Disorientation, memories, adjustments, new realities: two weeks after my mother’s death

These last two weeks, since my mother died, have been busy in some ways, surreal in many. I am acutely aware of the spaces left empty by the death, spaces in my day, my mind, my feelings. I’ve been swinging between energetic bouts of work, apparent acceptance of my changed situation, sharp bursts of memories, confusion about my future, and total disorientation that hits my guts with a feeling that something’s horribly wrong. I’ve talked about my mother with more people in these two weeks than in the last few years; most of these interactions have been heart-warming, yet put together, been a heavy dose of socialization for an introvert like me. And I’ve kept myself moderately busy because I’m not sure I can handle too much emptiness.

It’s weird.

Over the last several years, my caregiving involvement and work had kept increasing till caregiving became an immersive role. I made major adjustments in my life and my thinking to be able to focus on my mother’s care. I allowed no distractions to take my heart away from this core responsibility, and I structured everything for smooth care. Here’s the thing: Creating a suitable daily routine for her was, after all, the same as creating a matching routine for myself. Making sure she was not inconvenienced required lots of planning and also building in redundancies. So, for example, as I needed a room heater for her, and as I would not be able to get it repaired fast enough if it stopped working, I bought a spare heater. I had spares for everything, I had checklists, I had standby stuff for various contingencies…

All these choices enabled me to provide the care smoothly, and with less tension that would have otherwise been the case. Perhaps I overdid “caution” at places, but I am not a risk taker, and a caregiving situation is fraught with unpredictable events.

Additionally, I was constantly alert. I would not even go down to check the letterbox without carrying my mobile.

Now these habits and choices are irrelevant/ unproductive.

And of course, there is this basic aspect: with a substantial part of my self-identification so closely linked with being a caregiver, what am I when there is no care recipient? My usual “about me” text in various online profiles includes a clause “and a caregiver for a mother who has dementia.” This must be changed…to what?

So yes, these last two weeks.

I’ve been busy, of course. There has been clearing up to do. Like, just a week before my mother died, we had bought medicines, diapers, etc., for her for a two month period; that was donated off. Also her wheelchair, airbed, things like that. Then I donated off more personal stuff like clothes, but also made sure I kept some pieces that I might want to touch/ see later, just to remember. I interacted with loads of people (as I mentioned above) handling condolences and catch-ups from persons I had not talked to for years, as well as calls from people I have been in touch with. There were persons sharing old memories, persons sharing suggestions for what I can do now, persons asking questions. Strangers got in touch, too, especially for information on body donation.

After the first few days, I resumed normal stuff though at a slower pace. I did some caregiver support work, responded to queries from strangers regarding dementia care services and (what else!) availability of trained attendants, even talked to persons eager to set up new support facilities. I did other stuff that life has been made of these last few years.

Twinges of disorientation have kept occurring all through these days because the structure of the caregiving day remains hardwired in me. When at home, I keep getting up to check up on her/ do something that was once part of the smooth daily care routine. If outside home, I find myself checking the watch ever so often, experiencing that “I must get back” feeling–I timed myself on one trip outside home and found it arose five times in a half-hour

For years I have followed a simple rule while going out: I should never be more than one hour drive-back distance from home, maximum 1.5 hours (which, after I factored in possible traffic jams, did not give me that much of a radius from home). As I now try to extend my thinking to traveling beyond that geographical boundary, I feel I’m doing something wrong, then remember it is not wrong now.

Habits take time to be set aside.

Memories of my mother pop up at random, unexpected times. As long as I was seeing her day after day, bedridden, uncommunicative, I was anchored to her current state. But now I find myself often remembering her as a much younger person, the way she was in her thirties, forties and fifties. I can’t say I “miss her” in the sense that I want a fifty-year-old mother walking through the door, and perhaps this is because I have seen her closely in the decades that followed…but I am experiencing more nostalgia now than I felt through the years when she was fading out.

I’ve started putting together some objects for a “memory box” I might make some day, when I am less disoriented.

