The Deadly Disease

“Listen, whatever you see and love—
that’s where you are.”
Mary Oliver, September 1935 – January 2019

I have written before on the subject of Alzheimer’s, the Deadly disease. Many of us have suffered with our parents, mother or father, as they struggle through this journey. We have watched them change from the lively, spirited, strong people they once were to this shell of themselves,  trying to make sense of who and where they are.

I wrote about a few days in April 2016 when, following a major misadventure, for a few days I didn’t know who or where I was. I mistook my son for a doctor and didn’t recognise my grandsons. But luckily for me, it was only a few days.  For that short time, I could bond with my fictional character Jane and those people who are living with this full time.

One such person, and someone I have written about before, is Wendy Mitchell. Wendy says “On the 31st July 2014 I was diagnosed with Young onset dementia. I may not have much of a short-term memory anymore but that date is one I’ll never forget.” Wendy was only 62 with a busy full life ahead of her. Please go over to her site to read more about this fantastic woman.

She is living with dementia every day of her life, and is filling it with activity not only to help herself but to help others too. She is active on various organisations, has written a book and writes a blog post daily.

In today’s post she writes about Tove a woman in Finland from whom she received “the most wonderful email”. Tove had read Wendy’s book “Somebody I Used to Know” and felt moved to write to her,

Tove’s mother was diagnosed with Alzheimer’s at 56 and sadly died at 64. But she was a poet and before that ability was taken from her, she wrote several poems. With Wendy’s approval and I trust Tove’s as well, I am sharing  two of the poems with you.

Let me stay

among my dreams and memories

yet a while

Let me see the ocean in the sunset

and the beach

Let me listen to

grandchildrens laughter

and notice one more day, please

Don’t run towards me you cruel reality

Stay. Take another way

So when you finally knock on my door

I’m not at home.
I’m perhaps already gone

Lillemor Eklund 2005

and then this one…

When I no longer can pronounce my name

When the silence is hanging over my thoughts,
like a mountain

Hug me, keep me close. Make me feel safe

Whisper my name over and over again

Til I know who I am

Wish me wild and beautiful dreams

in the darkness that has captured me

Hold my hand follow me some of the way”

Lillemor Eklund 1949-2013.

……

Often, in the face of this or any disease or a terminal illness, we tend to forget the other people who are also affected – Wendy’s two daughters, Tove and many others are suffering along with the sufferers of the disease.  They need our support, a phone call, a letter or a visit to show they are not forgotten; their suffering is acknowledged.

 

 

 

 

 

 

 

Remembering Mother

Today I discovered Five Sentence Fiction when reading this blog and decided to try my hand at writing only five sentences.

A moment of clarity in the land of the confused brought on a rush of memories both to her and to those of us visiting her.  This once vibrant, strong woman had been reduced to a pale shadow of herself under the strong grip of Alzheimer’s. Disease.  Suddenly she was once again our mother, even if only for a very short time, when she knew our names and recognised each of us. The joy and happiness was unbounded and in that short time many happy moments and happenings were remembered.  But all too soon, the veil of the Disease dropped down and once again she retreated to the confused old lady she had recently become.

My Name is Jane

I read this post today from Marylin at Things I want to tell my mother and I thought of the years when my mother suffered fro Alzheimer’s. This is a non selective disease. It seems that anyone can get it and frankly it frightens me as I think it might be hereditary.

I have written a couple of posts on this subject, most recently Tea Drinkers Unite in response to a 100 Word Challenge set by Velvet Verbosity.

I choose how I will spend the rest of my life

As one gets older one is concerned about health issues but for me it is mental issues that worry me most.  My mother suffered from Alzheimer’s Disease during the latter years of her life and I wonder if it is inherited and passed down to the children.

Definition of Alzheimer’s – Alzheimer’s disease is a progressive, degenerative disorder that attacks the brain’s nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and behavioral changes.

