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.

As I mentioned earlier, the lack of visibility of multiple caregiver experiences had been a major motivator for my starting the site. Many persons outside India share their caregiving experiences honestly, but we hardly hear any Indian voices describing situations in a context we can identify with. While I have written enough about my own experiences in my blog here, I am only one caregiver; we need more caregiver voices, and I wanted to add those to my site.

What I wanted was interviews that went beyond a few quotes of a caregiver, the way we find squeezed into short newspaper/ magazine articles, and so I decided to gun for detailed interviews, explaining the symptoms, how they progressed, the challenges, the family’s responses and actions, the care arrangements, the emotions of all concerned, the introspection and suggestions. I wanted to add personal stories that enabled a reader to soak in the situation, and become part of a scenario.

I hadn’t reckoned on how difficult it would be to get the required data, though 😦

While the caregivers I meet talk openly, they are intimidated by the thought that their story may be shared online, even if the sharing will be done using a pseudonym and with some identifying details obscured to protect their privacy.

An interview involves an initial discussion during which the caregiver agrees to go ahead with a full-fledged interview, then a detailed session, my documenting it, the edit and approval rounds, and the final upload. I’ve had people dropping out at all stages, some right at the final approval stage. In a couple of cases, the dropping out happened because other family members were unhappy as the interview showed them as, well, not so involved in caregiving, or that the description was not “positive” enough and they didn’t want that to become public. The problem was not the facts per se, but that they did not want them shared.

My experience with anonymity was interesting, too. In the beginning, I was naïve enough to think people would be willing to give their names, but most people did not even want their initials, let alone name. I remember pointing out to one person that surely no one could reach an interview by Googling for initials, and then identify this person based on a description of personal things that the interviewee had not told anyone anyway, but the interviewee was scared it could affect career prospects. The way I saw it was, if these interviews were so well read that hordes of people reached them and matched initials with personal details they knew (which interviewees have not shared with friends anyway) — well, then awareness was good enough and we don’t need the interviews anyway (yes, I know that’s a twisted sentence 🙂 )

It is because such personal stories are not known that we need them out there, available to people who want to understand, either because they are caregivers, or concerned persons, or volunteers or students.

The caregiver interviews I have made available are around one-third of the interviews I started with. It doesn’t matter to me that many interviews did not reach the final state, though, because whether or not the interview was finally approved and published, the process of talking often proved cathartic for the caregivers, so that is something achieved, anyway 🙂 One caregiver (an extrovert with plenty of friends) told me she was glad she had shared her story with me because she had needed to talk about this part of her life, and no one had ever listened so patiently to her before.

Caregivers I have interviewed often hesitate to include some types of facts. Even if they are overwhelmed and the situation they describe is factual, when they read the interview transcript. They feel uncomfortable because they don’t want to seem negative or whining; in our society, talking of unhappy things is equated with being negative.

And perhaps the need to brush off the sordidness is more universal.

Just yesterday I was viewing some youtube videos on dementia, and chanced upon one that described the stages of dementia, and it struck me as to how very sanitized it all was. The early stages were depicted by a slight frown and puzzled look, the mid stages by a slightly deeper frown and more worried look, and the late stage by a patient in bed, lethargic, and sometimes with a few tubes sticking out, but all so hygienic and sterile and neat. There was no disarray of clothes, no desperation, no rage, no fury, no fear or withdrawal, no soiling, no flinging off a diaper, no patient in despair or experiencing hallucinations or flinging accusations. No wandering and desperation of finding oneself lost. No mention of the occasional patient who would smear excreta on the wall or grope at a carer’s breast. In fact, even in the late stage, closer to death, there were no bedsores, no swallowing problems, no desperate hacking coughing when food gets into lungs, no snatching out of the intrusive tube poking in through the nose. The clothes and gowns were spotless, well-arranged, the faces only sad or slightly frowning.

