By Marjon van Bruggen
Introduction
Instead of giving clarifying information about the terrible Alzheimer's Disease this booklet contains 30 poems showing the reader what Alzheimer's Disease does to a hitherto normal and conventional happily married couple.
In this case, the husband is mine, the wife is me. No fiction here, it is all frightening real.
Over a period of three years, I wrote poetry to understand what was happening to him, to me and to my quiet, happily married life. The change was gradual and from a loving wife of a wonderful, intelligent, devoted husband I became the caretaker of a very ill and irrational older man. In my poems, I try to come to terms with various powerful emotions, like anger, disappointments, acceptance, desperation, compassion, hope and delusion. The strength I needed came out of ever-present love, and unconditional faith in the Lord. Without this love and His guidance, I know I could never have done it.
I dedicate this book to all brave women and men who find themselves in a similar situation; having to care for, and live with a loved one suffering from Alzheimer's Disease. It is my wish and hope that they may find recognition and comfort. They are not alone!
| Author Notes |
It is two years ago now, that my husband Carlo had to leave me. He died at home, with me by his side, as I had promised him to make this possible. He was terrified of dying in a hospital bed.
The Alzheimer's Disease wrecked him gradually, but when his situation was aggravated by a terminal type of cancer, his body and mind could not resist anylonger. Strange, but his last day on earth he was lucid. We could say goodbye to each other and he went quietly. From today, I will post the poems gradually. It is my wish to have them published, and I hope to find a publisher who is interested to take this into consideration. |
By Marjon van Bruggen
1. Waiting Room
Out of breath and just in time,
a smell of disinfectants.
Did I jot down the right number?
It should be number fourteen
There is a long row of identical doors, all numbered.
We sit.
On a gray-colored bench like ours
a couple drinks coca-cola in complete cadance.
Like on the tick of a metronome
they move their heads far backward,
holding the bottle in the right hand,
now the head clicks upward.
The man's Adams apple shows me he drinks.
The woman drinks too, no Adams apple here.
We sit. Is it the right door?
Observing other waiting people, I see
that the consumption of chewing gum
increased considerably compared to chewing
on the street. A boy with pimples hides
his gum, sticking it under his bench.
We sit, somewhat nervous.
On the gray wall hangs a nurse,
a warning finger on her mouth
tells us that we are in a hospital
and therefore should shut up.
Not everybody got the message.
We sit. My doubt of door number doubles.
Number fourteen opens a crack,
and a white-cloaked assistant calls us in.
The verdict over the rest of our life follows.
The second poem of this series can be found in my portfolio.
Title: Locking-Unlocking. Posted on February 17/20.
| Author Notes | Several of the poems that belong to the series A Silent Cry were previously posted in FanStory. Each time one of those fits in the sequence, I will make a reference of the title and the date when it was posted. They can all be found in my portfolio. |
By Marjon van Bruggen
I know he knows ---
sometimes.
Nothing more to us but details now.
Besides, what's life without
trips to the market,
the price of potatoes,
a good parking spot?
Little things matter, and help
in a shattered disoriented life.
Classical music envelopes me,
moments of complete bliss,
soothing at the end of day.
A wild, angry cry penetrates
my peaceful refuge.
Slowly he loses his mind
and knows it.
Marjon van Bruggen
March 2015
| Author Notes | The first signs that Carlo was suffering from Alzheimer were more a disturbance in my life. Strangers or even friends that came to visit us sometimes didn't even notice. There were sudden changes of his mood, but mostly evident when we were alone. I think that there were many times in the beginning, that he knew what was happening to him. He then got sad or angry, more to himself than to me, but it broke my heart. |
By Marjon van Bruggen
Just A Thought
Today clean dripping shirts
sway shoulder to shoulder
lifted by the breeze
filled by cool breath
no trace of disturbance left.
Could I wash my man
hang him by his ears to dry
and let sun and wind do the rest?
Marjon van Bruggen
June, 2015
| Author Notes | I still had the illusion that Carlo could recover from his Alzheimer's Disease symptoms. They were not so severe yet. I could live with that. |
By Marjon van Bruggen
Clean Air
A step into the laundered air of morning
leaves dreams to simmer, glower and escape.
