Category Archives: Alzheimer’s

My brother’s wedding: first big family event since our mom died

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10672363_10204471243522534_8656715992297499162_nIt was the

First big family event after

My mother’s death:

My little brother got married.

Doug’s now-wife,

The incomparable Sarah,

Had come into our family

Three months before our mom

Died of Alzheimer’s.

Unfazed by the

Slow-burn trauma

Our family was slogging through

At the end of Mom’s

Long

Long

Illness,

Sarah plunged right in.

She and my brother exchanged

The giddy first Christmas gifts

Of their relationship

In the sick room where we

All had gathered.

No squeamishness,

No wariness,

Just a deep empathy,

And an intuitive sense of what

Needed to get done–

Meals cooked,

Thank you cards written after the funeral.

During those dreadful last months

Of my mother’s life,

There were flickers like

Lightning bugs of

Laughter and lightness and

Hope for the future,

And Doug’s relationship with Sarah

Was one of them,

And Sarah herself was another.

WP_000005The day of the wedding,

I carried in the palm of my hand a

Small, round picture of my

Mom and my brother

When Doug was probably about five,

His hair white blonde,

Sucking in his bottom lip the way

He used to as a child,

My mom in her late 30s–

Probably my age–

Pretty and happy to have her

Favorite little boy in her lap,

Looking slightly above the camera,

Expectant.

As we walked to the wedding together,

I silently showed the

Picture to my brother,

And we put our arms around each other

And he said,

“Thank you, Jen.

Thank you,”

Blinking tears.

I’m the one who cried for

Much of the ceremony,

Looking down into my palm

At the picture,

Or at the empty chair in the

Front row

Laid with a bouquet of yellow roses.

It was Mom’s little boy

Getting married,

The one she got to care for,

Who let her care for him,

Making sure he had flannel sheets

On his bed in the winter,

Patching up his

Favorite blanket over the years.

My brother gave

My mother the kind of

Motherhood she was suited for,

And now there he was,

Under a pure blue sky,

Starting on the next part of

His journey,

With Sarah.

With my mom, too

In a way,

But also very much

Without her.

Later at the end of the reception,

In the soft,

Other-worldly glow of the

Tent lights

It was me and a dozen or so of

Doug and Sarah’s friends left,

Dancing to an iPad playlist.

It was fun and wild and

Most people were pretty wasted and

Feeling the music in that

Drunken way

I remember

(or don’t remember).

There was my little brother and his

Wife,

Their friends gathered round and round,

Laughing and moving their alive bodies,

It was a joyful and sweet moment,

But what would’ve been just a

Tinge of nostalgia about

Change and

New life journeys

Was instead a wave of grief.

Our mother,

Doug’s mom,

Was dead.

She was dead.

Her ashes moldering in a

Cemetery 80 miles away.

And our lives progress on.

Grandchildren born and

Children married.

There will only be more and more

Events and even

People

She will have missed.

This: Doug and Sarah’s

Life together,

She won’t see it.

They won’t get the

Benefit of hearing her say,

“I’m so proud of you.”

And indeed,

For all of us young,

Laughing,

Healthy people

Dancing under the

Glowing tent,

This is our moment to be

Heedlessly alive in this world,

But it’ll pass.

We’ll die, too.

Grief,

I’ve learned,

Is a voluminous container that can

Simultaneously hold

Sadness and joy,

Bitterness and gratitude,

Fear and faith,

Pain and freedom.

And that night

Dancing with my little brother,

I was buffeted with them all.

It was almost

Too much to bear,

But as we do,

I bore it.

And I laughed,

And I cried,

And I danced,

And I cheered their dancing:

Doug and Sarah’s.

A few things I’ve learned in the year since my mother died

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The anniversary of Mom’s death is Wednesday

But I have the day off today,

So I went down to the cemetery.

I always feel the urge to

Bring something

To put on her grave;

It feels wrong somehow

To show up empty-handed.

I usually stop by the

SuperAmerica on the way and buy a

$3.50 single rose in a plastic tube, which I remove.

But the rise her grave is on is

So windy

The petals get stripped off

As soon as I place the flower on the ground.

So I decided to take the Christmas wreath

Off our front door and

Bring that instead.

But as I was taking it down,

And saw how dried out it was,

How the fronds broke off at the slightest touch,

I felt like I was just

Dumping our left-over Christmas decorations on her.

