Forcing caregivers into a one-dimensional care role

While it takes time for people around a dementia family to accept that dementia is being caused by a disease, an interesting (read: sad) effect is that when people accept the importance of the caregiver role, many also assume that the primary caregiver’s life should revolve around care, and that he she should not and cannot do anything too different from caregiving.

To explain what I mean, let me share some things I have been asked/ told when seen outside home by people who knew my mother had dementia:

  • Oh, you are here, but what about your Amma? Is she alone? Who is with her? Who is taking care of her?
  • I know you have offered to help me, but I don’t want you to neglect your Amma to do my work.
  • I don’t understand how you can go out when your mother is so unwell. You should be with Auntie.

Typically, these statements come from persons who do not know my mother at all/ have never met her, and to whom I have explained the care arrangements around my mother umpteen times and so they know that I spend quite a bit of time with my mother. But that’s not enough for these caregiving purists.

Though I remain polite when subjected to such statements, I do feel unhappy at such comments. I remember one instance when one person wanted to come home with me to “see for myself that Auntie is being taken care of properly and will not suffer by your absence” before she was willing to join hands with me for a project. I am sure this person would have been deeply offended if I’d said I wanted to inspect her home for how well her parents were being taken care of when this person went to work😦.

I don’t think the people who speak like this realize they are being intrusive or insulting; they are so engrossed in their need to see the right thing done that they assume the mantle of representing my mother and consider themselves God-appointed officials responsible for ensuring her wellbeing. They assume that any activity I do away from my mother detracts from her welfare; it constitutes downright neglect, or at least shows a gap in my love and duty, and therefore they have no qualms about reminding me what I must do.

I think this stems, in the main, from a lack of understanding dementia and its care, and seeing the caregiver solely as performing a one-dimensional role rather than a full-fledged person. On one hand, we have people who don’t see dementia as a medical condition, and then we swing around to the other extreme where people see dementia as an acute condition requiring intense care all the time.

Dementia care is an overwhelming role, and yes, it subsumes many aspects of the caregiver’s life, which often has to be completedly redesigned around it. But once there is a stable care arrangement, caregivers may be able to balance the care with other roles, responsibilities, interests and hobbies and live a more wholesome life. Such comments by outsiders place pressure on caregivers and take away that small sense of getting-away that they can have when they are doing other things. Such comments serve to box in caregivers into a confined space.

Here are some facts for outsiders to consider before they pass such comments:

  • Dementia is not an acute condition; it is not a three month or six month intense care condition. It lasts for years. We cannot apply implicit standards of care suitable for short-duration acute diseases to the ongoing care of a condition that could last for well over ten years.
  • Patients do not want to be crowded in all day and night any more than any of us do. They like company at times, but not all the time. Too much company can stress them
  • Given that this condition continues for years, it is unfair and unrealistic to expect that caregivers should not budge from the side of the patient or have any life other than caregiving

There is no need to view caregivers outside home as kids playing truant who must be nudged back to their study table🙂

At times, though, I suspect that such comments have nothing to do with me or my mother; persons who see me get reminded of a unpleasant situation (a mother with dementia, a caregiver role) and so these persons unconsciously grab any argument that would make me withdraw from places they may see me. Okay, so perhaps I am a cynic, but tell me: why do these people want to push me back into the caregivers-only box instead of rejoice with me that I have managed some time away from caregiving, or that I am living a more complete life with multiple activities?

Another funny (sad?) thing I’ve noticed (and also heard from other caregivers) is how people forget that a caregiver knows things other than caregiving. Perhaps this is a corollary of the above-explained attitude of some persons.

Suppose a caregiver was, just a few months ago, a manager/ accounts person/ human resources consultant/ computer specialist but is now caregiving full-time, and she finds she has time to spare–not enough to return to her profession, but enough to do something productive. When such caregivers offer to help others, such as at some local NGO, the work they are given often does not use the professional skills they have. They may, for example, be asked to sing at a function, or talk to patients or play with them (good and necessary activities, of course) and the persons offering activities to caregivers do it with an air of helping caregivers. Had they remembered the complete profile of the caregiver, they may have found effective ways to tap the caregiver’s professional skillset.

I suspect that knowing that a person is a caregiver swamps all other roles the person is capable of; it is as if the mental resume of the person gets wiped out and replaced with one word: caregiver.

Have you had such experiences? Any idea why this happens?

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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 Forcing caregivers into a one-dimensional care role

  1. Vijaya says:

    I have had this experience a couple of times with a relative and have felt offended by it.
    I have a cousin living in the same city. We have little contact due to busy lifestyles except for meeting up on religious occasions when the extended family gets together. At such times when my cousin would ring up to invite us, we would speak to all her family members in turn just to say hello. When my cousin’s husband would come on the phone, he would ask after my father and then go on to uninvite us by saying ‘You should not leave him alone for so long and it is okay if you don’t come because we understand that you have to be with your father’. He would keep up with this line of talk even after I repeatedly explained to him that we would leave only after giving my dad his lunch and putting him down for his afternoon nap which would give us a clear 3-4 hours free time, that we do this when we have to go out for our grocery shopping or other errands and it is okay to leave him alone when he sleeps in the afternoon. It is not as if this person did not like me because he has always been very friendly with us and with my parents when they were alive and well. When he visited he would show effusive concern for my father’s health. Strangely, his own mother lived alone in his native village not far from the home of his married sister while he visited only once a year! Go figure.

    • swapnawrites says:

      I like that word, “uninvite”🙂

      As for not visiting his own mother and then expecting you not to budge from your father’s side even as your father slept…I sometimes thing people assauge their own guilt by lecturing others. I think some such persons rely on our good manners and know that we will not call them on it and point out their holier than thou double-standards.

  2. Charulata Iyer says:

    It’s best to ignore such people. My invalid younger brother lives alone with my septuagenarian Mom in a flat slightly far off from my house. My brother has a mobility issue, but he has got accustomed to the premises of their flat and gets on well with the neighbours. Mom is also happy that way, she has her coterie. The only issue comes when Mom is unwell with a cold or a bout of fever which is not too often, or when we need to take my brother who has neuro issues to the hospital, we have to drive all the way there.

    I get loads of advice on how I should bring them to stay with me, and keep getting asked how often I visit them. A cunning relative even calls me up and cross checks with my Mom. I work from home, and have a kid in senior school. I also have taken over the family social obligation calendar and operate my home without help, managing a maid is more work to me than managing my home at my own pace. I speak to my Mom at least five times a day and we speak for long periods, the jodi phone number from BSNL gives me free talk time. Now why should all this bother people who cannot or do not help us? The annoying relative has a habit of calling up Mom and if she happens to talk in a slightly off-manner, call me up pronto and tell me hey your Mom is depressed. Yeah!

    • swapnawrites says:

      Thanks for sharing. Yes people find it easy to lecture or act as “custodians” even though they don’t do anything to help. I’m happy you manage to ignore them🙂

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