Be With E-Book

Mike Barnes

• Herausgeber: Myriad Editions
• Kategorie: Ratgeber
• Sprache: Englisch
• Veröffentlichungsjahr: 2019

Seitenzahl: 116

Beschreibung

Poet Mike Barnes has spent years caring for his mother, Mary, through the stages of moderate, severe, very severe and late-stage Alzheimer's. In an eloquent series of letters, addressed to an anonymous long-term dementia carer, he transforms his own increasingly challenging experience into a wellspring of clarity and understanding, support and solace.This is no ordinary practical care guide. Using bite-sized paragraphs perfectly designed for harried carers to dip into, Barnes tells a compelling personal story that unfolds a side of dementia almost entirely missing from public discussion:'All people with dementia, and some of them strikingly, show depths of sensitive awareness, resilience rising to heroism, and a capacity for joyful relatedness.'Calming and contemplative yet fiercely alive, this consoling, humane and surprisingly uplifting book balances candour about the devastations of dementia with inspiring insights into its paradoxical and often uncanny enhancements of life, the ways in which it sometimes calls forth capacities long-buried by the defences of full cognition.Addressed to carers but relevant and deeply important for us all, Be With encourages us to focus on fellowship and accurate witness: to simply be with who, and what, is actually before us.

Leseprobe

Praise for Be With

‘My heart lodged in my throat and my eyes stayed glassy… It’s a lovely, loving and unflinching work reflecting on an awful, inexorable illness. Physician offices would do well by stocking copies. Mike Barnes shares knowledge (“The truth is, there’s no graceful way to take control of someone’s life away from them”) and he asks questions (“How much room in your own heart?”) any care giver must consider. He also asserts his primary insight: “But being with in person trumps all else. It’s the one way of caring most likely to be right, and the least likely to be regretted.”’

— Toronto Star

‘The particulars of Mary’s dementia give this brief book universal appeal. The author effectively humanizes himself as a man who has made errors, who wishes he had done things differently, and who has his own psychological burdens to bear… A book that tells the reader that you are not alone, whoever you are.’

— Kirkus Reviews

‘In their simplicity and even-handed tone, the letters achieve their author’s difficult aim: they present as a literary Third Man, a friendly, authoritative voice in the dark that will lead its at-the-end-of-their-tether listeners through to the endgame… Barnes has been moved and amazed by his mother’s courage and effort, how she has learned to be a new person. What really matters, he concludes, is the hardest thing, being there with her. “For every thousand pages describing how living is shattered by this dread disease, there should be at least one page observing how living goes on within it.” Be With has 156 pages of them.’

— Literary Review of Canada

Be With

Letters to a Carer

Mike Barnes

Contents

PraiseTitle PageBe WithAlso by Mike BarnesAbout the AuthorCopyright

Be With

Letters to a Carer

Dear –—

Someone told me that your loved one has been diagnosed with Alzheimer’s.

I was sorry to hear that, and also a little frightened for you both.

~

I feel I know a few things about you, even before we meet.

Already you are busy beyond belief. Stretched thin, getting by on meagre sleeps. You are sad, frightened, troubled, confused. Dark waves of these emotions estrange you at times from your normal life. But you are also energized, adrenalized. You push down the sadness and the fear to be there for your loved one. To be a voice for, an ally, a companion. To help in every way into this dark.

You are on Caregiver Time. It’s like New Parent Time, Student Crunch Time, Double Overtime—all those other stressed and sleepless zones. But Caregiver Time lasts longer. It can last for years. It’s lasted seven years, so far, for me.

That’s why I’m composing these the way I am. In short bits. Bits I have the time to write, bits you might find the time to read. In a waiting room. During a loved one’s nap.

Over takeout coffee in the parking lot.

Messages in bottles.

Uncork on any beach.

~

I also have in mind those packets of dried food people take on long trips into the wilderness. Compact, lightweight nourishment, high in energy and nutrients. Oat bars. Pemmican strips, in olden days.

Pemmican posts?

Read just this. Or, if you like, read several in a row. (It’s strange how the over-busy often look for even more to do, from a need for distraction or from the habit of pure speed.) The result may be the same in either case. Your mind crammed and blurry, you’ll forget what you read and need to read it again. And that will be a satisfaction, I hope. Read just this. Put it in your mind like a single pebble in your pocket. Feel it there—small, hard, irregular, with its own peculiar shape—until you have the time to come back for another.

