Tag Archives: Alzheimer’s

Bearings

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Bearings

“I’ve lost my bearings,” she said to me, perplexed. She was sitting alone in her room, piles of clothing on the bed and floor around her—the collapsed small tents of abandoned full skirts, the shards of scarves and small mismatched clutterings of shoes.

She had been abandoned in a world that only she lived in, that she knew less about than any of us who tried to visit her there. For her, even changing clothes became an insurmountable obstacle—a challenge that rivaled childbirth, her master’s thesis, an unfaithful husband, an addicted son, an autistic grandson. It rivaled the war she’d staged against her much-younger sister—the power she held over that sister by her rejection of her. It rivaled her efforts to enter the world again as a single woman and to try to win the world over to the fact that it was all his fault. It rivaled her insistence that it was the world that was confused in refusing to go along with all her beliefs and justifications.

She had barely if ever left a word unspoken when it came to an argument. It was so simple, really. She was always right. That everyone in the world, and more particularly her younger sister, refused to believe this was a thorn in her side. The skin on her cheek itched with the irritation over the unfairness of the world. She had worn a path in it, carving out a small trench so that the skin even now was scaly with that road traversed over and over again by one chewed-off fingernail. “Are you she?” She asked me, and when I admitted I was, she added, “Oh, you were always so irritating. Even as a little girl. Why could you never be what anyone else wanted you to be? You were always so, so—yourself!”

It was my chance, finally, for an honest conversation with this sister 11 years older—more a crabby mother always, than a sister. A chance if she could keep on track long enough to remember both who I am and who we both once were.

“So what was wrong with how I was, Betty? With how I am?”

“Oh, you were always so—“ She stopped here, as though struggling for a word or for a memory. I saw her eyes stray to the floor between the door and the dresser. “There’s that little fuzzy thing there,” she said. I could see her eyes chart the progress of this creature invisible to me across the room.

“But me, Betty. What do you find wrong with me?”

Her eyes came back to me and connected, suddenly, with a sort of snap that made me think we were back in the same world again. I tried to keep judgment out of my own gaze—to keep her here with me for long enough to connect on at least this one question.

“You were,” she said, and it was with that dismissive disgusted tone she had so often used with me since I was a very small child. “You were just so mystical!”

I was confused, not sure that the word she had used was the one she meant to use.

“What do you mean by mystical, Betty?” I sat on the bed beside her and reached out for the static wisps of hair that formed a cowlick at the back of her head—evidence of the long naps which had once again taken over her life, after a long interim period of raising kids, running charities and church prayer circles, and patrolling second-hand-stores, traveling to PEO conventions and staying on the good side of a number of eccentric grandchildren.

“Oh, you know. All those mystical experiences! The E.S.P. and all those other stories you told my kids. And Mother. Even Mother believed you.”

Then a haze like a layer of smoke once more seemed to pass over her eyes, dulling her connection to this time and reality and to me.

Her chin trembled and a tear ran down her cheek. She ran one fingernail-chewed index finger over and over the dome of her thumb and her face broke into the crumpled ruin of a child’s face who has just had its heart broken, the entire world of sadness expressed in this one face. I put my arms around her, and for the first time in our lives, she did not pull away. We rocked in comfort to each other, both of us mourning something different, I think. Me mourning a sister who now would never be mine in the way that sisters are meant to be. Her mourning a self that she had not been able to find for a very long time.

“Oh, the names I have been called in my life,” I was thinking.

“Oh, the moonshadows on the table in the corner. What do they mean?” She was thinking.

The last time I gave my sister a fortune cookie, she went to the bathroom and washed it off under the faucet, chuckling as though it was the most clever thing in the world to do. She then hung it on a spare nail on the wall.

When I asked her if she needed to go to the bathroom, she nodded yes, and moved in the direction of the kitchen. Then she looked at the news scroll on the television and asked if those were directions for her. If there was something she was supposed to be doing. And that picture on the wall. What was it telling her she was supposed to do?

In the end, I rubbed her head until she fell asleep, covered her and stole away. I’d fly away the next morning and leave her to her new world as she had left me to mine from the very beginning.

Mind Freeze

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  • The Prompt: Overload Alert—“Everybody gets so much information all day long that they lose their common sense.” — Gertrude Stein. Do you Agree?

    Mind Freeze

    There is new news all day long, for every single minute.
    By radio and television, we are immersed in it.
    Even on the Internet, they repeat and repeat
    every warlike action, every athletic feat.

    We know before their spouses do when politicians slip,
    view every starlet’s nightclub spree via a Youtube clip.
    Stock market scams and Ponzi schemes and other news that scares
    as big guys pick our pockets in order to line theirs.

