Josna Rege

Posts Tagged ‘Alzheimer’s Disease’

498. Remembering Mum on Mother’s Day

In Aging, Family, parenting, reflections, Stories, women & gender, Work on May 9, 2021 at 1:05 pm

                Mum’s bleeding hearts

On this glorious early-May Mother’s Day, I sit in bed with my second cup of tea, thinking of my mother, who passed away three years ago. Though she is still very much with me, I so miss the quality of her active presence in the world—my world. As I contemplate retirement and feel overwhelmed at the very thought of all that must be done to prepare for it, I think of Mum, who plunged into every task and saw it through with determination. She worked so hard to make life for our family easier than it had been for her and her brothers and sisters when they were growing up, and even when she could have sat back and rested on her laurels she couldn’t let go of the lifelong habit of hard work. The house my parents bought at retirement was the biggest one they had ever owned, but Mum never even considered hiring anyone to clean it. She did it all herself until Alzheimer’s Disease prevented her from doing it any longer.

Dad told me a story about Mum from the time when they were first courting. Visiting the flat that he shared with another bachelor, she was shocked at the state of it. She entreated Dad to let her clean it for him, and he eventually acquiesced, although he had some qualms about allowing his girlfriend to do such dirty work. But for Mum, work was never dirty, and cleanliness was next to godliness. Dad said that when she was done he could hardly recognize the flat, sparkling clean; and when his roommate returned he was absolutely astounded.

Mum didn’t limit her cleaning to her boyfriend’s digs, but also took on his washing and ironing. Again, Dad said he made an effort to deter her, but I suspect it was a rather feeble effort, because he loved dressing well, and must have found it hard to maintain his own high standards in that tiny apartment in cold, damp, sunless London. Mum took his shirts away with her and returned them to him spotlessly clean—washed, dried, aired, and ironed.

All this Dad told me in wistful tones, as if he hadn’t fully appreciated all Mum’s hard work through the years. Even as the Alzheimer’s took hold, she continued to try to clean the kitchen, tearing off strip after strip of paper towels and wiping down the countertops with an energy born of the frustration that she was unable to do more. At first Dad, thrifty as both our parents were, was annoyed by the number of paper towels Mum was wasting, until I pointed out to him that she was only trying to hold on to some remaining control in her own kitchen, most of which had been taken away from her. As was always his way, Dad was instantly penitent, and never complained about waste again.

Sadly, it wasn’t long before Mum couldn’t even wipe down the surfaces anymore, turning instead to untangling and smoothing down the fringes on the woven placemats as she sat at the dining-room table. For my part I remembered wistfully how, before Alzheimer’s, she would race to wash all the pots and pans before sitting down to dinner while we entreated her to join us so that we could begin our meal without guilt. She did this because she knew that after the evening meal was over and it was time to relax in the living room, she would instantly fall fast asleep, exhausted, even while her tea was still hot. For Mum was a lifelong early riser, up for hours before the rest of us even stirred in our beds. The only exception was Baby Nikhil, also an early riser in those days. Whenever we were staying over at our parents’ house, Grandma Gladys—or GG—would play with him energetically while I, never a morning person, took my own sweet time to get myself in gear.

Mum, detail from one of Dad’s paintings

So here I am on Mother’s Day, looking out at the garden and contemplating my To Do list. Thanks to dear Andrew I have now breakfasted and had both my morning cups of tea. The bird feeder and bird bath are full, freshly-potted marigolds glowing orange in the courtyard, and sunlight streaming in through all the new Spring greenery. Mum would have loved to sit out on the terrace with me underneath the umbrella, bird-watching or doing the Times crossword. To be honest, though, with the exception of her first cup of coffee at the crack of dawn when her mind was the sharpest and she would whizz through even the hardest crossword in record time, she never sat still until, perhaps, late afternoons in retirement. Then she would join Dad under the umbrella in the back garden, her flower garden in full bloom, enjoying a cold glass of her favorite Miller Lite and, finally, allowing herself to look upon her handiwork and see that it was good. Here’s to you, dear Mum!

NB: Lest you get the impression from the above that Mum was all work and no play, nothing could be further from the truth. She had a passion for life and, ever restless with the status quo, longed to live it more fully than ever. Endlessly interested in people, she tended to make friends with women much younger than herself because she was forward-thinking and young at heart. She adored children and never tired of making up games to play with them. She never stopped teaching or learning either. Mum loved music and dancing, as I have written in other posts. And she never could resist a Kit-Kat.

