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…

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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 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 common loneliness…

For the last few days, I’ve been recalling some of the challenges posed in caregiving because of my mother’s condition. These were places where her memory loss and confusion resulted in her saying and doing things that hurt her and people around her. They caused me repeated embarrassment and anger and frustration, they made me withdraw from people around me and effectively isolated me, and they made her fall ill and hurt herself. Most of the time, though I had begun to register that she was acting out of confusion (and not because she wanted to be mean), I had no effective way to reach out to her or to explain to others or generally make things better. There was an overall sense of helplessness and inevitability that I experienced.

I’d like to wrap up this part of my recollections by sharing her obvious sense of insecurity and isolation.

There were many incidents in those difficult years that showed how insecure my mother had started feeling. In addition to making me promise again and again that I would take care of her, she made it a point to complain to everyone about me, and when they talked tough to me, she’d tell me, “See, did you see what he said? You must do your duty properly.” Essentially, she was using these complaints to make sure I didn’t forget or neglect my duty. Earlier, I’d seen it as manipulation done out of dislike for me, but over time I realized this to be a twisted thinking of hers to get what she wanted.

She felt that if others were always telling me what my duty was, she would be safer.

Hurting herself without meaning to

One of the most worrisome part of the situation of my mother in those-mid-stage dementia days was how she would keep harming herself.

In the Delhi summer, with the sun shining at its hottest in a patch of the walkway in front of our apartment, my mother would dash out of the house and stand exactly at the spot where the sun lit up her scalp. (This was before I’d placed a lock on her door to prevent such outbound dashes from the apartment). Some time would pass before I checked her room and find her missing. When I would realize what had happened and rush out to fetch her back inside, she would sometimes agree easily, but need persuasion at other times. I would try explaining about heat strokes, but she would say she didn’t feel hot. “See, I don’t sweat,” she’d point out. To me her not sweating only meant the heat would hit her worse, and it did. She’d get fever, she’d shiver, she’d get incoherent.

In winter, the cold Delhi winter, she’d throw off her quilt and peel off her woollens and then sit on her bed, curled tight, till I spotted her. She would get upset if I put on the heater. Curled tight into a ball because she was cold, she would refuse to relax enough for me to slip her cardigan on. I’d have to use blankets, hot water bottles, gentle massaging of her body, to make her loosen up enough to wear her woolens back.

She doesn’t cook for me

I had started working from home before my mother’s dementia-related problems became prominent. We moved in with her after my father’s death, when none of us suspected that those tiny problems we saw could have a medical reason. She seemed normal enough, except for her growing balance problems. I would do the cooking because I wasn’t comfortable with her working in the kitchen because she could sway at any moment, and would grab whatever she saw. Sometimes one would find her on the floor, a chair fallen on top of her–ouch

I handled all the cooking with some help from my husband. Most of the time I cooked food the way my mother had cooked for me, using the same spices, cutting the veggies in the same shape and size, making dishes as close to the ones she had cooked. I did this so that she was comfortable with the food and could eat well.  Except that now my mother wanted food the way her grandmother cooked for her…

Because I worked through the day, I would finish off cooking in the morning. Daal, veggies, roties, all would be placed in hotcases, so that anyone could eat whenever he/ she wanted without my having to interrupt my work. This was something my mother herself had done for years now–finishing off the cooking early to have the day free for whatever she wanted to do.

But my mother had changed now. Her standards of “proper homes” had become more traditional, reverting to her grandmother’s days. She began complaining at this early morning dispose-off-the-cooking method, and I had to start making the rotis fresh in the afternoon, as is common in North Indian houses, because, when she was a child, she used to eating fresh rotis. I tried to get my maid to come at noon for making roties, but didn’t manage.

Murderers, thieves, and an old woman amidst them

Fear that she’ll be cheated or attacked were one common thread my mother showed, often based on things totally ordinary, or on imagined events or projections.

I remember I was once doing my strength exercises and lifting a barbell with some effort (okay, a lot of effort). As I lowered it with obvious relief, I noticed my mother at the door of the room, watching me. “Yeh kya mujhe maarne ke liye practice kar rahi ho?” she asked me. (Are you practising this to be able to hit me?). I was totally nonplussed, and could not even mutter a “No.”

Beginning to understand the reality of “memory loss”

Here are a couple of incidents that made me register the fact that my mother was facing genuine problems that were totally disorienting her and contorting her perception of reality. That her abilities had deteriorated to a point where she was unable to understand things we all assumed to be simple.

