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.

As children, siblings are forced to live in the same house, and even if their personalities and stuff are vastly different, they manage to survive together. But as adults, living in separate homes with their own families, perhaps the differences between siblings are easier to act on, because a distance can be maintained? Or is it distance over the years that creates the rift? Maybe one needs to work on maintaining the connection with siblings the way one needs to work at maintaining anything worthwhile; perhaps it cannot be taken for granted…Frequent interactions, exchanging thoughts, sharing responsibilities, comings and goings, on an ongoing basis, not just when there is a crisis. Hey, I’m an only child, I’m clueless. What I do know is that things are not always as hunky-dory as they are supposed to be, even amongst siblings who seemed close enough as kids.

Nowadays, as someone who talks to many caregivers, and also sometimes gathers their stories as interviews, I have repeatedly heard stories of severe sibling conflicts over caregiving, far more serious than “he took my geometry box” childhood squabbles everyone treats as “cute.”

When I talk to caregivers, I find that they open up about the more “gory” details of their cracks in happy families only after rapport is established, and even then, they are defensive, and more likely to open up to fellow caregivers than to others. Even in situations seething with bitterness, people tend to hide the problems from outsiders (ghar kee baat baahar nahin kehnee chaahiye) either out of privacy or shame, fearing that they would be called complaining or would face comments like, “but surely you love your brother” or “brothers and sisters must support each other”, sentences they are not really happy to hear given their situation.

(My idea is not to say conflict is inevitable, but to say, hey, let us understand situations where it may occur and see if we can prevent/ diffuse it. None of us need more trouble in life)

I have managed to get a few caregivers share their family-conflict experiences through interviews. A few months ago, a woman facing severe mismatches with a sibling (over sharing caregiving work and taking decisions) wrote in to thank me for an interview I had put up on family conflicts, saying she was relieved to know that she was not the only one facing that sort of problem. She felt that she could make some small changes that would reduce the chance of misunderstandings because she now understood something of the opposite perspective better.

And more recently, I met a caregiver, Ritika (not her real name).

Ritika’s initial chat and queries were on simple, small problems; she would narrate some issue, we would chat. But I could sense her tension. Over long, continued interactions, she then began unfolding the more overwhelming and personal aspects of her situation. A month ago, she agreed to share her story with others through an interview on my site, because talking to me she realized that more people needed to know that stories like hers happen, too.

Ritika could be a woman in the apartment next door to you for all you know. She lives in an upper middle class locality, looks after her father alone, has family in other cities. I assume that to neighbors who may pass her in the corridor, she seems energetic on some days, tired on others, is active in some types of interactions that living in an apartment complex necessitates, and is not active in others. She does not mix much. In short, she is one of us except that she has been plunged into a situation most of us assume we will never be plunged into.

When volunteers encounter people of such a profile, they often give advice on how the caregiver needs to do more for the patient; they give advice on how the children should be willing to make more time for the father with dementia, they talk of love and tenderness and about patience.

And while some caregivers listen, others sidle away from such advisors, because these caregivers cannot open up about the actual, serious problems they are facing.

Some problems, you see, are difficult to share. Like a zero bank balance and not having money to buy food. Like having to skip meals so that the father can eat, like having to sell off silver and gold because there is just no money…the sort of problems Ritika has faced…

Yet Ritika does have family, well-to-do family…a sibling, a husband. And they were not part of her support or safety net through those extreme times, and are not emotionally there for her even now.

Ritika’s story is complex. Events piled on to events, there were misunderstandings caused by things her father did (probably in part because of his dementia), and these actions caused pain and distances, and Ritika is bearing the brunt of the bitterness. And there is loneliness. Rifts are created easily, but not mended that way. (The interview is here: Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts)

As Ritika talked to me of how the caregiving has created chaos in her life, leaving her stranded alone in multiple ways, I was convinced that this story needs to be told. Not to get Ritika sympathy or praise, nor, indeed, to get her blame or speeches. And not to make readers criticize the others around her, because every story has multiple perspectives, and there are always reasons why things happen. Blame games never help.

I feel Ritika’s story needs to be told because people need to know and understand what happens in some cases. What can cause rifts, misunderstandings, how poor communication and planning end up overwhelming and stressing an unsupported caregiver, even if that is not what the rest of the family intended to do. Readers need to draw lessons for themselves, be prepared.

This interview focuses on the impact of caregiving on all aspects of the caregiver’s life and identity. The caregiving that Ritika does is exhausting in itself, because she does all the caregiving alone for a father who is dependent, uncommunicative, on catheter and diaper and unable to clean himself. But Ritika’s exhaustion does not come solely from the caregiving work, nor from the fact that she has to earn money alongside; her exhaustion comes from these and a multitude of other factors, all combined into a mass that presses on her.

Yet, as Ritika says: it need not have been like this To quote her further:

If there are elders in a family, the chances are that such situations will occur. Families can be ready for them. They can plan for them. When situations occur, solutions don’t automatically evolve out of sheer love and affection for each other. Solutions evolve out of trust and sitting together and planning for all eventualities. All ties get tested at times like this if there is no plan.

It is a long interview, and frankly, I was amazed to find how balanced Ritika is about everything going on in her life. If the interview seems depressing at places, it is solely because the situation is overwhelming; Ritika herself is energetic and balanced and active in spite of it all.

Let me hope sharing this story will provide readers another data point in the spectrum of caregiver lives. That they will “listen”, that it will help them understand. That they will glimpse the underlying complexity care situations may have, and next time they meet a caregiver, they will not be hasty in judging, in acting preachy and simplistic. Or when a caregiver falls silent in face of what may sound like criticism, that they will pause and wonder whether this person, too, could be facing some of the sort of problems Ritika faces, but is too diffident to say anything. Even a fraction of such problems could overwhelm.

Do read the interview: Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts

Even using a pseudonym, the story was difficult for Ritika to tell, and it took her effort and courage. So let us at least see if we can, for some minutes, sink into that situation and feel with her, and then return back to our own skins to see whether this understanding nudges us along to consider some changes we may want to make in our own lives…

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

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.

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, in late October, I 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. (see the list and click the links to individual interviews here)

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 do this regularly to share India-based dementia caregiving stories on my website. 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.

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.

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. And sometimes, as Shikha Aleya has said, caregivers are invisible even to themselves.

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. Having touched rock-bottom trying to understand and cope with caregiving for my mother’s dementia, I hoped writing would help me crawl back up into a more wholesome life. I was alone, and this made me feel I could speak, even if that speaking was by typing an entry that may or may not be read by anyone. I had nothing to lose; there were no friends helping me, anyway. There was no harm in spilling it out. No risk.

listening, registering

A small story today from one friend, and another story of another friend that it reminded me of.

A friend (I’ll call her Friend A) has a mother with dementia. As part of her retirement planning, she and her husband were considering moving to a city where there were relatives, so the support systems could be mutual, but she hesitated because dementia can get rather overwhelming, and she did not want these relatives to feel imposed upon or out of their depth.

So she spent days explaining to the relatives the exact nature of her mother’s problems, the delusions, the insecurity and resultant grabbing of attention by fair means and foul, the never-satisfied attitude, and the sheer overwhelm. The relatives were cool about it. Come over, we understand, we’ve seen people like that, we’ll help each other out. You look after our parents so we can go on vacations, and we’ll do likewise.

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.