Tag Archives: dementia

The Friday Review: September Reflections

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Andrew Gormley sculpture on top of Blackwells Art shop in Broad Street, Oxford.

Today is the first day of meteorological autumn, and it feels like it out here in Darkest Norfolk, where the nights have suddenly become chilly, and the elderberries are hanging in heavy, bloody bunches in the hedgerows.  It marks the end of a summer we have barely experienced, and not just because of the weather, which has, frankly, been ruddy awful here.

At this time of year I am inclined to be reflective, and this year all the more so, since at the end of the month I will turn 50, an age at one time I seriously never thought I would reach.  The same day will be the first anniversary of my mother-in-law’s death, after a long struggle with dementia.  There’s a lot to think about, as you can imagine.

This summer, I haven’t been very present on this blog for many reasons.  We’ve been in the process of clearing out mother-in-law’s house, ready for its new owners to move in, which has been a long and arduous project, requiring a great deal of travelling, complicated emotions and memories, and an uncountable number of visits to the city dump and various charity shops.  I won’t bore you with the details except to say that two old ladies living in a large three bedroomed house for 28 years can accumulate A LOT of STUFF.

In the midst of juggling estate agents and solicitors, my husband was called in for a routine hernia repair operation, which went well, but immobilised him for a period.

Then, inconveniently in the middle of his recovery, I went down with what was subsequently diagnosed as Menieres disease, a condition of the middle ear which causes tinnitus, pain, hearing loss, debilitating balance problems and bouts of vertigo.

Anybody who thinks vertigo is just being scared of heights needs to be corrected.  It is when the balance mechanism in your inner ear goes haywire and your brain can’t orientate you in three-dimensional space.  The result is like having your head in a washing machine.  Vomit-inducing.  Try having a bout of that regularly for six weeks, and I think you’ll know why I haven’t been writing much.  Thanks, however, to the wonders of modern medication, I am now able to function like a normal human being again, an unbelievable relief.  I have even got my hearing and ability not to walk into large pieces of furniture back!  The fear that I might never hear again, that I might lose my balance permanently, has also faded.  Which is nice. And my husband is fully recovered, so that’s nice too.

My doctor told me she didn’t like the term ‘disease’ when she diagnosed me with Menieres.  She said it didn’t accurately describe the condition.  For me it described it perfectly.  The dis-ease within my skin.  The sense of being unbalanced, literally and metaphorically, as I negotiate this transitional phase of my life.  The stripping back of the extraneous.  There was no energy for anything unnecessary.  No energy spare for anything other than the basic functions of life.  Standing up.  Lying down.  Walking.  Eating. Sleeping.  Seeing.  And most demandingly of all, hearing.

It is amazing how, when life is cut back to the bone like that, when things you take for granted suddenly become unstable, lots of things simply are no longer worth the effort, and some are even intolerable.

I am no longer inclined to take any shit.  I am no longer inclined to care what other people think.  I am no longer willing to tolerate a victim mentality, either in myself or others.  I am no longer willing to do anything but be grateful for every minute of every day.

Yes, Menieres changed me.

The last year has been spent in the aftermath of Alzheimers, midwifing my husband through his grief, and coping with my own mother’s diagnosis with the same disease, an event which rocked my world off its hinges completely.  The trauma of caring for someone with that horrible affliction cannot be underestimated.  I am still dogged by the memory of my normally affectionate and amiable mother-in-law screaming down the phone at me that I was a thief and a liar, and in league with a secret government organisation that was trying to kill her.  Such memories are not easily processed.  By the end of this month, the house in which she spent her final years will be moving into new hands, and we will no longer have to face the feelings of dread driving into the village, which came from our weekend visits to care for her, not knowing what fresh dramas awaited us.  Not having to drive up that road any more will help, I think.

Alzheimers changed me.

This time last year, another life changed radically too.  My niece Phoebe was diagnosed with cancer, a rare and most serious kind that caused catastrophic blood clotting so desperate that her leg had to be amputated.  Her courage in learning to walk again, facing many surgical procedures, and now conventional chemotherapy after the months of oral chemo she has already been through, continues to astound me.  I’m sure she wouldn’t say she was being especially brave.  She is 32 with a lovely husband and two little children to live for.  She just wants her life back.  To me she is an inspiration.

Cancer has changed me too.

