caregivers and their new planet

My focus in this post is the social isolation caregivers experience, a theme I have explored in previous posts, and a common problem caregivers face.

All of us shed old friends and acquaintances as time passes. School friends are forgotten, people who shared the same hobbies fall away as their hobbies or ours change. We leave a job, and our contact with old colleagues withers away. We move to another city. Children and siblings move away and marry. Many of these just happen, as a type of growing apart, when things that bind us are not relevant any more. Most of the time, we may not even notice them.

Some partings, though, do bring sorrow–those not initiated by us, or those with a lot of bitterness/ acrimony. Breakups. Divorces. Deaths. Fights. Misunderstandings. Each of these takes a toll, diminishing us in some way.

But then, there are new connections, too. A new lover, a new set of colleagues, a new community joined. A child born, a marriage that connects you to a new family. Some of these changes enrich us, some are unpleasant (a horrible boss, a tyrannical in-law).

We balance between the new and old and find an emotional equilibrium (hopefully.)

Now consider a caregiver. She is usually pulled into caregiving because there is little choice, and she is usually unprepared for what the responsibility entails–emotionally, physically, mentally. Possibly, she was a career woman, and now she has to balance the career with this work. It cuts into all her ‘me’ time, into sleep, into family time, and it starts impacting her ability to do her job. Her bosses, understanding at first, start wondering how productive she can continue to be, and how reliable, because it becomes clear that she can get pulled away at short notice.  So, the caregiver starts feeling the pressure and struggles to do a great job of both.  Or she makes changes in her career–downgrades it, or moves to places with more flexibility, or changes it or gives it up altogether. This is not what she wanted, but it may be the most expedient.

In all this, what happens to her social circles, and her support from relatives? Crushed under caregiving work, she is not able to participate as often or as freely in ‘fun activities.’ She is not always able to come for an impromptu party, or a weekend hike, or even a coffee. When asked why, her reasons seem negative. When she talks of her worries of caregiving, she is talking of taboo topics like bad health, and (horrors) dying, and people are uncomfortable.

They move away.

This is the time she needs them, and they avoid her. It may take her time to realize that many of them are moving away, but when she sits down one day with a bit of free time at hand, and wanting company, she realizes that she is too far removed from her old friends–they have not been in touch with her, and they are getting along just fine without her, thank you very much. She feels she cannot talk to them about her life, because they will not understand or relate to it. Friendship, after all, is sustained by compatibility, not obligation.

This hurts. It hurts like crazy. It makes her feel she has to handle everything herself, and that there is no point trying to make new friends, because if those who knew her when she was at her best are now avoiding her, why would others care?

The caregiver becomes increasingly isolated, her sole company becoming the patient she is looking after, and the various persons she needs to interact with to get this job done.

I wonder whether we caregivers can look at this another way. Can we look at it like a decluttering of sorts? The few friends who stick with us through this phase must surely be resonating with us at a deeper level than sharing the love of chocolate ice cream or a movie or a trip to the mall. They are probably the braver and more honest of the friends. And if no one survives, well, they were not really deep friends. Perhaps this phase is one of cleaning up the roll of friends.

It is also a phase of honestly seeing what we get and what we give in friendships.  Maybe we should sit down with a list of friends from ‘before’ and see what those friendships really meant to us and to the friends–what bound us together, and whether much of that can take the strain of caregiving.

If what we were bringing to the friendship is something we cannot do any more, it is not surprising that the friendship fades away.  We can let it go. Let us focus, instead, on the friends who remain and make sure our friendship with them, under our new reality, gives both sides enough joy and nurture. We may draw upon the friends’ energy for a while, because we are down, but that phase cannot be prolonged.

I propose that we treat embarking on substantial caregiving, if you will, like moving to another planet. Those who travel with us must be fit enough for the journey and the destination, because the air on Planet Carer is not easy to breathe. Maybe some friends they are capable, but not willing to travel.  Or maybe the air is unbreathable for them,

We are strong enough for Planet Carer. It is a new world, a sparsely populated planet with lots of space to explore. Some of the landscapes are to check out are within us and the loved one we are looking after, and in this novel situation called caregiving.

There are plenty who will travel with us, and plenty who are already there, waiting to welcome us, if we look around.

As for those left behind, maybe we will re-establish contact with them when we return, or maybe not. Maybe, even from Planet Carer, we will touch base with them for limited interests once in a while…

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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 caregivers and their new planet

  1. Vikram says:

    Swapna,

    Your writing is a revelation. Not because it is acutely perceptive and honest. But because you have chosen to share your thoughts with the world. I will listen in from time to time….

  2. Jenue says:

    Hi Swapna,

    I’m in a similar situation caring for a child with special needs. It’s
    hard to make friends. I absolutely adore your blog.

  3. vipulnaik says:

    Labeling of caregiver as “she” — a (reverse) sexist assumption?

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