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449. The Farthest Field

In Aging, Books, Childhood, Family, Music, Nature, parenting, people, reflections, Stories, Words & phrases on February 15, 2020 at 11:47 am

painting by Jim Turner

As I advance farther and farther into the territory of old age, I notice that time is doing funny things. It’s a truism that time speeds up as one gets older, and so far I must report that it appears to be true. (It’s mid-February already; weren’t we just marking New Year’s Eve? My friend’s granddaughter is ten already? Surely not; didn’t we only just celebrate her third birthday?) The events that follow inexorably upon each other—daily, weekly, semester after semester, annually—seem to be scrolling by until they are almost a blur. I used to be pretty good at anticipating, preparing for, and keeping track of them; now I can barely nod to them as they gallop by, while—unless I exert a tremendous effort of will—I am increasingly a bystander rather than a participant.

It’s not just the pace of life that I notice, but also the problem of desire. Increasingly, if I miss a meeting or a deadline, I find that I don’t much care. As Arundhati Roy wrote (in a very different context) of her main character Rahel (at the “viable-dieable” age of 31) in The God of Small Things: “Nothing much mattered. And the less it mattered, the less it mattered.” Am I letting myself go, as my mother would have put it? Succumbing to inertia, as my father warned me when he was the age I am now? (See TMA 19, Lively Up Yourself.) Is this a phenomenon I am simply to stand back and observe, or do I force myself to jump back into the fray?

The thing is, I do care, deeply, and have never stopped caring, about the people whom I love and the struggles and injustices in this world. I want to keep acting in it until I can do so no longer. But, as John Prine wrote in the voice of an old man in Hello in There, “all the news just repeats itself like some forgotten dream”(see TMA 333).  As I watch history repeating itself I’m still trying to sound a warning note, but increasingly allowing myself to let younger people take the lead.

I realize that the mere fact of getting older doesn’t let me off the hook. I have responsibility for those around me. Roy’s “the less it mattered, the less it mattered” is a real thing, and at the core a symptom of depression, as indeed it was in Rahel’s case. Surfacing from those depths requires more than an  act of will. But there’s another responsibility I have now that I am officially an Elder, and that is to step back and take a long view of the frenetically unspooling action of the world. As long as I am alive I can’t stop acting, and I certainly can’t stop the world, but it is high time that I gave as much time and attention to reflecting upon action, most especially my own.

If I can’t stop the world, I can endeavor to slow it down, at least long enough to hold it for a moment in my mind’s eye. Looking back at the events of the past month, decade, fifty years—for February 6th marked the 50th anniversary of my first arrival in this country—not with nostalgia, but with as much honesty and insight as I can muster—I must try to learn something from it all while I still can. Last month I found a bag full of diaries, including my schoolgirl diaries from 1966 and 1968, and hardly dared read through them in my jaded hindsight, to look with compassion on the mostly-clueless young me, emoting and reacting and taking so much for granted. I made myself do it, though, and among the typically adolescent banalities, found threads that carry forward to the person I still recognize today, in all her flaws and fierceness. I see now why people of a certain age write their memoirs, not so much for others—although no doubt they hope to be able to pass on something that they have learned—but for themselves, as they try to make sense of all that has unfolded in their time and their place within it.

Two more observations before I put the laptop away, dress, and plunge into this busy Saturday.

I want to note the distinction between the words farther and further. In the United States, according to Merriam-Webster, “farther” tends to refer to physical distance while “further” more often refers to metaphorical distance. “Further” also means “moreover” or “additional”, depending on whether it is used as an adverb or a verb. But Merriam-Webster further observes that the two words have been used interchangeably for a long time, and the distinction is by no means a clear-cut one. While The Cambridge Dictionary (U.K.) makes similar but more nuanced distinctions between farther and further, it ultimately maintains their interchangeability. In its book, “farther” is used to refer not just to distance (for which it says the more common word is “further”) but to distance away from the speaker. Since we experience the past and project the future in terms of their distance from ourselves, “farther” is the operative word here, for my purposes. But why does this matter here?

Roger, the beloved founder of RUSH, the singing group I participate in every month, recently passed away, to our abiding sadness. In the last couple of years he had introduced us to a number of songs that looked ahead to the as-yet-uncharted territory of death and dying, and retrospectively I see that he had been preparing himself and us all to face what was to come with courage, and even with gladness. One of those songs was The Farthest Field, which I now sing with gratitude for his farsightedness. Death is not metaphorical.