I glance toward the sunrise, pink melting into fiercest blue.
A sparrow etched in silhouette against the morning sky
pretends, like me, to be the only one awake ---
I was wrong, my oak tree fills with tweets and feathers
happy bicycle-bells chime "good morning! Off to school"
Breathing deep the cleansing air
I know that life is good to me.
I'm reluctant to wake you my dear husband,
if only you could return and keep me company.
Marjon van Bruggen
July 2015
| Author Notes | I was trying, in that period, to keep my personal life and awareness separate from my caring for my sick Carlo. I understood him sometimes, many times I did not. He could not share the same little pleasures in life with me anymore. |
By Marjon van Bruggen
I invited you into my house ....
my weakness welcomed you
your patience cured me
my love.
Your songs, your days I have sung
'til now. It's late and getting dark,
let me carry your lamp now
along the stormy path.
Being together ---
the lamp was lit so long
switched off in a wink
we said good bye, still, I'll stay.
Keep one word for me
in your silence, oh world.
When I'm dead remember
I loved.
Marjon van Bruggen
July 2015
| Author Notes | The relationship husband/wife has definitely changed. I have realized that now. |
By Marjon van Bruggen
The chair shifts in a pool of light
he creases a smile without a purpose
grabs and poises the plastic weapon ---
Woosh!
Another little corpse, a speck
on an already busy tile
a neat row of dead flies.
Satisfaction glows in hungry eyes.
"I saved you from this air attack"
He seems completely sane to all
but me.
He never killed a fly
before
I sigh.
Marjon van Bruggen
September 2015
| Author Notes | This was a difficult period. His mood changed constantly. To many people he would seem not ill at all, he could talk to them, his usual, entertaining self. An intelligent, good-humored man. Then, for no apparent reason, he could change before my eyes. Do or say things he never did or say before, looking at me, but not seeing me. |
By Marjon van Bruggen
It seems the line between
thought and thing is blurry.
Essence escapes.
Food on his plate
is carefully investigated.
Surprised he says "it's brown"
I coach: "mmm it tastes really good"
but it lands on the floor, discarded.
Mistrust in his eyes.
Maybe he'll eat from my plate ---
it works, it is not poisoned.
I laugh and listen sadly
to the clearly told story
of how Roman emperors were killed
by eating brown, poisoned food.
An invisible force in this darkening room
runs away with reason.
Marjon vaan Bruggen
October 1015
| Author Notes | This was a very sad and difficult phase: he suspected me sometimes of poisoning his food, so I could get rid of him. Because I could no longer reason with him, I had to let go. I tried once to convince him, but he got so raging angry that I gave up. |
By Marjon van Bruggen
In his absent presence
eyes shine like an ancient mineral
quartz, I think,
but fractured.
Under his world's weight
he sits gleaming,
rigidly startled at life.
Fresh crystals blink dazzled
after a long darkness.
Ornaments on a Christmas tree.
Marjon van Bruggen
December 2015
| Author Notes | After a long, dark and difficult first half year, something seemed to come back around Christmas time. Sometimes he could look at me, and I thought he understood. Frightened, but with a certain clearness in the eyes, that gave me courage. |
By Marjon van Bruggen
I dream some spring
and see the play of sun
and shadow on the ordered rows
of a vast and verdant field.
It is not that now, of course.
Just the sun, pushing through
the swaying cherry tree
spills warmth through a window
over a tacky old, brownish chair,
his human resting place---
he follows the rays that paint
some color on his winter-white arm.
I let the light, its buttery glow
wash my hands.
Please, God, how can you ever let me die?
I am still needed.
Marjon van Bruggen
May 2016
| Author Notes | Days go by, for him: seemingly unnoticed, for me: missing painfully all the essentials: laughing, dancing, healthy discussions, some sweet lovemaking. Very busy too, with washing, cooking, trying to keep the house clean and cheerful, running after his every need, so he doesn't feel disturbed in his apathy. Spring has already arrived, the start of the second year. |
By Marjon van Bruggen
Consistency of sand
between my toes,
birds settle on the highest
branch for the highest flight--
they'll leave soon.
