I find her hunched in her chair
a wizened crow
wrapped in a food-smeared bib
porridge drying on her mouth and chin.
Her hands are bony and translucent
and her nails curl back on themselves
She does not look at me
does not turn her head.
She is a prisoner, long despairing of release.
She is a widow, living
at great expense, in abject poverty.
She is a ragged person,
her clothes faded and torn.
She is a mentally handicapped person,
a dispossessed person,
a dying person.
She is my mother.
At my insistence
she is lugged to bed.
I take her bony hand
and find it gentle, pressing mine.
I think about morticians.
In a while –
just days, the doctors say –
a stranger will bathe and paint her,
pinch her face into an expression of peace.
I wash her face, a little at a time,
and pat it dry.
I wipe her eyes and crusted lashes,
“Wiping away the sleeps,” she used to say,
early in the morning,
when the sunshine wakened me.
I wipe the milk and porridge from her lips.
“Wiping away the stickies,” she used to say
as I protested, anxious to be free.
I find scissors and an emery board.
Cautiously I trim and file her nails.
Her skinny hand holds mine.
It is April.
Under the window of the nursing home
cherry trees are bright with blossom.
Loveliest of trees…
I arrive to find that the personal care worker
has set her little radio to blaring rap at her –
angry and obscene.
I put on my daughter’s choir tape,
call it her granddaughter’s record.
“Do you remember Stephanie?”
but she listens
and I remind her of the words.
Arise my love
and come away…
for the rain is over and gone
and the flowers appear on the earth…
The room has an insistent stench.
On the window sill
I build a garden,
tulip, crocus, hyacinth,
anything with fragrance.
Have to avoid daffodils and narcissus.
People here eat flowers.
Since I arrived
she has had her eyes closed.
But today as I leave the room
I notice her face in the mirror,
eyes opening furtively
when she knows she is alone.
She is curled, fetal, rigid.
Kyphosis the doctor calls it,
and I have guessed the rigidity is Parkinson’s.
But today when I lay her gently on the pillow
her head falls backwards.
Have I snapped a vertebra I wonder?
She can lie back,
She can open her eyes.
I thought they were blind,
blank, certainly, and dull.
But now, she sees me,
part of me, sees something,
and her eyes grow suddenly bright,
I will not let them lift her anymore.
They do not mean to be unkind
but they move abruptly,
and they arrange her, like a cushion.
When they come at night
they speak of turning, changing, washing.
They speak of diapers.
They say, “She pooed.”
Each time the shock is new. And she must ask,
Where am I? What am I? What have I become?
But if I do not let them touch her
I must confront excrement
confront the sagging, wrinkled private parts,
learn to ignore taboo
learn to ignore smell.
For years I feared this violation,
looking on my mother’s nakedness,
offending against her dignity.
But when I see her hefted like a hog
scrubbed, polished, left to shiver,
what matters is only that
she is person
she is my mother
she is loved.
As in conception, so now in extremis
Love transcends, transforms organicity.
I tell her we have to protect the delicate skin,
make sure the little folds are fresh and clear.
I discover her skin is baby soft.
Homely expressions long buried begin to surface.
I tell her I’ll be done in a jiffy,
she’ll be fresh as a daisy,
clean as a whistle,
in two shakes of a lamb’s tale.
Finding these phrases
is like finding the everyday dishes
from grandmother’s cupboard.
Plain in their day, chipped and overused.
Now, to me, priceless.
I tell her it is a misty, moisty, moonlit night,
tell her she will have sweet dreams,
will sleep like a top, a bug in a rug, a log, a baby.
I will not let them dress her.
She struggles to stay covered,
will not be stripped bare.
I tell her I will help her with her clothes.
Ask her if she could raise her arm a little.
It takes a minute,
a whole minute,
then the arm rises.
We sit on the side of the bed,
Look, they say.
Look at her.
They are thrilled for her and
I try to ignore grammatical agreement,
hoping the Latin scholar in her
can do the same.
But where does she think she is, I wonder?
What does she think she has become?
Yet she tells me, weakly, hoarsely,
“This is so good.”
I am thrilled for her.
Today there is excitement.
My mother’s lifework,
work in education,
to be published again
to be reintroduced in the schools.
I tell her the news,
tell her she has a place
with Maria Montessori
with Anna Gillingham
with Grace Fernald.
I tell her we all worked on this together
remind her of the names she knew and loved.
“You were the heart and soul of it, though,” I say.
For the first time, she turns and looks at me.
This is my mother.
Not was, is.
She lies on her back
arms crossed on her chest.
The room is filled with flowers.
People speak in quiet tones.
Her hair is silver and wavy.
I have painted her nails and mine
a pale apricot.
We are listening to Schubert,
Ave Maria, though neither of us is Catholic.
Her father was a singer.
I wonder, bass, or baritone?
Does this make her think of him?
She listens with attention.
Schubert’s Ave omits the hour of our death.
So for the moment do we.
Then I have qualms.
We have music, flowers, hushed voices
(She is not deaf.
I will not let them yell at her.)
She lies on her back
arms crossed on her chest.
Just what have we created here?
A living grave? A gate of heaven?
Or is this heaven itself?
Is this the only heaven?
I see no ladder, no angels
but she is smiling.
Surely the Lord is in this place?
Water brings back memories.
The sound and the feel of it.
I let her splash her feet in a tub of it
and wrap them with a towel,
remembering to dry between the toes.
I resist the temptation to repeat
the rhyme about the little piggies.