Through all this I have written, even if somewhat intermittently.  I have written in my journal, doggedly trying to stay sane through its ink-stained pages.  I have scribbled many writing practice sessions.  I have reflected and plotted in my writing notebook.  I have rediscovered myself after the blinding snowstorm of caring for my mother-in-law, and managed to cling onto myself in the subsequent whirlwinds of Menieres and family problems.  Through writing, I have remembered who I am, and then discovered I am more than I thought I ever could be.

And that is where I am now.

Changed.

I am not sure this chrysalis phase is over yet.  There is plenty more change to be negotiated, not least my own mother’s decline.

But just now, things are stable. Optimistic.  Grounded.  And, thank goodness, not spinning!

So I begin September, my birthday month, hopeful, and in the process of transition.  A transition that I hope to share with you, dear reader.

Thank you for sticking with me.

Happy Creating,

EF

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Twelfth Night

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Taking down the decorations

This is the part of Christmas I hate.  The clearing up.

Today is the day for taking the decorations down.  If you leave them up any longer, its supposed to be bad luck.  And since I don’t want any more bad stuff in my life for a good while, I’m diligently stripping the tree, just to be on the safe side.

Once all the cards and baubles are gone, the place looks rather sad and naked.  Empty.  You can see where all the dust and cobwebs have built up.  (I’m leaving the hoovering and dusting till tomorrow, so I don’t use up all my strength in one day.)  It looks especially empty this year because we made such an effort to bring that Christmas magic back into the house.  The first annual holiday without a loved one (in this case, my mother-in-law) is always a tough one, and especially so for my Husband this year, because his mother was such an enthusiast for the season, such an integral part of the family’s celebrations.  We had to make a particular effort to reclaim it not only from grief, but from the difficult memories of the last few Christmases spent in the shadow of her Alzheimers disease.

I think we managed it (mostly).  At least, I’m pretty sure it could have been a lot worse.  And when I came downstairs one evening and found him lying on his back on the sofa, gazing at the twinkling lights on the tree and listening to the soft music of Vaughn Williams, relaxed for the first time in months, I decided we’d found a reasonably happy medium.

Now the Yuletide festical is over, and we have to face the stark reality of a future year, the uncertainties of Brexit and Trump, as well as clearing out and selling the home of a loved one.  However, I don’t feel as desolate as I thought I would.

I always said I was a ‘glass half full’ kind of person.  You know the old adage, the one about looking at a glass with some water in it, and choosing to be optimistic about there still being something left to drink, or being pessimistic about the fact that its half gone.  The joke I heard recently about, ‘well, there’s plenty of space for more vodka’ seems to chime with how I feel today.

The house may feel bald and empty, but now there is space to fill it with new things.  Good things.  Things we can choose together, not the baggage of caring for someone with dementia, of watching her suffering, and of our own powerlessness to help.  There is new opportunity in the space that is left, both by the decorations and the lifting of the burden of caring.  And we get to choose what we fill it with.

Which is quite exciting when you think about it.

(Think of all the writing and painting I’m going to get done!)

So don’t look at your dusty, de-Christmassed home in dismay today.  Look for the gaps in between, the space for possibility.  Don’t mourn the loss of Christmas.  Think to yourself, in your best Mary Poppins tone, ‘well, what shall I do today?’

Happy Creating,

EF

Pivot Points

Let me tell you about the Marie Antoinette watch.

Its said to be the greatest watch ever made.

One day in 1783, an admirer of the French queen arrived at the workshop of Adam-Louis Breguet, the greatest watchmaker in Paris.  He wanted the perfect watch for the perfect woman.  His commission was to be without bounds.  Breguet was to pour everything he knew into making the most complex, and most beautiful timepiece possible.  Money was no object.

The watch became Breguet’s obsession.  Even after the French monarchy fell, Marie Antoinette was executed, and the lucrative business he had built from the commissions of the aristrocracy was in ruins, Breguet continued to craft his masterpiece.  Ultimately, it took forty years to complete, and had to be finished by Breguet’s son, four years after the master himself died.

Known officially as the Breguet No. 160 Grand Complication, the watch contained every function known at that time – Breguet even invented a few new ones.  It was crafted in precious metals and gems.  Breguet used sapphire for all the mechanical pivot points in the clockwork, in order reduce friction.

And its these sapphire pivot points that fascinate me.

Because I’m at a pivot point right now.

You will have noticed in recent months that this blog has become fairly, if not completely, dormant.  Life has, as it were, taken over.  There was no space to write.  No space in my life.  No space in my head.