Will you leave soon too?
Normal things, they happen
day to day
wave to wave
wet the shore.
I see my footprints for awhile.
Water washes, dark spots disappear.
Silence works in my body,
until I stop thinking.
We walk along doggedly
trotting in each other's breath.
Do I know you? Did I ever?
Your voice ...don't leave it at the door--
abandoned,
I try to escape
from the rims of a round horizon.
Marjon van Bruggen
May 2016
| Author Notes | A year of his terrible illness had passed. I felt more and more alone and lost most of my contact with Carlo. The caring consisted in the day-to-day things-that-have-to-be-done. When I could escape for a little walk I went to the beach to clear my head. |
By Marjon van Bruggen
Come, my love, I'll sit with you
I can see you are so tired.
Relax, lean back
please, look at me.
Let's get all that air out,
you look a blown balloon.
Exhalation explodes.
A thousand overheated stallions snorting as one.
There...that's right, now slowly let
new, fresh air into your lungs
we'll count...one...
please look at me---
A whimsical flicker in his eyes
lips closed in one decided line
a new game.
A high, crackling sound.
Even when he laughs
he is someone else.
He wins,
I am nervous.
He refuses to breathe.
Marjon van Bruggen
August 2016
| Author Notes | There were days that I got desperate. He seemed to know what he was doing; trying to wear me out deliberately. He was trying to punish me for something. |
By Marjon van Bruggen
How can you understand
surviving another year in marriage --
even not so much in love,
lust smoothed to whispers in the dark
that stroke on the neck,
pulse of an aria,
chaste the way the love has deepened,
so deep it can be made in public,
church, or those emergencies
in which all we had is lost.
Some day it will be enough
simply to live
need nothing, desire,
aspire to nothing
except a single dawn,
endless dawn.
An apology becomes a compliment,
knees that kneeled too much,
thanked too much --
crumbles pride into powder
too small
to be of value.
Marjon van Bruggen
September 2016
| Author Notes | In September 2016 it seemed I had resigned to the new situation. Caring for Carlo had become my daily life. Friends didn't come anymore, I went out seldom or very quickly to do some errands. |
By Marjon van Bruggen
Caring for him and
living with him means loneliness
yesterday full
today so empty.
Hopefully I search his eyes:
does he see ME?
Someone else?
Or maybe nothing?
He won't tell
not even his eyes
betray.
Who is he?
Marjon van Bruggen
October 2016
| Author Notes | More and more loneliness. I won't show it to him, he can't help it. I am sure there are moments that he, too, feels desperate. So I try to be cheerful. (I write all this now in the present tense, but it all is history.) |
By Marjon van Bruggen
You begged and brawled to see me here
to know my voice, to see my face;
your plea at last has won my grace,
so here I am!
What pitiful fear
engulfs you now? That soul-scent call
the breast that wove the world, that bore it all
that nurtured it? With joy-born bliss
rising to the spirit realm to this
oh! that enveloped my breath
the bottom of my being, the depths
of my soul.
Fear not, I shall not leave
so put your mind at rest. No need to grieve
Be sure my love, a frightened boy today,
it's me that cares for you. I'm here to stay.
Marjon van Bruggen
November 2016
| Author Notes |
Things get worse. It is certain now he has, apart from his Alzheimer's Disease mind-losing troubles, another killer-disease. Today I got the confirmation: cancer of the esophagus. It is not operable. He can't eat anymore, only drink. How can I tell him that?
This poem is, contrary to all the others, a rhyming one. |
By Marjon van Bruggen
The window lattice frames a piece
of blue, sky's peripheral voice.
Step lightly on your memory...
Early sun enters the garden,
scared, quivers at the mighty oak.
Step lightly on your memory...
A perfect slant falls upon my cheek,
remember your fingers
trails etched over half my life.
Oh, step lightly on your memory...
A sound of ravens flying low,
ominous voices in early sun.
