I need to have a rant.

If you’ve been reading my blog lately, you know that Mum is in the latter stages of Alzheimer’s and occasionally I write about it.  About the things that have made me grow; things that have made me sit up and take notice; things that have made me sad. I’ve written about special days, happy memories, sad moments but most of all, I want to reach out and share with you so that you can see that there’s a whole new relationship out there for the taking, if you’re become willing to accept that the person you once knew is changing.

Having been granted the grace to accept Mummy’s Alzheimer’s, doesn’t mean I like it. I’m overprotective and at times frustrated.  Ridden with guilt many times too, because I live seven thousand kilometers away in Florida, while she lives out the winter of her life in a residential home in England.

That being said, I am privileged to be given a ticket to fly over and spend time with her, at least twice a year.  For that I will always be grateful.

When I come over, we do things together.  A lot.  Most outings are like a first for Mum and that’s fine by me.  It’s like watching a child revel in discovery and we always end up having a laugh.  I will cherish these memories.

Church is something Mum and I do together when I’m there.  A very laid-back children’s service, where she can get her fill of kiddies, babies, parents, and gaze upon the exciting hustle and bustle of life – such a difference from the slump-walk of death she has to face everyday where she lives.

Here, friends embrace her with warmth and love. 

“Hello Daphne!” they hug her.  They understand she’s nervous and struggling to keep up.  She smiles and stirs her coffee.  Puts another sugar in.  I hold her hand because when we’re together, she tells me she feels safe. 

Then along comes Penelope. Oh no! She makes eye contact with me first then looks at Mum and rolls her eyes.  She comes right up to Mum, her face three inches from Mum’s.  Mum looks at her with the same half smile, half frown, but trusts this is another friend of mine, because I greet her by name.

Her tone is so horribly nasal and condescending and she draws out every words. “Hello, Daphne.  You don’t remember me, but I don’t mind.” She laughs and winks at me

Then she turns to talk to me, ignoring the hurt look on Mum’s face.  I want to smack her! My heart breaks for Mummy, because I don’t know how to handle a situation like this one.  How on earth am I supposed to tell this woman how horribly she’s hurt my mother?

After she’s left, Mum turns to me, “Why did she say that? I’ve never met her before.”

I give her a hug.  “Don’t worry about it, Mummy, I think she’s confused.”

“Oh.  Because I’ve never seen her before.” She puts her hand in mine.

I really want to smack Penelope.  Right there, in church.  I’m sorry, God, but I do. I don’t consider myself a violent person, but that’s the feelings that races through my veins. How dare she say that to Mum?  To her face?

Penelope, however, is well intentioned most of the time. She works hard to greet every person who comes in through the doors, she bustles everyone about, she serves, she hosts, she talks, she boasts and … well … she just always seems to be there.

Perhaps I should have a heart to heart with Penelope or perhaps I should just let it go.  I’m not sure what to do, you see, because I never know what’s going to stick in Mum’s mind and what isn’t.

Problem is: if I come to talk to her, being at the end of my rope with her insensitive behavior, I might just slap her.  And that wouldn’t do any good, would it?

Flow

Flowing our writings:   with pieces stolen, borrowed and copied from friends in the turret. With thanks to Jill, Lynn, Claire, Claudia, Julia, and Val.  Magical evening...

“Why, the old dears of the parish haven’t had so much to talk about for years,” Eleanor said, picking her cuticles.

“Really?  What happened?” Vi prompted with a poke in the ribs as the train hurtled down the tracks to Brighton.

“Well, you know these teenagers of untamed temperament…all snuggled together like cats in a basket one moment…and the next…” Eleanor paused, rolling her eyes. “Well.  Right out there in the park, I’ll tell you!”

“Really? What happened?”

“Ah, well.  It was Sunday’s bonfire, just after the sun had winked its last golden eye of the day, and they were at it!  Even down in the watercress and daisies!” Eleanor coughed, an ugly crackling sound in her chest and throat.

“Really? I can’t believe it.  I can just imagine the old dears’ faces, looking to see if this was a day for smiling.”

“Oh, no.  No smiling for them! It was leggy here, chrome handlebar there, spitting bonfire, alcohol…repulsive thing that sends children’s smiles devilish.” Ignoring the signs everywhere, Eleanor lit a cigarette and blew out a long plume of blue-grey smoke through pencil-thin red lips.

“Really?” With a nervous giggle, Vi wrapped her arms around her saggy breasts.  “An then?”

Another cough. “That’s when the strumpet performed.  Letting everyone rip off her clothes, piece by piece.” Vi gasped as Eleanor took a long drag. “Oh yes, they saw it all. Until she was standing there as naked as unctuous incarnate, breaking every law…daring every convention of human decency.  Slut!” With a final puff, she stamed out her cigarette and pushed it over to where a pierced youth snored against the window.