In an hour, a day, a week. A year.

The bits of news, food, stone will still be there.

~

I’m sending you the news I needed to hear myself. Needed and still need often, ransacking confusions to find a clear way forward.

You see, the need for guidance goes back further than my seven years of active caregiving. Since nine years ago, when my mother, Mary, was diagnosed with Alzheimer’s—and, really, for some years before that, when something-wrong was obvious but hadn’t yet been named—I’ve had need of the items, soft and hard, that I aim to send here.

Soft: fellowship, solace, understanding.

Hard: facts, clarity, direction.

You need accuracy, but you need kindness too. We all do. Accuracy without kindness is too unfeeling to be true. And kindness without accuracy is too unreal to be felt.

~

“Blah blah blah,” Mary says, when stuck in an activity session involving a speaker or storyteller. “Doesn’t like to share the stage,” says Laura, the activity co-ordinator in her current care home. Partly—and yet, no. Mary transfixes, roots visibly, to a voice speaking; grows intent and still as its currents envelop her. The talk can be about anything, as long as it’s just talk. But she has an urchin’s antennae for speech designed to edify or placate her.

Forgive me in advance my blah blah blah.

~

Let’s try to get a timeline, first. It may be the last thing you want right now. I resisted clock-talk for years myself. Even hearing the word—timeline—made me bristle. It belonged to a world of cold quantities that reduced, I felt, individuals with dementia to a kind of grey goo, deteriorating with predictable uniformity as microscopic proteins accumulate in their brains, just as, in that other end-of-the-world scenario, replicating nano-bots turn the particularized universe into mush. Talk of timelines—of stages in the course of a disease—not only equated people with their disease, it gave everyone the same disease. One patient, one disease. That offended me greatly. And was just plain wrong besides. When I meet, as I often do, ten or fifteen people with dementia in a row, they seem as various as any other ten or fifteen people. Maybe they are all moving roughly in the same direction—like caribou moving across a plain from east to west, say, on various meandering paths, some pausing, some even reversing course, but all, after a time, closer to the setting sun than when they began—but the same sense of a shared trajectory can be felt in a nursery, a school classroom, a company cafeteria, a retirement party. People are people, and people are persons, you realize—unless you don’t.

I still feel that way. With time, however, I see better the overall direction of dementia, its east-to-westness, and even the somewhat distinct (though still messy and overlapping) stages of its passage. I realize, too, that part of the reason I couldn’t see this before was that I was simply overwhelmed. My twenty-hour caregiving days bombarded me with so many urgent particulars, a great many of them brand new and all of them constantly changing, that I simply lost the ability to see beyond getting through this minute, this hour, this day. Self-protectively, I lost my pattern recognition. Now, with things a little quieter, some of it is coming back.

~

One time (early on, forgotten until just this moment), I was sitting in a corridor with another caregiver, a thin, grey-haired woman, telling her of the micro-naps now riddling my days. Micro-comas is more like it. Blacking out for short spells, coming to on the other side. While sitting, while standing. While talking—returning, after sudden dark, a half-sentence or more further on in the conversation. While walking, even—lifting a foot up and putting it down, then noticing I was several steps ahead of where I’d been. Most terribly, while driving. Gripping the wheel, determined to stay alert—and then popping back, eyes still wide open, further down the highway.

It happened without warning, often when I was unaware of being exceptionally tired. (I was never not tired, then.) It was like the gap when a slide projector pushes the current slide out and prepares to push the next slide in. There is a dark interval, which can last for half a second, or be prolonged to a few seconds, or even half a minute or more of oblivion.

This was new to me, and I recounted it with a degree of fascination as well as fright. Perhaps, back then, I was even boasting a little.

The woman sipped her takeout coffee, and said flatly, as of something decided long ago, “You won’t be much help to her if you’re dead.”