So yeah, this is a strange process.

When I was caring for my mother, I had taken a conscious decision not to think about or dream about my life after her death. I felt that such thought/ imagination could unsettle me and may even compromise my caregiving ability and attitude. I have no regrets about that decision. It helped me do what I felt was right…

But here I am now, facing what I had not planned for, not thought about.

I’ve heard from someone who said it took her four months to get herself to cry. Some others have told me of long-term caregivers who have not got over the loss even three years after the person died. Seniors from the caregiving path often talk of an emptiness that doesn’t go. Take it easy, counselors say, give yourself time.

This is what I am doing:

I’m reminding myself all the time to remain gentle with myself. I’m trying to let the implications of my changed reality percolate through all layers of my identity and habits and memories. I’m staying moderately busy with the simple normal activities I was doing before: working somewhat on my website, helping caregivers, remaining available for dementia care, working on other writing–but I am allowing myself enough time and energy slack to adjust, think, relax, even attempt new things. Not so much time that I feel unnerved, but enough…I’m trying to make small, digestible changes more in line with my new situation, keeping myself “soft and loose” to the extent I can. I am tentatively feeling out the idea of taking a few days of vacation out of town (even the idea seems alien, stress-inducing, and “wrong”).

And I’m pondering about what loss, closure and moving on mean…

On the other hand, I’m consciously staying clear of jumping into big new stuff. I am not starting any new projects or making any larger commitments. It’s too early to know what direction I’ll end up choosing, what identity, what mix of activities.

I owe myself some experimentation.

Some persons have suggested that I make a list.

As it happens, I had done a lot of to-do list consolidation about a month back. But the premises of that consolidation may no longer hold true.

Well, one can make new lists.

Post describing my mother’s death: Impermanence, Death, Closures and Continuity through Body Donation

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Sharing my personal experiences and thoughts on youtube

Whenever a caregiver says he or she wants to do something about dementia care, my standard suggestion is that they share their experience, not just the rosy parts, but the challenges. Often such sharing is difficult when one has moved on and found one’s caregiving pace and peace; it opens wounds, painful memories one would rather set aside, but there are persons who would benefit by knowing that they are not alone in their agony phase, and that it is possible to come out of it. So I suggest talking, blogging, putting up stuff on Youtube.

So when, a few days ago, I chanced upon a recording of an interview I’d give in June 2009, I figured I should do something about sharing it. I’m already used to sharing my caregiver experiences through my blog, through face-to-face caregiver sharing sessions, through newspaper interviews.

But this was a video recording, and it was almost three years old, and as I struggled to figure out format conversions, and added “question” slides and other stuff to edit it and structure it and make it youtube-ready, I found myself strangely moved, to a point I was paralyzed by grief for some hours.

You see, in this interview, I’d been at the best phase of my caregiving. My mother clearly enjoyed my company, the attendant looking after her was affectionate and competent, and although I had made a lot of compromises in the rest of my life to provide my mother what I call an “empowering” environment, they all seemed so worth it.

In one segment of the interview, I even commented on how my mother’s dementia was not progressing much.
This was June 2009, yeah.

And just four months later after some physical decline in walking and some other setbacks, my mother was bedridden. By October 2009, my mother was completely bedridden, unable to get up for anything (and yes, that means not getting up even to go to the toilet).

I sounded so happy with the current state in the interview. Trying to edit it and collate it was an intense reminder, and it hurt to remember those days. I was suddenly missing those story-telling sessions, those games. But life moves on, and I guess one should grab one’s happiness when it happens, because I’m not sure one can ever say how rapidly the situation may decline. My mother’s just recovering from one bout of chest congestion, she continues to sleep bulk of the time, and it is only very seldom that she shows any cognizance about my touch or voice.

Ah well. Anyway, here it is, 14 minutes of a time capsule. (This was recorded in the days when I was just starting to get active as a volunteer and as someone talking about awareness and all that) :

(if the player does not load, visit this youtube link directly)

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Priorities and scope of care

A few weeks ago, I had a long phone chat with a caregiver that confirmed what I suspected: some caregivers feel that persons around them only keep thinking of what more the caregivers can do for the patient, without sparing a thought for the wellbeing of the caregiver.

