Some days are good

This is an update to my previous post regarding my mother’s condition; after a two-month-long deterioration, my mother stabilized, and then began showing awareness of her surroundings again, and responding to us on some days.

As anyone who has lived with a dementia patient knows, there are good days, and there are bad days. Before March, while my mother was generally inactive and not talking, there were days when she’d nod, smile, and say a few words. She would clasp my hand and kiss it.  She smiled.  Once in a while, she’d surprise us with a full sentence that made sense. Such good moments were what brightened the caregiving and brought smiles to our lives.

Those good moments reduced and then vanished around March this year.

My mother stopped uttering even a Yes or No and she no longer nodded or shook her head or clasped my hand. She barely opened her eyes when fed, and often refused to open her mouth. She did not wince or show any pain reaction. She did not react even when the technician jabbed her for a blood sample. It usually takes multiple jabs to take out a sample from her, and they have to poke around the needle in her flesh in a way that seems like sheer torture, but she slept through that entire process. The test reports were within acceptable ranges, and the doctor could not find any problem when he examined her. But she was fading, and we could not reach her as she sank into some world of her own.

We continued to talk to her, hold her hand, try and coax her, but at times it felt as if we were intruding, because it was not clear whether she preferred our presence or wanted to be left to her silence. We also kept trying to tweak things in ways we thought she would be more comfortable–wiping off her sweat, making her drink ORS when it seemed hot, and so on–but it was mainly guesswork, because she was not complaining or wincing or showing any happiness or unhappiness.

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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 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.
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Over years of caregiving…

Time for self-centeredness. Today is about I, me, myself…

I’ve often written about how I have tried to care for my mother, made mistakes at times, succeeded at times, made changes in my attitudes and in the environment around her and so on. I’ve talked about my involvement in dementia awareness and helping caregivers and all that.

Today, I’m talking about how (and if) these last several years have changed me. I’m looking back at the journey I started without knowing twelve years ago, then began resenting because it was a can’t-get-off-this-ride journey, and have finally slumped comfortably into (for the time being).
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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…
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love, without the trapping of a gift

A very interesting part of sharing experiences through blogging is that I get to connect with other caregivers, many of whom I would never have met otherwise.  On one of my recent blog posts, for example, I got a comment from Lori, who blogs about her own experiences as a caregiver at Alzheimer’s Speaks, and, while going through that blog, I found my way to a few other interesting blogs, such as the blog of Laura Bramly. They have recently been sharing their perspective on giving gifts for dementia patients.

Reading their blogs made me think of how my own gift-giving habits have changed over the years, with respect to my mother.

When I was young and in school, I would save my pocket money to buy a gift for my mother’s birthday. The gift was always a cotton sari that I would choose myself, and often it cost me the pocket-money of two or three months. I used to feel very great when she wore the sari I had presented to her (and told people that the sari was a gift from her daughter).

Once I began earning, and was living away from home, the occasion for the gift-giving became my visits home. It was still saris, sometimes more than one, handpicked to match her tastes. But sometimes, instead of a sari, I would buy her an embroidered shawl, or a special type of handbag.
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A new phase of caregiving: a bedridden mother

I find myself strangely shy as I try to act out on my intention to blog every day through this month; as part of my attempt, I am wondering how I managed it last year, and I am surprised to find how very different my life is now.

My overriding mindshare, both last year and now, is caregiving, but the texture has changed completely.

Last year, I was busy accepting that dementia had altered my mother’s way of talking and responding, and that the changes in her memory and abilities (and the frustration they caused) were the main reason her behavior required a new paradigm of interaction. My focus was two-fold:  one, creating a method of interacting that took her reality into account; two, introducing whatever was possible in her days to stimulate her mentally within the bounds of her abilities, while making sure she had enough ‘successes’ to enthuse her to keep doing her best.

Over the year, on the plus side, we found that the behavior problems most caregivers face (and that I faced earlier), vanished and everyone was, consequently, more content and less stressed.

However, dementia is a progressive disease without a cure, and progress it will, whatever you do. The pace may vary, and the specific of the sequence of deterioration may vary, but the direction is the same: downhill.