Doesn’t she deserve something new?

Is it okay to bring a dried-out

Six-week-old Christmas wreath as an offering

To a grave?

I don’t know.

I haven’t figured this out,

This grieving business.

I drive into the cemetery and am

Relieved to see the

Hundreds of Christmas wreaths,

From a distance as uniform as the military graves they adorn.

Dried out now,

They are army green with

Flashes of red ribbon.

I lean my wreath against her gravestone

And stand there for a few minutes.

I never feel much at the cemetery,

And never know what to do.

It’s so windy, and this time of year,

Bitterly cold.

I have to pee.

Should I talk to her?

Tell her everything that’s happened in the past year?

Rocky being born,

Victor getting glasses,

Me starting another novel.

It feels unnecessary.

I think if she knows things,

If she’s aware of facts about our lives,

She knows.

I don’t need to come to the

Cemetery to inform her.

How long is the right amount of time to stand here?

Should I pray?

God, it’s cold.

I hope the bathrooms are unlocked.

——————————————-

I remember one day,

After Mom had

Retired.

It was a couple years into her

Illness.

We were still calling it

“Mild cognitive impairment”

To spare her feelings

Although it was

Clearly

More than that.

One thing she loved to do was

Go get mani/pedis.

And on this day,

A hot summer day

With a clarifying blue sky,

I was in the front yard as she

Backed the car out of the driveway,

And as she put the car into drive

And drove away,

She waved out the window:

One flip of her hand,

Delighted to be

Retired,

And going to get a

Mani/pedi on a

Lovely summer day.

She was driving the

Silver Camry which

I would inherit just a

Few months later.

Standing on the

Hot, crispy lawn,

Watching her drive away—

It was the last time I saw her drive—

I thought,

Yes.

That’s what her retirement should’ve been like.

A carefree little jaunt to the

Mani/pedi parlor.

She deserved that kind of retirement.

So lesson No. 1:

People don’t get what they deserve.

Lesson No. 2:

Everyone identifies with a

Parent dying.

‘Cause we all have ‘em.

And people have either

Experienced the death of one or both,

Or know they likely will someday.

Lesson No. 3: It’s possible to

Have a relationship with

Someone who is dead.

Someone told me this, right after she died:

“You might not grasp what this means right now,

But you’ll get to know your

Mother in a new way

Now that she’s gone.”

I have this little brown teddy bear

My mother grasped as she was dying—

I pulled it out of her hands

After she had died—

And I have it sitting

Among my talismans and

Candles on my
Writing alter.

It’s a reminder to me to

Be kind to myself—

To take it easy—

The way my mother would’ve wanted me to.

I see now that she

Loved me with a

Perfect love and

Wants me to love myself as

Unconditionally as she loved me.

Lesson No. 4:

It’s possible to feel sadness and joy at the same time;

They are not mutually exclusive.

At the same time that

I feel grief that she is gone,

I feel gratitude that

I have her for a mom,

And relief that the ordeal of her illness is over.

Where did she go?

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After my mother died

In the bed in my parents’ bedroom,

She stayed there for a few hours

Before two respectful men in

Dark suits

(One in a red ski jacket over his suit)

Took her away.

Wrapped her in a red cloth litter and

Carried her

Out the front door into the

Bright winter sunshine.

Later,

My six-year-old son ran into her room and,

Surprised by the flat, smooth bedspread,

Asked,

“Where did Grandma go?”

I sat down on the edge of the bed and

Repeated what we were saying, about

Dying–

Not sleeping.

Gone.

And the body gone now, too.

To get ready to be

Buried in the ground.

“Grandma’s dead,”

He said solemnly to visitors throughout the day,

And though I winced at his blunt delivery,

I was glad of no

Vagueness or

Euphemisms.

The days after she died were about

Her body

Being gone.

Making the necessary decisions while eating

Pastries and drinking coffee at the dining room table,

Driving with my father to the necessary offices

So he could sign the necessary papers to

Retire the body

Lawfully,

Tactfully,

Appropriately.

Mom’s body, that is.

Mom’s mind?

Leeched away over the years by Alzheimer’s,

So for me,

It was not difficult to spend a week

Being pragmatic about the body.