One incident was during her evening walks. I had managed to get a maid who would take my mother for a walk every evening. After a few days of trying to take her down to walk the compound’s roads, and narrowly missing falling because my mother walked in too fast and too imbalanced a way, the venue of this evening exercise was moved to the relatively safe corridor with its even floor and grab rails.

One day, the maid told me that Mataji had asked whether it was morning or evening, and not believed the maid when she said evening. Sure enough, a few minutes later, my mother called me and asked me the same question. I was in a sort of fog of disbelief as I told her it was evening. “Are you sure?” she asked. “Yes,” I replied. “How do you know?” she asked.

That was quite an unexpected problem.

Learning from our experiences…

 Over the past few days, I  have forced myself to think about the far past of my mother’s situation, when there were hints I missed, and fears she hid by blustering through and raging, and the distance and the pain. It seems such a waste in this harsh light of hindsight; why am I forcing myself to look at it?

After all, it hurts to remember those things and write them out and expose them. So why?

The answer is simple: I may be at a safe place now, in relative peace, bridges repaired, connections forged, but there are so many others who face today problems similar to what I faced then…

For Those New to Caregiving

A few days ago, a friend asked me to jot down thoughts I’d like to share with a newbie caregiver–someone thrust into caregiving that could be intense or extended, but was not restricted to caregiving for a dementia patient.

Here it is; if it seems useful to you, share the link with others. And I’d love to receive comments …(ETA: For a  PDF download version, click here.)

Tips For Those New to Caregiving

By Swapna Kishore

Fifteen years ago, my father collapsed while getting up from a chair. A few hours later, instead of editing a document I had to submit to a client, I was trying to figure out how to look after someone bed-ridden thanks to a hip fracture. I assumed then that the situation was temporary, but as days, weeks, and months went by, my life kept changing to accommodate caregiving–first for my father, who never quite recovered, and then for my mother, who has dementia.

My caregiving journey is dotted with successes and failures, days of fulfillment and days of frustration. I’ve been sharing my experiences through my blog and website, and in support group meetings.  Some days ago, a friend asked me to jot down suggestions for people newly thrust into the role of caregiving. Here is what I think…

Most of us have very little idea of the intensity involved in extended caregiving. We may have looked after someone with a fever, or spent a week or so supporting someone recovering from a surgery, but that is quite different from caring for a person suffering from a serious or disabling condition such as late-stage cancer, cerebral palsy, dementia, or organ failure. We may not have imagined ourselves (given our gender/ qualification/ skills/ good luck) as persons who may need to provide such care.

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.

Caregiving, identity, impermanence

As caregiving has occupied a larger and larger chunk of my timeshare, mind-share, emotion-share, my sense of identity has become tightly-bound with this role. I find it affecting all my other roles, and it remains in my mind like a persistent buzz, even when I am not handling any related work.

For a while now, this has puzzled me.

First off, there is nothing unique about handling multiple roles. All of us juggle roles, and cope with it. Even a school-going boy balances between roles: student in class, boy playing cricket, participant in a painting competition, fond (or not so fond) son, polite son of colleague at his father’s office party, and so on. When older, the balance moves to balancing job roles (boss, subordinate, colleague), family (parent, child, sibling, spouse), participating in community activities, and so on.

Pacing for effective caregiving

One of the dilemmas I face is how to care without feeling burnout.

What my mother wants is that I sit near her all day, holding her hand. I cannot do it. I could do it for a day or two, maybe a week or two tops. But not month after month.  Not an year, two years, three. And burning out or getting resentful won’t help, because I’ll end up giving up just when her need for me goes up.

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.

some things are always difficult

A friend, whose father is in his nineties, is currently overwhelmed because he is in the hospital with multiple problems. As she runs around, trying to get him all the care and attention he needs, she is praying hard. I wish her all the courage she needs to face this and do the best she can, and with a sense of peace.

The fact is, seeing a parent (or anyone we care for) in a serious condition is always difficult whenever it happens, however much one can see it coming.

learning about caregiving

A few days ago, I read the blog of someone whose father-in-law has dementia, and she shared the problems and overwhelm of caregiving. The blog brought back many memories of several ‘challenging’ situations I faced with my mother for years.

Things are relatively smooth for me now as far as behavior-related challenges, because my mother is not aggressive or abusive, but that was not always so.

I have been caregiving for my mother for twelve years now, and quite a number of those years were rather full of the typical problems of early and middle-stage dementia–wandering, repetitive questions/ comments, accusations that we were starving her/ stealing from her, hitting out, hallucinations, removal of clothing, what have you.

It was, well, difficult.