And a memory of my dear mother, who died nearly two years ago. As the Alzheimer’s advanced, that dreadful disease that progressively blocked her cognitive pathways and ultimately took away her voice, all time seemed to her to fold, like a closing concertina, into the present. Of course I can’t know exactly how she experienced it, but one Christmas season found her taking out all the old cards sent over the years by her distant family members and lovingly displaying her favorites all over the house. Our first reaction was one of annoyance: why was Mum taking out all these old cards, and mixing them up with the new ones that were starting to arrive? How would we be able to tell who had sent us cards this year? But upon reflection I thought differently: Mum had always treasured the Christmas cards sent to us by her family in England, no matter where in the world we were living. Now, as the significance of any time of year— indeed, of Time itself—was fading rapidly, what mattered to her what the joy which welled up in her as she handled each of these precious expressions of love. Increasingly, I too find myself sharing Mum’s feelings about these cards. It is February, and I have put away the cards with overtly Christmassy images on them, but have left some of the others up, simply because they are beautiful and continue to bring me joy.

Oh my dear friends/I truly love/to hear your voices
Lifted up in radiant song;
Though through the years/we all have made/ our separate choices
We’ve ended here where we belong.

There are further adventures ahead to which I look forward with anticipation and, of course, with some quickening of the heart. As the songs tell us, this path is each of ours alone but also, that we are all on the journey together, and I take heart from that fellowship. Until Time folds up like a concertina for me I will make the effort to stay engaged, but must increasingly take time out to pause and reflect on what it all means and how far I have come.

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447. Christmas is Coming

In Aging, Britain, Family, Music, seasons, Stories on December 11, 2019 at 1:18 pm

Christmas is coming, the geese are getting fat,
Please to put a penny in an old man’s hat;
If you haven’t got a penny a ha’penny will do,
If you haven’t got a ha’penny, God bless you.

Whether or not one celebrates Christmas, the season comes around every year without asking for permission and there ain’t nothing anyone can do to fend it off. It doesn’t come quietly, but bold as brass, with all the attendant noise and paraphernalia of a traveling circus. And all over again one sighs, acquiesces, and gets with the program.

For academics in my field it’s the worst time of year bar none, with end-of-term grading followed in short order by back-to-back conferences as often as not in a distant city (for me Seattle, Washington this year), followed immediately by the start of the Spring semester which is always much more hectic than the one before. Such are my gloomy and self-involved thoughts in the fall semester’s last week of classes with the holiday season knock-knock-knocking at the door.

2019 Christmas Lights, Regent Street, London’s West End (photo: Jeff Moore)

In England, or at least in the England I know, which is, admittedly, a Ghost of Christmas Past, one can’t help but get into the spirit this time of year. The Christmas lights have come on in London’s West End (in my time the magic date was December the 6th; now, ridiculously, earlier and earlier in November), the children have written their lists and sent them off to Father Christmas, the parties at work ensure that no work gets done, Auntie Bette’s Dundee cake  has been made weeks ago and is richly beckoning in its special tin. But most of all, no matter where we are in the world, Mum is in Christmas mode.

Whether we were children in India or teenagers in the United States. as Christmas approached that magical feeling would descend upon our home. Cards would arrive from our far-flung friends and family, each one lovingly opened, pored over, and displayed to best advantage, family cards given pride of place. Mum was not much of a baker the rest of the year, but now delicious aromas would waft through the house as she made her legendary chicken pies with the flakiest of crusts, mince pies (in later years made with hard-to-find vegetarian mincemeat tracked down especially for Andrew), and for Christmas Eve, shortbread and sausage rolls. Most thrilling of all, the house would fill with whispers and secret places and rustlings of wrapping papers, as Mum would come home late, laden with bags and boxes from after-work shopping, and slip into her bedroom. She would shop for every single child in our lives, no matter how far away, painstakingly picking out something she knew that they would delight in (never anything merely useful), wrap, package, and rush to get it to the post office before the last safe mailing date for Christmas delivery. For picky people like me, who highmindedly pooh-poohed commercialism but in actual fact had rather expensive tastes, she would fret over getting just the right thing, often driving to the mall more than once to take it back and exchange it for something closer to perfect.

Teenagers are the hardest people to shop for. Not that they don’t want things—they absolutely do, no matter how much they may sneer and turn their noses up at the efforts of the clueless oldsters—but they want exactly what they want and will take no substitutes. Mum knew this, and was determined that no child of hers (and this was very broadly defined) would open a Christmas present and be disappointed; so she annoyed the rest of us to no end as she dashed back and forth to the shops, fussing and fretting over whether a particular pair of jeans, say, was the right brand and model and size and cut, to be sure that the Landlubber low-rise corduroys or Levi 501s or shrink-to-fits would fulfill our hearts’ desires on Christmas Morning.