This caregiver, let me call him/ her Emm, is handling fulltime support of a parent with dementia, alongside the responsibility of running the home and earning the money to do so. When Emm first contacted me, the parent (who had several medical problems) had not yet been diagnosed with dementia, but Emm had chanced upon my website and realized that the parent’s behavioral oddities could indicate dementia. Over several long calls, we discussed multiple aspects of caregiving and future planning. A formal diagnosis was obtained after a few months, and Emm’s self-education on dementia proved helpful in extracting more support from the consulting doctors than they were voluntarily offering. Emm also joined multiple forums to connect with volunteers and caregivers. Caregiving has subsequently stabilized.

In our last catch-up-and-chat call, Emm expressed disinterest in discussing dementia or knowing more about it. “I do not want to think about dementia” were the exact words. The parent was stable, seemingly content, clean, fed, with all medical checkups up-to-date. Emm wanted to use this stable period to work hard and build savings. Having already read up enough on dementia, Emm was confident about being able to recognize if the symptoms were worsening, and would contact me or others for help at that stage. “I hope you don’t mind if I don’t like to talk about dementia,” Emm told me.

I’m not exactly fond of talking about dementia myself, I said

The caregiver learning curve

Many persons (who understand dementia) advise caregivers to be calm and loving and to never argue with patients. It is good advice, but these advisors then expect the listening caregivers to see the wisdom of the advice and change immediately. They forget that their suggestions require the caregiver to change habits built across years, and also involves the caregiver going through a very hurtful emotional acceptance about a family member who now has dementia.

Some habits are required to cope with the situations and people around us, and are deeply ingrained in us.

Suppose I go to a shop and buy something, and after I have paid, the shopkeeper demands money again. Will I opt for humor, distraction, cajoling, agreeing with him, and paying again? Or will I explain and then (if that does not work) argue?

Suppose I have spent three hours cooking an elaborate dessert for my kid, and the kid has consumed it all. Then the kid claims she never got the dessert, is hungry, and has been starved. Will I agree that yes, I am mistaken? Will I argue? Will I feel no annoyance or frustration or anger? Then the kid goes and tells the neighbors the same thing, and they believe the kid. What will I do?

Or consider this. Suppose, two years ago, a relative visited us and while living with us suffered an infection serious enough to require hospitalization. As I am sitting with my husband and talking of a neighbor who has suffered the same type of infection, my husband claims he has never heard of such a disease. Will I mention the two-year-old episode or not? Okay, so I do. Now he claims there was no such visit, no such relative, no such hospitalization. Will I say, Of course, of course, you are right my dear, would you like some chamomile tea? Or will I start convincing him, giving cues, arguing, maybe fishing out an old diary as proof? Or even go to Wikipedia to show the listed symptoms to convince him I am right…

What I am say is that arguing, convincing, proving one’s point, and making sure others accept our memories as “the facts” is something most of us do all the time. Life would be extremely difficult if we did not do so. Not all of us sit cross-legged in the Himalayas.

These habits misfire when talking to dementia patients, but we still need them in other spheres of our life, as we have been doing to deal with stuff right from childhood.

Understanding dementia home care in India

Almost one year ago, a very dedicated volunteer told me that though she tries her best to help home caregivers, she sometimes wonders whether she can ever understand them enough to help them. She had been facing problems with staff who would not understand what dementia was, and would quit at the smallest “difficult behavior”, and there were days she felt driven up a wall herself. She just couldn’t imagine living with and coping with a patient all the time, the way family caregivers did.

This volunteer told me that while she gave family caregivers what she felt was appropriate advice and hoped it helped, she felt diffident about it at times.

