going down, a day at a time

Looking back on last year’s July/ August/ September, I find myself wondering why I did not notice my mother’s steady deterioration, and the only reason I can get is that I did not want to see the reality.

For example, over those months, my mother’s walking worsened gradually, such that by late September, she was not really walking–she was being dragged along as we ‘walked’ her to the toilet.

The problem was, she could not remember that she was supposed to lift her legs and place them on the floor again for each step. Sometimes she would not lift any leg, just gape at us when we asked her to. Sometimes she would lift the left leg, take a step, and then lift the same leg again.  I would keep talking to her, keep cueing her by patting first the left leg, then the right. There was no improvement, and then came the day when it took two persons to make her ‘walk’ to the bathroom, and we accepted the fact that she was not walking.

I had been told by a caregiver whose mother had Alzheimer’s, that one day, her mother just stopped walking. Another caregiver, again with a mother with dementia, said something similar. I remember that day when I sat next to my mother, in a state of shock, finally registering that my mother had stopped walking – probably because she forgot how to.

It took another month for me to understand that her ‘forgetting how to walk’ was probably not easy to reverse. When I tried to study the act of walking from the perspective of someone whose brain is affected by disease, I began to appreciate  how very complex the activity of walking is, the multiplicity of tasks it involves, and the degree of coordination it requires. Strange how much we take for granted regarding what we do with our bodies and minds.

My mother has not walked a step since October beginning, and is on the bed all the time, except for the times we lift her and place her on a chair for variety.

Now I am happy enough if she wiggles her toes when I ask her to. How standards change 🙂

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, 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: https://swapnawrites.wordpress.com/about-contact/

4 Responses to going down, a day at a time

  1. austere says:

    Or is it muscular weakness? Not only memory centers– other parts of the brain are degrading too, right?

    Maybe if you could use a wheelchair and take her to your garden I think somewhere it would register.

  2. swapnawrites says:

    Yup, we take her to the balcony in a wheelchair sometimes. She looks around a bit, then, a minute later, she is fast asleep 🙂

    I think everything is more of an overload for her now, so she can take life only in very small bites at a time. Of course, we are still trying to figure out which ‘bites’ of life tire her too much, and which ones she finds tasty…

  3. Rita says:

    How did you deal with refusal to take bath everyday?
    What can a care giver do to make bath taking a daily routine and a pleasant one?


    • Hi Rita,
      Yes, it can be tough persuading someone to have a bath – the person may be uncomfortable for many reasons, for example , the person may feel vulnerable and out of control because she has to take off her clothes sand someone else is there soaping her and pouring water etc., or the discomfort may be about the temperature of water or a draft of air, or the person may not see the need of a bath.
      Understanding the specific nature of discomfort for your mother is useful to see what would be more effective in persuading her.
      In general, though, things people do to make taking a bath more acceptable include making the bath seem matter-of-fact or pleasant when suggesting a bath (saying fresh clothes will feel nice rather than arguing), ensuring the bathroom is free from bad smells or draft of air and the temperature of the water is right, ensuring the person does not feel lack of dignity (placing towels on the torso and private parts), avoiding anything that seems intimidating (make eye-to-eye contact from the same level rather than tower over her and bend over) encouraging the person to soap themselves if they can, and playing soft music.
      Basically, see if you can understand why she is reluctant, and work at removing the reasons for that while also giving her positive reasons to agree.
      As such, reluctance to have a bath is a common problem and tips are available at multiple places for this – my website also has a page on helping with daily activities and includes a section on bathing: https://dementiacarenotes.in/caregivers/toolkit/adl/ Best of luck!

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