Hints and misses

In those early years, before my mother was diagnosed, and in the period just after, there were several small things that struck us as odd or surprisingly hurtful.

I did not piece them together into ‘dementia behavior.’ I saw in them patterns that indicated out-of-touch with contemporary life, unfair use of ‘authority’, lack of love, inconsideration, and worse. I responded by withdrawing, hurt and bewildered (what had I done to deserve this), and an occasional protest. I did make some attempts to explain and understand; often these seemed to go well, but within a few hours, my mother was back at accusing me of all sorts of motives and complaining about me to anyone and everyone. Often when I meet caregivers now, I find them going through the same phase of hurt/ bewilderment/ frustration/ helplessness. Many are angry, others are sad, but helplessness about how to cope underlies most situations.

Some problems I faced were minor irritants, some were major issues. In today’s post, I’ll share some of the minor ones, which could have been taken as hints of her condition had I been better informed:

When my father died (he was in intensive care in a hospital), my mother transformed overnight into a very nervous woman, insecure of her future and unable to handle anything at all. It seemed strange because she had always been a strong, pragmatic sort, and he had died after a slow decline so it was not an unexpected death. We all understood the inevitability of his condition. On the day of his death, mother pulled me aside and asked me to move in with her, saying she could not handle living alone: this was the woman who lived alone through the partition riots, and had handled countless emergencies with responses even doctors could not have improved upon. Death is always unsettling, howsoever expected, so I tried to support her and we all (I, hubby, son) moved in that very night.

Then she started acting strange. She would look at us and say we were crowding her house, and when we said we would move out (our apartment was in the adjacent building), she’d get angry that I was “threatening” to leave her alone. She was very upset that we brought along our quilts (this was peak winter), saying her house was getting crowded. That sounded downright unreasonable. She then started complaining that she had no money, and on the other hand, started claiming we wanted her money. She was, frankly, very comfortably off, so I sat down and explained her finances to her, and also initiated the process of her getting her family pension and so on. These were governmental procedures and would take time; I explained all this to her, and also showed her how satisfactory her finances were. She had always been particular about being independent, so I showed her that she was well-off enough and need not worry.  I documented all her accounts and all that, and explained it to her. Once. Twice. Yet again. She would nod her head and seem happy, but when visitors dropped by to condole, she would say I was doing nothing to get her the money that was her due.

They would then come and give me a lecture on “duty”.

If I could get a rupee for every lecture I got from persons who believed my mother’s complaints about me, ah….

Another strange thing she did was watching me when I worked. She would angle her chair in her room so that she had a view of the dining room and my room, and would keep staring at me as I worked. It was very disconcerting. When I asked her what she wanted, she’d say, “Main kya dekh bhi nahin sakti? Usme kya galat hai?” (Can’t I even even watch? What’s wrong with that?). I told her it made me feel like I was a zoo exhibit, but she persisted.  Sometimes, she would walk over to where I was sitting with my son and working with him on something, and she’d lean against the wall nearby and say, “Hanso na. Tum log hanste kyon nahin? Aur gharon mein to log hanste hain.” (Laugh. Why don’t you people laugh? In other homes, people laugh.)

Sometimes, when eating a dish cooked in the way she herself would have cooked some years ago, she’d shake her head. “This is not the way we make it in my house.” “What do you mean? This is how you used to cook it,” I’d respond, but she’d just shake her head. It took me a long while to figure out that when she said “my house” she meant her childhood house.

She often behaved as if she had to do all the work. One day, when I was cleaning the kitchen platform and my son was cleaning the fridge door and my husband was rinsing the dishes, she entered the kitchen and peered at the fridge door and wiped a small smudge off it, and said, “Sab kaam mujhe hee karna padta hai.” (It is I who has to do all the work).

Then, there was this bunch of comments she had on my work.

I was mostly working from home then, and had been freelancing for years. But I still needed to visit clients for meetings and discussions and to deliver work or follow-up for something, and so on. My husband traveled a lot for work, and was out of town for a few days every week. This was not excessive work for either of us given our professions and peers; in fact, it was more laidback than many career persons I knew.

My mother was convinced that we were working only because we were greedy for money. She would keep commenting on that every time I went out for work, as if working for money was shameful in some way. I explained to her that most people work; even the doctor who came to see her when she was unwell was working, as was the delivery boy who delivered the groceries or the postman who brought letters. And people got money for their work, and money was needed to run houses. Somehow, she could not understand this.

She was also very critical of me because I did not seem as worried as I should have been. If my son had gone out, and was delayed in his return, I did not pace the floor as much as she felt a good mother should. I did not go and wait at the colony’s gate. I explained to her that when my son came back with his classmates, if they all saw me doing the “anxious mother” act at the colony gate, it was highly unlikely that my son would be appreciative of such “love”. My pacing at the colony’s gate would not make him come earlier. She was very upset. Of course, I know many mothers who pace like that, and also many grandparents who feel that the parents are not parenting well enough, but the point was, it was not that she disagreed–it was that she didn’t seem to understand at all. I’d explain, and she would, the next day, repeat the same thing as if I’d said nothing. It was a very deja vu life.

Then, there was her repeating. She’d tell me something. I’d say, okay. She’d come again, and say it. Again, I’d say okay. By the third reminder (within ten minutes), I’d start getting irritated. “You told me, I agreed. Why are you telling me again? I don’t forget things.” By the sixth time, my voice carried an edge to it. Then she’d explode. Either she’d claim that she’d not said anything before, or she’d say, “So what if I said it? I’m your mother, I can say anything as many times as I like. This is my house.”

