The pity face

The pity face.  It’s not for me.  I am sure that people genuinely are trying to say they are sorry.  But it’s not for me.

 

When faced with it, in my head I give them an Ally McBeal face slap with an enormous scaly, wet fish.  In reality, I smile, thank them and move away as quickly and as politely as possible.

 

I don’t need or want pity.

 

My Mum had an amazing life for at least the last 44 years and the years she lived in Switzerland as a child. She has travelled extensively with my Dad since he retired… she saw whales in the Arctic (or Antarctic – not sure which!), swam with dolphins in Australia (her biggest dream…), she skied, she skied a lot, holidayed in Europe, a lot, went to the Galapagos and chatted to the turtles, saw every National Trust property and garden as humanly possible (she even saw Hogwarts!), she ‘did route 1’ or at least the best bits when James and I were travelling.…. She saw the Pyramids, went down the Nile and was nearly exchanged for 50 camels (my Dad turned down the offer!).  She saw the world, she experienced the world.

 

I don’t need or want pity.

 

She had a wonderful marriage with my Dad… they were very happy together.  Mum’s flamboyant, highly emotional, creative character was Ying to Dad’s calm, practical, hardworking Yang.  She created a beautiful home and delightful haven of a garden.  She had 2 longed for daughters, who gave her teenage and adolescent grief but far more joy and happiness, especially when they gave her grandchildren.  She saw love, she created love, she experienced love.

 

I don’t need or want pity.

 

She had no quality of life left at the end.  She hadn’t really had any quality of life for the last few years. She lived in a state of paranoia, frustration, anger in the last year or 2 at least.  For the few years before that, confusion.  A few weeks ago, even she didn’t like the look of her future; a future in a home, lying in a bed or sat in a chair, being spoon fed puree and wearing tena pants.  She didn’t like what she saw and she decided it was time to go.  She decided to put us out of our misery, watching her degrade. She decided.

On Tuesday 26th January, the Social Worker and my Godmother (retired nurse, midwife, all round health guru) went to see my Mum… and they agreed Mum had the look of someone who had decided enough was enough.

On the Wednesday, my Dad was with her alone and they said their goodbyes.  Apparently she made signs that she wanted to be held, to be kissed; a lot.  My Dad only realised he was crying as he left … he knew she was saying goodbye.  She didn’t look at him again.  Not once. She held mine and Bambi’s gaze but never Dad’s. Maybe if she had have looked at him, she would have changed her mind?

On the Thursday, the doctor determined that it would be dangerous to feed or give water to my Mum for fear of choking or drowning her. Realistically, someone in good health can survive 7 days without water. He called the ‘end of life situation’ but it was my Mum’s decision.  And she decided to hang on until their wedding anniversary, 6 days later. A final act, declaration of love for my Dad. She decided, she was in control, she made her choice to go.

 

So I don’t really need or want pity.

 

I know I am not looking at my best.  Grey, dark circles under my eyes, sometimes red or pink, no make up.  Wearing gym kit despite not doing any exercise. Puffy from wine and too much sugar.  If I do catch myself in the mirror which isn’t often… I know I am not looking my best. (I don’t like mirrors.  Always hated them.  In my eyes I always look fat and ugly, big thighs, wobbly arms, podgy cheeks..  I am careful what I say to my boys about how they look, always positive.  When I look in a mirror I still hear what my Mum said to me as a teenager… She was being protective, honest.  But I still hear it.  Maybe that is why I am fanatical about exercise and health, eating well and looking after your body.  I am working on the voice from the mirror but it is serving my health well!)

 

If I saw me, I would probably give me the pity face too.  But I don’t want pity… It just reminds me that I have lost my Mum and their pity makes me think that they think I should be sad, miserable, grieving…. The pity look makes me feel guilty, not better! The pity look makes me feel guilty for being out and about, for living…  Even if I was crying publicly, I wouldn’t want pity – it would just make it worse.  And when someone says, ‘I know how you are feeling…’ No you don’t!  You absolutely don’t. Even if your Mum has died, it’s my Mum that has died now, last week!   Grief is private.  Grieving is private.

 

I really, really, really don’t need or want pity.  There is no room for pity in my private, heart felt grief.  I am sad, but I am also grateful, focussing on remembering the good times, happy memories.  I am sad, but I a cognisant of the fact that she is in a better place – her mountains or fields of glow bugs.  I am sad, but my so happy that my boys did meet their Granny, that I had a lovely Mum and I had her for 40 years.

 

A pat on the shoulder, a fierce hug, a big smile with love and empathy, fine… but just not pity look.