Marjon van Bruggen
March 2017
| Author Notes |
Very often now I fall into somber musings. I think of how it was, I think of nothing ever coming back. But I don't want to give in. So I raft myself, go back inside and play the sunny wife. Oh, the duality! (Don't worry, readers! Not anymore. This was three years ago).
I can't get the ballet-steps (French) written right. It should be Jete-plie with ´on the last e in each word. Correction doesn't take away the scramble. Sorry. |
By Marjon van Bruggen
White-yellow bony face
empty eyes unfocussed into distance
robot-like jumping limbs
long soundless minutes.
Then words run out,
strange, foreign-sounding syllables
without sense or understanding.
Some frothy milk spills splashing.
A grin, the eyes focuss fierce:
my name! He recognizes me.
I try to tell something but
he is gone again, away in his
absent world where I am not invited.
I stroke his cheek,
the eyes do not come back.
He needs to sleep, says the nurse
and wheels him away.
He does not look back
I am forgotten.
Let's clean the milk mess.
Marjon van Bruggen
October 2017
| Author Notes | In order for him to keep drinking, a little tube was placed alongside his esophagus. Therefore, he had to stay a few days in Hospital. Out of his known environment, his mental situation worsened considerably. I was glad when I could bring him home again. |
By Marjon van Bruggen
Light under frowning clouds,
a punished child; tears trail
on pale cheeks. Wind howls
crazy cries of a wounded world.
Harvest over now. Loud silence
covers abandoned fields.
Your fixed gaze weighs
heavy on my heart.
On
my way
to
another
endless
day.
Words hang around
in no-where space
never reaching your
faraway eyes or ears.
Dry, lifeless hands
outstretched,
searching,
beg for guidance.
I squeeze them a bit.
Marjon van Bruggen
November 2016
| Author Notes |
Chapters 16 and 17 have erroneously been switched.
In this chapter nr. 17 I was musing over a missing part in our life: After all the work we did together, the house we built, the grandchildren all born, we had a right and finally the time to harvest the peaceful, happy days of old age. But the harvest was over before we could enjoy it. |
By Marjon van Bruggen
A ghost's footstep,
the hammer blow
of sunlight falling on last snow
deafening sounds of silence,
hear:
the wind whispers a tale
of rough and spendshrift gales
that shook last colored leaves
from autumn trees to leave
winter bareness in
blue-hued beauty.
Long, cold nights
freeze each singing stream.
Far, glittering stars
transport dim lights to ghostly trees
dissolving off into endless distance,
wide, vast, living stretches of sky.
I wander, woeful, in unreasoned sleep
caught in crushing coils of serpent misery.
He's there,
with wild and meaningless sincerity.
I wish he wouldn't shout so loud.
Awake I waver still between belief and doubt.
The narrowness grows wide and deep.
Marjon van Bruggen
December 2017
| Author Notes | Around this time, beginning December, and with the promise of Christmas coming, I still had sometimes the unreasonable hope that he would cure and come back into my life as the man I loved and knew. Of course, I knew only too well that this could never be. |
By Marjon van Bruggen
We who shattered the silences
wine glasses flew and
faces gleamed in one another's dreams.
We who read the black news
in our two wooden chairs
your smoke in my hair.
We who passed one another in shadows
spread under the cracks of doors
your angels unknown to me
my angels unholy -- strangers to you.
As I pray, miles away from you now
as I pray to the vast gods of loneliness
as I kneel in my white house and pray.
It's useless, you are too far away
Marjon van Bruggen
January 2018
| Author Notes |
Memories flood me. How we were, how we were different and so complementary, how we were complete together...and then I realized he was still there, waiting for my care, he was not dead, only changed, disguised as a stranger.
I need to explain what I mean with "black news". Carlo and I called it that way, short for all the news about wars, violence, rapes, child abuses, disappearances, thefts, riots, massive school shootings...etc. |
By Marjon van Bruggen
He's a metaphor, not man
the kiss not flesh
but burned into translucence.
The mouth of some mute child,
some other hunger,
otherness.