Being both a caregiver and a volunteer, I am often able to connect with the situation and challenges of home care, because even if I have not faced some of the problems others talk about (and boy, there is a wide range of problems out there), I can extend my experience to imagine it. This volunteer’s comment made me realize that perhaps I should do something about this gap of understanding that non-caregiver volunteers experience. I also realized that when some volunteers ended up sounding preachy, insensitive or critical, they may just be naïve and ignorant.

Anyone who has brought up kids would know the difference between handling a child 24 hours, through illness and tantrums and soiled clothes, as against playing with them or babysitting them for a few hours in a neighbor’s house. Things always look different in short, controlled situations from which one can opt out.

Most volunteers who advise home caregivers have never worked as attendants/ caregivers in a respite care on a 24 hour shift for a few days consecutively… Most have never had to stay awake day and night and clean a soiled person who is pushing them away and shouting at them in the middle of the night…(maybe volunteers should go through such experiences, though, it would make them so much more effective as advisors)

Anyway, prompted by the comment of the above-quoted volunteer, I wrote a short note to describe what dementia home care involves (my original draft was five times this length, but I reduced it to keep it at a readable length). I think anyone in contact with home caregivers may find it useful to get some idea of what caregivers are experiencing.

Online caregiver communities: supporting each other

I used to feel lonely as a caregiver till I discovered that there are enough of us, and that there are communities–and even more important: we caregivers can form our own communities. Unfortunately though, caregivers don’t get together often enough, because caregiving is often hidden behind the scenes, even for serious and long-drawn illnesses.

In India, where looking after family members (whether a child or a spouse or a parent) is part of the expected duty, family members typically do not share their problems with “outsiders”, scared that they will be seen as unloving or as persons shirking their duty if they let even a bit of fatigue show. I think silence about caregiving actually worsens the quality of the care we can give our loved ones, because information, tips, and ideas do not get pooled, and care given by a family is restricted to what they can figure out by themselves (possibly in their overwhelmed state). In effect every family is forced to reinvent the wheel.

Contrast this to roles that are talked about openly– like “normal” child-rearing (not bringing up children with special needs, which remains in the shadows). For normal child-rearing, experience pools are easily available and can be accessed without shame.

We need communities and sharing for caregivers, too. Communities where we are able to talk about situations, and hear from others whether they’ve faced similar situations, what could have caused it, what worked, what didn’t work.

Of course, given that caregivers remain invisible, it becomes even more challenging to collect enough caregivers to form a community, and then make members speak up and share

In the “Western” countries as we call them, support groups are relatively common. Caregiving is openly acknowledged as a role, and society accepts that caregivers need support. Such support is partly given by support groups that meet periodically to discuss topics and situations of mutual interest, get expert opinions, and relevant training.

In India, people assume that a “joint family system” provides all necessary support, and feel that outside help is not needed. Some even assume that if a caregiver needs help from outside the family, it indicates the decline of the joint family system, of culture, and all that. The mechanism of supporting caregivers is associated in part with a sense of inadequacy and “bad family” and shame for society as such; if our families were “good”, we would not need support from “outsiders”.

But taking care of a patient using unproven “instinct” is not the same as being an “informed” caregiver who understands the situation and challenges and uses suitable mechanisms and skills to help the patient.

Caregiver communities collectively enable caregivers to become better and more informed caregivers.

Given how difficult it is for caregivers to locate each other and coordinate meetings, in-person communities are difficult to form and sustain. Many caregiver groups that are started with the best of intentions start tapering off unless some volunteer/ caregiver makes it his or her life-mission to constantly induct new caregivers.

Because, you see, a caregiver community is an ever-changing community.

A difficult story to write: A caregiver’s tale

This post is about two women I read about in the newspapers, Sangeetha and Baby. The first time I read about them was in December 2010, while scanning newspapers for caregiver stories (I do this regularly to share India-based dementia caregiving stories on my website. I read about them again the same way, in February 2011. For the last few weeks, I’ve been trying to make myself write this post about them. My way of honoring them. Because writing is my way of doing things.

Here is what I read in December, the first installment of the story.