 

fish slap

PS.  Anyone who has read ‘Drop the Pink Elephant’ (brilliant book)… I really mean it… I am using the ‘don’t’ as an emphatic… an emphasis!  It is not silent!

 

Gratitude in the darkness

When I fall in to the darkness of bad thoughts and feelings.. and when I have a blank sheet of paper in front of me on which I have nothing nice to say or good to share, I have trained myself to think of the things I am grateful for in that day, that moment.

 

If I think initially – like right now, there are none – I always tell myself there are at least three… my breath in, my breath out and my mind that remembered those 2!

 

And then I look around… there must be something else?

 

I am grateful for the glass of red wine, medicinal, to ease the tension in my shoulders, help me sleep, obliterate the sad images, sounds and feelings of today.

 

I am grateful for the photos and video messages that the boys sent me to cheer me up tonight.

 

I am grateful for the Big Man holding the fort in Yorkshire, even if it is all ipads and pasta pesto… I don’t know that for sure.. but even if it is, I am still grateful.

 

I am truly grateful for the incredible, kind, gentle and caring staff keeping vigil over Mum tonight and for everything they do to keep her comfortable around the clock…

 

I am grateful for every last twitch of a smile, hint of a kiss, hold of her hand, for each rattily breath Mumbo takes and for each choke she manages to live through..

 

I am grateful for all the lovely people and friends who have taken the time to reach out and send messages of love and thoughts to me, my Dad and my sister…

 

I particularly liked this poem, sent to me by the boys nursery Nanny and babysitter when they were tiny babies:

 

TWO MOTHERS

I had two mothers – two mothers I claim;

two different people, yet with the same name.

Two separate women, diverse by design,

but I loved them both for they were both mine.

 

The first was the mother who carried me here;

she gave birth and nurtured and launched my career.

She was the woman whose features I bear,

complete with the facial expressions I wear.

 

She gave me memories which follow me yet,

along with examples in life which she set.

As I became older, she some younger grew,

and we’d laugh just as mothers and daughters can do.

 

But then came the year that her mind clouded so

and it seemed that the mother I’d known soon would go.

So quickly she changed and turned into the other –

a stranger who dressed in the clothes of my mother.

 

Oh, she looked the same then, at least at arm’s length,

but she was a child now and I was her strength.

So we’d come full circle, we women three –

my mother the first, the second, and me.

 

Now if my own children should reach such a day

when a new mother comes and the old goes away,

I’d ask of them nothing that I wouldn’t do –

love both of your mothers as both have loved you.

 

Joann Snow Duncanson


    

 

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Taking 5

Just having to take 5.

Taking 5 to take stock and appreciation of life.

Life is fleeting.

Time flies.

 

Today I woke in my old bedroom after such a deep sleep….

Today I had breakfast made for me… homemade stewed apple (made by Dad!) and yoghurt..

Today I went for the most beautiful run, frosty, fresh…

Today I laughed out loud at my favourite road sign…

Today I saw my favourite Aunt… we ate biscuits and giggled like we did when I was little..

Today I saw my Mum, she wouldn’t let go of my hand.

Today I had coffee and cake with my Dad.

Today I had gorgeous giggles with my next favourite 2 blond boys..

Today I had cuddles from one of my oldest, closest friends and business partner..

Today I saw my boys on facetime, laughing and happy..

Today I had long chats about the future with the Big Man, exciting times ahead..

Today I am being welcomed for supper to someone I don’t know…

 

Just taking 5.

And appreciating the small things.. the seemingly insignificant things that make a numbing day in to a wondrous one…

 

 

 

 

The little jeweled box

The little box..

While on holiday with my Dad and sister in Cornwall over half term we had many discussions about Mum and how we felt…   My Dad is by far the best at coping, dealing, managing with the sadness, loss, change… Maybe it is because he has had longer to come to terms with the demise of my Mum’s brain, her personality, her… having lived with it daily for many years…

One evening, I asked him how he managed to stay so positive and focused on the future, without feeling guilty or letting the grief overwhelm him as it was me. What could I do,  so that I could focus on getting my life back on track and being the best version of myself, to being the best mother to my boys, the caring wife, the brave, fearless and professional business owner… so that I could get back to being myself, my positive self, the optimist, happy, full of vitality and spirit.

He talked about a box.

He puts ‘Mum’ in a box.

And every now and then, he will allow himself to open the box… either when he is visiting her, or in quiet moments at home.

He will open the box and think of her – and smile at happy memories.

He will open the box and think of her – and allow sadness in.