But then yesterday,

At work,

More than a week after the funeral,

The question popped into my mind:

“Where did she go?”

Her, I mean.

Her essence.

Her, I guess, spirit.

The question felt innocent,

Like when my son asked it on the morning she died.

I didn’t feel uneasy,

Like I did at the funeral,

When earnest loved ones told me with feeling

That she is in a

Better

Place.

With God.

In heaven.

I wasn’t completely sure I believed it,

But I wasn’t averse to the idea, either.

“Yes,” I murmured.

“I hope so.

That would be lovely.”

It surprised me to

Be surprised by my

Uncertainty.

I had never truly

Experienced

My agnosticism before.

I had only contemplated it.

Intellectually.

The body,

Even the mind,

Those departures were comprehensible.

The body

Shrunken and withered under the quilts

Over the last months.

The jaundiced waxy skin

Stretched, shining,

Over the narrow bones.

So that the white cardboard box of

Cremains,

The size and heft of a shoebox filled with sand,

Seemed like just another step in the progressive

Shrinking of the body.

She grew from a tiny baby

To a woman,

Then shrank back down again to a

Box of ashes

A tiny baby could fit into.

Her mind’s development and

Decline also flowed back and forth

Along the continuum:

Babyhood into

Adulthood and

Back again.

Until the last reflex to go,

The swallow reflex,

Developed by a fetus in the womb,

Finally failed her.

The continuum of her

Mental and physical

Development and decline

Was so neat and tidy:

A parabola,

Like an arc of water,

Or a rainbow.

I can sit quietly with those images.

They comfort me.

But it’s that tricky

Soul,

God.

Where did it go?

I can only relate this experience that I had

About five days after she died,

After the services were over and the

Flowers were packed into the back of our truck along with

Leftover cheese and buns and fruit salad from the funeral.

I was doing yoga alone in a

Dimmed, empty exercise studio at the Y.

My iPhone wasn’t getting enough bars to play Pandora,

So it was silent.

No music.

Just me watching my pregnant body

Move

In the mirrors.

And it occurred to me:

There was a way that I could have some

More

Peace

In my life.

And that was by

Being as compassionate to myself

As my mother would be to me.

It would take moving a little more

Slowly,

Perhaps,

Through my days.

Breathing a little more deeply.

No big changes,

Just some slowing down,

Some small adjustments.

And then I thought,

“It’s not that her

Soul

Has entered me.

It’s that

Her love for me

Has helped clarify

My own soul.

She gives me myself,

Purer, and

Clearer.”

I didn’t feel like I

Necessarily needed one,

But an image of

Where her soul went,

Or what it looks like now,

Came to me.

It’s a point of light.

Combined with

Countless other points of light,

But infinitesimally small.

“Maybe that’s heaven.

I wouldn’t know,

And that’s okay,”

I thought as I lay down

At the end of my yoga practice

In my own

Corpse pose:

Savasana.

Dying and being born

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My mother is dying.

We’re all dying,

But she is actively dying

Lying completely still in the

Hospital bed in my parents’ room

At home.

We stopped transferring her to the

Wheelchair the day after

Thanksgiving.

Perhaps her last act of sitting up

Was dozing through the Thanksgiving meal,

The waist strap on her wheelchair keeping her from

Keeling sideways onto the floor.

In bed now,

She lies with her face turned slightly toward the window,

For the light?

Or because she had a mild stroke on the right side,

And she now lists that way?

We don’t know.

Anyway, her face tilts toward the gray winter light.

They–

The hospice workers and nurses–

Don’t give a prognosis,

But days or weeks

Are more likely than months now.

They will say that.

Be ready,

Is the implication.

And I think I am.

It’s been nearly seven years

Since the first symptoms.

But no matter how prepared you think you are,

It’s still a shock,

The hospice chaplain says.

And I believe her.

I’ve never done this before.

What do I know?

It’s not like in the movies

Where you sit gazing into the

Dying person’s face.

You can’t do that for hours on end.

I sit in the recliner next to her bed and

Read my book,

Or work on the laptop,

And look up between chapters or emails

To see if her eyes are open.

If they are,

I might lean across the bed to get my face into her line of vision.

I might smile, and say,

“Hi Mom. Are you awake? Hi.”

It’s rare now for her eyes to focus on mine,

Or for a smile to flicker.