I recently read this blog from Nancy at Spirit Lights the Way and began to think what it must be like to be in a situation where you really don’t remember or know who or where you are.  This is my attempt to put it into words:

My Name is Jane, I think.

They’re calling me Jane
Is that who I am
I am perfectly sane
but I don’t know their…

View original post 341 more words

Writing 101: Dark Clouds on the (Virtual) Horizon

Still playing catch up.  Here’s Day 12’s challenge

“Write a post inspired by a real-world conversation.

We don’t write in a bubble — we write in the world, and what we say is influenced by our experiences. Today, take a cue from something you’ve overheard and write a post inspired by a real-life conversation. Revisit a time when you wish you’d spoken up, reminisce about an important conversation that will always stick with you, or tune in to a conversation happening around you right now and write your reaction. Take time to listen — to what you hear around you, or what your memories stir up.

I like to listen. I have learned a great deal from listening carefully. Most people never listen.

– Ernest Hemingway

Today’s twist: include an element of foreshadowing in the beginning of your post.”

So here goes.

Thursday, Friday and Saturday had all been perfect spring days.  Sunny and warm the house was opened to the outside and our visitors and workmen were passing in and out of the garden easily.  Several seating and eating areas had been set up and we used one of these eating areas for lunch.

Sunday was the day on which we were giving my partner’s father in law a party for his 99th birthday.

Sunday brought the gale force winds and heavy rain as promised by the forecasters.   I have always lived in a cloud of sunshine, expecting only the best so I really didn’t believe the forecasts.  But woe is me, we had 24 invited guests coming at mid-day and they were all now having to mingle, chat, laugh and eat lunch inside.

A few of the guests arrived early and several were working away in our kitchen helping.  One glazed the ham, another made a salad and another put out plates and cutlery for the lunch.  I directed the help particularly as this is a new house, new kitchen and I was the only one who knew where anything was.

All went well.  The very wet guests arrived as did the guest of honour looking very dapper in his suit, tie and hat to ward off the rain.  He has three carers, ladies who come in and make sure he is OK and they all arrived shortly after he did.  He was given a glass of wine and ushered to his seat where all and sundry came up to him to congratulate him.  He was loving being the centre of attention.

The conversation ranged around many subjects and the guests mingled among each other as any well behaved, well schooled guests will.

I came upon two elderly gentlemen speaking, one with a marked Scottish accent “Well, how many more of these will we be going to do you think Rob” asked one man while the Scotsman replied “I really like going out to Sunday lunch, Bill. It means that Meg doesn’t have to cook”. “Well it can’t go on much longer. We are all getting older” said the first. “What will you have from the buffet?” asked the Scotsman. “I think I might be the first to go. After all I am nearing 90 and not in great health” said the other.

These two continued conversing, neither hearing what the other said and continuing in a conversation that only he could hear asking questions nobody would answer. Is this where we are all heading, I wondered.

Then I looked up and saw the two elderly gents at the buffet table each in earnest conversation with another person. I wonder what they were talking about.

Note – I found this challenge particularly difficult and had several attempts at writing it.  I still don’t know if what I have written meets this challenge.

Waltzing Matilda

My family and most of my friends know that my favourite song is I Hope You Dance.  This song sums up my attitude to life and I love it.  And I have chosen it to be played at my funeral.

Imagine my delight then when I received an email this morning with this video embedded – please watch it.

This unbelievable 94-year-old dancing the Foxtrot with a young man.  Whatever she has been doing for the past 94 years I want to do – and whatever she is on I want some.