~

Mary has moved—I have moved her—four times in seven years. These moves, I see now, map onto the progressive stages of Alzheimer’s as clinically described. From mild to moderate, moderate to severe, severe to very severe, very severe to late stage. During the roughly year and a half she lived in each place (sometimes a little more, sometimes a little less), she would be in between stages, leaving one for the next, and the move would become unavoidable when, for example, the moderate-severe stage became more severe than moderate; or when severe-very severe became mostly the latter. The stages are never neat: they are taking place in a person, with all her quirks and qualities; different parts of the brain are affected to different degrees; she is as subject to the vicissitudes of mood and physical health and events of the day and even weather as the rest of us; and she is fighting hard against dementia’s encroachments—but in broad outline, especially in retrospect, it is possible to make them out.

And they are the stages, leaving room for digressions, by which I’ll organize what I have to tell you.

~

Alzheimer’s’ beginnings are mysterious. What eventually becomes a great river sweeping all before it may start as thin rivulets wetting grass or leaves deep in a forest half a continent away—origins never to be seen or even guessed at.

Depression mixes with it, mimics it (some deep depressions are called for good reason pseudodementias). Stresses of all kinds play their part. Sleep, diet, alcohol and other drugs, exercise, other daily habits. Physical illnesses and the natural slowing of the ageing brain …

All of these retard or accelerate whatever genetic propensity for dementia is there.

Dementia, like any illness, works with what it has, when it has it. A person develops it.

~

The onset of Alzheimer’s is sometimes divided into four subtly overlapping phases. Fittingly, the first of these has no symptoms. Yet it is still a phase. Those rivulets may be rising in the forest.

Mild Alzheimer’s is a rich, and sometimes very long, stage comprising three blended gradations. First, the certain but unmeasurable symptoms of subjective cognitive impairment (SCI). Mary had talked on occasion of feeling “something funny” in her head, and throughout her life, more so in middle years, could be a dreamy, abstracted person, sometimes strangely insistent and repetitious in her stories. Next (and as well), mild cognitive impairment (MCI), measurable on tests but not yet dramatically impacting day-to-day activities. On to (and along with) mild dementia, which does clearly impact daily life and of which all not in denial are aware.

Mary’s personality for as long as I’ve known her (she had me, her first child, at age twenty-nine and she’s ninety-one now)—including dreamy and depressive spells, well camouflaged within an active life, a tendency to drift away into alien regions that was part of an intense imagination—shaded gradually into, merged with, the Alzheimer’s that was diagnosed when she was eighty-two. There was no definite start, at least not visibly. It was as if those many minute streams accumulated until, obviously, a river was flowing and had been for some time.

At her diagnosis, she felt, she said, “relieved”. She had known something was “wrong” with her head for a long time, she said, and it was a relief to finally have it named.

It wasn’t her only reaction; typically, she shared only the positive. In an abandoned journal that I found years later in a drawer, she marked that day with just two words.

Dear God

When her husband of sixty years, Bill, my father, died of lung cancer in August 2011, I had been her Power of Attorney for several months, and she was already well along dementia’s passage, in the moderate phase that made living alone impossible and made living with others subject to special conditions.

~

I’m saying much more than I planned to. I’m sorry—I can feel your impatience as if by telepathy. Please remember that you can spot-read this in any direction, in any amount. You can, if you dare, practise sortilege, or bibliomancy, by consulting these entries at random.

There’s one more thing I want to say at the outset. To set the tone, to state my view of things unequivocally. And to establish something that it’s best you hear now, nearer to the start of caregiving—though surely you will need to fight your own way to a belief in it.

It will take a few more entries, I expect, and then I think I can progress with fewer delays.

~

Plainly, so it can’t be missed:

All people with dementia, and some of them strikingly, show depths of sensitive awareness, resilience rising to heroism and a capa city for joyful relatedness that is almost totally missing from public discussions of their condition.

~

I could show you a hundred instances of what I mean. Here is one:

It is the morning after I’d finally agreed, after many tense discussions and postponements, to move Mary into a room on the locked ward of the facility she was living in. (This is years up ahead in her story, though still years from its end.) I’d stayed with her until she fell asleep, very late, and returned early with two of the mocha frappuccinos we liked to drink together. Dark circles ring Mary’s eyes. When I ask if she slept well, she says, “Oh yes! Very!” Her mood is bright. Mine is glum at best. Space on the locked floor is tight, this room more crammed than her previous one. I wonder what might be added to the storage locker. Thelast room. Last but one, I think. What snares dismay particularly is the two green dumpsters below her window, one floor down. A warm