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.

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.

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.

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.

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.”

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.

Learning from our experiences…

 Over the past few days, I  have forced myself to think about the far past of my mother’s situation, when there were hints I missed, and fears she hid by blustering through and raging, and the distance and the pain. It seems such a waste in this harsh light of hindsight; why am I forcing myself to look at it?

After all, it hurts to remember those things and write them out and expose them. So why?

The answer is simple: I may be at a safe place now, in relative peace, bridges repaired, connections forged, but there are so many others who face today problems similar to what I faced then…

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:

behavior of concern

A few days ago, I had the opportunity to discuss “Understanding Challenging Behaviour” with a number of professionals involved (or about to be involved) in dementia caregiving.

It got me thinking

There is, of course, no shortage of difficult/ challenging behavior when you are caring for a dementia patient. The nature of the disease keeps the patient disoriented about time and space, keeps memories disjointed or wrongly connected, affects even basic aspects like identity and interpreting the surroundings. A patient may not recognize a close relative, let alone a carer he/ she sees every day. Everything to a patient can be a challenge, and in response to this, the patient may react with withdrawal or aggression or any of the range of ‘challenging’ behaviors.

Then, there is this concept of  “behavior of concern” which is rather simple:  not every strange/ not-normal behavior of a dementia patient needs to worry us. Every model on dementia caregiving tells us we need to focus on behaviors with serious/ unacceptable consequences. Simply put, a behavior of concern is one that upsets or harms the patient or the persons (or community) around the patient. The rest of strange behaviors can, well, be set aside

Where is Mother, or, when a dementia patient walks out

One of the scariest consequences of dementia is that patients tend to wander off.

Imagine a lady with dementia sitting at home and suddenly thinking it is time to go to office (never mind she retired twenty years ago); she picks up a purse on the table (it isn’t even hers) and heads for the door. The surroundings seem familiar for a while, but then she is confused. Now she is in a strange place, agitated, not very sure who she is or what she is doing as her original reason for leaving the house has been forgotten. Meanwhile, frantic family members are trying to figure out where Amma has gone.

Or a restless, reasonably active person walking around in the house, and spotting a door. Out of habit, or curiosity, or boredom, the dementia patient turns the knob. Nice weather, good breeze. Another step and the person is out of the house, and no one else knows. After walking a block or two, the dementia patient realizes that he/ she is lost. Agitation, confusion, fear set in. He/ she wants to return home, but is not sure of the address, or may he/ she remembers ‘home’ from a different city, a different age.

anger, sorrow, and connecting with mother

I started blogging as a means of honest introspection, and so here’s (sigh), today’s truth: I got angry with my mother. The trigger was trivial, but I felt manipulated, and I took it personally though I need not have, and I got upset. I managed to breathe deeply in time, and no, I didn’t yell at her, but still….

Before my mother got dementia, she was a very intelligent, very energetic, and fiercely independent woman. She was very affectionate, but also capable of a lot of sarcasm and manipulation–in short, a challenge to handle if you fell on the wrong side of her

Today, she wanted something done, and instead of just asking for it, she used a manner of speaking that was just too reminiscent of her old ways.  She uttered a couple of sentences that triggered in me an entire set of defensive pre-conditioned responses. Though part of me remembered about her dementia, the other part insisted that this was not dementia speaking, it was the mother who I had resisted as a kid and even later.

an over-spicy day, and spice ain’t nice

Today I am tired, no, that’s not correct–I am exhausted. To put it graphically, for my mother it’s been a over-spiced day that led to emotional indigestion, and I’ve been busy all along trying to do the cleaning up

Here’s what happened:

A few days ago, the attendant who helps me with the nitty-gritty of my mother’s caregiving (bathing, incontinence, support while walking, just being a silent unobtrusive presence) went to her village because her daughter had an accident.

My mother can’t be left alone. Normally I stay out of sight bulk of the day, so as not to over-excite my mother, but after the attendant left, I parked myself near her. With me I took the minimal tools of my trade–my laptop, my files, my books, pens, other miscellaneous stationery.

dementia and repeating: when hundred is equal to one

Someone asks you a question once. You answer it. He asks it again, so, okay, you answer it again. The third time you answer it, you use an exaggeratedly patient, slow way of answering, and the person falls silent. One minute lapses, and you switch your mind back to where it had been before the question came.

And then, he asks it again, with an innocent air as if the question has occurred to him for the first time and it is really the most important question in the world. This time you grit your teeth.

What do you do the hundredth time?