Forcing caregivers into a one-dimensional care role
January 27, 2012 4 Comments
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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