Paring down to essentials

The process of adjusting life to cope with my mother’s situation began when her confusion and memory loss started becoming visible in longer interactions, well over a decade ago. She had not been diagnosed at this time (though we had been visiting neurologists) and we made these adjustments in response to her strange behavior and our failure to reach her through reason and negotiation.

My main focus of adjustment at this point was to create an environment that minimized her rage or frustration cycles. This was, I confess,  not as part of some well-thought out, compassionate and caring strategy, but a form of self-preservation. There was an air of helplessness and frustration. We had no idea she was suffering from a medical condition. Her “unreasonable” and “dictatorial” methods seemed parental meanness, of the sort movies depict, and I was trying to stay safe and sane.

For example, if she wanted her food served hot and got agitated otherwise, I tried my best to be around to make it and serve it hot.
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Care for everyone but a dementia patient…

Time to start writing about the changes I tried to make in my life to handle caregiving better. This is going to be another set of mistakes laid bare on the page, sigh, braided together with spots that worked…

But before I start examining and describing what I did,  let me step back to look at some basic premises.

A lot of people I meet say that everyone makes adjustments to take care of elders, and I think what they wonder is why talk/ write about something everyone does–surely, it could not be that different for dementia patients.

So I’ll start this phase of my blogging by describing my caregiving experience for my father, who was absolutely sharp mentally right to the end. Sharp, articulate, and very aware, even on the last day of his life.
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Being the Wind, being the Sun

I read a story long ago of the Sun and the Wind arguing about who is more powerful.

Then they spot this man walking on a road below, wearing a cape, and decided that whichever of them could make the man take off his cape was the more powerful one. Wind took the first turn, and blew a gale hard on the man, hoping to force the cape off him. The man only drew it close around him, gripping tightly like his life depended on it. The harder the Wind tried, the tighter the man clung to his cape. Then the Sun took his turn, and shone gently on the man, and the man relaxed and took off his cape.

Of course, the story doesn’t make all that much sense if we factor in that the Wind did the only thing it could, and so did the Sun. But I always think of this story when I remember my years of caregiving for my mother.
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Caregiver Community Karma

I guess it has been a long time again since I posted here. After the last post, I thought I had nothing much left to say, well, nothing important, and nothing I hadn’t said before. Okay, so maybe I did have some thoughts, but nothing significant enough to write a blog post about. I was wrong; bulk and originality are not the only criteria to venture out into the cyber world…

The last few months, I used my spare energy to redesign my personal site. I added a whole bunch of pages on dementia and caregiving, with special focus on caregiving for dementia in India. In these pages, I consolidated and structured a lot of my own thoughts and also some information gathered over the last couple of years, as part of my interaction with other caregivers and with volunteers and professionals. I added resource pages (and was dismayed at how few caregiver resources were in India) and links to books and DVDs. Pages include stuff on how caregiving is different in India, and tips focused on that. I uploaded an awareness presentation I sometimes use. I also jotted down ideas for more updates later. I would, of course, welcome any ideas/ comments you have. [Edited to add: This post was made when I was still feeling my way around how to share information and suggestions with other caregivers. Much has happen since then, including creation of full-fledged websites, videos, presentations, etc. See Note below]

My intention as I worked on this was very simple: make my thoughts and data accessible for anyone who may happen to reach my page, either because they know me or someone directed them there, or a search engine threw up the site’s url. I have not yet thought of how to publicize the stuff; I have no idea how to go about such stuff. If even a few people benefited from my effort, it was effort well-spent.

And people have been contacting me every couple of weeks or so, people I don’t know, seekers who reached my site while they desperately surfed for resources for dementia and caregiving in India. Some were helped by what I had put forth, and some wanted more help (and I tried my best to find out the additional data they wanted).

Today’s post is stirred by one such contact.
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Caregiving, identity, impermanence

As caregiving has occupied a chunk of my timeshare, mind-share, emotion-share, my sense of identity has become bound with this role. I find it affecting all my other roles, and it remains in my mind like a persistent buzz, even when I am not handling any related work.

For a while now, this has puzzled me.

First off, there is nothing unique about handling multiple roles. All of us juggle roles, and cope with it. Even a school-going boy balances between roles: student in class, boy playing cricket, participant in a painting competition, fond (or not so fond) son, polite son of colleague at his father’s office party, and so on. When older, the balance moves to balancing job roles (boss, subordinate, colleague), family (parent, child, sibling, spouse), participating in community activities, and so on.
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Pacing for effective caregiving

One of the dilemmas I face is how to care without feeling burnout.

What my mother wants is that I sit near her all day, holding her hand. I cannot do it. I could do it for a day or two, maybe a week or two tops. But not month after month.  Not an year, two years, three. And burning out or getting resentful won’t help, because I’ll end up giving up just when her need for me goes up.
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If I could do it all over again

A natural part of retrospection is wondering how things would have been different if, some years ago, I had known what I know now about dementia and caregiving. This is not an exercise in regret or guilt, more a way to deepen my understanding of the past, and also, perhaps, to help me answer questions when neo-caregivers ask me about the journey ahead of them.

Some things are obvious. I should have learned more about dementia and caregiving as soon as it became obvious that my future was intertwined with these. I should have built up my toolkit, connected with the community, shared my experiences and heard others share theirs. I should have been more patient, more loving, more understanding….

But one thing does not come out in this list, which is to me, more important. I am not sure a neo-caregiver, dreading the role, would even bother to hear me talk about this – but here it is: given a chance t do it all over again, I would have more fun-times with my mother.
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a paradigm shift by moving beyond concepts

I mentioned yesterday that my effectiveness as a caregiver improved and my life became less stressful once I moved from a role of ‘doing things right’ to one where I became an informed and involved caregiver.

It seems obvious, in hindsight, that caregivers should understand how dementia affects a person to become effective and creative in their role.

But I experienced an even bigger shift when moved beyond book-knowledge  and allowed myself to soak the concepts at an emotional level. The real benefit came when I extended my understanding beyond the dry theory level to a place deep into the heart.
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Preparing for the caregiving role

As a caregiver, the most unpleasant phase for me was when I acted as a functional caregiver.  I tried my best to do things right, but had not grasped the full impact of the disease on my mother’s personality and behavior, and didn’t know how to avert or handle challenging behaviors. I used  ‘common sense’ and rationality, and when they failed, I got frustrated, irritated, angry, exhausted, or just depressed. Those emotions didn’t help, either. 😦

I was stressed, and struggling to keep a normal life running so that this stressful activity did not swallow me up.

The switch happened when I sat down to review my life and saw how all-pervading the impact of my caregiving role was. My social life had vanished, my circle of friends pruned down significantly. I had been forced to adjust my career direction and intensity dramatically. My mindset had changed, my emotional and intellectual mind-share had changed.
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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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this month, a year ago

Last year, I blogged daily through the month of January, and I always felt I had a lot to share. This year, as I go through this a-blog-a-day month, I find myself in a very different frame of mind. More mellow, with less to say…

A few posts ago, I mentioned how much has changed in my mother’s state in the last year. As dramatic, as important, has been the shift in my perception and attitude. Last year, around this time – give or take a month or two – I was busy sorting out my approach to my mother’s challenging behaviors. She would have mood swings, she would say things that hurt, she would swing dramatically between sweet coöperation and gentle behavior, and angry, frustrated words and actions. Thinking and blogging and reading – these helped me explore what could be happening and how to handle it.
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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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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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