That’s another thing that’s not like the movies:

The dying person staring off into the distance,

Past your shoulder,

At the sky,

Or God.

She’s just not looking at anything.

There’s no focus point that

I can gather.

They say at the end,

The dying person withdraws,

That their focus is inward.

Maybe that’s it.

It’s impossible to speculate,

Or even accurately describe.

I guess I’ll know myself someday.

And by then, I won’t be able to tell you about it.

It’s peaceful, her room.

Their bedroom for 25 years.

Nurses and home health aides pass in and out.

They speak quietly and gently.

Some are more efficient than others;

Some work hard;

Some sit on the couch and text.

But they are all gentle, quiet women.

The room has the same beige carpet and

Floral-striped wallpaper it’s always had.

It’s warm and quiet,

And I rock in the recliner.

I’m 18 weeks pregnant,

And rocking quietly,

I can feel the first flutters and pops of the baby’s movement.

It’s all very circle-of-life.

And yes,

It’s a comfort to everyone

That I’m actively pregnant

As my mother is actively dying.

My two pregnancies will likely have

Book-ended mom’s

Alzheimer’s.

It was when I was pregnant with my son,

Six years ago,

And living overseas,

That my parents came for a visit,

And I first noticed it:

She kept leaving books behind at restaurants,

And once she nearly stepped into traffic,

Not noticing the light.

“Does Mom seem more forgetful to you?”

I asked my dad,

And he said,

Yes,

They were starting to notice things.

Now, more than six years later,

That grandbaby watches cartoons in the next room

While I sit in the dying room.

She is unlikely to see this baby,

Due in May.

Dad told her I’m pregnant

A few weeks ago,

And he thinks she understood.

She grew animated,

And smiled, he said.

That seems so impossible now,

Just weeks later.

She is calm.

She doesn’t seem afraid.

Maybe that’s a final blessing of a disease that

Destroys the brain–

Maybe she’s not conscious anymore of

What’s happening.

I imagine that,

Like her new grandchild,

She feels tactile sensations

Like warmth,

And hears muffled sounds;

She grows closer everyday to the

Next stage,

And has no awareness of

What’s coming

Or what’s gone before.

My parents’ 43rd anniversary

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Aug. 3 is my parents’ anniversary.

43 years of marriage.

My father cues my mother to stand up from her chair:

He takes her hands and says,

“One, two, three, up!”

She looks up at him expectantly,

Wanting to do a good job.

A good Girl Scout, she used to call herself.

Sometimes it takes a few tries

For her to get it.

Finally, she bears down on his hands

And pulls herself to standing.

“Good up,” Dad says, pulling up the waistband of her pants,

Which had slid down.

In their wedding picture,

My father’s tux pants were a couple inches too short.

My mother is wearing the sleeveless straight white dress

That she let me use as a

Halloween costume when I was the

Bride of Frankenstein’s monster in high school.

It’s a color picture

But it’s faded into yellows and greens and grays.

43 years.

Last year we were at a wedding.

My younger cousin and her new husband

Came out of the reception hall

Into the hotel lobby to say good night to

Aunt Marti and

Uncle Bob.

My cousin hadn’t seen my mother in years,

And I watched her wedding smile

Freeze up

As she tried to greet my mother

Who stared unblinking at her for a moment,

And then started fidgeting with her dress.

This is marriage.

A white-haired main leading his Alzheimer’s-stricken wife by the elbow

Into the parking lot of the hotel,

Into the dark spring night.

The script my brother and I wrote

Was that

Mom

Would take care of

Dad

In their old age.

If you’d known them then,

You would’ve thought the same.

She was the one feeding us vegetables at every meal.

She was the one balancing the checkbook at the dining room table.

She was the one deep-cleaning the oven at night.

God chuckles at scripts like that,

And shores up my father for his

New life.

She did take care of him for many years.

And now he’s taking care of her.

Not always with perfect patience or skill.

But with a

Willingness and a

Devotion that’s a

Small miracle.

Last night of taking care of my mom

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It’s my last night of putting

Mom

To bed.

Eleven days and nights of caretaking her

For my dad, who’s on a trip.

I haven’t touched her this much since I was a child.

