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:

Pattern spotting

Yesterday, I wrote: “…the most prominent mistake I made in the earlier days was force-fitting patterns instead of looking afresh at facts, and seeing intention where the cause was confusion. ”

Analyzing, introspecting, recognizing patterns is an ability I’ve always tried to nurture and improve. I have assumed that these are good and important, and the best way to navigate life. Yet pattern-seeking backfired on me for the caregiving aspect of my life.

Here, for example, is one small but indicative incident (this was well before my mother was diagnosed).

My mother’s balance problems were very marked, and often, as she stood or walked, she would lurch and sway and stumble/ fall. This would happen anywhere, and she’d grab at whatever she could. Once, when she was in the kitchen, she grabbed at a knife on the kitchen counter, ouch! 😦

Being the Wind, being the Sun

I read a story long ago of the Sun and the Wind arguing about who is more powerful.

Then they spot this man walking on a road below, wearing a cape, and decided that whichever of them could make the man take off his cape was the more powerful one. Wind took the first turn, and blew a gale hard on the man, hoping to force the cape off him. The man only drew it close around him, gripping tightly like his life depended on it. The harder the Wind tried, the tighter the man clung to his cape. Then the Sun took his turn, and shone gently on the man, and the man relaxed and took off his cape.

Of course, the story doesn’t make all that much sense if we factor in that the Wind did the only thing it could, and so did the Sun. But I always think of this story when I remember my years of caregiving for my mother.

The unexpected quality of openness

One of the loveliest parts of starting “fun” time with my mother was the way I began looking forward to that time slot with her. I didn’t have to be competent all the time, or keep trying to improve things. My need to “preserve and protect” my boundaries dissolved, too.

Strange how, after decades of establishing a boundary with the parents to define oneself as an individual, it is only when those boundaries dissolve that one finds  the best of oneself….

Care is often not seen as related to fun. I definitely did not think of “fun” for years. Oh, I would try to talk to my mother sometimes, but it didn’t quite work out. For one, I lacked the skill to orient with and feel comfortable with her view of reality. And another, I always had a agenda, even though I wasn’t aware of it myself, and that agenda was to make her accept her situation and improve.

Enjoying fun time with my mother

Here’s my mother’s favorite story: There were four young Brahmins who had spent years studying in an ashram, and finally their guru told them they were ready to go out into the world and use what he’d taught them. Use with caution, of course. And as they walked across the forest they saw the bones of a lion scattered on the grass, and decided to try out their skills on it, taking turns. And then, stuff happens.

This is a story from the Panchatantra. It has a moral. It has a lot of great graphic pictures in the large-print version of the story I have.

Have you heard the story? How many times?

Ever so often, I ask my mother whether she wants to hear it. If she is sleepy, or unwell, she shrugs or ignores me. If she is awake and happy, she nods her head with the sort of eagerness one expects in kids hearing their bedtime story. And I begin talking…

Ignorance is not bliss…

After making yesterday’s post, memories have been flooding me. Memories of how people I knew well, good, well-respected, educated and informed, religious people would say things that could only be called cruel to my mother, because they refused to understand my mother’s ataxia and dementia, and how these affected her. People whom I repeatedly requested to change the way they talked to her, but they refused, claiming I was exaggerating things or just exercising “control” over my mother. That I was not doing enough to make my mother okay…

I could probably exhaust a month’s worth of entries over these memories, but I’ll select just a few and write of them today.

Take this elderly gentleman in our neighborhood, who was mentally sharp even though in his eighties, and he loved meeting people. He could remember everyone’s name and face and life history and hold interesting (well, almost) conversations with people. He would drop in to meet my mother sometimes. For some reason, it bugged him to see that she was not socializing with people, and stayed in the apartment all the time.

a paradigm shift by moving beyond concepts

I mentioned yesterday that my effectiveness as a caregiver improved and my life became less stressful once I moved from a role of ‘doing things right’ to one where I became an informed and involved caregiver.

It seems obvious, in hindsight, that caregivers should understand how dementia affects a person to become effective and creative in their role.

But I experienced an even bigger shift when moved beyond book-knowledge  and allowed myself to soak the concepts at an emotional level. The real benefit came when I extended my understanding beyond the dry theory level to a place deep into the heart.

Were those signs of impending dementia?

In 1990, I published my first book, co-authored with my husband. We were both very thrilled with the milestone, and presented a copy to my parents. The book, What Every Manager Should Know About Computers, was (according to us) a very simple introduction to computers. We assumed anyone would be able to read and enjoy it, especially proud parents. (or at least they could pretend to do so).

Well, my father tried reading it. He read two chapters, then gave up, but he did say that maybe, if he was younger, he would have been able to read more. He then switched back to the bestseller he was reading.

thumbs down

My mother holds three Masters degrees (Education, Philosophy, and Psychology).  Being highly educated has been, to her, a very important part of her personality. She considered anyone uneducated as less intelligent and just…less of a person.

When she saw someone use a thumbprint instead of sign a document/ cheque, she would wrinkle her nose. Being an अंगूठा छाप (one who needs a thumbprint for a signature), was, to her, the ultimate insult.

Things have changed now. She cannot sign any more, not even hold a pen correctly. She does not remember her name, or remember what writing is.Today, with great hesitation, we needed her thumbprint on a life certificate that the authorities require. I was dreading her reaction  —  but she did not seem to register what was happening as the doctor (with an expertise that shows this problem is common enough) pressed her thumb on an ink-pad and took its impression.

I don’t know whether to feel relieved that she did not mind, or to feel that her not minding is yet another tragedy of her situation…

My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes

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Joys of the crafts

One problem of my mother’s restlessness is that she starts scratching herself, and then continues to do so till her skin had livid patches of red. They hurt, so she scratches herself even more. The doctor had prescribed mild anti-histamines for it, and the course he suggested got over two days ago.
And sure enough, she was scratching herself again within a day of the medication stopping. We try to keep her from hurting herself by filing her nails smooth every day, but she manages to snag her nails and break them despite their being short and neat. We tried to distract her, but it didn’t work.

So yesterday, I thought about trying out mittens. That way, even if she scratches herself, it is unlikely to be severe, and she may even forget to scratch…who know? Worth a try…

tooth tales

Out of the blue yesterday, I had a few fun memories of caregiving. I must admit they weren’t that much fun when they happened, but when I remember them, I find myself grinning.

Like the day my mother told me her teeth were hurting, and I asked here where, and she touched her eyes.

Or another teeth-hurting day, when she could not say which tooth was hurting till I took out her dentures, and then she touched a tooth in one of the dentures and told me, this one.

Mom always had the great confusion about dentures. If I held out the denture and asked her to put it on, she would tap her (existing) teeth, and nod, as if to tell me she had already done so 🙂 On a few occasions, she tried to take out her teeth after already having taken out her dentures.