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.

Mother seemed to like it. She chatted about monkeys in Shimla, about her grandfather’s English mistress (first time I heard that one 🙂 and how her sister is there, see, in the clouds. She talked about the difficulties of whitewashing houses, and a lot of stuff that all seemed very coherent unless you listened and saw those inconsistencies and leaps. I kept smiling and adding a few agreeable comments as I worked intermittently on my to-do lists (or tried to).

My mother also talked a lot about the attendant and how the attendant should make sure her daughter has recovered fully before she returns. She went a step ahead (very unexpected, very touching), sympathizing with me for the increase in my workload. I was amazed at her ability to think, and quite encouraged by it.  I was touched by her concern. Hope glimmered…was she improving?

Then, she fell silent. She froze, almost rigid. She stopped saying anything. She refused to sleep during the daytime. She kept gathering her stuff around her. She refused to play games she usually enjoys. She insisted on sitting and staring at me while I worked (it was like writing an exam paper with the invigilator glaring at  you.)

It was obvious she was agitated, but she would not tell me what it was. She cried, but could not or would not say what worried her.No amount of coaxing helped. I thought she worried that the attendant was not there, and I hugged her and told her not to worry, I was there, she would not be left alone. She smiled for a few moments, then reverted to the part-cunning-part-scared-child look.

This continued for hours, and I set aside my work completely,trying to figure out what had happened. I remained clueless even as her agitation increased.

It was only at the end of the day that she asked, “So when is the doctor coming?”

“What for?” I asked, alarmed. “I haven’t called a doctor. Do you want a doctor to come?”

“Then how will I…” At this point she froze again, and refused to speak.

Finally, a clue.

A lot of creative thinking, small questions, and the joining of faded and non-existent dots later, I saw the picture emerge. Mother was absolutely convinced that she was in the hospital with some grave illness, and the doctors were not coming. As she processed the information of two major inputs (my constant presence, and the story of someone being in the hospital because she had an accident), she combined them into a coherent whole. Dementia patients, with their extremely scanty memories, often do that…

All the explanations given during the day, seen in this framework, supported her anxiety. My hugging her–obviously the illness was very grave. My presence–why else was I there? All my stuff–must be medical.

Worse, for patches during the day, she forgot that I was her daughter. So, when I explained stuff, she didn’t believe me. Why should she–who am I, anyway? Something was seriously wrong with her, and there was a conspiracy underfoot to hide it.

We who caregive dementia patients learn (the hard way) that when explaining does not work, even a sentence, a phrase at a time, we should try distraction. Or fiblets. Understand and validate the emotion, we are told. Dementia patients cannot understand things, but they understand emotions. That’s how I handle such stuff, every day, every ‘episode.’ The problem is reaching a point when I understand the underlying fear or emotion.

Sometimes it takes a few minutes to figure out what the dementia person is feeling, sometimes an entire frustrating day.

Which brings me to a comment: people who want variety and spice in life should try slipping into the skin of a dementia patient, because for them, everything is an overload. Think of a fraction of my mother’s day as she works through those second and minutes and hours…

That face before me, who is that? What does that tired looking woman mean by telling me, she’s my daughter? Look at those dark circles, that white hair. My daughter, huh? She’s lying, of course, must be crazy–can’t trust anyone in the world, really. I’m not even married. And why is the mirror showing a face with wrinkles, who is that–not  me. Someone’s jiggered the mirror. What is this place, anyway? And where, oh where, is the toilet? I have to go. Why can’t I walk, what’s happened to my legs?

I wonder sometimes how my mother navigates the day. Just watching her do that tires me–I wonder what it does to her.

Usually, I try to give my mother a secure, unchanging environment. People find it difficult to understand why I stick to the same (and what they consider boring) routine for my mother every day, I’ve been called mean for it, I’ve been accused of being lazy, inconsiderate, and even of ‘murdering’ my mother by ‘slow torture’. None of these people understand that everything is almost always new to my mother, and  routine gives a slight semblance of sanity and security to her. Believe me, she needs it. A break of routine is a total overload. It takes away the few things that anchor her, and leaves her adrift through the day.

Variety is the spice of life, and so, to people, my mother’s life lacks ‘spice’. But to me, seeing her struggle to navigate the day, seeing her thrashing helplessly and feeling lost at the removal of any anchor, it seems she has spice enough to cause emotional indigestion.

I’ll keep my routine for her bland, thank you.

Related links:

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

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.

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

  1. austere says:

    I can understand, somewhat, about the need for routine and predictability. My Baba’s 85, and you should see the worry lines on his face when guests are to “drop in”. Luckily for me, and touchwood, the markets and tv, the n’papers are a part of his routine as well.

    Tc.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s