And here are the lyrics for you to sing along with Lee Ann Womack.  Yes, yes I know I have given you these words before, but in case…

“I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.I hope you never fear those mountains in the distance,
Never settle for the path of least resistance
Livin’ might mean takin’ chances but they’re worth takin’,
Lovin’ might be a mistake but it’s worth makin’,
Don’t let some hell bent heart leave you bitter,
When you come close to sellin’ out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.
I hope you dance….I hope you dance.
(Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years and wonder where those years have gone.)I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.Dance….I hope you dance.
I hope you dance….I hope you dance.
I hope you dance….I hope you dance..
(Time is a wheel in constant motion always rolling us along
Tell me who wants to look back on their years and wonder where those years have gone)”
Songwriters: Tia Sillers, Mark Daniel Sanders
Copyright: Soda Creek Songs.

Maybe this is why I can’t dance like Matilda.

But these bears are having a good try

Related posts:

• I Hope You Dance
• Life Surely is a Dance
• Shall We Dance

Yesterday

Yesterday I put away my Florence Nightingale attire.  My friend with the new hip is now able to get around on his own.  No crutches in the house and only one when he is out walking.  And yesterday he drove the car for the first time.  So now things are back to normal and Lotte and I are in our own home again.

It has been an interesting three weeks, split between two houses, but mostly spent at his house.  And it’s very strange to have to consider another person when I am making plans.  After all I have been on my own for 14 years.

Yesterday was also the day that I decided to get all my Christmas shopping done.  And in one store.  Our local department store had a special Christmas shopping day – for every $100 spent one gained a $25 voucher to spend in the store before Christmas.  So now I have the shopping completed and all these vouchers to spend on me.  But wait, because they were so busy there was no gift wrapping so that is the next thing on the list.

Yesterday a US Government jet spotted at Wellington Airport was carrying a senior spook, although Prime Minister John Key, who is in charge of intelligence services, is not saying why.  He confirmed the plane was carrying an US intelligence official who met a New Zealand spy. The visitor was ‘‘obviously pretty senior’’ given he or she had come in an US Government plane.

The plot thickens.

Yesterday a year ago I was thinking and writing about Dawna Markova.  She it was who wrote the poem “I Will Not Die”  in 1980s when she was facing a life-threatening illness.  The poem appears in the book of the same name.  Click here to read an excerpt.

And in case you are interested here is the link to last year’s post – I Will Not Die .

Yesterday we learned that Kate Middleton aka the Duchess of Cambridge has been hospitalised with severe morning sickness.  Oh how well I remember those dreadful mornings.  But the world wasn’t kept up to date and informed on my dealings with the dreaded sickness, nor on the progress of my pregnancies.

So while we rejoice for the young, happy couple we can feel for them that they will not be able to enjoy this wonderful time out of the media spotlight.  Well of course, whether it is a boy or a girl the child will be numbered in line for the throne of England.

Yesterday  We learned that two Guinness World Record holders had died; one the oldest person and the other the tallest woman.

116-year-old woman listed by Guinness World Records as the oldest living person anywhere around the globe died on Tuesday in a nursing home in the US state of Georgia, soon after having her hair done.  Besse Cooper died peacefully at the Park Place nursing home in Monroe, Georgia, according to her son Sidney Cooper.  Looking good to the end Bessie.  Congratulations.

And news reports from China  say Yao Defen died in November in her home town in the eastern province of Anjui.  She was the world’s tallest woman measuring 2.33m.  Her height was the result of a tumour and by the age of 13 she was 1.85m tall.  Her family put her in a circus to supplement their meagre income.  What a sad life she must have had.

And just because I like the song  here’s Yesterday by the Fab Four – Oh how young they (and we) were then.

“I will not die an unlived life.
I will not live in fear
of falling or catching fire.
I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible;
to loosen my heart
until it becomes a wing,
a torch, a promise.
I choose to risk my significance,
to live so that which came to me as seed
goes to the next as blossom,
and that which came to me as blossom,
goes on as fruit.”

Related Posts

• Yesterday When I Was Young

Related articles

• ‘Oldest person’ dies in US at 116 (bbc.co.uk)
• WORLD RECORD: Iowa Woman To Claim Oldest Title (whotv.com)

How Lucky Am I?

