Category Archives: elder care

The Friday Review: September Reflections

IMG_20140804_115126

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

Advertisements

The Friday Review No 7: I’m running away

mouldings Radcliffe Camera 14-03-2014 19-38-22 2736x3648

Mouldings on the roof of the Radcliffe Camera reading rooms, Oxford.

In the last week, my husband and I have both been pining for Scotland.  Usually at this time of year we are making preparations for a holiday to the Western Isles (if we can afford it).  We happily run away to the Islay Whisky Festival, and it’s wonderful.  We were there at the end of May last year, and it was one of the best holidays of my life.

And I haven’t had a proper break since.

No Christmas, no Easter, no weekends off.  I’ve been away repeatedly, yes, but to my late mother-in-law’s house in Oxford, or to my mother’s in Hampshire.  Not for holidays, but for Doing.  In the past, my mother’s home would have been a haven to holiday, but now she has dementia, and so it has become a place of caring and problem-solving.  Not restful.

A couple of weeks ago, I had a bit of a meltdown.  I’d had enough.  No breaks, and all the emotional wreckage of the last six months had taken its toll.  My husband had just come home from his annual walking holiday in France with his pals, but I don’t have the money to do that kind of thing, nor the energy, of course.  (In fairness to him, he feels bad that he’s had a break and I haven’t.  And I certainly didn’t resent him for a much-needed and healing respite.)

Anyway, I decided enough was definitely enough.

So I’m running away.

I don’t have money to pay for a hotel or self-catering bolt-hole, so I’m going for second-best. I’m going back to Oxford for a week on my own.  My mother-in-law’s house is waiting to go on the market, so I can settle in without cost.  I shall pay for my keep by juggling estate agents and various visiting tradesmen – it is amazing the little jobs that have to be done, and someone has to be there to let people in to do them.

I intend to rest.  And read.  And journal.  And write.  And perhaps even draw.  I shall laze in the lovely secluded garden – I’m hoping for good weather.  And then there is the City to revisit.  I spent a great deal of time there in my younger days, not simply when my husband and I were first dating, but long before then, when it became a sanctuary from the emotional upheavals of my life.  I want to reclaim the city I knew then, reclaim it from the sad memories of recent years, when it was tainted by the demands of elder care, dementia and death.  I want to walk the streets and soak up the golden light reflected off the Cotswold stone.  I want to look up and see the curlicues of the college windows, the gargoyles and Classical statues, the wisteria and the laburnum.  I want to walk in Christchurch Fields, rummage in the Covered Market, and eat lunch at the Nosebag café.  I want to walk up the Cowley Road and feel the vibrancy of the various ethnic communities that have settled there.  I want to glide through the Ashmolean Museum, letting the beauty of the ages sink into my very pores.

IMG_20140804_115126

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

I want to please myself.

I want a week-long artist date.

I want to find myself again.

I want to eat salted caramel brownies at the Barefoot Café.  (Which pretty much amounts to the same thing!)

It will be a celebration of no wireless connections, with only my minimal phone data tariff to support me.  I hope I shall have enough on my slate to be able to document a few of my adventures on Instagram.  Rest assured I shall be taking lots of pictures.  But it will be something of a relief to be somewhat incommunicado for a while.

I have a journal project that I intend to undertake.  I have been planning it meticulously for a while.  I don’t know whether I shall be able to pull it off, but I promise to report at length when I get back.  And share my strategy so that you can have a go too, if you like.  But I’ve got to test it out, first.

I have a mountain of books to take with me too.  Research for my current writing project, though I might give myself a week off that.  A couple of novels.  Books about creativity and writing.  And no doubt, being Oxford, with Blackwells, and the Oxfam bookshop, I shan’t escape the week without buying a few mores.

And a pile of notebooks are going with me too. With lots of different pens, and a glue stick for ephemera. I plan to soak up the LOT!

It’s going to be quite an adventure.  Wish me luck!

Happy Creating,

EF

Twelfth Night

img_20170104_123143

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

paintbox

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

Welcome to 2016

Dear all,

Well, here I am, settled in front of the fire, with the Christmas tree still twinkling behind me (I don’t take mine down till Twelfth Night), resting in the stillness of a grey afternoon.

For once, nothing to do, and nowhere to be.

There are a few SHOULDs rattling my cage, but I am choosing to ignore them right now, and rest in the present moment.

Because there hasn’t been enough of that lately.

I was horrified to find that I hadn’t written a post on this blog since Samhain, but not really surprised.  You see, 2015 was that kind of year.  It was relentless.  Caring for declining elders with dementia at a distance, coping with my own health problems, and Husband’s.  We spent the second six months of the year basically just surviving.

I want 2016 to consist of more than just surviving.

I don’t have a Word for 2016 yet, but I suspect its going to be something like Thrive, or Flourish.  The one I had for 2015 was EASE, and frankly in the end, it reduced me to sarcastic laughter.  It gets like that when you don’t know when the next disaster will turn up, when the next phonecall from the paramedics will come.  We’ve lived on eggshells for too long.

In 2016, I want to stop drowning. I want to ride on top of the wave for a change.  I can’t stop the wave, of course.  Life is happening.  Nothing I do is going to change the situation itself. But I can change how I relate to it.

For 2016, I wish the same for you.  I wish you peace.  I wish you calm. I wish you acceptance of the things you can’t change, and the strength to change those you can.

Most of all, I wish you what I have lacked in 2015.

I wish you hope.

Happy Creating,

E

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