Then, in September, on my birthday ironically, my mother-in-law died.  Her dementia had been filling up all the space in my brain and in my life.  Since she has been gone, I’ve begun to recollect not only who I am, but also all the activities that had been shelved and forgotten in order to look after her.  So many things I wanted in my life had fallen away, out of necessity.  And so many things now seemed irrelevant.

In the last few months, I know that I have changed not only profoundly but also irrevocably.  So much more has been happening than simply looking after my ailing elderly relative – things which are someone else’s story to tell.  And yet they, too, have had a hand in my transformation.  My life has been like a pack of cards, being shuffled by the Hand of (insert your favourite deity/scientific motivator here).

The day my mother-in-law died was a beautiful day.  The sun shone.  The sky was a perfect sapphire blue.  I stood outside the hospital foyer with a soft, warm wind on my face, and knew that I had reached one of Breguet’s pivots.  Wasn’t the sky exactly the right blue, after all?  And does not sapphire reduce friction?

The friction of life with Alzheimers is gone.  The cards that were thrown up into the air have fallen back down in a new order.  The things that seemed important then are irrelevant now, and vice versa.

Now the funeral is over, now the first shock of grief has passed, I find all I want to do is write.  I want to write something profound.  I want to write because I have changed.  I want to write something real.  Something hard.  Something pivotal.  My own sapphire pivot point.  So I am writing.  By hand in my journal.  In notebooks, longhand.  Using Natalie Goldberg’s wisdom as my map, I am steadily shuffling my way towards the light.

I hope I am making my own ‘Grand Complication’, out of the precious metals and gems of my own life.  I hope you will join me on my journey.  And I hope it won’t take me the forty years it took Breguet!

Happy Creating,

EF

Sometimes I forget

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You may think things are quiet here at Evenlode’s Friend.

Well, I suppose they are, on the website at least.  Not inside my head, however.  Not inside my life.

I haven’t been writing much here lately because, well, I’m going through another growing phase.  By which I mean, the shit really hit the fan again.

Sometimes you need to take time off for your life.  Sometimes you need to remember to take care of yourself.  And thats what I’m doing at the moment.  Intensively taking care of myself, and Husband, who was recently diagnosed with coeliac disease, almost a year since he was told he had diabetes.  This, along with coping with dementia caring, and my own health issues, has rather forced my hand.

Sometimes you need to take the time to devote everything you have to healing.

And the really odd thing is that this morning, I was reading an article about creative blocks (which sadly now, I just can’t find) and I thought:

I’ve forgotten how to do this.

I’ve been so focussed on healing my life that I’ve forgotten my creativity.  I’ve been so immersed in studying nutrition and recipe books, delving into spirituality and psychology, chanting mantras and ploughing through academic papers on brain degeneration in Alzheimers patients, that somewhere along the line, I’ve forgotten how to write.

Forgotten how to create.

Something new.  Something unique.  Something mine.

A creation that is truly of my soul.

Of course, I haven’t forgotten.  I still tell myself stories at night as I fall asleep.  The stories of love and redemption that comfort me in the midst of the storm, enough to enable me to believe that there is something good at the other end of all this.  Because I’m an old romantic at heart.  Because I believe that there has to be hope.  Because I believe that a hug makes everything better.  Even if its only a hug in a story.

But holding a pen?  A crayon?  Conjuring the contents of a new character’s pocket or handbag? Wondering why a character might take a tennis racket on a train trip to Switzerland in 1947?

Where did that go?

Cue that slightly dazed feeling that something is missing, like a limb, but you can’t quite work out where is has gone, or how, or even when.

I know that what I am doing right now is deeply necessary to my future wellbeing, and that of Husband.  I know I need to step up to the challenges that face me.  I need to delve deeply into my Unravelling.

But I don’t want to do what I did this morning, and sit there, staring at a photo of coloured pencils on a blog post, and feel a yearning that took my breath away.  Somewhere in all this, there has to be space to create.

Sometimes, I forget.

But from now on, I intend to remember.

Happy creating,

EF

The Annual Samhain Post

This year's haul of jack o' lanterns, carved by the Husband

This year’s haul of jack o’ lanterns, carved by the Husband, with lanterns and baby pumpkins decorated by Lottie and Michelle.

Dear Friends,

On my old blog, I used to celebrate Samhain every year with an annual post, looking back over the previous year and looking forward to the coming one.  A kind of taking stock.  Most people do that at the turn of the calendar year, but we Pagans tend to do it at Samhain – or Halloween – as well.  And it struck me today, in the wake of a serious pumpkin-carving and trick-or-treating with my little god-daughter last night, that such a tradition might still have some value.

