A common loneliness…

For the last few days, I’ve been recalling some of the challenges posed in caregiving because of my mother’s condition. These were places where her memory loss and confusion resulted in her saying and doing things that hurt her and people around her. They caused me repeated embarrassment and anger and frustration, they made me withdraw from people around me and effectively isolated me, and they made her fall ill and hurt herself. Most of the time, though I had begun to register that she was acting out of confusion (and not because she wanted to be mean), I had no effective way to reach out to her or to explain to others or generally make things better. There was an overall sense of helplessness and inevitability that I experienced.

I’d like to wrap up this part of my recollections by sharing her obvious sense of insecurity and isolation.

There were many incidents in those difficult years that showed how insecure my mother had started feeling. In addition to making me promise again and again that I would take care of her, she made it a point to complain to everyone about me, and when they talked tough to me, she’d tell me, “See, did you see what he said? You must do your duty properly.” Essentially, she was using these complaints to make sure I didn’t forget or neglect my duty. Earlier, I’d seen it as manipulation done out of dislike for me, but over time I realized this to be a twisted thinking of hers to get what she wanted.

She felt that if others were always telling me what my duty was, she would be safer.

Though I understood why she was doing it, that did not make it any easier to handle the selfrighteous lectures of all and sundry whom my mother had complained to. They would not understand when I explained, they would not believe. They gossiped amongst each other. I only withdrew more and more from outside contact, too bruised by all this.

Here’s another example of things she did to get her security blanket.

She tried to secure her future by making sure my son was “on her side”. Once, early morning, when he was still asleep, she placed a bunde of rupees on his bed and told him it was for him. It was a large amount, and I protested, saying that it was wrong to give so much cash to a teenager. She pulled him to her side and told him she wanted him to buy whatever he wanted. She also called him aside once to tell him that he woulod be inheriting the house she was leaving to me, and wanted me to promise that I would pass on to him the house I would inherit from her. And the money, too. She then called him and told him that he should get married and stay there, with her, looking after her. There was no need to study, because she was going to give him the house. This was a lady who earned three post-graduate degrees talking to a boy still in school, whom she had taught as a kid. When he told her that no, he would be moving out to study and would go to college, she was very disappointed with him.

Another thing my mother did was complain that she was very bored because no one talked to her.

Few relatives came over by then (she had insulted some inadvertently, and while she had memory loss, they did not and they remembered those insults.) Not too many friends, either. Neighbors would drop by, but they were not available all day long, and she wanted company. She was no longer able to read, and TV was getting difficult to understand–she often lost track of who was who in TV serials.

What she wanted was that someone sit with her.

She expected me to do that.

I was already going crazy, handling my own work, handling the complications caused by her situation, the housework, the work-around required because I had to make sure no one called or sent a packet at a time she may rush to open the door when the bell rang. I had to handle her tendency to wander. I had to cope with the impact of her complaints about me, and the gossip and scolding of others. I had to make sure she did not harm herself while she seemed determined to do things that were hurtful. And in all this, she resisted my efforts to help, and cursed me if I tried to employ someone who could handle the work for some time so that I could rest and take a break.

Sitting with her and “chatting”? What on earth for? What about? I could barely look at her without remembering something painful.

“We have nothing in  common,” I told her. “People need company of their own age. I don’t expect you to provide me company.”

“We can talk,” she said.

“About what?” I asked. “I don’t watch TV serials, and you don’t read books. I don’t like to gossip. What can we talk about?”

She was unable to come up with topics of mutual interest.

I did try to get her interested in doing some math puzzles (a doctor had suggested keeping her mentally active) but she had given up after a few days, dismissing them as something children did (to cover up the fact that she could not do them as well as she thought she should, and she felt frightened by that fact). I got her cards so she could play “Patience” but neither her hand-skills nor her attention were good enough for it to be an enjoyable action–it only stressed her. I placed my son’s Amar Chitra Katha comics near her (he had outgrown them) but some neighbor commented on her reading “childrens’ books” and she would not touch them after that. I located the relatively simple Kamala Subramanium versions of epics, and she did flip through them a few times, but gave up soon.

What she kept insisting on was that someone should sit with her for at least an hour every day for company. To put pressure on us, she used her usual route–complain. Earned me a few more lectures.

I did try, though.

