Some days are good

This is an update to my previous post regarding my mother’s condition; after a two-month-long deterioration, my mother stabilized, and then began showing awareness of her surroundings again, and responding to us on some days.

As anyone who has lived with a dementia patient knows, there are good days, and there are bad days. Before March, while my mother was generally inactive and not talking, there were days when she’d nod, smile, and say a few words. She would clasp my hand and kiss it.  She smiled.  Once in a while, she’d surprise us with a full sentence that made sense. Such good moments were what brightened the caregiving and brought smiles to our lives.

Those good moments reduced and then vanished around March this year.

My mother stopped uttering even a Yes or No and she no longer nodded or shook her head or clasped my hand. She barely opened her eyes when fed, and often refused to open her mouth. She did not wince or show any pain reaction. She did not react even when the technician jabbed her for a blood sample. It usually takes multiple jabs to take out a sample from her, and they have to poke around the needle in her flesh in a way that seems like sheer torture, but she slept through that entire process. The test reports were within acceptable ranges, and the doctor could not find any problem when he examined her. But she was fading, and we could not reach her as she sank into some world of her own.

We continued to talk to her, hold her hand, try and coax her, but at times it felt as if we were intruding, because it was not clear whether she preferred our presence or wanted to be left to her silence. We also kept trying to tweak things in ways we thought she would be more comfortable–wiping off her sweat, making her drink ORS when it seemed hot, and so on–but it was mainly guesswork, because she was not complaining or wincing or showing any happiness or unhappiness.

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Hurting herself without meaning to

One of the most worrisome part of the situation of my mother in those-mid-stage dementia days was how she would keep harming herself.

In the Delhi summer, with the sun shining at its hottest in a patch of the walkway in front of our apartment, my mother would dash out of the house and stand exactly at the spot where the sun lit up her scalp. (This was before I’d placed a lock on her door to prevent such outbound dashes from the apartment). Some time would pass before I checked her room and find her missing. When I would realize what had happened and rush out to fetch her back inside, she would sometimes agree easily, but need persuasion at other times. I would try explaining about heat strokes, but she would say she didn’t feel hot. “See, I don’t sweat,” she’d point out. To me her not sweating only meant the heat would hit her worse, and it did. She’d get fever, she’d shiver, she’d get incoherent.

In winter, the cold Delhi winter, she’d throw off her quilt and peel off her woollens and then sit on her bed, curled tight, till I spotted her. She would get upset if I put on the heater. Curled tight into a ball because she was cold, she would refuse to relax enough for me to slip her cardigan on. I’d have to use blankets, hot water bottles, gentle massaging of her body, to make her loosen up enough to wear her woolens back.
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She doesn’t cook for me

I had started working from home before my mother’s dementia-related problems became prominent. We moved in with her after my father’s death, when none of us suspected that those tiny problems we saw could have a medical reason. She seemed normal enough, except for her growing balance problems. I would do the cooking because I wasn’t comfortable with her working in the kitchen because she could sway at any moment, and would grab whatever she saw. Sometimes one would find her on the floor, a chair fallen on top of her–ouch 😦

I handled all the cooking with some help from my husband. Most of the time I cooked food the way my mother had cooked for me, using the same spices, cutting the veggies in the same shape and size, making dishes as close to the ones she had cooked. I did this so that she was comfortable with the food and could eat well.  Except that now my mother wanted food the way her grandmother cooked for her…

Because I worked through the day, I would finish off cooking in the morning. Daal, veggies, roties, all would be placed in hotcases, so that anyone could eat whenever he/ she wanted without my having to interrupt my work. This was something my mother herself had done for years now–finishing off the cooking early to have the day free for whatever she wanted to do.

But my mother had changed now. Her standards of “proper homes” had become more traditional, reverting to her grandmother’s days. She began complaining at this early morning dispose-off-the-cooking method, and I had to start making the rotis fresh in the afternoon, as is common in North Indian houses, because, when she was a child, she used to eating fresh rotis. I tried to get my maid to come at noon for making roties, but didn’t manage.
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Murderers, thieves, and an old woman amidst them

Fear that she’ll be cheated or attacked were one common thread my mother showed, often based on things totally ordinary, or on imagined events or projections.

I remember I was once doing my strength exercises and lifting a barbell with some effort (okay, a lot of effort). As I lowered it with obvious relief, I noticed my mother at the door of the room, watching me. “Yeh kya mujhe maarne ke liye practice kar rahi ho?” she asked me. (Are you practising this to be able to hit me?). I was totally nonplussed, and could not even mutter a “No.”
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Beginning to understand the reality of “memory loss”

Here are a couple of incidents that made me register the fact that my mother was facing genuine problems that were totally disorienting her and contorting her perception of reality. That her abilities had deteriorated to a point where she was unable to understand things we all assumed to be simple.

One incident was during her evening walks. I had managed to get a maid who would take my mother for a walk every evening. After a few days of trying to take her down to walk the compound’s roads, and narrowly missing falling because my mother walked in too fast and too imbalanced a way, the venue of this evening exercise was moved to the relatively safe corridor with its even floor and grab rails.

One day, the maid told me that Mataji had asked whether it was morning or evening, and not believed the maid when she said evening. Sure enough, a few minutes later, my mother called me and asked me the same question. I was in a sort of fog of disbelief as I told her it was evening. “Are you sure?” she asked. “Yes,” I replied. “How do you know?” she asked.

That was quite an unexpected problem.
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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:
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dreams and reality

I had one of my ‘favorite’ nightmares last night. It relates to reversal through time.

It starts with my mother being the way she is now, unable to do or remember anything much, but reconciled to it and peaceful (at least most of the time). I am driving her somewhere (usually to a doctor) and on the way, she starts changing. Her eyes get a life of their own, her way of looking gets sharper, her voice gets back its energy and coherence. I need to park to do something (buy something?), and when I return to the car, she’s in the driver’s seat.

At this time, she had become young again (well, around 60+, but that seems young to me given the way she is now). She is impatient with me, she remembers things that must be done (and that I have not done) and I realize that she no longer has dementia. She is, in short, back to being as…well… as energetic about her desires and values and about my mistakes as she used to be. She accuses me of having tortured and imprisoned her for the last few years under the pretense of dementia, and drives the car in a sharp u-turn just to prove how wrong I am, how very evil and scheming, and how competent she is.  Her face is a tight red with anger.
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