The story starts in a simple way: Baby, a poor, widowed woman wanted her daughter Sangeetha to get educated, and slogging for years as a laborer to earn money, often ignoring her pains and other health problems.  Daughter Sangeetha studied hard, completed a bachelor’s degree, and then did her post-graduate diploma in computer applications.

Let us pause for a moment to imagine this: Baby, lifting heavy loads of stone, working long hours, and her daughter, struggling to study. I think it would be reasonable to assume that Sangeetha would be a first learner in the family, and every achievement of hers becomes more significant given her circumstances. She must have shown courage and intelligence. Presumably she did not fritter away her energies in the sort of fun and games that most of her peers would be doing; her mother worked hard, and so did she. They shared a dream, that of Sangeetha being educated.

To go on with the facts of the story, as reported: Baby’s severe pains reached a state when they could not be neglected. MRIs were done. Investigations conducted. Baby had developed Parkinson’s. Her mix of problems soon included dementia. Sangeetha, her education complete, had been trying to earn money on the side while attending coaching classes so that she could get a government job. But with Baby now having fits and falling, Sangeetha had to shift her role and become a fulltime caregiver.

I remember thinking, as I read this, that O’Henry would be proud of how life imitates fiction; this was a real-life Gift of the Magi story. Instead of working to get the job and complete her mother’s dream, Sangeetha gave up the possibility of a job because she could not leave her mother alone for even ten minutes. As the round-the-clock caregiver, Sangeetha lived in a small thatched hut and cleaned and fed her mother and watched her worsen. There was no money, no food, no medicine, except the small amounts that came thanks to the charity of some people and organizations. There was no time to go out and earn anything. There was no energy.  There were only bucketfuls of soiled clothes and caregiving work that never ended, and Sangeetha did it without grumbling. Day after day, month after month, year after year.

“A gem,” is how a neighbour described Sangeetha.

Reshaping career and identity

Things did not improve after the initial adjustments and it slowly dawned upon all of us that the responsibility of looking after my mother was not going to be that simple, solved with shrinking-out-of-her-view and take-an-episode-at-a-time. This was an ongoing project.

My husband’s work involving a lot of travel. My son was in his critical years of schooling (close to the board exams state). It therefore seemed natural to me that I should assume more of the work required to cope with my mother’s situation. Besides, I knew her better than hubby and son. I was her closest relative, and had lived most of my life with her or near her, and was best tuned to understand her.

I was working from home anyway…

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.

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.

For Those New to Caregiving

A few days ago, a friend asked me to jot down thoughts I’d like to share with a newbie caregiver–someone thrust into caregiving that could be intense or extended, but was not restricted to caregiving for a dementia patient.

Here it is; if it seems useful to you, share the link with others. And I’d love to receive comments …(ETA: For a  PDF download version, click here.)

Tips For Those New to Caregiving

By Swapna Kishore

Fifteen years ago, my father collapsed while getting up from a chair. A few hours later, instead of editing a document I had to submit to a client, I was trying to figure out how to look after someone bed-ridden thanks to a hip fracture. I assumed then that the situation was temporary, but as days, weeks, and months went by, my life kept changing to accommodate caregiving–first for my father, who never quite recovered, and then for my mother, who has dementia.

My caregiving journey is dotted with successes and failures, days of fulfillment and days of frustration. I’ve been sharing my experiences through my blog and website, and in support group meetings.  Some days ago, a friend asked me to jot down suggestions for people newly thrust into the role of caregiving. Here is what I think…

Most of us have very little idea of the intensity involved in extended caregiving. We may have looked after someone with a fever, or spent a week or so supporting someone recovering from a surgery, but that is quite different from caring for a person suffering from a serious or disabling condition such as late-stage cancer, cerebral palsy, dementia, or organ failure. We may not have imagined ourselves (given our gender/ qualification/ skills/ good luck) as persons who may need to provide such care.

Caregiving, identity, impermanence

As caregiving has occupied a larger and larger chunk of my timeshare, mind-share, emotion-share, my sense of identity has become tightly-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.

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.

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.

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.