We took turns to sit with her. Every day one of us (I, or my son or my husband) would sit across her for half an hour. It would go in a tense silence, because we knew of no way to reach her. She could not understand much of what was said, or respond, and there were no common interests. I, for one, was very wary of saying anything to her that wasn’t absolutely essential, because of the way she misremembered things, placed them in a different context and twisted the meaning and ended up carrying grievances or complaining or feeling scared. I was also unhappy and stressed about all those other accusations she would make, and could not separate them away from my mind and relax in her presence as if none of that had happened.

She had memory loss, not I.

I can see now that she was lonely. Her mind, which had always kept her engrossed, was betraying her. This company she wanted was not for conversation, but to form a connection and feel secure and nurtured.

To me that demand was yet another chore. I did not see it as an opportunity to build bridges. I did not think bridges could be built between us–to me it seemed that we were on opposite sides, and I was to cope with her, to handle her, in whichever way I could manage. I did not trust her to be “fair” to me, because her mind was not working, and how could one communicate with such a person? Intentional or not, her situation had caused me enough problems already, and I was nowhere near knowing to handle it.

And now she wanted me to waste a half-hour sitting with her while she gazed at my face hopefully like I was some court entertainer.

Kuch bolo,” she’d urge me. (Say something)

Bolne ko kuch nahin hai,” I’d say, and purse my lips. (There is nothing to say)

Kuch to hoga.” (There must be something)

At this point I’d either stiffen and remain silent or say I didn’t expect her to understand my life and problems or plead work and slip away.

I can say now that this was really a missed opportunity. I did not know then that people in her state can still respond to positive emotions, and that they need such connections. That communication is possible. I saw understanding and reason as an intrinsic part of communication and conversation; because she was unable to understand, I considered communication infeasible with her. Nor could I get myself to chat about small incidents of the past–we had moved too far apart for such chitchat.

My focus back then was on hardening my protective shell to avoid more hurt. I resented her demand that I entertain her after she’d had her fun complaining against me. I knew she was facing problems, but I wanted to be safe from the problems her confusion created for me.

Loneliness is, in part, dependent on which memories and thoughts possess us more. It also helps if we have more pleasant things to remember, happier moments we can sync back to when alone. At that time of my life, I lacked moments of abandon and cheer to think about and relax into. For me, submerged in a role I wasn’t prepared for, trying to function in an environment where I was overworked and misunderstood and often on the defensive, this loneliness was cutting me deep.

For my mother, whose memories were muddled and often inaccessible, and who could no longer control her mind well, the loneliness must have been even more overwhelming. I can see it now, but I didn’t see it then. I can hold out my hand to her now, but I did not think of doing so then.

Funnily, now that she is bed-ridden and rarely talks, I am able to spend time with her now, communicating, enjoying her company. Things took time to change, but there were shifts that ended up achieving what I’d have considered impossible just four years back.

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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.

5 Responses to A common loneliness…

  1. janet says:

    This is such a poignant caregiver’s story. I am touched and humbled to read the honesty and reality of what you have shared here. Look after yourself well. Janet

  2. indrani says:

    Beautiful article Swapna – opens our eyes to the conditions and helplessness of such situations. Sensitivity and \genrosity cannot be measured – you have showed immesne strength though all this.
    -indrani

  3. Runa Sood says:

    I really don’t want to say more than this – that I have known other mothers such as your’s and not all were suffering dementia . Control , manipulation , selfishness are all a part of the scenario . The tyranny of the weak ! it also creates an impenetrable wall , reinforced by resentment , anguish , and a backlash of hostility . I see all of this , in your post . While we would like to think otherwise , the caregiver isn’t always able to provide the love and understanding without which caregiving becomes just an onerous ball and chain in one’s life . You have had a hard time of it – and so has your mother ,with all the misguided attempts at getting people to focus on her needs . There are no easy solutions , but detachment is a prerequisite of healthy caregiving attitudes . Do what you must , as well as you can , and don’t let it get to you! much easier said than done with all the exasperations that come with the job . Especially when you are caregiving to one of your own .
    Draw up your own ‘this far and no further’ emotional perimeters .

  4. It was meant for me to read this today because this is my situation with my mother who has FTD/Vascular Dementia. I’ve been struggling with my feelings of resentment (with her unkind behavior) and felt horrible about it. You have inspired me to give myself a break as well as my mother. Bless you.

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