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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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal 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. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

4 Responses to Families, support, privacy, caregiving and chaos and misunderstandings in unprepared families

  1. Gowri says:

    Unlike you, I have siblings ,very understanding and caring ones at that, and I am thankful to God Almighty for this. We do have differences regarding a few issues about the caring, but have decided that ‘the one who cares calls the shot’. Discussing openly about everything, and arriving at a consensus is always the ‘ideal’ situation, though practically it becomes difficult at times.

    I really abhor such a situation, in which I am the sole caregiver…..:-(….! I sympathize with Ritika for her experiences.Anyway I feel that by making the choice to care for her father all alone, she cannot hold anyone responsible for the situation she has been in.We cannot expect the family, in these days, to come running to help solve our problems.

    It is really great that you tried to penetrate the ‘wall’ and to help her open up!

    • Shashie says:

      The interview makes amply clear that Ritika never chose to permanently look after her father alone. She was and still is left alone with him simply because her brother and bhabhi have refused to take over for even a short while.

      It is patently evident that there has been complete disregard of the fact that she too is married and has other responsibilities. The interview makes clear that each time she has asked for a break she has been told to move into the brother’s second house with her father to continue looking after him there. It is mystifying to me as to why she needs to move back to Jammu with her father. Why can’t they take him if they want to and let her free to live her life? If she can manage all alone as she has, her brother and bhabhi are two and evidently have more resources to manage care. Surely they should have been able to take over, at least for short periods, to let her rejoin her husband!

      In my view, Ritika is completely entitled to hold her brother and his wife responsible for the non-stop, never ending care situation she has found herself in. She is stuck there, simply because there is no one to relieve her.

      And lastly, I would have thought parent care is a joint effort or ‘problem’. It is clear from your interview that Ritika does not ‘expect the family… to come running to help and solve our problems.’
      In fact ‘her’ problems would now be angry in-laws and a very vitiated domestic situation — in fact one that was tough to start with. But from what I have read, she will not be relieved of the present responsibility to find time to sort out her personal life, which actually seems to be held at ransom.

      Once her father passes on, she will actually have to tackle living alone due the inevitable marital breakdown that seems to be taking place. She mentions she is around 50; it will not be easy for her to start anew, once her father passes on.

  2. Vijaya says:

    Thank you for bringing caregiver Ritika’s plight home to us and how some of us have a greater burden to bear. This is not the ideal situation and she is dealing with it as best as she can. One must congratulate her on her strength of character and purpose.
    Her situation only proves the need for respite homes and residential dementia care facilities in every city. It is this lack of infrastructure and the failure of those who took upon themselves to work for the dementia cause and still have no results to show after all these years, that is the root cause of her immense hardship.
    Blaming other family members is just one way of dealing with the frustration. It is not the answer to her situation. Even if her brother did take over, it would simply mean that her sister-in-law would become the de-facto caregiver who would have to juggle her responsibilities with the caregiving.
    Whether she should move back to Jammu is something only Ritika would be best able to judge. Surely she would have considered the pros and cons of each option in deciding her course of action.
    It would have been far easier for Ritika to walk away from all this citing her marital priorities. She chose not to because of her innate goodness and her kind heart. Surely such good karma can only fetch rewards.
    There are ups and downs in this cycle of life and presently Ritika is going through the down phase. Things can only go up from here on. Ritika, have faith and keep smiling. These times will also pass.

  3. Rummuser says:

    To Ritika, I would simply say this – You are enabling your brother and sister in law by providing the care. You are the softer of the three.

    There is no fairness in these matters. Some care givers care, that is all. They are human. The other siblings not willing to chip in, do not care and that is all. This is life.

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