“When we are no longer able to change a situation,
we are challenged to change ourselves.”
Victor Frankl, 1905-1997
Austrian Neurologist and Psychiatrist

I am  constantly amazed at the fortitude of my fellow bloggers.  When I read of the hardships and abuse many have suffered and overcome, I wonder at my luck of having been born into a loving and caring family and then having the good fortune to meet and marry my ‘Dashing-Young-Scotsman’ at an early age.

I tell people that I have lived a blessed life.  If you have read any of my earlier posts, you will see that I had a long and mostly happy life with my DYS; I have two children whom I love and whose support I can rely on and appreciate.

My family is rounded out by four strapping young grandsons all of whom seem pleased to see their Granma and offers of help are often forthcoming.

Of course, no life is perfect.  I left my family in the UK to follow my husband in his move up the corporate ladder which entailed us moving around the world.  My children therefore, missed out on the companionship of cousins that I had when growing up.  And they saw their grandparents on rare (bi annual) visits home.  So they were very much part of a nuclear family – the four of us in a world far removed from home.

I am also very lucky to have two sisters, one in London and one in Los Angeles.  Could we have landed any further apart even had we planned it?  While they are not within easy visiting distance we still are in regular contact by phone and now of course, the internet.  Aren’t we lucky to live in this technological age.

Mother with her three daughters

There have of course been bad times in this long life of mine.  We lived in Montreal for a couple of years and I absolutely loathed it.  The French Separatists were very active and almost daily we heard of their actions against the English speaking population.  My children’s school was bombed and that coupled with the police going on strike, made the decision for us to leave and return to our adopted home, New Zealand.

This time we knew that it would be a permanent move and that family and friends in the Northern Hemisphere would see us only a rare trips home; but we made the decision in the knowledge that this was where we wanted to raise our children – on the beach in Takapuna, Auckland.  After a year my husband was transferred to Wellington, the capital city, but that’s another story.

I wrote about a time when I was in danger of losing my leg and a black day when I wanted to Stop the World, but my blackest day was 14 years ago when my Not So DYS died and the colour went out of my world for some time.  But living and moving on doesn’t come with a choice and so I am in the next phase of my life and most of the colour has returned.

So daily I give thanks for my life and know that I wouldn’t swap it for anyone else’s.  Oh yes of course, there are parts I would gladly change.  Those that are shared in this post and others but mostly I say thanks to god, the Universe or whatever power is above us for giving me this life.

And above all I thank my fellow bloggers for being so open about their lives, in all the ups and downs and for sharing with us how they have overcome.  In reading about their problems I have come to realise just how lucky I am.  This is their gift to me.  Thank you thank you!

As each day comes to us refreshed and anew, so does my gratitude renew itself daily.
The breaking of the sun over the horizon is my grateful heart dawning upon a blessed world.
Terri Guillemets, U.S. quotation anthologist, 1973 –

Associated Posts:

• For My Sisters
• Yesterday When I was Young
• Stop the World

Related articles

• Why I feel lucky to be American (expatedna.com)
• The Art of Appreciation (snspost.com)

The World Is Going To End

The house had been sold in record time and arrangements for her to move into the retirement facility had been accomplished without any hitch.

But now, sitting in her packed up house, Elizabeth thought “The world is going to end in three days time.”  Or at least the world as she had known it up to now.

She had moved into this house as a young bride 45 years ago and now she was to leave it behind.  She would be leaving many memories both happy and sad.  Memories of days when her children were young, the accidental death of her son and the wedding of her daughter.  These memories were shared with Charles, her beloved.  But after Charles died, life did begin to be lonely.  Her daughter had her own family to take up her time.  Her friends were moving away and the house and garden were beginning to be too large for her to manage on her own.

Reluctantly she had agreed to her daughter’s suggestion that they look at what retirement villages had to offer and which if any might suit her.  There followed weeks of looking at places that if one believed their brochures, were absolutely perfect for her, but mostly they didn’t live up to her expectations. She had almost given up hope of finding the right place.