I remember another incident: I had applied for a credit card. This was well before the days when banks began desperately pushing cards on everyone who has a hand that can hold one 🙂 That credit card application contained a column of whether the residence was rented or owned, and as the apartment belonged to my mother and me (after my father’s death), I had ticked “owned.” Definitely it was not rented, anyway. I saw myself living there because I was family, not tenant. As per their convention, the credit card department was to make a confirmation call. I had explained this to my mother, telling her what they may ask. My mother picked up the call when it came. I was in the other room, and heard the conversation. I heard her huffing at someone, “What do you mean! This is MY apartment, she just lives here.” Needless to say, I did not get that card.

Then, there were phone messages. When I was not at home, she’d pick up the phone, take a message, and not pass it on. This led to many very embarrassing situations because professional colleagues would say, “We told your mother,” and did not seem to believe that we didn’t get the message.

Once I returned home and found her very agitated. Apparently, someone had called and left an urgent message, and she couldn’t remember it. When I tried to explore with her (was it a man or a woman? English or Hindi?) she suddenly flew into a rage. First she closed her door and refused to open it, which was very frightening for me. After a while she opened it.  When I went in, wondering whether to continue the topic or write off one more business contact / friend, she said very bitterly that I had been lying when I said I’d suffered a loss because of her. The sad part was, I had said no such thing. I had only tried to ask her a few questions to narrow down the possibilities of who had called.

On another occasion, she gave me a long message from an old friend. Apparently, his wife had got cancer and was dying. She hadn’t noted the number, though. I tried hard but could not locate the friend’s number. An year later, when I managed to contact someone who knew him, I found out that his wife did not have cancer. To this day I don’t know whether she misremembered the name of the friend (it may have been someone else) or whether there had been no such call, and she mixed up a TV play with reality.

We got ourselves a couple of other phone connections and kept the phones in our room, but she would pick them also in our absence, and the problem continued. I attached an answering machine, but she’d mess up that, too. Finally, I began disconnecting our phones when we went out, and connecting them when we returned.

(This was before mobiles became ubiquitous.)

It is easy to see now, with the benefit of hindsight, that these and many other such incidents were caused by her disorientation and memory loss and covering up of the same. These were not “normal”, not “ageing”, not “power games.”

What I did in response to these odd and often inconvenient/ hurtful behavior was discuss with her. She probably could not understand my rational train of thought and long-winded explanations. When nothing seemed to work, I withdrew and tried to make sure that her odd behavior did not cause me too much problem. Sometimes, I even exploded back, because I was “unwilling to be taken for granted.”

As I see it now, she was afraid of what was happening, but not admitting it. Her actions stemmed from confusion and cover-ups. Had I understood what she was undergoing, I might have tried to bridge the gap between us using emotion and affection and reassurances. I may have managed to reach her and build a rapport that would have helped us both cope with the next phase of her decline better.My withdrawal would have made her insecure and my occasional explosions would have frightened her even more.

I talked of patterns some time earlier, and that pattern fitting can harm. I don’t think that there is, per se, a problem perceiving patterns. Where many of us err is over-applying this ability, to a point where we force-fit things and ignore new evidence that doesn’t fit.

This is what I think:

We need to have patterns. We need to quickly respond to things around us. Biologically, we are tuned to recognize danger immediately so that we can apply the fight/ flight response and protect ourselves. We survive because we kill before we are killed, biologically speaking. Erring on the side of seeing danger when there is none is better than not seeing danger when there is danger.

For us, no longer in jungles, this probably translates into reading hostility in faces. When someone acts in ways we find inconvenient or hurtful, our protective mechanisms swing into place to prevent future hurts, and we may assume that this person who is hurting is dislikes us and we need to be safe from this person.

Such interpretations are often unsuitable, of course, because when people around us do things, we are often not the sole reason for their actions. We’ve all heard explanations of how a boss may be shouting at us because his toast was burnt in the morning and stuff like that. Anger management courses are replete with such examples.

The situation gets even trickier when the person acting “unacceptably” is someone suffering dementia symptoms. We all assume a person who acts is doing so for a coherent reason, and if the boss didn’t yell at us because of something we did wrong, he yelled because his toast got burnt or whatever. There is a reason, an intention, and this is reasonably rational behind every action. Nothing happens without a reason, we are told.

Yes, but sometimes the reason may be so obscure that it cannot be seen.

When a dementia patient’s memory has gaps, these gaps may be filled by confabulations, creating a false reality for the patient who then acts on that false reality. Or the patient lacks the ability to connect things and therefore operates from a very different reality, or out of utter confusion. Even the ability to “act” is compromised; the words come out wrong, the sentences are wrong, the ability to express oneself or do things is compromised.

Evaluating such a person’s actions and speech using the measuring stick of “normal” behavior is unsuitable, misleading, and ends up in problems and disasters for all concerned.

That was a mistake I made, and that I find many caregivers and people around patients make.

Any bonding of affection weakened, and emotional distance increased. This made things particularly difficult when my mother’s confusion worsened and she slipped into the middle stages of dementia, where behavior challenges are most pronounced. More on that later.

You can check out more of my personal experiences during my mother’s early and mid-stage dementia using the various menu options under Caring for mother, especially the option: Living with dementia

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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.

2 Responses to Hints and misses

  1. Pingback: Not letting the tears go waste… « Swapna writes…

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