In Review then:

My ongoing absence from this space lately should tell you all you need to know.  We continue to struggle with elder care, and the stress it involves.  Just when you think things are settled for a while, another crisis arises.  My poor Husband is skating perilously close to the limits.  I try to support him.  Between us, we attempt to do our best in a situation in which there is no answer, no magic wand, no way to be right, or to even be appreciated for our efforts.  The best we can hope for is that in years to come, we will will at least be able to sleep at night, in the knowledge that we did everything we could.

As an antidote to all this, I have set to work on remaking a novel from an idea I came up with years ago, in the hope that it will give me something productive to focus on for myself, something outside the ‘wrinkly situation’.  After an enlightening session with a great Life Coach, I’m trying new approaches, new ways of thinking, new ways of working.

And honestly?  Its fantastic!

No matter what is happening, this delicious landscape is chuntering away in the back of my skull, building up details, accumulating momentum, reminding me constantly of who I am apart from my situation.  I am doing something for myself.  I am doing something that gives me enormous pleasure.  And it feels great.  (More to come on that project in future posts!)

So much has changed for me in the last 10 months.  My choice of the annual word ‘Ease’ turned out to be laughable – I haven’t had any!  Oh, but I am so much more easeful in myself in countless ways.

Giving myself time off, allowing myself space to grow, has enabled exactly that.  I can see my writing, my creativity, and my very self in so many new ways.  I truly have grown.

And now for something completely different?

No, not really.  More of the growing, changing, evolving, I hope.

Less of the stress in future, I hope, now that professional care is in place for the elders.  Things aren’t going to get any better, but I hope that I can give up fighting reality, wishing things were different.  Accepting where we are seems to be the only way forward at this point.  Giving up struggling against the situation means having more energy to put into what can really be helped and changed.  And into looking after myself and my man, so that we come out of this with at least something of our sanity intact.

More investing in myself.  More self respect.  Stronger boundaries.  Taking less shit (ie “don’t fucking ask me how I’m going to make money out of this damned novel when I haven’t even finished writing it yet!  Can’t you see that its the PROCESS thats important, not the bloody money that may or may not come at the end?”)

And more journalling.  Lots and LOTS more journalling.  Because it is an outlet for all the feelings.  And in this situation, there are LOTS of feelings.

In the meantime, I am in the process of remembering how to write again.  I’m rusty.  My fingers are stiff.  The words are clunky, the metaphors are tired.  I need to practice, strengthen the muscles, write every day, do a little bit, often.

And reading.  Lots of reading.  Because as writers, we learn so much from our peers.

I’m changing.  I am different even to the person who wrote the last blog post here.  Next time, I think I will be different again.  But if we do not evolve, we die.

And as for Samhain:

Dear friends, I wish you a peaceful, happy Samhain.  May your ancestors gather around you in love and support.  May you step out on the path of peace and creativity in the coming year.  May you know yourself, and find peace therein. May you find healing.  And may your path be strewn with joy.

with love,

EF

Word of the Year 2015

sussex churchI am quietly resting tonight in the post New Year’s Eve Exhaustion space. You know the one. Everything hurts, you’ve had very little sleep, you’ve eaten far too much rich food, your jeans are cutting you in half (didn’t they fit just right this time last week?), and tomorrow you will fall into that Chasm of the Unknown which is 2nd January when there are no more excuses, the holidays are over, and you have to get back on the bike of normality.

Yeah, you know what I’m saying.

(I wouldn’t mind so much, either, but I don’t even drink! Husband did all the booze last night, and I woke up with his hangover. It’s just unfair, especially when he is all bright-eyed and bushy-tailed, and bouncing around the house with our god daughter, teaching her how to be Gandalf stopping the balrog in the mines of Moria – at 10am? I mean, puh-leeeeeze!)

This is that annoying time of year when all the bloggers on the interweb seem to trot out their reviews of 2014, with accompanying pictures of their glamorous lives, glamorous friends, glamorous spouses, glamorous homes etc etc.

I can’t remember much about what happened in 2014 because I am still recovering from it.

It was a tough one. Christmas especially. It has been dominated by the stress of caring for two very elderly, very frail parents-in-law, one of whom has stage two dementia, and at a distance. There have been the falls, the hospital visits, the fights over carers, the distressed phone calls. We’ve been learning new nursing skills, dealing with social workers, pharmacists, medical practitioners, and a national health service that seems weirdly incapable of taking account of the needs of those with dementia, even though the elderly are their primary client group. All this, trying to keep our own lives running, expanding the Husband’s business, and managing my own ill health.