All Mum’s racing about as Christmas approached had at its core what it had meant to her as a child who grew up in poverty but with the riches of a big family, and as someone who had left her childhood home and family after marriage, never returning to live there again for any length of time. She was determined to recreate that spirit for us in our home, and went on doing so as long as she possibly could. It could be infuriating for us as adults to have to try to live up to her impossibly high standards for the season. But the externals, though they seemed to be desperately important to her, didn’t in fact mean a damn thing. It was the Christmas Spirit she was rekindling, it was the loving connections with distant family and friends she was maintaining, it was everything she held dear that she was honoring, and, to her mind, it was what would keep our family strong in a strange land.

Now that Mum is no longer with us in person, it’s down to me whether or how I choose to celebrate the season, which will surely come and go whether I enter into it or not. All the rest of life’s commitments—student papers and recommendations, committee work, application deadlines, taxes taxes taxes—are of course there as always, however much I may try to clear them away in time. But so are they for everyone else. Hono(u)ring the season is not about duty, or religious observance (for Mum was secular to the core), or keeping up with the Joneses; it is about opening up your heart and your home and making room for who and what matters most to you. Dare I say it: Christmas is about love and hope springing eternal. At the darkest time of the year comes a shift, invisible but no less real, and we, in the northern hemisphere at least, begin moving toward the light again. So all over the world around this time of year we humans celebrate new life, the hope for redemption, even in the mess we’ve made of this beautiful planet we’re privileged to inhabit for a time.

For Dad, Christmas wasn’t Christmas until we had all watched Dickens’ A Christmas Carol, the 1984 version starring George C. Scott as Ebenezer Scrooge. No matter how many times he’d seen it before he would get misty-eyed at Scrooge’s awakening in the proper spirit on Christmas Morning. He especially approved of the moment when Scrooge instructed (and liberally tipped) the street urchin to buy the biggest goose hanging in the butcher’s window and deliver it to Bob Cratchit’s. Because for Dad, besides indulging Mum in celebrating it as she saw fit, the Christmas spirit meant Giving. Spend as much as you want, Darling, was his silent message to Mum as she raced about, perennially unsatisfied, because perfection is not something that clicks its heels on command; one can only do one’s best to prepare for it, and hope that it will come.

So here I am. Now I need only please myself. I don’t believe in wallowing in nostalgia, but certain things mean what they mean to me. Probably the carol that best embodied both Mum and Dad’s idea of Christmas was Good King Wenceslas (sung here by The Irish Rovers). When we sang it on Christmas Eve, we women would sing the page’s part and the men the King’s. Dad the inveterate meat-eater always delighted in booming out, “Bring me flesh and bring me wine,” as the King commanded his page to prepare a feast for the poor man. Mum’s favorite part was the moral at the end, although she disregarded the religious part of it:

Therefore Christian men be sure
Wealth or rank possessing,
Ye who now will bless the poor
Shall yourselves find blessing.

One year, when Mum’s Alzheimer’s Disease no longer permitted her to prepare for Christmas as she had done all her life, we went to the Pelham Library for their annual holiday tea, English Mummers’ play (complete with fighting the Saracen, which always makes me wince), and Christmas caroling. She could still read then, albeit with difficulty, and joined in, clutching the song sheet in her hands. When we got to “Good King Wenceslas,” she welcomed it like an old friend and sang along heartily.

After those closing lines she turned and looked at me, as if for affirmation: “That’s good, isn’t it?” My heart melted. “Yes Mum, it certainly is.”

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273. Everyday Use

In Books, Family, health, Inter/Transnational, Music, people, Stories, Words & phrases on May 8, 2014 at 12:22 pm

P1020924

Sorting through the dishes at our parents’ house one day, my sister Sally suggested that we take out the bone china teacups and saucers from the dining room sideboard and put them into everyday use. What were we saving them for, she asked with some exasperation, why not enjoy them? Exceedingly rare nowadays were the bountiful dinner parties that Mum and Dad used to host, when, after the feast, the bringing out of the tea and coffee cups would be met with oohs and ahs of appreciation, and a leisurely evening of animated conversation (okay, argument too) would unfold. But the china was still there: why not bring its artistry and color into our lives every day? So we did, and now they bring us—and my mother especially—beauty and pleasure on an everyday basis.