And then one day, while at the supermarket, she met an old acquaintance.  After they loaded their shopping into their cars they went off for a coffee and a catch up.

Over coffee, Rex told her that he had recently moved into a splendid retirement village.  He had his own small house; there were plenty of leisure facilities and people of his own age  with whom to spend some cheerful time.  In return Elizabeth told him of her search for a place in which to live.  He had piqued her interest and they parted agreeing to keep in touch…..

___________________________

This is my entry in this week’s Trifecta Challenge. It follows on Fireworks an earlier entry in the Challenge.

“For the weekend challenge, we’re playing the ambiguity card again and leaving interpretation up to you.  Give us 33-333 words with this as your inspiration:

The world will end in three days.

If you want to join in, click on the tricycle above and you will be taken to Trifecta’s blog that contains all the instructions.  Do have a go.  I promise you it is fun.

Related articles

• How village life can help the elderly (bbc.co.uk)
• Golden years bring rewards (nzherald.co.nz)
• Not retiring himself, yet retirement has been his passion (theage.com.au)

A Very Strange Old Lady

I have warned you in the past how I shall be when I am old.

“I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.”

I will most definitely be outrageous, difficult and undignified but not until I am old.

Imagine my surprise, therefore, when I looked in the mirror and saw this Old Woman looking out at me.   I just had to share this other poem with you.  I don’t know who wrote it or where it’s from but it just says how I felt earlier today.

A very weird thing has happened.
I have no idea who she is, where she came from, or how she got in.
I certainly didn’t invite her.
All I know is that one day she wasn’t here and the next day she was.
She’s very clever. She manages to keep out of sight for the most part;
but whenever I pass a mirror, I catch a glimpse of her there;
and when I look into a mirror directly to check
my appearance, suddenly she’s hogging the whole thing,
completely obliterating my gorgeous face and body.
It’s very disconcerting.
I’ve tried screaming at her to leave but she just screams back, grimacing horribly.
She’s really rather frightening.
If she’s going to hang around, the least she could do is offer to pay rent.
But no. Every once in a while I do find a couple of dollar bills on the kitchen counter,
or some loose change on my bureau or on the floor, but that certainly isn’t enough.

In fact, though I don’t like to jump to conclusions, I think she steals
money from me regularly. I go to the ATM and withdraw a hundred dollars, and a few days later, it’s gone.
I certainly don’t go through it that fast, so I can only conclude that the old lady pilfers it.

You’d think she’d spend some of it on wrinkle cream.
God knows, she needs it.
And the money isn’t the only thing she’s taking.
Food seems to disappear at an alarming rate.
Especially the good stuff–ice cream, cookies, candy–
I just can’t keep them in the house. She really has a sweet tooth.

She should watch it; she’s really putting on the pounds.
I think she realizes that, and to make herself feel better,
I know she is tampering with my scale so I’ll think that I’m gaining weight, too.
For an old lady, she’s really quite childish.
She also gets into my closets when I’m not home and alters all my clothes. They’re getting tighter and
tighter every day.

Another thing:
I wish she’d stop messing with my files and the papers on my desk. I can’t find a thing any more. This is particularly hard to deal with because I’m extremely neat and organized;
but she manages to jumble everything up so nothing is where it’s supposed to be.

Furthermore, when I program my VCR to tape something important, she fiddles with it after I leave the room so it records  the wrong channel or shuts off completely.
She finds innumerable, imaginative ways to irritate me.
She gets to my newspapers, magazines, and mail before me– and blurs all the print;
and she’s done something sinister with the volume controls on my TV, radio, and phone. Now all I hear are mumbles and whispers.

She’s also made my stairs steeper, my vacuum cleaner heavier, all my knobs and faucets hard to turn
and my bed higher and it’s a real challenge to climb into and out of.
Furthermore, she gets to my groceries as soon as I shelve them and applies super glue to the tops of every jar and bottle so they’re just about impossible to open.
Is this any way to repay my hospitality?

