An instance of caregiver isolation

I thought I’d share an example to illustrate a situation where caregivers are unable to speak up honestly about their problems and get support.

We often hear of how we must love the patient, and if the patient is a parent, how we must love the parent as the parent loved us, and how we must do things for the parent as the parent did things for us. Yet there are assumptions here that no one questions, and situations where care is challenging because of problems caregivers cannot talk about.

But first, about families.

I know families where parents were abusive towards spouse and children. They drank, they beat the wife and kids, they would not let the children study. Broken homes, broken bones, broken hearts of small children. The children somehow managed to make their way through their lives in spite of the negativity in the home, in spite of the beating and drunken torture, the neglect, whatever.

These things happen, you know. We do not talk of them, but we all know cases of wife-beating, of drunken parents, of abuse. We may even suspect cases of incest. These things happen across all strata of society. When I was a student and staying in a hostel, I remember hearing shrieks one night and being told by seniors that they were the shrieks of the wife of a faculty member being beaten by her drunk husband, apparently a regular occurrence everyone knew about; no one “interfered”. Living in an apartment complex later, I had a drunk neighbor who was so prone to beating his wife that she would rush out of the apartment to the cabin of the security guard, sobbing. Once the husband thrashed her when she was in an advanced stage of pregnancy, and she went into labor that night, and a week later, the fond father was walking around holding the cute newborn and cooing affectionately. People whispered and gossiped, but no one did anything. Oh, there are so many such stories around us….

Now consider the situation where this abusive or drunkard spouse or parent gets dementia.It suddenly becomes the duty of the abused person to look after the person with dementia. A parent is to be looked after because he “brought you into the world” and “loved you”, a spouse because “after all, a spouse is all you have” and “pati dharam.”

What a double whammy for the abused persons. They had worked hard to emerge from a negative, oppressive childhood, or to survive an abusive spouse, and then they have to return to that setup, that negative person, and look after that person.

First, people ignored their problems saying it was a “family matter.” But later, when dementia strikes, people around abused persons often instruct them on what “families” are all about. “Learn to forgive,” someone says. “Do your karma gracefully,”, says another person offers. “Be positive,” says a third. Easy words. The abused persons, thrust willy-nilly into caregiving, lack forums to express frustration and find peace because talk of the past bitterness is taboo. They are supposed to have forgiven/ forgotten/ become positive.

It is bad enough that we don’t support people who are being abused because we don’t want to “interfere” in “family matters.” But these persons, who already suffered once, remain isolated for round 2 where they fight challenges of their present lives along with the past demons as they look after a patient who was once their tormentor.

How many people are good at forgetting anyway? How many of us nurture no grievances against people who have been blatantly unfair or cruel to us? How many of us can work day and night for someone who tormented us for years?

Cases of abused family members becoming caregivers are not rare. Unfortunately, such caregivers do not speak up is a sense of “shame”, since abuse is not talked about. Such caregivers obviously do not derive an inspirational boost from talk of what we owe parents because of love and duty; instead, such talk drives them into hiding.

Sometimes caregivers write in with their stories about abusive parents who now need care. An example is an email I got some months ago from a caregiver who grew up with an alcoholic father who physically abused the caregiver’s mother. Now the father has dementia and this son and the abused mother are providing care for the father, who continues to be abusive (now mainly verbally). The mother and son try their best to be calm and helpful, and continue to provide the care at home. But they feel isolated. The son wrote that he could not talk to anyone because he didn’t think people would understand.

To me, this son is an exemplary caregiver because he is providing care in a situation far more challenging that homes where caregivers look after parents who were affectionate and caring earlier. And yet this caregiver is alone…

I wish we had an environment where such caregivers could be open and talk of their problems and get unconditional support.

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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.

3 Responses to An instance of caregiver isolation

  1. Henri says:

    I have a very close friend in this situation! It is so hard to even accept that you are now expected to be nice to this person who terrorized you and your family, has a worse temper now, if that is possible. So hard. I don’t expect it. But they are doing it. In whatever way they can. Unbelievable.

  2. Shashie says:

    dont want appreciation want a HOLIDAYYY

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