"Really..." Arms still tight over her chest, Vi pinched her wrinkled nipples in secret, remembering how it had killed her soul but paid the bills.

Running out of time

         Running out of Time

The three sisters and our lovely Mum

We talked about time today, at lunch with Jackie and Mum.  Time and how it passed without our even willing it. "Tempus Fugit," Mum always says.

It’s been quite a while since Alzheimer’s robbed Mum of her memory and time has ceased to have any meaning for her.  Tomorrow is distant, anything more than a ten-minute car ride is long and waiting for someone to pick her up is like eternity.

Yet my time here has flown by for her.  She rarely remembers that I’ve seen her the day before and I can never stay long enough. 

While we waited for the meal to arrive, Mum told us (again) about how upset she had been, thinking we weren’t going to come.  She felt terrible and then felt terrible about feeling terrible.  She convinced herself we weren’t coming, when in fact we arrived just when we said we would.

“I think time is something invented by man, Mum.  It’s a way of measuring things and establishing a distance from one point to another.  But what if time didn’t exist?  We could just live in this moment and not have to worry about what came next or what had been before.  Just enjoy this,” I spread my hands to encompass the table, the place and us.

Something happened just then.  I saw it in her eyes; that place where the magic begins and ends.  It happened as it does, in a nano-second.  She materializes from behind the veil of forgetting, appearing unscathed by the claws of Alzheimer’s oblivion and we are given Mum back for a few minutes.

She held Jackie’s hand in one of hers and mine in the other.  No one said a word as she looked back and forth between us, and she got a little misty-eyed.  “Do this with your children, won’t you?  Promise me you’ll do this.  You don’t understand what it’s like to be old, to forget, to have to depend on everyone else for everything.  Spending time with you is the most precious thing you could ever give me…” 

I choked up.  I couldn’t look away, because I didn’t want to miss a thing.  It was one of those moments I want to cherish forever.

“We will, Mummy.” We said as one. 

“I remember what it was like to have my independence, to get up and go whenever I wanted to, I had a life.  I had Brian. I had a family.  And now … now there are times when I don’t remember a thing.” She continued to gaze at us.

“I miss Brian so much.  Every day I miss him, it’s like time is stuck.  But I know he’s here, I believe he’s here…”

“Yes,” we replied, “right here.” As if rehearsed we both pointed to the empty chair at our table of four.

“Do you think I’ll ever get over it?” she whispered and inch by inch, she let go of our hands, turning for her handbag.

As she did, her eyes slid across my face and I saw it, the invisible iron grid crashing down as the vacant, lost look returned.

In a soundless whisper of another nano-second, she was gone.

Time plays cruel tricks.  Especially with people who have no recollection of the former or the ensuing.  We are so conditioned to living with clocks, calendars, schedules, routines, and prescribed lengths of time, that we are lost without them.

Mum lives in a constant now that’s always resetting itself, so she’s condemned to repeat and repeat herself – yet, paradoxically, the more routine she has, the more settled she is. 

Time is never given back to us, time doesn't wait.

Do this with your children, won’t you...?

With Love, all things are possible.

With Love, all things are possible.

            I don’t know how many times I keep saying it, but I’ll never stop now.  With Alzheimer’s I never know what’s going to stick and what isn’t.  What Mum’s going to remember and what’s going to be buried forever.  What’s suddenly going to pop out, or how deep the love channel runs and where the love messages get stored.

My English mobile shrilled with a call from the Alzheimer Residential Home where Mum lives now.  Mum had been rushed off to the Emergency Room in an ambulance, with all the symptoms of a heart attack.  I didn’t even have to think about it, I knew I needed to be there.

Yes, I know I’m a “fixer” and a “manager” but I couldn’t help thinking, it was my phone that rang. I’m the one who lives, for the most part of the year, in America. There must be a reason, and there certainly was, I later found out.

The weather was foul, April showers, constant cold mist and rain. The M-25, the huge circular ring road round London, was heavy with traffic and blinding spray.  I didn’t know the way to the hospital, so I entrusted the navigation to the little GPS in my sister’s car.

On the last part of the journey, I began to worry that I wouldn’t know how to get to the A&E (Accident & Emergency) entrance (the English equivalent to the ER), so was delighted to find myself stuck behind an ambulance with its blue lights on.  Trusting a hunch, I followed the ambulance hoping it would lead me to the right section and the right Hospital.  It did!

Imagine my surprise at seeing a young man getting out of it with Mum’s shawl!  What were the chances of that?  I leapt out of the car and ran to her side, finding her terrified and in agonizing pain.  The rain wet her face and made tears for her; Mummy, you see, doesn’t know how to cry.

“Where am I, Noony? What’s happening?”

It was horrible watching them whisk her in, knowing I couldn’t follow, because I had to park up the car, but I hoped that she understood at a visceral level that one of us was near.