I don’t even get any respite at night. More than once,
her snoring has awakened me.
I don’t know why she can’t do something about that. It’s very unattractive.

As if all this isn’t bad enough, she is no longer confining her malevolence to the house. She’s now found a way to sneak into my car with me and follows me wherever I go.
I see her reflection in store windows as I pass. and she’s taken all the fun out of clothes shopping, because her penchant for monopolizing mirrors has extended to dressing rooms.
When I try something on, she dons and identical outfit- which looks ridiculous on her– and then stands directly in front of me so I can’t see how great it looks on me!

I thought she couldn’t get any meaner than that, but yesterday she proved me wrong. She had the nerve to come with me when I went to have some passport pictures taken, and actually stepped in front of the camera just as the shutter clicked.
Disaster! I have never seen such a horrible picture.
How can I go abroad now? No customs official is ever going to believe that crone scowling from my passport is me.

She’s walking on very thin ice.
If she keeps this up, I swear, I’ll put her in a home.
On second thought, I shouldn’t be too hasty.
First, I think I’ll check with the IRS and see if
I can claim her as a dependent.

(sigh….. bet that strange old lady is on “her” puter too!) What’s a body to do??????

My Lot is Cast

Those of you have read some of my earlier blogs will know that I have two very dear sisters.  One lives in London, UK and one in Los Angeles, California.  We keep in touch by phone and of course, emails.  Emails are always addressed to both sisters on the other side of the world.

Phone calls are rather more rare but it is great to hear their voices.  Recently after several many futile phone attempts I connected with my American sister.

We of course, discussed many things but we always without fail, discuss books we have read and those we hope to read.  Because at that time, I had just finished reading Stephen King’s 11/22/63 I was full of this book.  Others have written great reviews of it so I wont do so here.  Maybe an idea for another blog?

My sister is a prolific reader and she shared several of her favourite authors and  books she had read with me.

She is apparently very fond of Nicola Upson’s series about detective Jacqueline Tey.  She quoted one of her favourite poem’s which came from the book “To Love and Be Wise.

“My lot is cast in inland places,
Far from sounding beach
and crying gull,
And I
who knew the sea’s voice from my babyhood
Must listen to a river purling
Through green fields
And small birds gossiping
Among the leaves”.

I don’t live in inland places – the ocean is about 10 minutes drive away, but I miss the sights and sounds of the ocean that I used to see from all the windows of my home.  It seemed that we were surrounded by the sea and it’s activities. For 15 years we lived in that house.  The children spent their teenage years there and we became almost immune to the fantastic views from most windows.  We could see not only the ocean with all its comings and goings (cruise ships, ferries, barges and tugs for the port)  but the planes landing at the airport, and the trains bringing people and goods into our capital city. So maybe this post should be headed “Trains and Boats and Planes”.

And as in this poem, now I don’t hear the crying gull when I awaken in the morning but I do hear the small birds gossiping among the leaves.  I love the thought of the birds gossiping.

I hear the sounds of busy families getting ready for their day – households waking up, newspapers being brought in, children going to school and parents to work.  The road outside my house is alive with activity for a short time each morning and then, as if a switch has been pulled, the peace descends and only those of us who are no longer living the busy years are left behind.

We have time for another leisurely cup of coffee; time to exchange pleasantries with our neighbours as we retrieve the newspaper from the drive; time to read the newspaper, complete the crossword and as I am getting older, I peruse the death notices just in case there is somebody I know mentioned there.

And so –

My lot is cast
In different places
Not beside the river or the ocean
But in the city with its life and vitality.
Not in the distant years of my youth
Nor the busy years of family life
But the peaceful years of time for me
To enjoy friends and family.
Time to investigate new things
New activities and new friends
Time to be me.

,