caregiver isolation

Yesterday, I shared a story of Friend A, alone, sad, feeling let down. The tragedy is, such isolation is not, well, isolated.

Again and again, if they open their hearts to you, caregivers will tell you how their caregiving becomes even more burdensome because people they knew earlier, friends, relatives, start cutting away. Often, this happens gradually, and often it happens without grace. That is, if asked, people give reasons that sort of blame the caregiver for it.

I know this from my own experience, and I know it from the experience of many other caregivers.  These are the sort of sentences we hear:

  • She doesn’t want to come out for outings or parties.  When you ask her what she was doing, it sounds like all she does is caregiving (hey, and maybe that’s true, and why can’t you help get her a bit of life instead?)
  • When I went to visit her mother, her mother complained that she does not take care of her properly.  (Remember, the mother has dementia, she doesn’t know)
  • So what if her mother has memory loss? Everyone forgets things–even I forget where I kept the car keys. So what’s so tiring about looking after someone with memory loss? (Dementia memory loss ain’t that simple, mate. Do volunteer work in a daycare and find out if you don’t believe it)
  • Anyway she doesn’t want help or suggestions. I told her to give her mother crisp potato wafers because her mother likes it and she made some stupid excuse that her mother can’t chew it. (You can find out about the condition before offering suggestions, right? an dmaybe the caregiver is telling the truth, huh?)

and so on…

The bottom line is, instead of helping, or at least continuing to interact with them, friends of caregivers start cutting away. Relatives, even siblings, start moving away, and usually one person is stuck with bulk of, or all of, the work and responsibility.

Just about every book on caregiving advises the caregiver to ask for help, and to take any help they get, but caregivers often find people too wary in their dealings, too quick to make clear that they will not help. Friend A’s case is an example.

And as Friend A found out, and as I and so many caregivers have found out, the only people willing to understand and help are other caregivers, or professionals in this area. Support groups are excellent. We help, we get help, we feel validated. We know the problems are real, we understand that the responsibility is large and onerous, we know we make mistakes and get tired.

For years, I felt alone as a caregiver. I faced social isolation and  I had to make time for caregiving by introducing major changes in my professional work. I am finally recovering my sanity and joy by redefining my circles of friends and acquaintances to exclude some types of persons and include others. It feels sad at times, but isn’t that what we do all the time, redefine our identities and shed and acquire friends? Okay, so this set of changes is not completely by choice, but I like to think of it as a type of decluttering to lighten myself and stick with the essentials.

The aspect that concerns me is, how to go about this redefinition without  helplessness and bitterness, because, believe me, there is enough tension to cope with without feeling hurt because of actions of others. It is in this context that I consider the possibility of depersonalizing the isolation, and understanding that this isolation is not because the specific caregiver is unworthy of love and compassion, but because something in human nature reduces the problems of others and exaggerates your own–maybe it is a survival tactic implemented at a gene level.

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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.

2 Responses to caregiver isolation

  1. Pingback: Home Care News » Blog Archive » caregiver isolation « Swapna writes…

  2. austere says:

    Admired the way you see this as “decluttering”.

    I would not be able to let go as easily, I confess.

    I’d also wait for karma to extract what dues it has to- mean of me, I know.

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