborer to earn money, often ignoring her pains and other health problems.  Daughter Sangeetha studied hard, completed a bachelor’s degree, and then did her post-graduate diploma in computer applications.

Let us pause for a moment to imagine this: Baby, lifting heavy loads of stone, working long hours, and her daughter, struggling to study. I think it would be reasonable to assume that Sangeetha would be a first learner in the family, and every achievement of hers becomes more significant given her circumstances. She must have shown courage and intelligence. Presumably she did not fritter away her energies in the sort of fun and games that most of her peers would be doing; her mother worked hard, and so did she. They shared a dream, that of Sangeetha being educated.

To go on with the facts of the story, as reported: Baby’s severe pains reached a state when they could not be neglected. MRIs were done. Investigations conducted. Baby had developed Parkinson’s. Her mix of problems soon included dementia. Sangeetha, her education complete, had been trying to earn money on the side while attending coaching classes so that she could get a government job. But with Baby now having fits and falling, Sangeetha had to shift her role and become a fulltime caregiver.

I remember thinking, as I read this, that O’Henry would be proud of how life imitates fiction; this was a real-life Gift of the Magi story. Instead of working to get the job and complete her mother’s dream, Sangeetha gave up the possibility of a job because she could not leave her mother alone for even ten minutes. As the round-the-clock caregiver, Sangeetha lived in a small thatched hut and cleaned and fed her mother and watched her worsen. There was no money, no food, no medicine, except the small amounts that came thanks to the charity of some people and organizations. There was no time to go out and earn anything. There was no energy.  There were only bucketfuls of soiled clothes and caregiving work that never ended, and Sangeetha did it without grumbling. Day after day, month after month, year after year.

“A gem,” is how a neighbour described Sangeetha.

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A sense of loss

Losing a memory is horrible; it is as if a part of oneself is lost, because ultimately, our sense of identity is an integration of all the memories and thoughts we hold close to us.

It is also horrible to find oneself wanting to remember something, and not being able to, and not having anyone who can help us fill up the gap. And I am not only talking of what a person suffering from dementia feels; we all have experienced this some time or the other. Perhaps that is why we like to have around us, for at least some of the time, people with whom we have “shared memories”.

This fact came home to me some months after my father died. I was on my evening walk, and suddenly remembered an incident of the past, but could not remember some of the details. It’s okay, I thought, I’ll go home and ask my father. Then I remembered that my father was dead.
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Echoes across dementia caregivers, touching lives

I have been sharing my experiences as a dementia caregiver in India, but I am just one such caregiver. There are many more, most of them invisible, unheard, shrinking into anonymity while coping with their overwhelm. Caregiving is not recognized as a role in India.

When I began blogging about my experiences two-and-a-half years ago, I was desperate and wanted to use writing as a tool for catharsis and also to examine my feelings. I hoped writing would help me crawl back up into a more wholesome life. I had nothing to lose; there were no friends helping me, anyway. There was no harm in spilling it out. No risk.
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a community of caregivers

It was just over an year ago that I felt alone as a caregiver. Not so now. The community of caregivers is scattered around me, people performing a role that demands extreme empathy and involves overwhelm.

Yes, caregivers end up living a life with priorities and perspectives very different from others around them.  But we can connect with each other, share tips, share both the joys and travails of caregiving. We can be there for others who are just embarking on this journey.

And through honest sharing of our experiences, we can make the journey easier for others.

A few weeks ago, through a comment on my blog, I connected with Ekta Hattangady from Ahmedabad.

Ekta was thrust into a caregiving role for her mother (an Alzheimer’s patient) at an age when most girls are handling adolescence problems and excitement. She was 13 when her mother (then 42 years old) was diagnosed as suffering from Alzheimer’s Disease. Her mother died after six years, and these six years of caregiving have left Ekta with experiences that have stayed close to her heart. The deep empathy required, as well as the sense of overwhelm and loneliness have made Ekta determined to do something for care-givers. She hopes she can help others who suffer as she did.

Read her honest and touching poem on caregiving

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listening, registering

One thing that amazes me is how so many people seem to listen to me when I explain dementia, but then act as if they hadn’t head a word. So I can explain to them how asking someone with dementia questions can unsettle the person–you know, the typical, “Aunty, do you recognize me? What is my name?” And they will nod their heads and agree not to ask those sort of questions. And then…

…I take them to my mother and guess what they ask?

(Yes, you got that right. They say: “Aunty, do you recognize me? What is my name?”

I think there is a difference between just hearing as comapred to actually listening and registering. It reminds me of an incident someone (let’s call be B) told me once.

B is involved in a lot of volunteer work. She does volunteer work in villages, and this involves small and long trips to villages. She also gathers other volunteers for volunteer works, and one cousin of B, a young college student, decided to go on such a trip.

Before this cousin went, B explained to her what the work was. But more than that, she explained something that usually shocks city-bred people on their first trip to a village: There are no toilets in the village. People use fields for ‘nature calls.’ Cousin said, cool, I get it.

When the cousin returned from a two day trip, she was furious with B.

“You never told me there are no toilets in the village,” she said.

“I did,” said B. “I did so several times.”

“No, you did not. How could I have forgotten it if you told me!! You know, there are no toilets in the village!!”

Later, B told me, the problem with people is, they don’t listen. You tell them something important, and you tell them repeatedly, but if it is outside their zone of imagination and experience, they don’t extend themselves to really listening.

I do know listening, really listening, is not easy, and I slip on this often enough, because when people are talking, and if the problem seems remote enough, I am not sure I remain attentive enough to fully grasp the import of what was said.

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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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