Keeping her happy: Challenges of late-stage dementia care

My mother has slipped down some more on the incline of deterioration in her late-stage dementia, a slipping so gradual it is difficult to register it as it happens. But it was just two months ago that she enjoyed the story I was telling her every day (I blogged about it here: Enjoying fun time with my mother) , and then the frequency tapered slowly, and now it has been several days since she indicated she’d like to hear the story. She sleeps most of the time, often not opening her eyes even when we feed her.

Around two months ago, when asked a question, my mother sometimes nodded or shook her head, or turning her face away. Once in a while (if the question was very simple, like, “Are you feeling cold?”) she’d even say a word or phrase (Haan) in response while nodding. She would nod vigorously if I asked her whether she wanted me to talk or to tell her a story, but sometimes she’d shake her head to indicate she wanted to rest instead.

We deciphered (hopefully correctly) her choices and her moods by asking simple questions and watching her body language.

When not sleepy, she enjoyed company and people talking to her , though it was often clear she did not fully understand the content of what was being said. For example, I don’t think she understood the details of the story (and it was always the same story), but she understood that someone was telling her a story, and showed her liking for that companionship and affection.

Now, it is increasingly difficult to understand her desires because most of the times, she does not respond (through words or even body language) when asked a question.

After her last round of blood tests and checkup, the doctor told us she is doing well as far as the physical parameters are concerned, and that the minor imbalances (the sort she has often had before) were within acceptable range and not sufficient to explain the change we were seeing. He agreed that she is declining in terms of her responding. “What can we do?” I asked. He explained that such gradual deterioration was natural given her dementia, and there was nothing to be treated as such. “Keep her happy,” he said.

I don’t think we human kind are very good at being happy. Or keeping others happy.

If I look around me, it seems this is one area where most of us fail often enough. New age articles talk of the quest for happiness using various parameters. Happiness, apparently, is a state of mind, and we are responsible for our own happiness. Then what can we do to “make” someone happy, or “keep” someone happy?

When I sit near my mother, and she is lying with her eyes closed but seems awake, how can I know whether she wants to be left undisturbed or would like me to talk? If I ask her, and she does not respond, is that a “yes” or a “no?” If I talk when she doesn’t want me to, I am intruding on the time and space of someone who cannot get up and walk away, but if I do not talk when she wanted company and variety, I am not giving her what she needs and she has no other way of getting it.

They teach us so many subjects in school, but they never teach us about happiness. We are given skills in various subjects on the premise that they will enable us to earn; we are taught how to “appreciate” art and music, and even, in some places, how to be creative. But being happy? It is assumed that this, the most important thing for most people, will come automaticallly.  It doesn’t.

Happiness is a state of the mind. What, then, is happiness to someone whose mind is betraying her? Can she make herself happy, or even know when she is happy? How well can someone else help her? These questions circle in my mind without answers.

This is one of the trickiest things while looking after someone with dementia, especially late dementia–trying to interpret someone who is not communicating, trying to decide what she needs or wants when she says nothing, indicates nothing. Trying to know how she feels about it all.

I think I shall settle down to trying to make her feel content. Peaceful. If she looks calm, that means she has an environment where things are going well enough for her and she may feel happy. If she winces or frowns, something needs to be done. If her contentment comes from holding hands and hearing stories, that is good; if it comes from sleeping off all day, uninterrupted, maybe that is what she needs now…

I wish I knew…

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.

8 Responses to Keeping her happy: Challenges of late-stage dementia care

  1. Fish says:

    It’s strange to think how ‘happiness’ is the most sought out after in every culture, but remains elusive. Perhaps because there is no one single definition of happiness. When I was a child, I always imagined that stability brings about happiness, but that is only people trying to protect themselves.

    Even though I have no first-experience of caregiving, but I can imagine how tough it is to care for someone who is unable to communicate their feelings directly, easily..

  2. austere says:

    Playing it by the ear, Swapna… I think you’re doing more than fine.
    Just your being there– and she knows that.

    http://www.happinessinthisworld.com/ : if and when you have the time, though I’d agree I wish this were taught at school.

  3. Lalitha says:

    Dear Swapna

    This is Devarajan aunty.

    After a long time I visited your blog today. I am so sorry that mom had a set back recently. I can assure you that mom is one of the most lucky mothers to have a daughter like you. The untiring nature of your care-giving is something humongous! Never for one moment doubt yourself on that point.

    Please take care of yourself. That is what amma would like you to do.

    aunty

  4. Pingback: Two years down the line: Care for a bedridden mother with dementia « Swapna writes…

  5. Pingback: Real Stories from Real Life Family Caregivers

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