The last two years have been periods of extreme growth. My word for 2013 was REVOLUTIONARY. My word for 2014 was DARE. Both pretty heavy-duty action words. I felt like I needed to step up to the plate, to make big changes. But after all those revolutions and fear-facings, I am just utterly exhausted and drained. I need something gentle this year.

So my word for 2015 is EASE.

I want to be at EASE with myself. I want to get to know myself better, to feel authentically me, to feel more settled and confident in myself instead of constantly pushing at the edges, as I have been.

I want to be at EASE in my creativity, not to be forcing it, but rejoicing in the work I make, whether it is a new story or novel, or a piece of needlepoint, or a favourite recipe. I want my work to be rich, jewelled with the unusual, and deeply infused with peace and contentment.

I want to EASE into my life more, to spend more time nurturing myself, working out what I need to get through what will undoubtedly be another tough year. I need to be gentle and compassionate with myself.

I want to have more EASE in my life – less pain, more comfort, and a more comfortable environment. There will be nesting, creating, new healthy eating recipes, yoga and pilates (gently) and lots of mindfulness. And, hopefully, a holiday.

Most of all, I want to be at EASE with and in the present. I want to accept where I am right now, at this turning-point.

This year, Husband will turn 50, I will continue my journey towards menopause, and we will likely be saying goodbye to those we care for in some form, whether it is completely through death, or mentally, as a beloved parent passes into the mist where she will no longer recognise us in any meaningful way. I want to be able to support Husband as he midwifes his mother through this endtime. I want to help us move into this second half of our lives with optimism, health and peace of mind. I want us to EASE into this new phase with hope and positivity. I want us to have something beautiful and vibrant left after this time of caring is over, not simply wreckage and exhaustion.

I can’t say I relish the prospect of 2015, as elder care eats more and more into our lives. But I intend to do what I can to see that it is as much an enriching process as it can be in the circumstances. I look forward to exploring myself, my spirituality and my creativity in the face of these ongoing demands. I don’t know what will come out of it, but I know that it will be something deep and wise.

I wish you a happy, creative and fulfilling 2015,

EF

Tales from my Weekend

Capture the moment.

Capture the moment.

Dear friends,

I’m sorry you didn’t get a post from me yesterday.   I was doing my elder-care weekend.  Once a month, or sometimes twice a month, depending on circumstances, we trek across the country to care for Husband’s mother and aunt (who live together). This time I made a few notes in my writers notebook, thinking they might be useful starters for writing exercises:

  • A weekend of fabulous sunsets and endlessly varied cloudscapes.
  • A red kite swooped down into the garden to scavenge the chicken bones left over from Sunday dinner, as I perched on the back step a few feet away, reading the newspaper.
  • Learning to manoevre a wheelchair –  its a lot more difficult than you think, especially inside supposedly  ‘disabled’ toilets.  And garden centres.  Note to self – the aisles are always narrower than you think.  Especially round the orchids.  Perhaps they just want to capture you there, so you’ll spend more money, I don’t know.
  • I lost my mother-in-law in Sainsburys.  She walked off.  She has dementia.  Now I can imagine  just how terrifying it is to lose a child in a supermarket. (We found her again in the end.)  Note to self: find a way to attach mother-in-law to aunt-in-law’s wheelchair at all times.
  • A wheelchair is a heavy thing:  discuss.
  • A kind lady came up to us and said hello.  Just because.  People can be friendly just for the sake of it.  The world is not such a scary place as we think.
  • Old ladies want to feel pretty too.  Aunt-in-law asked me to spray her with scent from an old bottle of Guy LaRoche that she had tucked away, so she would feel confident when she saw the doctor.
  • A friend’s dog escaped and she snapped her achilles tendon whilst chasing after it.  Just before her impending annual holiday and her daughter’s graduation.
  • My niece’s husband teaches Wittgenstein to his year 12 students.  I think he is brave.
  • Coming home, the sky was full of a just-past-full moon, an orange disc slashed with shards of inky night cloud.
  • Bacon.  No, you don’t need to know anymore.  Bacon is all you need to think about.
  • Hugs.  Hugs make everything better.  Even if you’ve heard the story about the man walking into the plate glass window 18 times in the last ten minutes, hugs always help.

My thanks to Phoebe and Sam Grassby, Mike and Debbie Bracken, Betsy, Maria, Dr Finnegan and the unknown lady who came up to us in Sainsburys, Kidlington, for making the world a better place.

Happy creating,

EF