He will close the box of Annie. And open the box of the life of John, Dad and Grandad and fill it. Fill it with adventures, of ice creams, silliness and cricket, rugby or tennis… making new friends and having fun.

This is a technique I started to apply on hearing about it. For Mum has been floating around my head like a ghost and interrupting everything in the life of Ali.

I am getting better. I tried to put Mum in box. At first the box was too small. Too plain. She wouldn’t go in. So typical of her. She never did want someone wanted her to do, if she didn’t want to do it first.

So I have covered it in diamonds and pearls. Her favourites.

And filled it with chocolates – Swiss. It had to be. She only ever ate Lindt. Anything else was inferior.

And filled it with kittens – Siamese kittens. Soft, silky and squeaky. Her babies.

She is going in more frequently now… a little less stubborn. And she is staying in her box more too.

I am finding I have control of the box, rather than her having control of my mind.

I can go to the box at any time and open the lid to check to see if she is ok. Sometimes, she is sleeping. Sometimes, she just looks up and smiles while playing with the kittens and waves to let me know she is ok.

Sometimes she invites me in for a chocolate. The sweetness of her treats, softens the bitterness of the memories.

Sometimes, I stay a while and let the memories float across my mind. The first time she picked me up from boarding school… I couldn’t see her in the crowd… only Dad with his wonky walk in the distance… but before I could get to him, being swept up in her arms and smothered with kisses, love and the smell of her Fendi perfume.   The time she first held Tom… pride and love oozing from every part of her. The same memory tinged with sadness as I know she would be so proud of Tom now.. and Willy.

Sometimes, the painful memories creep in and I have to close the lid… The last time she came to Yorkshire and Tom flying out of the classroom door and in to Grandad’s arms… Mum not knowing who they were… and the realization that this would be the last time she saw them and the boys had her in their lives. And always the haunting memory of her face against the window pain, rattling at the door, trying to follow us out of the mental hospital.

I softly close the lid of the jeweled box and let her get back to her kittens and chocolates.

I softly close the lid of the jeweled box of Mum and go back to my life and know that I can visit whenever I want to, need to and would like to…

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CIS:LOAN:GILBERT.413-2008

The art of finding the hyacinth..

a weed is just a flower

As I had a quick scroll through facebook posts this morning, and an image with a quote saying ‘A negative mind will never give you a positive life’. And I had to comment… share my thoughts about the concept of ‘Mental Gardening’: a beautiful garden only remains beautiful, if consistently maintained, fertilized, loved and cared for.

Yes, you can blitz it every once in a while, but if you leave it, it will soon become overgrown with weeds and brambles again, strangling the life out of the good plants and flowers. It is an onerous task to dig up and re-plant an entire garden. Therefore, the concept of mental gardening refers to the daily maintenance of your thoughts, the weeds and brambles the negative thoughts, the maintenance being the ‘weeding’ out of thoughts that don’t serve you and the fertilizer the way in which you feed your mind with positive thoughts and feelings.

A comment back made me think this through further and as I walked along the river and through the woods this morning, scenarios played in my head…

There are many types of gardens… and we all have our own personal images of the idyllic garden. For me, my favourite garden is my Godmother’s … a beautiful English country garden, overgrown with roses of every colour, height and smell… a long meandering garden, with hidden corners, trellises, dark and mysterious in some parts and light and warm in others… with the fairies at the end of the garden behind the compost heap.

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I compare this with Mr OCD’s perfect garden: regimented, perfectly straight mown lined lawns, trimmed box hedges, clipped, tall arrow fir trees, mainly green but with a few, simple coloured flowers that would have to be in rows and planted in total symmetry.

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Does this reflect our differing minds and mentalities? My mind overgrown, a tangle of thoughts, feelings, a beautiful, interesting mélange, perfect…   His, structured, neat, perfect….

I can see us both walking in our own gardens at peace… James standing tall, walking proudly, nodding at the perfect lawns, surveying the future clearly laid ahead of him…

And me, smiling, wonderous as I wander along the path, bending under branches of low apple trees, smelling the roses, excited to discover what is beyond the next gate.

My country garden would definitely have weeds, for some are beautiful…. I love daisies, poppies, clover, dandelion puffballs.. the fields and acres of Swiss mountain wildflowers of my childhood… silvery edelweiss, fields of blue gentians and sunshine primulas…

So that begs the question – do weeds provide a purpose too? Are they just as important and nutritious to keep our soil fertile to allow the true flowers and plants to grow?

