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.

Again and again, my mother would fall ill, and we’d nurse her back. People would tell us to be more careful, but how does one keep a watch around the clock? Delhi’s weather of extremes was very difficult to handle. Just turn your back long enough, and she’d do something weird and self-destructive…

Once she developed shingles. She scratched and infected the rash; she just could not remember that scratching would make it worse. She would get restless and take off her clothes and scratch vigorously. I remember once when she’d stripped, oblivious of the fact that it was night and the lights were on, the window and door open. I dashed in to pull close the curtains and my rushing around agitated her and she started shouting at me. Maybe I should have been slow and gentle about it, but seeing one’s parent sitting sans clothes in her chair visible to anyone passing in the corridor was a scenario I was unprepared for; I reacted in a panic mode….

After her shingles, her problem continued as post-herpetic neuralgia. It was extremely painful for her, more so because she did not understand it. Again and again she would get angry for me for not making her okay; she would complain to others that I was not taking care of her, because she could not understand that I could do nothing. Doctors had told us this would take time to go, and that it varied from person to person, but she blamed me for her problem.  She would do weird things like getting up at two in the morning and having a bath, scrubbing her skin hard to get rid of that awful scratchy tingly feeling she had because of her problem. I’d get up to the sound of tap water filling a bucket, the bathroom door closed, and there was nothing I could do but wait and pray she hadn’t set herself back too much. I removed the bucket the next night, hoping her hunting around for the bucket would wake someone up.

Then there was this thyroid medication she was supposed to take every morning. My mother got a thyroid problem way back in the 1960s; this was a medication that she was totally used to taking. She had often joked that those pills were like “food” to her.

I would set out the pills in a small box at night, along with a glass of water, so that she could take the medicine as soon as she woke up. I’d check up with her every morning whether she’d taken the pills, and also make sure the container had been emptied. Yes, she had taken the pills, she’d tell me.

How very naive I was. One day, cleaning her bed, I spotted around a month’s worth of medicine under the mattress. I asked her why she’d not been taking the medicine, and she looked at me very suspiciously and said she was not unwell and saw no reason why she should take any medicine just because I told her to.

Often, those days, she would get suspicious when I gave her the regular medicines, and I was used to showing her the prescription and explaining each medicine and its purpose. Except for that morning medicine (which she was supposed to have as soon as she got up), I would make sure she had the medicines in my presence. Given how used she was to the thyroid medication, and the fact that the medicine would be gone every morning, I suspected nothing.

The symptoms of low thyroid are the same as dementia symptoms (in fact, hypothyroidism is one of the “reversible” dementias) and so it had not been obvious that she had been skipping her thyroid–it had just seemed like her dementia was worsening, and her inactivity leading to weight gain.

It took three months to get her thyroid readings back in acceptable range, and ever since then, I make sure that she actually swallows every medication given to her 😦

All this may seem to mean that she was willing to harm herself. Quite the contrary. It was not as if she wanted to be careless or harm herself. She wanted to be well and free of pain and problems, but had lost the ability to know what it required.

There were times she did figure out what was needed, but again, her behavior ended up risky in other ways.

An incident I recall is one where she was having some irritation in the eye. She told me about it that morning, and I said that I’d take her to the doctor that evening. The eye-doctor’s clinic opened late-afternoon to evening, and I’d take her then.

My husband had just undergone an operation and I was to accompany him for a post-operative checkup that morning. My mother knew about this. I told her that I’d take her as soon as I returned from the hospital. I told my son, who was at home that day, to take care of her till then.

When we returned from the hospital, I saw my mother being escorted back to the apartment by a rickshaw-wallah. She was in her outside clothes, and clutching a knotted handkerchief (her way of taking money along).

Turned out she had left the house in the afternoon because “you were not taking me to the doctor,” as she told me.  My son, studying in his room, hadn’t suspected anything when he heard the door close, because that was a sound that would keep coming off and on all day. My mother, who needed support while walking, managed to reach the end of the corridor by holding on to the wall and the railing. There, at the head of the stairs, she beckoned a young boy, probably around twelve years old, and told him she needed help going down the stairs. The boy obliged, and helped her down the stairs and left her there alone. A row of rickshaw-wallahs was always waiting in front of the society; when they saw her there, one of them who knew her well, brought over his rickshaw and helped her in. She told him to take her to the doctor; he knew the doctor she meant and took her. Not once did any of these persons pause to wonder why a lady in an obviously helpless state was trying to go alone to the doctor. Or maybe they assumed the family was not helping her…

The doctor was shocked to see her alone. After examining her and prescribing the medicine, he offered to drop her back, knowing that she could not go alone. Luckily, the rickshaw-wallah, having sensed that she would need a ride back, had stayed on, and the doctor deposited my mother safely into the rickshaw.

I dread to think of all the things that could have gone wrong. I was upset at the way she’d walked out, even though I’d clearly told her I’d take her as soon as I returned. These were early days, and I’d not yet understood the extent of her memory loss and disorientation, and that such people wander. Here was a case where she tried to do what was good for her–going to a doctor–but in a way that was too risky and unwise.

Most of us do not organize our lives for constant care of an elder unless we understand it to be necessary. I did not know that such care would be needed and was definitely not geared for it. I was checking up with her ever so often, peeping into her room every hour or so, but that still left enough time for her to wander or to harm herself. It is easy to say in hindsight that a full-time help, or at least a day-long help would have been good, but that is not so easy to arrange. Nor was my mother ready for anyone to be there with her. She liked her independence and privacy. She saw any hired help being around as intrusion, as a “tumhara jasoos” (your spy).

When I think back to those days and wonder what else I could have done, I still don’t have nice and clear answers. Ideas, maybe, but very shaky ideas and they  could have backfired.

This is the challenge: how does one help someone who does not know she needs help, does not want help, resists help, does not know her own problems? Someone who cannot understand her problems, and even if she does, will forget them and do something harmful?

There was also the problem of the people around who would “support” her without understanding what real support would be. Like telling her she was the head of the family and it was for her daughter to listen and obey, and encouraging her to be “independent”, which included going out without telling me. How does one help an elder with dementia in an environment where everyone around us sees this person as “normal” and sees the family as bossy because we are trying to stop her from harming herself?

On the other hand, I was also supposed to make sure she was not hurt or ill. If she fell ill, it was because I was not making sure she didn’t stand in the sun, but if I would herd her back home, it was like I was being controlling and who was I to go around telling my mother what to do?

A few days ago I met someone whose mother has dementia. He told me his family and neighbors understand the problem enough to stop the lady from wandering. I think of that young boy who took my mother down the steps and then left her alone, while it was obvious that she could not walk. What did he expect her to do? I think of the neighbors and others who would egg on my mother to do things alone, even though her balance problems were obvious, and even though her confusion was obvious. It is a relief to know that people now are at least somewhat more aware of dementia behavior, and more willing to listen and understand, but I suspect we still have a long way to go.

This post is part of my sharing of personal experiences as a dementia caregiver. You can check out more entries describing other similar personal experiences here: Challenging Behavior faced while caring for my mother

If you are looking for resources to understand and cope with challenging behaviour, check out these links: Handling Behaviour Challenges and Special tips for challenging behaviours: wandering, incontinence, repetitions, sundowning.

Subsequent to making this post, I have also created a video that discusses the wandering problem and provide tips for family caregivers. You can view it here: Dementia and wandering (Hindi version: Dementia mein bhatakne aur khone kee samasya)

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages:

3 Responses to Hurting herself without meaning to

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