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.

Last year, I began making a change I had resisted most of all–a change in my mindset to caregiving. Now, as I write this, though my caregiving load is the same or higher than what it was last year, I don’t find it so heavy. My outlook makes it easier to handle, and even enjoyable in parts. Ten years ago, I could not have imagined I would enjoy any part of this onerous responsibility.

My changing attitude has prompted me to examine my stages of accepting my caregiver role using a Elizabeth Kubler-Ross’ model for death and dying, and to see whether my journey parallels the stages she describes. In a way, any major change in life involves dying/ death of one way of life and if this ‘death’ is not because of desire, the process can be painful. Moving from a normal professional life to a caregiving role can likewise be seen as death/ dying of entire aspects of life, because of the major changes it may require in professional work, social networking abilities and friendships, relations, leisure, and a whole bunch of such things. It is like what terminally ill patients experience, and comparable to what was modeled by Ross (Book: On Death and Dying, Elisabeth Kubler-Ross).

Ross lists the following stages:

  • Denial and Isolation
  • Anger
  • Bargaining
  • Depression
  • Acceptance

She also mentions that even at the last stage, when a terminally ill patient accepts death, there is often also hope of a cure that will come.

Here is my journey through my acceptance of my caregiving role, seen with respect to this framework.

Denial and Isolation: Yes, this is where I started. For the first few years, I brushed aside the certainty that my mother’s dementia would impact me and thrust me deep into caregiving, I pretended that her visible decline was something willpower could resolve, and that repeated practice could control deterioration. I took cognitive decline and physical ataxia problems as temporary, solvable. I closed my eyes.

Anger: Anger grew as denial became increasingly difficult. My college classmates were jet-setting across countries, making and breaking companies while I reduced to a protective shell around my mother. I saw this as a diminishing, as an imposition, and raged against it. I could not physically rage against fate, so I fought the battle in my body, expressing it in increased blood pressure, more headaches, reduced appetite. A thick sheet of bad temper lay in my mind, barely covered by a sheen of genial, rational behavior. Sometimes, the civility punctured under stress and I exploded at others, including my hapless mother. Such incidents provided nothing of the punch-the-pillow catharsis some counselors claim; instead, they left me more drained, more helpless, more…filthy inside.

Bargaining, the next stage in the Ross model, was not a significant phase for me. I suspect this was because I don’t believe in a God-entity who listens to and honors such bargains, though I would have loved to trade good behavior as a caregiver against an assured reduction in my tenure as carer, perhaps by virtue of a miraculous remission or drug that set everything right.

Depression was what really got me down and lasted longest (or seemed to). I am not sure whether what I underwent was ‘depression’ in a clinical way, but it sure felt awful. I had no energy at all, everything seemed relentless and bleak. Tears were always quick to form under my eyelashes and I was always trying to valiantly blink them away when in public, and cry copiously when alone. Smiling back at strangers became difficult. When a neighbor said, ‘Hi, How are you?’ and began nodding and walking away, I was sorely tempted to spill out exactly  how I was instead of the perfunctory, ‘Great, and how are you?’ Life seemed meaningless and caregiving more implosive of energy than a black hole. I thought this phase was impossible to climb out of until I hit rock bottom and realized I could feel no worse (or so I thought) and then I started rising again.

Acceptance, the fifth stage Ross defines, is one where depression and anger are discarded in true recognition of reality.  When I was angry, the mention of ‘acceptance’ seemed synonymous to defeat, and so I was stunned at the tranquility this stage brought. My energy drain stopped, and I became peaceful again. Not happy, maybe, but peaceful enough to begin redefining my life around my new reality. Ross points out that this phase is not to be confused with resignation or giving up, and I agree. Acceptance brought to me a core of peace, and operating from that calm center, I saw possibilities of growth and joy that had eluded me before.

Putting it together, I cannot claim to fully be in the acceptance phase even now. On some days, I distinctly experience elements of denial, anger, and depression. Then I realize that this apparent lapse is a reflection of the changing scope of caregiving and the matching “deaths” of the old ‘me’ it requires. It is, in a way, like a series of small deaths I adjust to as the scope of caregiving evolves to meet emerging realities.

The good part is, acceptance remains the envelop of my feelings most of the time, and what’s even better, there are times I feel I have moved beyond acceptance to an energy-generating, enriching stage . And introspecting on this, I see that with every death, there is a birth of sorts, and if part of my old life die, a new life and role are being created. This newness brings with it pangs of growth as well as rich moments to savor.

And with this understanding, I balance remnants of the five stages with a new aspect of the role, the possibility of enrichment through some aspects of caregiving. Perhaps I will explore this theme further in subsequent blogs.

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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.

One Response to moving beyond the five stages in caregiving

  1. austere says:

    Thank you for sharing this.

    I salute your courage- I believe I’d be stuck good and proper at the big D stage.

    And the model- its seems a lot like grief resolution, some of which I’m familiar with.

    I think- and I could be wrong- that telling your neighbor all was part of the recovery, the trough – you needed to reach out, to be heard, to be in human contact again. Possible, no ?

    What if you treated this post a little differently and sent it out to Harmony or similar? It would make a difference to so many lives.

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