I look at some of the weeds in my mind – the sad thoughts I have about my Mum… If I was to pull out those weeds, strim them down… would something worse grow in their place? Would they be replaced by more harmful weeds, nettles and the guilt of not caring? For that would surely sting more than reflecting on the sad, pretty cluster of daisies, representing the memories of my pretty Mum.

As we walk along the river bank, there is a large patch of ground covered in brambles, leaves, woodland weeds…. And sprouting in the middle, right in the middle is a beautiful patch of bright pink hyacinths. How perfect. To me this represented a mind that is in despair and it made me think of a few close to me whose mental garden could be reflective of this image. For in amongst every overgrown, strangled, desperately bland garden, there can always be a little patch of beauty… the quest is to find it… and focus on it. Find the joy in that small, pretty flower, fertilise it, water it and watch it grow… for like the hyacinths it will grow and spread and soon become a carpet of beautiful flowers, taking over the painful brambles and nettles.

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Just a girl in a pink jumper and the fish necklace…?

IamMore-2013-July8

I am on the train going home… another Grand Central. This time it is packed! It’s the grand exodus from London to the North…   I wonder if there is anyone else playing the ‘Who are they game?’… I wonder what they would say about me?

Would they guess the truth? Could they guess based on the clues…?

Would they guess a Mum of 2, wife of 1 big Yorkshire lad?

Possibly by the rings on my fingers, (and the bells on my toes!) and the screen saver on my phone…

Would they guess a business owner, passionate about health, wellness?

Possibly by the litre of water, box of almonds and Arbonne literature I am brushing up on in front of me…

Would they guess a coach of other business owners, mentor in schools?

Possibly by the Mosaic book, notes I am scribbling…

Would they guess a daughter, emotional after a fleeting visit to the mental hospital to see her Mum with Alzheimer’s? Emotional from the recognition that the Alzheimer’s, the medication or both is slowing her Mum to a state that she now needs help walking, now only babbles for communication; emotional after not being recognized as the eldest daughter of two; emotional that the holding of her hand wasn’t reciprocated, that she sat on the sofa with her back towards her; emotional at saying goodbye and the sudden multiple, featherlite kisses and clinging cuddle; emotional from looking back and seeing her Mum’s face pressed the window pane…..

Possibly, if they look in to her eyes deep enough…

Would they guess a daughter relieved that the mental hospital wasn’t like the one in Jack Nicholson’s ‘one flew over the cookoo’s nest’; relieved that the nurses are kind, caring, the salt of the earth; relieved that the lump is nothing to worry about; relieved that she is clean, washed and is safe.

Possibly… but that’s a tricky one…

Would they guess a daughter who was shocked at her Dad’s big black eye and droopy blood filled eye bag? A daughter initially shocked, but then delighted to hear that her Dad wants to travel the world, carry on the trips and adventures, find a companion and live again? A daughter who just wants her Dad to live the rest of his life having fun, being a Granddad and doing whatever the hell he likes! A daughter who believes that her Dad is a hero for spending over 8 years caring and living the only life he could while looking after his wife with Alzheimer’s….

Possibly… but I doubt it!

Would they guess a friend who has had a lovely day catching up with friends – fresh juices and future plans; a cheeky bottle of sauvignon on Putney wharf…

Possibly? … and now I am paranoid, is the smell of booze from me?! Or is it the man opposite?!

Would they guess a wife still smiling at the recollection of a dinner ‘a deux’, burgers and beers, snoozing on the sofa in the flat of many memories?

Possibly … as the corners of my mouth turn up as I think of this..

Would they guess a Mummy excited to get home to give her two blond babies death by kisses?

Possibly … my mouth turns up even more!

Or would they just see a girl, a woman… with short brown hair in a pink jumper and fish on the end of her necklace?

Tale of two hospitals….

Does anyone have a week in which absolutely nothing goes as planned? Nothing? (Well my mentoring did – so that’s a white lie!)