    Sans Blackwater and Monsanto, we would be better off,
    but we’d still be deluged by news of Enron and Madoff!
    We consult Wikipedia to see what it might say,
    keep up with the Kardashians a dozen times a day.

    It’s hard enough to keep abreast of those they might be bedding,
    let alone to know the date of their most recent wedding.
    Who has gained a pound or two or who’s the most hirsute?
    This information makes our lives a Trivial Pursuit.

    There are so many details that come at us day and night,
    filling up our minds until our craniums feel tight.
    We’re stuffed with sound bites, news clips and every TV show
    until it is inevitable. Something’s got to blow!

    No wonder that we can’t remember names of our best friends
    or what we came out shopping for or how that movie ends.
    We can’t remember song lyrics or what we meant to do
    when we came in here for something. Was it scissors, paint or glue?

    I am forgetting everything I always used to know.
    Every mental process has just gotten kind of slow.
    It’s taking me much longer now to ponder each decision—
    a factor that the younger folks consider with derision.

    Like-aged friends agree with me, for they all feel the same.
    They all have minds stuffed just as full, and we know what to blame.
    There’s too much information, and like any stuffed-full larder,
    to locate things within them gets progressively harder.

    If we could sort our minds out the same way that we pack—
    putting unimportant stuff way at the very back
    and all the more important things in front and at the top,
    we wouldn’t have to search our minds and wouldn’t have to stop

    to figure out the names of things or places or of folks,
    and then we wouldn’t be the brunt of all their aging jokes;
    but it seems that we can’t do this so perhaps the answer is
    to just turn off the TV news and gossip of show biz.

    The scandals and the killings—all the bad things that astound us—
    we’d leave behind to concentrate on happenings around us.
    We’d notice more the little things in our immediate world:
    the spider in the spider web, the bud that’s tightly furled

    and notice when it opens, and the dragonfly that’s on it
    and take a picture of it, or perhaps construct a sonnet.
    See the children who are hungry and instead of our obsessing
    on matters where we’re powerless, instead bestow a blessing

    on all those things around us where we have the power to act.
    When we see whatever needs doing, to take action and react.
    Perhaps then all the horrid facts that rise up in the mind
    will settle to the bottom and then all of us will find

    the keys we’ve lost, our glasses, and remember why we came
    into this room and how to recall every person’s name.
    And all the time we save we’ll spend on the important things
    and feel the sense of purpose helping others always brings.

    The world is too much with us with its bad news of all kinds,
    and all this information simply freezes up our minds.
    Perhaps with less input, there would be less facts to astound us
    and we could concentrate on what’s important close around us.

In the Open

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DSC08727

In the Open

The day is balmy
with segmented clouds.
The African tulip tree
spreads its boughs wide
over the seated ones
as well as the one who stands in front of us,
leading us to ground our feet,
relax our arms with hands palms up
and to go inside ourselves
to watch our breath
and be in the now,
in the state that she calls openness.

To be in the future is not openness, she says,
and to be in the past is not openness.
Only the now is really living.
And it occurs to me
that when I think I want a cup of coffee
and leave my studio to go in search of it,
then, in the kitchen,
can’t remember what I’m there for,
(and the reason why so many
friends my age are doing the same)
is because we are in this state of openness
more frequently
as we get older.

Wanting a cup of coffee is in the future,
and remembering we wanted a cup of coffee
a few minutes ago
is having to remember the past.
Standing here in the kitchen
listening to the baby birds’
loud cheeps
from their nest in the kitchen overhang
is being in the now.

And so it is that all of us, as we age,
are in the deepest stages of meditation
most of the time
and should not worry so much
about Alzheimer’s or dementia,
because we are where Tibetan monks
and ladies leading meditation
would have us be.
Open. Living the now
with increasingly
less memory
for what was
or was to be.

NaPoWriMo Day 20: Gray Walls with Boxes

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Our prompt today was to write a poem in the voice of a member of our family.

Gray Walls with Boxes

Once I knew words that fit together.
Now my mind still has the answers,
but rarely lets me in to find them.

People who seem to know me
bring pizza in a box
and we eat it in front of another box I’ve forgotten the name for––
a small world with other people moving in it that I don’t know.
Sometimes words appear in a ribbon on the bottom edge of that box
and I wonder if I understood them
if they ‘d tell me what I’m supposed to do.

On the walls are other flat boxes
with people frozen in them
and I think it is my fault.
There is something I am supposed to be doing.
There is something I am supposed to be doing.
“They are your pictures, Mother.
They’re there for decoration—
for you to enjoy,”
a woman tells me
when I ask her
if she’d like to take them
home with her.