Everyday_Use_(Alice_Walker_short_story)Sally’s suggestion brings to mind Alice Walker’s early and much-anthologized short story, Everyday Use, in which two sisters have very different relationships to two old family quilts, pieced together by their grandmother from scraps of old clothes, and then finished by their mother and the sister who never got a higher education and was still living at home. To the educated city sister, the quilts are part of their African heritage, to be preserved as cultural artifacts, where, for the sister who is a homebody, the quilts, while equally precious, will be put into everyday use after her marriage.

my best china

my best china

Thinking about my own use of things that have special meaning to me, I find that it moves back and forth between the views of the two sisters in Walker’s story. My treasured “best china,” from which I derive great pleasure, is a near-complete set of Royal Jackson bone china that belonged to our opposite neighbor’s late mother, and that I bought from him at a yard sale. I bring it out on holidays and at family gatherings, along with a particular silver-grey linen tablecloth that sets it off perfectly.

My everyday china

My everyday china

My everyday china is a sturdy set of blue-and-white dinner plates, with a number of more-or-less matching saucers, bowls, and side plates, which has little market value, but which, if truth be told, I like as much as the best china and furthermore, enjoy on a daily basis. There is value is saving certain precious pieces, especially family heirlooms, for special occasions, and in preserving them carefully so as to be able to pass them on; but there is also value in using them regularly so as to fully appreciate their beauty as it was meant to be experienced—in use.

Another point comes to mind, that certain items give us that special thrill precisely because they are not in everyday use. Once, years ago when I was frying puris, my father quoted a Marathi saying in this regard, one that I do not know in the original but whose gist is that chapattis are like a wife while puris are like a mistress. That is to say, chapattis are plain, nutritious, daily fare, while puris are rich, delicious, but not to be indulged in too often. (I won’t make any moral or political judgments about this saying, but the psychology of the domestic vs. the erotic is a fascinating one, discussed recently by therapist Esther Perel, who believes that the two can be married.)

(from zestysouthindiankitchen.com)

(from zestysouthindiankitchen.com)

Too often, we take for granted the people and things in our everyday life and forget to treasure them, forgetting that the very fact that they are always there for us is a sign of their deepest love and highest value. Yet, as human beings, we all need respite from the dailiness of our lives; by setting apart certain people, objects, and experiences as special, we invest them with special qualities that bring us back into contact with powerful, deeply buried feelings of our own.

Poori-puri-recipe31

When something becomes a habit, for better or worse, we begin to engage in it every day almost without thinking. This is frequently a desirable thing, as in the case of taking daily exercise, setting aside regular time for meditation or prayer, or maintaining daily routines of work, housekeeping, and personal cleanliness. But it can also be a destructive thing when the habit is an unhealthy one, or precisely because we indulge in it unmindfully, failing to appreciate its meaning and value.

Great song, incorrect spelling of "Every Day"

Great song, incorrect spelling of “Every Day”

This reflection was actually conceived in English-teacherly irritation by the frequent failure of writers to distinguish between every day and everyday, whose difference actually gets to the heart of what I have been talking about here. When we use something “every day,” we mean just that: that it is in daily use; there is no value judgment being made. When we speak of an “everyday” occurrence, we are referring either to its dailiness or to its ordinariness. In the two-word phrase, “every” is an adjective that qualifies “day.” For instance, we might do aerobic exercise every day, every other day, or every third day. It’s also an adverbial phrase in that it qualifies an action, such as walking or eating. “Everyday” as one word is an adjective that qualifies the person, place, or thing that is in daily use. It depends on our attitude toward it whether the fact that we use it every day relegates it to everyday status, makes it commonplace. And again, it depends on our attitude toward the commonplace whether we designate it more or less value by virtue of its everyday presence in our lives. In Buddy Holly’s song, Everyday is spelled incorrectly as one word when it should be two, but we forgive him for the error because he’s Buddy Holly, because it’s a great song, and because it conveys beautifully the feeling of being newly in love, full of anticipation and longing for the beloved to reciprocate (and long before that love becomes an everyday thing).

I feel that the very fact that our mother, who, sadly, has Alzheimer’s Disease, now uses her best china on an everyday basis is preserving and enhancing her cognitive faculties as well as her pleasure in life. Every day is a new day, and every day she enjoys the beautiful china anew. A touch of its special-ness still lingers, too, and perhaps its associations with many happy occasions in the past. For her, and, taking her cue, for me too, everyday use does not render it ordinary; on the contrary, it fills us with pleasure every day as we repeat the rituals of daily life, and reminds us to treasure their beauty—indeed, their holiness.

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