I was so looking forward to this week – lots of meetings, coffee dates, gym, spin and appointments, dinner with friends… But I spent 3 days just managing to get the boys to school and sleeping for my usually productive hours. Illness or emotion getting the better of me…
And today – the first day I feel less achy, have more gumption, managed to get up for my Pilates and even had enough energy to take the dog for walk… I get a call from school saying that Willy is unusually unhappy with severe stomach pains. He hasn’t had gluten and he hasn’t been sick. But he is clearly distressed and doubled in pain…. So we sit in the doctors, with my mind wandering from trapped wind to appendicitis.. 
The doctor is stumped… Willy is clearly in pain but can’t explain it. He says it could go either way – stop suddenly or deteriorate rapidly. Perplexed… Considering his options… And Willy suddenly deteriorates, writhing in pain… Little face red and crying.. So unlike my happy little mouse. 
Decision made… He starts to ring the hospital… I tell him firmly under no circumstances will I go back to the hospital who took 3 months to misdiagnose Willy with reflux and then rush him to have open stomach surgery. He puts the phone down and asks me where I would go! It may have longer waiting times and I may not get a nice cup of tea and a carpet but at least I will have faith in the diagnosis.
So I am dressed in my dog walking kit, no make up, hair a mess… How long am I going to be? Do I nip home for snacks, a shower, change and look respectable? One look at willy and I know that is unreasonable… Leeds will have to take me as I am…. 
That was at 11 am… 
It is now 15.43…. We are still here.
Willy was so brave – wards are scary in Leeds. No position was comfy and he did his flappy bird impression, creased up little face pleading at me…. Heart wrenching as a parent and you would do anything to take the pain. I keep calm and pray, visualise a miraculous recovery, a hearty trump.. Anything but the thought of surgery on my little man… It made me weak at the knees 5 years ago and I know it will have the same effect even now.
Willy calms and lies in the one position he finds relief. And 30 minutes later he looks up and asks to go home…. He feels better. I didn’t hear a trump. 
Is this a miracle?  
He has been playing nicely and I have asked to leave but we can’t go! The surgeon has to feel his tummy and discharge us… Even though the bugs going round could be the answer, it could be appendicitis or grumbling appendix… We have to wait.
Willy and I don’t do well without food. Breakfast at 7 feels a long time ago.
I commend the NHS… It is Friday. So many poorly poorly children, babies. The place is over spilling.. But we have no idea where we are on a list – others arriving after us are seen first… Others seemingly worse are also still here. Communication is seriously lacking… The nurses can’t answer my questions, as lovely and kind as they are.
There are parallels with the NHS mental hospital behind whose iron bars my mum is hidden… My dad is still unable to find answers about the plans for my mum, how long will she be observed, when will they try new drugs, what drugs, is the plan for her to leave … When can we ring, who should we speak to, who is looking after her, what has she eaten… When did she last have a bath? No one can tell us…. 
I am incredibly grateful for the NHS and the wonderful service they provide and I know how hard everyone works, having great friends as consultants, consultant surgeons, anaesthetists, doctors and nurses, OT’s… Even overworked.. 
I would be really, overly grateful if someone could just come and tell me if Willy can eat something, drink something, if we can go home… 
  

Still Alice….

Still alice

So I watched ‘Still Alice’ last night. Something I have been putting off for ages as I thought it would make me melt down, sob too much. So many had warned me off it…

It was a lovely portrayal of a young, brilliant professor who has early onset of Alzheimer’s at 50. It shows the slow, almost minor forgetfulness of names, words, places that could be just old age… it shows how the progression of Alzheimer’s speeds up, to forgetting people, well known places to incontinence and inability to recognize any one, walk or even speak in anything other than grunts. It shows the sadness of the immediate family members as they see the degradation of a beautiful mind within a still outwardly beautiful person.

It was a lovely portrayal. Isn’t that sad…. There, there Alzheimer’s… That’s not so bad, I could handle that…

It didn’t make me cry, sob like I hoped it would. I found it rather a dumbed down, watered down, rather beautiful betrayal of an incredibly cruel disease. I found it more frustrating rather than emotive.

Where are the furious tantrums, the slamming of doors, the throwing of pots, the lunatic shouting? The long silences while locked in a bathroom or bedroom? Where are the hours of searching for a missing loved one and finding them miles and miles away at an old friend’s house or side of a motorway? Where are the scenes of complete lack of recognition for a daughter, a husband? Where are the scenes of self preservation, knife attacks out of gut instinct that something is wrong… so incredibly wrong… but just not sure what?

I felt robbed when it ended. I wanted to know what happened next? How did their family deal with putting their beautiful mother in care, in a home? How did they deal with the grief? The guilt? Were they told they couldn’t visit? Did they ring daily to find out how she was? How did they cope with the frustration of not knowing anything? How did they knock down the brick wall that is the NHS mental care home system? Did they go and sit outside the very important Doctor’s door until he had time to respond to a father, husband’s desperate need for information?

My Mum is lost inside her head.

We are lost in the world outside it without her.

It’s 11.38 and the other half of my sandwich beckons… my head still fuzzy with cold, blocked ears making me dizzy but there is still so much to do!

I mustn’t forget to walk the dog.