I don’t belong here.
My high school boyfriend
must be wondering
where I’ve gone
and my daughter is as confused as I am,
claiming to be her own child;
and then one day my sister comes
and I have to laugh because they all
look so much alike—
my sister and her niece and her niece’s daughter
whom they try to convince me
are my daughter and my granddaughter––
so many layers of daughters
that it is too hard to keep them
all in mind.

But then that floats away
and I am trying to remember
when I am leaving this hotel
and I feel I’m not suited to run for president
although all those people
cheering at that big convention in that little box
want me to––
that little box they turn off and on each day,
sometimes before or after I’m ready
to have it turned off.

And they take me to that large room
where all those silent older people sit.
I do not want to go into this room,
but I am lucky, and we move through it.
Someone’s daughters have come to put me
into a box that moves us through the world
without walking. At first, I am so surprised by it,
then I remember what it is
but can’t remember the word for it.
As we sit in it, the world moves by
too fast, scaring me, and I try
to weep unnoticed.
But then they take me out of it,
give me popcorn
and lead me into a very large room
with many people sitting down
and an entire wall with larger people
moving on it, and it is so confusing, like déjá vu,
for I remember being in a room like this before,
but I don’t know if I’m supposed to
make them do something other
than what they are doing
or if I’m already controlling them with my thoughts
or if I’m supposed to be
up there on the wall with them.
I can’t remember whether these people
on either side of me are my sisters
or my children or strangers,
sitting chair after chair down the long aisle.

Most days, I am so sad all day long,
but sometimes my real self
comes to visit and I think,
how did I become a martyr like my grandmother
and why can’t I stop myself from crying, just like her?
One gray wall meets another at the corner
and I’m sure
that I am being punished
for things I did but can’t remember.

That blank face
in the mirror
has me in it,
but I can’t get out
and for a moment I know, then forget
that this is why I cry
and cry and cry
and cry.

 

Different types of Loss

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Okay.  I’ve hinted and I’ve come right out and asked, so I’m going to use another tactic.  I would really like to hear some thoughts about types of loss other than death.  I know so many people who have moved to be nearer parents who have Alzheimer’s or who need more care.  They give up their lives, friends, houses to do so.  This is a huge loss even before the eventual loss of their parents.  Any thoughts?  I went to visit my sister who was at the stage of Alzheimer’s where it was becoming obvious to all of us that she would soon need to move into a care facility.  It was heartbreaking but also a very intimate time together with a sister who was 11 years older than me and so who had always thought of herself more as my “boss” than my sister–in my eyes, as well.  We had been a bit estranged for years, so this chance to be with her for a few weeks was both very special and very hard at times.  I’m printing a poem I wrote about the experience, hoping it will prime the pump for other peoples’ memories.  Please share them.  –Judy

I will be the first.  This is a poem I wrote while I was at my sister’s house. She is now in a managed care facility which is very hard for her.  She keeps thinking she is in a hotel or back in college or even back in our home town in South Dakota.  One thing is constant.  She keeps wanting to go home.  This was written during my last visit with her before she had to move.

When My Sister Plays the Piano

The first notes, beautiful and true, float like a memory up the stairs.
In the week I’ve been here in her house with her, she has not played the piano
and so I thought her music was gone like her memory of what day it is
or whether I am her sister, her daughter or an unknown visitor.

Yet on this morning after her 76th birthday celebration,
music slips like magic from the keys: song after song
from “Fur Elise” to a sweet ballad I don’t know the name of—
sure and correct at first,
then with a heartfelt emotion we had both forgotten.

“Midnight Concerto,”
“Sunrise, Sunset”—
song after song
expressed
in an unfaltering language—
some synchronicity of mind and hand
her brain has opened the door to.

While I listen, time stands still for me
as it has for her so often in the past few years
as yesterday and today shuffle together to
crowd out all consideration of future fears.

For ten minutes or more, she segues
from melody to melody
with no wrong note.
Then “Deep Velvet,”
a song she has played from memory
so many times,
dies after twenty-four notes.
Like a gift held out and snatched away,
I yearn for it, pray she’ll remember.

After an uncharted caesura, her music streams out again,
sweet and sure, for a staff or two—
the sheet music giving her a guide her brain so often can’t.
But after a longer pause, I know it is lost
like the thread of so many conversations.
A hiccup of memory, folding itself away.

“Come And Worship” chimes out
like the tolling of a bell.
The wisp of the old hymn, two phrases only—
before it, too, fades.

That sudden muffled sound.
Is it a songbook displaced from its stand as she searches for another;
or the lid of the piano, quietly closing on yet another partial memory?