The rhyme might make her smile,
But she is not the child.
For the first time, though, I understand that rhyme.
toes are five piglets in a row, suckling.
I remind her we are intricately and wonderfully made.
The room is sweet with hyacinth and talcum.
I remember her father’s radio –
the one with the long antenna wrapped around a card.
If you took it outside
and squeezed the antenna tightly
and turned the set to face the right direction
you got a signal
sometimes intelligible for minutes at a time.
I understood, even then,
that the programme was transmitted,
was somewhere in the air
regardless of the primitive reception.
For my mother,
it is the transmitter that lets her down
but she struggles with it
and at times succeeds.
“This is lovely tea,” she says tonight.
“Be sure you get some too.”
I have found a CD of woodland noises
morning and evening,
by Cobourg Creek,
robin, chickadee and loon,
water over stones,
the everyday sounds of summer.
She thinks the sounds are coming through the window
and I do not correct her.
It is the time of the singing of birds…
What does it matter if she knows this is April in Toronto
as long as she knows the song of the robin,
the call of the loon?
At first we prayed aloud.
That is, our dear friend and pastor prayed aloud
and we joined in the amens.
“May we be aware of beauty,” he asked,
“even in unexpected places,”
a petition that had been granted
even before it was made.
“May we entrust our sleeping
loved ones to your keeping
now and in the world to come.”
Answered at times and in part.
But as my mother grew stronger
we grew reticent,
we who admit to prayer
only in formal settings,
or in extremis.
Small wonder we are reticent
about our talks with God.
We rarely speak the heart’s truth
even to one another.
Words of adoration or apology,
words of thanks or of entreaty
catch in our throat
even when they are only addressed
to human kind.
Why, why did I wait
till you could barely hear me
to thank you, Mother, dear one?
And yet I think you understand.
And I do thank you, thus belatedly.
for a lifetime of love
and for these few, last, blest hours
for moments of clarity,
moments of grace.
She is fortunate, in a way.
She cannot quite find her mouth with a spoon,
but she can listen to Schubert with delight.
How much poorer those of us
who eat with knife and fork adroitly
but cannot understand The Trout,
strings and piano, water burbling over stones.
The sore on her back appears volcanic –
cone, crater, lava –
its eruption threatens the bone.
No, this is not heaven.
Still, love redeems organicity.
Whether a gardener’s love of the soil
a child’s love of a pet
a lover’s love, a mother’s love
even, perhaps especially, a doctor’s love,
it melts revulsion and cruel crude humour
allows us to accept that we are, after all,
creatures of the earth.
We are taking her home.
The staff are stunned by the suggestion.
This is a long-term care facility.
Nobody goes home.
Professionals who twice allowed her to sink to the brink of death
without notifying her family
now express concerns for her safety.
Still, on the day of our departure,
they all crowd round to say goodbye,
Goodbye to Gracie,
a nickname she abhorred.
She has no idea who these people are
who gather here to wish her well.
But there is real affection, and real concern, in their send-off.
I thank them,
and she smiles,
and we are free.
Some things about Alzheimer’s have to be said in prose. These reflections are based on my personal experience, but also on my training in psychology, and in particular, in the meaning-centred psychology of the Viennese psychiatrist and neural surgeon, Viktor Emil Frankl.
One: A person with Alzheimer’s, struggling to use the corroded neurons of the brain, is nonetheless an intact person, fully human, an intact spirit.
Two: Within the atrophying brain there are intact areas, untouched by illness:
a person who cannot speak may sing, a person who cannot speak may read,
a person who does not know what day it is may have a perfect eye for colour and design.
Three: A person with Alzheimer’s cannot be assessed, at least not in a fixed time period.
Her abilities have no steady state – they vacillate wildly even in an hour.
The person who recognizes me now may have no idea who I am in an hour or two,
and vice versa; every hour is new.
What a person can do today, he may not do tomorrow
but what he cannot to today, tomorrow he may find easy.
Yesterday’s assessment cannot predict even as far as today.
Four: The person with Alzheimer’s does not remember yesterday,
but may remember the distant past as it were yesterday.
The same news is news, every time it is told.
This means good news is a joyful surprise, every time it is told.
It also means that anyone who is not family is a stranger and needs introducing every time you meet. What you told her yesterday she does not remember. You have to tell her again today. Again and again.
Five: Every person with Alzheimer’s, like every person without Alzheimer’s,
longs to be needed, longs for life to be meaningful.
We fear being useless more than we fear dying.
We need to allow people to continue to contribute to life around them, in whatever way they can. This is more urgent than “activation,” than entertainment, than custodial care.
If we remind people with Alzheimer’s of the contributions they have made in the past, these come, too, as happy surprises, often bringing satisfaction and joy.
But today’s reaction may be completely different from yesterday’s or tomorrow’s.
These reminders have to be repeated, because they are not remembered.
Six: In severe dementia, or in the worst moments of developing dementia, people are constantly shifting between fantasy and reality. This means that when we interact with them, we are essentially entering into their dreams. Often, we do not know where or when the dream is set, or which role exactly we are playing. We have to be alert, and ready to improvise. There is absolutely no point in trying to force people to become aware of the “real” time, place and situation, though we can certainly savour and cherish the lucid moments. But at other moments, we have to be ready to enter into the other person’s fantasy. And we need to remember that even in a fantasy, even in a dream, the emotion and the meaning are genuine and important, far more important than the facts of the “real” situation.