Really, one would think dementia is just the name of a mild headachey type of condition, so a viewer would be right in thinking, what’s the big deal? If this is what dementia is, why do caregivers look so overwhelmed and tired?

Me, I am convinced that we need honest depictions of the range of experiences of dementia. We need to know that there are some patients who remain calm and slowly accept their helplessness and blossom with love in spite of their confusion, and there are other patients who rage and rant and yell and accuse, or slip into utter depression. And we need to know the range of the impact on caregivers’ lives.

The reason is simple: By hiding the more alarming faces of dementia, we leave new caregivers uninformed and unequipped.

This was reconfirmed to me recently when a woman approached me in a state of shock because she thought that her father had become a man of “bad character” because he made a pass at a close family member. This woman felt too ashamed to contact a doctor or a counselor. Had she known that such behavior was a fairly common problem, she would have sought help much earlier, and it took me a fair amount of explaining to convince her that she need not feel ashamed about what her father did because his brain had been affected by a dementing disease.

This woman had only heard of dementia as “forgetfulness” and “poor memory” and she and her family could not relate the father’s behavior with what they’d been told to expect. Most advice they had received had implied that if the family is calm and loving, there will be no problematic behavior, and so they saw the father’s behavior as being either their failure as caregivers, or his becoming a man of “bad character”.

Every patient is different, every situation different. And understanding the range helps.

Over this last one year, I’ve tried to get a cross-section of interviewees so that the readers can get a better understanding and be more prepared. So far, I’ve managed to get interviews of caregivers ranging from a teenaged daughter to a wife in her late seventies. I’ve interviewed primary caregivers, spouses of caregivers, grandchildren living with a grandparent with dementia, grandchildren at a distance. I’ve talked to long-distance caregivers. Some interviews have been stories where the patients were calm, others where the patients were paranoid and accusatory. Some families understood and managed to plan care, others never accepted the diagnosis. Some families coordinated care, some had severe conflict. And in one interview, we learn about the intense and heart-breaking care of a bedridden patient, a profile of caregiving that rarely gets described. (see the list and click the links to individual interviews here)

I’ve found that knowing multiple perspectives is helpful even for existing caregivers.

Just a few months ago, I talked to a caregiver who handles a parent with dementia and is supported financially by a distant sibling. This caregiver, who had read a long-distance care interview on my site, told me, “I’m really glad I read the interview, because now I understand why my sibling is sometimes critical, and I will be more careful about keeping an account of what I spend so that there is no misunderstanding. I don’t want our family to have the sort of problems that the interview depicted.”

What I have found humbling about the interview process is how the caregivers open their hearts to share their mistakes and their introspection and guilt; often, voices break and the whole process leaves us both moved. Not a single caregiver has stinted on sharing because they were “busy”, though busy they must have been; the only hesitation has been that they will be misunderstood or criticized or that they sound negative.

A year down the line, I can say that, while I had to put in quite a bit of work and learn many things to create the site as it now stands, I found the process enriching. But maybe it is time for a short break before I consider what to do next: the problem is I have too many ideas, too little time and energy, too little expertise in the areas I want to try out.

Ah well, one takes a chocolate-and-story-book break and then gets back to that to-do list and keeps trying 🙂

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages:

8 Responses to Down memory lane, one year of gathering caregiver perspectives, caregiver voices

  1. shanters says:

    Swapna – your doing a fantastic job and I for one am very happy indeed that you had the brainwave a year ago! More power to you!


  2. Vish Talreja says:

    Great job Swapna. It’s indeed no easy feat and having multiple perspectives, approaches and ideas will help tremendously.

  3. Vijaya says:

    Excellent work Swapna. Love the caregiver interviews. More strength to you.

  4. Rummuser says:

    I looked for something like your blog when I started my adventure as a caregiver with no success in India. Now that this activity has taken off and we have shared mails too, it is very gratifying that support and empathy flows freely. You are a pioneer and I doff my topi to you 🙂

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