Steering her thin arms with their

Cool, white, wobbly skin,

Anchoring my hand to the only solid part of her left:

The hips and lower back,

Disentangling her clutching fingers from straps and pieces of clothing,

Pulling her pants up the haunches with their empty hanging sacks of skin.

I see things I remember about

Her body

From when I was a child:

A mole on her lower back,

The way her thin hair streaks against the base of her skull when

Pulling a shirt over her head,

The knuckle-knobs on her hands.

We have the same hands:

Long narrow fingers,

Knobby knuckles,

Blue vein tubes leading into the wrists.

I used to press on her hand veins when I was a child

When I was holding her hand.

But at a certain age,

10 or 11 probably,

I didn’t want to

Touch her

Or be touched by her

Anymore.

If I ever handed her something and her fingers,

Overreaching,

Would brush against the top of my hand,

I would wipe off her touch on my pant leg.

And now,

Here I am,

Her nurse.

She is easy, as Alzheimer’s patients go.

She is light enough to lift,

And gentle, agreeable, trusting, quiet.

(I am sure I will not be so easy if my mind goes.

I will be heavy and contrary and paranoid and I will

Screech nonsense constantly.)

But still.

It’s been hard.

A dependent child

Seems like a worthwhile investment of energy.

They’re the future of the world, after all.

Investing energy in an elderly dependent parent …

They’re at the end.

It’s just comfort now.

What’s the return?

(The return is for me in the giving, I suppose.

Another tough-love parental gift.)

Giving comfort doesn’t come naturally to me.

I would make an efficient,

Detached,

Perhaps harsh nurse.

The kind a sick person would cringe at,

The kind who would jerk an injured limb,

Or scrub a wound too hard.

So not only am I touching

And touching

The maternal body I avoided for 25 years,

But I’m trying to be

Gentle and

Patient.

Yesterday was hard.

She spilled her cereal, juice and milk

On her pants and the floor,

Broken glass.

Lifting the bird-like body in and out of the car.

Mutterings and delusions.

She messed up my plans.

I wanted to go to both

Yoga

And a 12-step meeting.

But I could only choose one.

This caregiver got one hour off duty.

And driving to yoga,

Alone in the car, I thought,

“You know how people say they won’t want to be a burden to their children?

Well, Mom, you’re a burden.”

But at the end of class,

Sweat-bathed and lying on my mat,

I started crying silently,

My tears mixing with the sweat rolling down my temples into my ears.

Tonight,

Laying her into bed,

I looked into her eyes and said,

“I love you, Mom.”

And her blue eyes focused for a moment and she said,

“I love you, too too.”

And I said, “I miss you.”

And she closed her eyes.

Spending Memorial Day with the living, avoiding the dying

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I suppose I should have spent

Memorial Day

With my mother,

If Memorial Day is for

Remembering

Those who are

No longer with us.

Then, she would’ve been the

Appropriate one.

If you think of a person as a

Sum of three parts,

As I do:

Mental,

Physical,

Spiritual,

Then at least

One-third of

My mother–

The part centered in her

Atrophied brain–

Is gone forever.

Dead.

So I should’ve gone over there.

Paid homage to the

Memory of her mind,

And helped my father maintain her

Body and

Spirit.

But I didn’t.

I spent Memorial Day with the

Vividly alive:

My husband,

Our children,

And friends.

Swimming,

And lounging around on plastic lawn chairs

In the sun,

The finally hot sun.

I typically make it a point to

Think of the dead

On Memorial Day:

All my grandparents,

An uncle who died at 10 years old,

An aunt and cousin killed in a car accident,

A cousin who drank himself to death.

Some of them I’ve never met.

But this year of all years,

With one of the

Dying

Still available,

I avoided her.

The crispy bones in her back and shoulders

When I pat her in greeting;

The jaw ticking

Ceaselessly back and forth;

The milky eyes watching my nose,

Then my hair,

Then looking past me as I

Talk and smile.

I never want to be there,

With her,

But I’m usually willing to go.

Yesterday,

I wasn’t even willing.

This Memorial Day,

I chose the living.

Touring the nursing home

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We went to see a

Nursing home for my mother.

Lyngblomsten.

Heather flower,

In Norwegian.

It had all the

Sad trappings

I would expect of a

Nursing home:

Metal hand rails attached to seemingly everything;

Laminate fake-wood signs warning against

Accidentally letting a resident out of the building;

And of course,

The residents themselves.