I want the broken glass of promises
so I can stab myself,
to think of him as heat and breath,
as naked angel bending down
to hold me to the flame.
Kneel down to keep the memory
repent and giving thanks.
He's a messenger, not man --
in my hands the blood applauds;
longing is all mystery
and painful faith.
Marjon van Bruggen
February 2018
| Author Notes | There were moments of deep frustration and anger, of self-pity because of unfulfilled dreams. I always repented those feelings afterward. He was not to blame, he was ill and was certainly not himself. |
By Marjon van Bruggen
He lies quiet
his demanding snores are gone.
I watch his breath lift and lower,
a leg twitches under the covers.
I tiptoe to my own and lonely bed.
Sleep is kept at bay by busy thoughts:
stoop to tie my husband's shoes,
support his frailing frame,
coax the drinks inside his child-like body,
show him smiling photos from happy times,
button up his coat, he must stay warm,
see the signs when he needs a hug,
smile patiently when he calls me names,
so many other little things.
Raising a child is carrying someone into this demanding world.
Carrying a loved-one out comes in a later phase.
In the dark and under the pillow
so no-one hears
I say: let this last.
Let night pass through our hands
like a silk cord. In the morning
we open our umbrella and walk
carefully in the rain.
We eat and we complain.
There's November's beauty
mixed with colored sadness.
I cling to the short days
given over to long nights.
Let us love what now is frayed
and will be fixed no more.
Life, towards the end
begins to fold itself away.
Marjon van Bruggen
November 2017
| Author Notes | Preparing, resigning, carrying on with the inevitable. |
By Marjon van Bruggen
On the back of a failed villanella
I wrote the account of a dream.
Now I read the scrawling tale
of a giant's severed head, rolling
like a bowling ball on my bedroom floor.
It sniffed at puddled underwear,
leered up with horrible eyes
and forced me to stumble to his bed.
There's an impossible distance.
Still strong, I can make it.
I touch his terribly thin shoulders
and tell him how well he sleeps,
how happy that makes me,
but I know that whatever words I use
or gesture I make
he will never believe me,
he will not cross the gap anymore.
I cannot reach him.
he is the bowling ball.
Marjon van Bruggen
January 2018
| Author Notes | In horrible dreams, I see him sometimes as a monster, torturing me. When I wake up, I feel guilty. I feel so tossed between throwing him away and the torturing guilt that follows these thoughts. |
By Marjon van Bruggen
We who were one, are two since
this cruel dance, I bowed before you.
What once was a loving companion
is now my different friend
who cries out, groans with silly smiles
and swells up with noxious fluid;
he clamours for attention.
Ah, let us be true, the world which seemed
to lie before us like a land of dreams
so various, so beautiful and full of hope
today has neither joy, nor love, nor light.
Marjon van Bruggen
February 2018
| Author Notes | Of course, I knew from the beginning of his illnesses that he was going to leave me sooner or later. It was difficult to foresee the complete change of the man I loved for so many years. I honestly tried to keep up appearances to myself, to cheat myself in believing I still loved him, no matter what. I broke down once in a while. Realising the truth. |
By Marjon van Bruggen
For a moment the ticking time stopped
of course we lived, but yesterday
became tomorrow reflected in today.
The plaintive ooh...oooh dove cried for hours
a background, repetitive, reliable soft sound
nothing wrong with omitting a day.
Sweltering sun, shadows green and black
nothing special, just ooh...oooh. Oh that dove
crying for a mate, lost yesterday, not even there tomorrow.
I killed a mosquito; will he be missed?
Will another mosquito cry for him, ashamed wearing sunglasses?
Mosquito-tears, what do they look like?
His mother now, no more his wife. A fleeting kiss in public
not allowed. "Aw Mom no! What will they think?"
A sigh in the sun. It's time to allow the clock to tick.
Marjon van Bruggen
May 2018
| Author Notes | Carlo was very weak by May 2018. He slept a lot, which gave me time to sit in the sun for a while during the day. Never very long, because when he woke up and did not see me, he panicked. |
By Marjon van Bruggen
You seem ashamed to exist
a shriveled shadow
who keeps to the wall.
