there and yet not there

Nowadays, my mother sleeps for most of the day, and the rest of the time, she looks sleepy. I have tried holding her hand and talking to her, she smiles lazily, sometimes utters a word or phrase, and then closes her eyes.  If I ask her whether she is sleepy, she nods her head.

This is not a sudden change, but it took me a while to register this new ‘default’ state. I realized yesterday that we had not played games with her for a number of days, because whenever I suggest a ‘game’, she shakes her head. I have managed to make her count my fingers, or identify colors and objects, but even that seems to tire her, and so I have to stop after a short while.

A year ago, she would do small jigsaws, place rings on a rod, and play games where  she recognized or matched colored pictures. She saw albums and commented on them. We used picture charts. She even read a few phrases from a large-print Panchatantra book.  She could read aloud letters from her grandson (written in simple sentences, printed out in large font). She practiced her signature every day, and sometimes managed it almost correctly.

A year ago, she could walk (in a fashion) with support, and our apartment was full of strategically placed grab bars and furniture that would not move if she leaned against it. Our fear then was that she would fall. (And she did, around once a week). Our challenge was making her go to the toilet in time for the various toilet related ‘jobs’, and to ‘help’ her take her bath.

The challenges today are so different. She cannot fall, because she is on the bed and does not move. The only way she ‘gets up’ is if she is lifted and placed on a chair. The grab bars are redundant. The more complex games and books are redundant. I still hope I can coax her to attempt the smaller, simpler games…

Last year, I met a caregiver whose mother has dementia, advanced stage. She told me her mother was completely bed-ridden, was immobile, and did not talk at all. They were not sure she could hear and understand, because she showed no reaction. It sounded very intimidating to me, so I asked her how she managed. She said, “Oh, it is very simple. She sleeps all day. We turn her side every two hours. We wake her up twice a day to clean her and to feed her. She has no health problem.”

At that time, I could not imagine such a phase of care-giving. Now I can, but I am not yet ready for it . Simple, perhaps, but I do not want such simplicity. My mother still smiles a lot, especially when I hold her hand. When she opens her eyes, sometimes they are vacant. But at other times, she focuses on me, and I feel she is there and with me, and it makes the day that much nicer for it.

I am hoping she will regain some alertness if we keep trying to engage her…

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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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.

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