Men and women,

Shrunken,

Shaking,

With quaky, high voices,

And half a tennis ball stuck onto the bottom of each leg of their walkers.

But you know,

I can make a decision to

Shift my gaze.

I can look

Instead

At the aquarium,

With its bubbling, clean,

Cool-looking water,

Emerald seaweed swaying,

And impervious cyan- and canary-striped flounder

Turning calmly at the corners,

And eternally swimming

Back the

Other way.

There’s the aviary in the corner of the lounge

With warm, golden lights

Bathing the small,

Champagne sparrows with black speckles,

Their wings tiny, beating triangles, as they

Hop from perch to perch

And back

Again.

Or the bright eyes of

Some of

The residents as they

Turn their heads

And look at you

Sideways,

Sliding their walkers slowly down the sallow white tiled hallway.

Some of them will

Smile

In that way of

People

Who have learned that

Nothing’s truly more important than

A small smile

In a day.

The first memory of Mom

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[We’re going to try something, the psychologist said.

Tell me your

Favorite

Memory of your mother.]

It’s my earliest

Memory

Of her.

It’s at our old house,

The dark brown house.

It’s a summer morning.

My mother —

Mom —

Is in the garden in the

Back yard.

And I come out the

Back door,

And I run

Toward her.

I’m probably about four years old.

I am barefoot,

And the grass is

Wet with dew.

The sun is bright and warm.

The sky is completely

Blue.

The air is still morning-cool

But you can feel it will soon get hot.

I’m laughing

And running past the

Apple trees

Toward Mom,

Who is in the garden.

She is wearing jeans, and a blue t-shirt,

And a bandana triangled around her

Ears and face.

She stands up,

She rises

Out of the garden,

And is smiling at me,

As I run

Toward her.

The sun,

The sky,

The warm air,

The grass,

The trees,

The smell of soil,

It’s all

Awash with

Mother-love.

It is

Love.

All of it.

God,

Maybe.

[Do you get to her?

Do you reach her?]

I don’t have a

Memory of

Reaching her.

[But what would happen next,

If you could create?]

She would step out of the

Garden.

She would walk toward me

In the grass

And catch me up in her

Arms.

We would both be

Laughing

In the sunshine and air,

Under the leaves of the

Apple tree.

[What would happen next?]

I would say,

“I love you,

Mom.”

[What else?]

Then my

Dad

Would be there, too.

And my

Brother.

It would be the four of us,

And maybe our old collie dog,

There in the summer yard.

[And then what?]

Then her brothers would

Be there.

And their wives.

My cousins.

Her grandson, my son.

Her parents would be

Off to the side,

Next to the house,

In the shadow,

Out of the sun.

They would be watching,

And smiling,

And waving to her.

[Anyone else?]

Her students,

Friends.

We would all be there,

Crowded into the yard,

Surrounding her.

[What would happen?]

We would

Gather her up

With our hands,

All of us touching her,

And we would

Lift her toward the

Sun and

Sky,

And she would lay back on our hands,

And she would be

Smiling,

Smiling,

In the

Warm sunshine.

[Good.

Good for you

For weeping.

Finally.]

My mother’s brain

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My mother is dying.

I mean,

We’re all dying,

But her

Brain is

Actively

Dying.

She has dementia,

Let me describe it to you:

[After five minutes of sitting and thinking of how to

Describe

My mother’s behavior and words,

And

Not being

Able to:]

It’s so hard to show.

The words

She mumbles

And the actions of her

Hands

(Still manicured, my father sees to that)

Are so

Bizarre

I can’t

Recall them

Later.

I would almost have to

Film her

And transcribe

What she says,

And describe her

Actions as I’m watching

To show you how she is.

My brain,

It would seem,

Likes events and words to

Make sense.

And almost nothing

My mother does

Or says

Makes sense.

Her failing brain

Confounds my

Brain,

My memories of her,

Even from a few days ago.

Me and her,

We’re all tossed together

In some weird

Memory

Vortex.

You can’t

Not

Get pulled in

When you’re around her.

Listening to the mumbling,

Watching the fumbling hands,

You start to wonder,

“Is this normal?

Has it always been like this?”

Next time,

I will try to

Describe her Alzheimer’s.

This time,

My brain feels too

Feeble.