shifting roles in caregiving

This month is a month of introspection for me as I look back at the years I have been caregiving.  Like most caregivers I made mistakes, got overwhelmed and exhausted. I won’t even try to count the number of times I was angry (not just irritated or frustrated), unable to handle ‘difficult behavior.’

One interesting thing I notice in hindsight is that there were distinct phases in my caregiving role, and that as I progressed along these, caregiving became more meaningful and fulfilling, and less irritating and exhausting.

To begin with, I did not even think I was, or would become, a caregiver. Perhaps I can call that phase as absent caregiver 🙂 This was when my mother’s behavior showed anomalies and caused problems, but I thought they were because she was getting old (all old people have memory problems, don’t they?), or felt she was being uncooperative, egoistic, and stubborn. The doctors had mentioned atrophy and ataxia, and I did not understand (or want to understand) the impact on her ability to do things. Her strange acts were sometimes amusing, sometimes an embarrassment or an inconvenience (sometimes severe). I kept my distance, coped with it, and planned no further.
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learning about caregiving

A few days ago, I read the blog of someone whose father-in-law has dementia, and she shared the problems and overwhelm of caregiving. The blog brought back many memories of several ‘challenging’ situations I faced with my mother for years.

Things are relatively smooth for me now as far as behavior-related challenges, because my mother is not aggressive or abusive, but that was not always so.

I have been caregiving for my mother for twelve years now, and quite a number of those years were rather full of the typical problems of early and middle-stage dementia–wandering, repetitive questions/ comments, accusations that we were starving her/ stealing from her, hitting out, hallucinations, removal of clothing, what have you.

It was, well, difficult.
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the pursuit of happiness and Mr. Murphy’s challenges

On Feb 1, I thought I was happy. My to-do list was organized into projects, each project clearly defined with priority and where it fit into my ‘lifeview’ and all that cool and neat stuff was charted and spelled out, and by evening, I was content, happy, and very clear about what would keep me happy. Then, just as I was about to turn in for the night, came the phone call.

It was from the family of the attendant who helps me look after my mother; there was an emergency at her village, and she was required at home, pronto.

I sat there, gaping as the attendant packed her bags, and then I looked at my to-do list.
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the pacing chosen for caregiving–sprint, long-distance, marathon

The work of caregiving is unending. You can always think of one more thing to make the patient happier/ better/ content.  Perfect caregiving is not an achievable goal, especially for patients suffering from a progressively degenerative, incurable problem like dementia. After all, the patient’s well-being is not merely dependent on care given.

So, how can we pace caregiving–as a sprint, a long distance race, or a marathon?

When I started caregiving, lots of people gave me advice on what else I should do. They told me what I should feed her (including lots of elaborate recipes), how much time I should spend with her (all), how I should take her for outings (as often as possible), and so on. Implementing their suggestions would take 24 hours a day, and I’d be forced to cut out mundane stuff like bathing her and keeping her clean, paying her bills, filing her tax returns, or tracking her medical checkups and doctor visits.
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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).
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beyond acceptance in caregiving–the journey through unknown territories

When I was twelve, a palm-reader told me most authoritatively that I would travel extensively through unknown lands after I crossed the age of forty. I believed him, especially when an expert astrologer said much the same thing based on my janampatri (birth-chart). Then, at forty, when I should have been planning my world tours, I got drawn into caregiving, and I said, well, so much so for all those predictions 🙂

Looking back, though, caregiving has been a journey through unknown lands, albeit of the internal kind and not quite the sort I expected. Like any adventure, it has involved unexpected situations and needed creativity and improvisations, and below I am sharing some of the landscapes I have viewed…

The landscape of parents, seen as a fellow-adult -Too many of my friends and colleagues stay ambivalent in their attitude towards their parents. Some dislike them, even hate them, and never get the time (or energy or will) to resolve this in time–it rankles inside them for years, and sometimes becomes a core that is so heavily shielded they don’t venture anywhere near it.  They react to their parents as if they were still children being imposed on, and move away physically/ emotionally as soon as possible, staying distant. The discomfort is palpable.
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moving beyond the five stages in caregiving

When I started this blog, I planned to make entries daily, or at least weekly. My year-end consolidation, however, shows all of five entries in almost seven months…tsk tsk…

So I have resolved to blog daily for the entire month of January 2009 to get into a habit of blogging.

That said, I was sorely tempted to leave this entry (1 down, 30 to go) with just this announcement, but that’s cheating. My intent of blogging is to share and introspect, and just announcing that I will blog every day for each of the 31 days of January meets the count of my goal, but not the spirit.

So, here’s a non-trivial entry on a topic that’s been buzzing in my mind… my new perspective on caregiving.

Over the last several years, caregiving has come to occupy an increasing part of my day, in terms of time, effort, mind-share. This is not what I trained for, not what I dreamed of, and definitely not what I can say I “signed up for” when I started on my life. It is a role thrust on me, and for the initial part I handled it with a mix of resignation and resentment, with huge dollops of helplessness and despair. Energy spikes of a job well done were extremely rare; the down-in-the-dumps feeling rode high. I had to make too many changes that were major, and that I considered compromises and defeats and deviations.
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