At last we were reunited and spent the next six hours side by side in a little curtained cubicle the A&E.  The pain seemed unbearable, but the results of Electro-Cardiograms showed her heart was fine. Blood pressure was fine.  If she'd known how to cry, she would’ve been crying.  Yet they couldn’t seem to find anything to give her for the pain. You have to know Mum, she rarely complained about pain, and hardly ever took pain pills in her life.

“Where am I, Noony? What’s happening?”

She cried out in pain.

“Where am I?   What’s happening?”

She held her chest and moaned.

“Where am I?”

She was freezing and I couldn’t put enough of those paper-thin blankets over her to keep her warm.

“I’m so cold, it hurts.  Where am I?”

Then it occurred to me.  We’d signed a DNR (Do Not Resuscitate) a few months earlier.  Is this was happened with a DNR?  The patient just got ignored?  I somehow couldn’t believe it and my heart was pumping overtime now.

At last a doctor appeared and what a breath of fresh air he was!  He poked and pressed and made her shout out in pain.

“This is good,” he winked at Mum.

“That hurts!”

“Good?” I asked.

“Yes, heart attacks don’t hurt when pressed.”

He smiled.  He spoke to Mum and he spoke to me.  Then he explained the DNR.  They do give every level of help and pain relief.  Until something gives out, then they allow nature to follow its course.  No chest cracking or pumping.

So pain relievers were eventually injected and within half an hour relief arrived in the form of a smile. 

“Gosh, I’m hungry.  What’s happened?  Why am I here?” Mum sat up in the bed without warning.

“Really?  That’s good news.  How’s the pain?” I couldn’t believe this transformation.

“Much better. Am I going to stay here forever?  Is there anything to eat in this place?”

The doctor happened to walk by and popped his head through the curtains.  In her inimitable fashion, Mum addressed him.

“Do you think I might ever get something to eat here?”

“Are you hungry, Mrs. Rathbone?”

“Well, wouldn’t you be?”

Mum was back! And soon the doctor was back, with a tray.  Sandwich and a cup of tea.  Yep, Everything in England is cured with a cup of hot tea. But this was the first time I’d ever seen it served up by the doctor himself!  What a sweetheart.

“So what’s happening, Noony?  Where are we?”

At last she was discharged and six hours after my hair-raising drive there, we were back on the M-25, only this time Mum was in the passenger seat on my left.

“Are you alright, Mum?  Warm enough?”

“Mmmm, lovely.  I love this hot seat.”

I drove and we fell silent for a while.  Two minutes, five minutes, ten minutes?  I don’t know.  She may even have dozed off, as my eyes never left the motorway.

Then I felt her hand on my arm.

“Thank you, Noony,” her normal tone returned, she stroked my arm.

“Oh, Mum, there’s nothing to …”

She cut me off, “Thank you, what a lovely adventure we had.  A sneaky afternoon out.  I always love it when we go out together. This is one for the memory box." Her voice had a misty undertone to it. I was going to say something about the ordeal she’d just come out of: about the fear, about the pain, but something made me bite my tongue.

My foot came off the gas pedal a little, as I glanced over at her.  Gone was the pain, gone was the fear. Her eyes smiled. My own heart began weeping, because all that was left for her, from her traumatic experience, was…Love.

Broken communication

Fractured Radial Head

Elbow almost 100% healed.

Blogger should return to blogging duties,

Quite soon!

PURPLE

PURPLE

I never had a purple thing

Never owned a one

But always admired it on you,

My aunt and cousin too.

Then all at once at 48

Or maybe 53

A pair of purple scissors

Jumped off the shelf at me.

Purple, purple who are you?

Stuck tight mid red and blue

Purple, purple what are you?

You’re naught without those two

There’s something about this color

I can’t quite understand

Like why it’s part of royalty

And deity combined?

Is it because it’s posh or smart?

Or ‘cause it’s slightly cold?

What makes a robe a fancy thing,

The color or the gold?

I never stopped to think about

A color’s qualities

The thing that makes it pop just so

When dull or bright or jolly. 

The Kings of sunny climes I know

Wear yellow, orange, green.

Yet those of colder countries

In those colors won’t be seen.

It isn’t an exciting color

Like pink, or red or yellow

It’s smooth and soft and comforting

In fact seems quite mellow.

I’m reading about a woman

Who sees and hears in color

And my daughter, Tanya, bless her heart

Can see colors of a color.

I’m hoping you might help me now

I’m baffled beyond belief

I now have a mass of brand new things

In purple in my life!

Why purple? Why not blue or red?

Why purple and not green?

Am I changing all that much these days?

Attracting it unseen?

Cold I’m not, nor priest or king

Nor close to 87

So tell me purple what’s the deal?

Why now and not at 11?