What strange destiny -
you, once so self-assured
now afraid to live,
but I
I who watch you tenderly
from a near distance,
keeping a worried eye
on your uncertain steps
as if I were your mother,
how astonishing!
I enjoy secret pleasures
without your knowledge.
I see
your earliest passions unfold,
I live your lost days
dark or filled with light.
I enjoy now all your vices
once unable to bear---
my soul shines forth
with all your virtues.
I make
my ways stoical,
without complaint,
through the chaos of our lives.
Marjon van Bruggen
September 2016
| Author Notes |
In a rather early phase of Carlo's illness, when I was still adjusting myself to the changes taking place, it was nevertheless painfully clear that he was not the same anymore. I watched him often, trying to understand him. Only much later I knew that understanding a patient with Alzheimer's Disease is impossible.
Chronologically, this poem ought to have nr. 4 or 4 B. |
By Marjon van Bruggen
The morning counts few hours
when I hear him fighting;
a ghost steals his memories.
Lost, burnt-out eyes stare at me.
I stare back, frightened.
His arms are broken
from clutching clouds.
Matchless stars, blazing
in the furthest skies
make him see memories of suns.
He tried to find limits
and the center of space;
under some unknown fiery eye
his wings melted, crackled, fell.
He, like Icarus, consumed
by love of the beautiful,
never shall have the sublime
honour of giving his name
to the abyss, his tomb.
Marjon van Bruggen
February 2017
| Author Notes | This poem appeared some time ago as "Icarus". I retitled it in Clutching Clouds, and use Icarus as a metaphor, trying to find the ultimate beauty, but burning his wings while trying. He, now consumed by his devastating illness will not even be remembered on his tomb. |
By Marjon van Bruggen
The bed-bound rehearsels
his repertoire of movements,
the dressing-gowned shuffle
clutching his glass body.
We reorganize his symptoms. Outside
darkness descends like a heavy eyelid.
Dispatches rattle. The debris is tidied
into vases, bedside table, mind.
Some siren voices whisper
All's well, all is quiet,
his sheets are straightened
now he can relax into his illness.
Caulked, battened, and kissed,
I close the door,
feeling reliably abstracted.
The world confirmed us, but I open
the door a crack
to see if the sheet still moves.
Marjon van Bruggen
July 2018
| Author Notes | Towards the end of his life, my caring consistent mainly in automatic actions. I felt numb and tired. We were both prepared for the end. He was not very conscious of anything anymore, but his body had to give up soon. Each day there was a little less life in him. |
By Marjon van Bruggen
With you go Archaic patterns
of a home you will never come home to again.
Like an amputation, it will haunt and hurt me.
Only a small death, of course,
not the full ceremony with mourners, a hearse,
residuary legatees and a coffee table after the ritual.
Just a small, fully-conscious end.
Never again will you sleep in this room,
see sun rise through glass at this familiar angle,
never again adjust to the shape
of this bath, the smell of this cupboard.
You have died expected, yet suddenly.
The arrival of the undertakers made me realize
this is for real. Their muscular detachment
dissolves bonds between chairs and rooms,
shelves and their books.
The house offers its own valuation of you.
Dirt appears in embarrassing contexts.
If you were still alive, you would feel
the need to apologize.
Casual adjuncts of ordinary living,
dustbins and drains, the unremarkable
clergyman, haloed in the otherworldly glare
of the last rites, achieve reality
just as you end with them forever.
Neighbors, paying a deathbed visit,
acquire the tender resonance of friends,
while I stand non-existing, dumb.
But die as you go, birth exists
on the edge of extinction.
Goodbye my dear husband,
on your way to your Maker now.
I will respect your wish not to wear black
You have found peace.
With the Lord's guidance, I live on.
Marjon van Bruggen
July 15 2018, the day of your departure.
| Author Notes |
This is the closing poem, written on the day of his death. He had one, intense moment of clear mind before he died. He said: Please don't wear black. I have to go now, but you still have to live. Don't burry yourself before your time.
I respected his wish. |
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