And so, by the end of the year, my mother reached a completely bed-ridden state. She barely talks, and while we are trying to see whether any medical/ nursing approach can help, the overall thrust of caregiving has changed. While earlier, too, we were focused on making sure she is comfortable and feels secure and loved, this is now a major part of the approach. That, and trying to ensure we understand every clue about what she wants or whether she is in any discomfort.

For example, while feeding her (food has to be spooned in her mouth), we have to make sure she is swallowing it properly, and sense whether she wants to eat more or not (check facial expression, check burps, check that turning away of the face or the opening of the mouth).  She does not tell us when she is cold, thirsty, or in pain — again, body language is all we have.  She sometimes nods or shakes her head if asked very simple questions, but most of the time, she looks somewhat blank. For bulk of the day, she sleeps.

Yet, despite this significant deterioration, this extreme helplessness, she responds to affection, and is is both easy and fulfilling to given her the emotional company she wants. Sometimes I find myself just holding her hand, not speaking, for several minutes, without thinking (as I would have earlier, and as an observer may feel) that I am ‘wasting’ my time. She cannot eat her food herself, but when I put my hand in hers, she grasps it back with a strong grip and sometimes even pulls my hand to touch her lips, as if for a kiss.

I have not fully re-adjusted to this new phase of her dementia, but it is not as difficult as I thought it would be. Possibly, she is being productive in a meaningful way, because all of us around her find ourselves more able to give and accept love, at least while we are with 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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ups and downs as part of caregiving fun

At the toy shop, as I looked around for board games I could play with my mother, the shopkeeper was most helpful. Chess? Scrabble? Err…no. Ludo…hmmm… I couldn’t figure how I’d explain the rules to my mother…so, thank you, but no.

The game had to be simple enough in terms of its rules and visually, and it should work well with two players. Finally, I got us a Snake and Ladders.

My misgivings began soon after I left the shop. Snakes and Ladders is not exactly a high-skill game (a plus), and progress depends on luck (could that be a minus?). I could end up winning, or I would have to be very careful not to win. She may find the sinuous snakes alarming if her token had to slide down to a lower square.
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An hour at a time: Fulfilling moments in dementia caregiving

A day at a time, an hour at a time, one task at a time–that sounds like a mantra for living in the present moment. It is also the mantra for handling caregiving. And even more, a mantra for remembering how caregiving can enrich by finding in the span of the day one hour, even one hour, of an activity that can be fun.

A few months ago, I thought ‘playing’ was for kids, but then I realized playing is also a way of improving (or at least retaining) cognitive skills, so I got my mother a few games. Simple ones, colorful ones.

My aim was to use games to instruct her and help her retain her cognitive abilities. Each time she fumbled over a wrong choice, or took “too much” time, I felt impatient. When, on a particular day, she was unable to finish a game she had managed earlier, I felt disheartened, and so did she. When a deterioration continued across days, I despaired.

But one day, instead of focusing on her progress, I watched her expression–the intense attempt at concentration, the fleeting smile of delight, the puzzlement–and that day, I changed my focus of this game-playing activity. I began seeing it as something that could help her feel cheerful and good about herself, and well, why not? She has enough dealt out to her by life that works the other way. A day for her is full of so many small failures–failures to remember words, phrases, failures to ‘tell’ in time and cause smelly accidents, failures to even remember her name. If she can smile because she can pieces together a simple jigsaw, that was great.

Over the last few months, I have slowly got her a set of games she likes. It amazes and delights me to see how she manages to enjoy the same game day after day, with that same sense of wide-eyed wonder.

Like today. We used a jar of play-doh and shape-cutters.We made stars, and flowers and butterflies and elephants, and I found myself enjoying them alongside her, not just watching her. I don’t think I have shared any fun activity with her for years now. Strange it needed her to get dementia for us to be together for one judgment-free relaxed hour a day.

Some activities can be fun, you know, if you don’t get too serious about winning and being correct and improving and learning. They can be full of laughter that bubbles inside the heart, and colors. Not every day, maybe. Not every activity. But some, sometimes.  And that is a great starting point.

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