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!

 

Alzheimer’s grief

I have decided grieving is a lot like running.

 

First comes the decision to actually go for a run.  I believe you actually have to decide to allow yourself to grieve, rather than bottle up the grief, put on a brave face to the world, force yourself to think of all the positives and mask the pain of facing the sadness.

 

Then you just have to just put on your runners and put one foot in front of the other.. one step at a time.  It doesn’t matter how fast you go or how slow.  It doesn’t matter if you can’t sprint or if you have to walk..  It doesn’t matter if you have to stop and gulp for breath, bend over double because your heart and lungs hurt.  It doesn’t matter if you stop and look up and admire the beauty around you and smile.

 

Losing Mum has been a stop start grieving process.. or a one step at a time process.

 

I remember crying on the phone in Asda House on a deserted floor as my sister and I conference called Dr Carpenter and she confirmed that Mum did indeed have Alzheimer’s.  It was 2008 and Mum had fobbed off many doctors over several years before that. That was the first stage grief…mixed in with a bit of fear… fear for what was to come, the unknown reactions, duration, impact…  I grieved for a future without my Mum as I knew her – the life and soul, the giggling, the fun and glamourous lady.

 

I remember when I first realised that I probably couldn’t, shouldn’t leave Mum alone to babysit.  She was feeding a one year old Tom sat on the kitchen work surface with no support… with knives in reach on the draining board.  I grieved for my Mum who wouldn’t be able to be the Granny she wanted to be, playing with her grandchildren, giving them chocolates and taking them out for treats…

 

I remember the first time I realised she was slowly losing her day to day memory when she asked me if I wanted a cup of tea and I said that would be lovely… and she asked if she should use the hot water tap?  I grieved for the loss of my Mum the wonderful cook and homemaker, the one who had always looked after me.

 

I remember clearly the first time my Mum went missing.  I was at a wedding, and during the speeches I had turned off my phone.  As they finished, I turned it on to check to see if the boys had gone to bed and I had 40 odd missed calls from both my Dad and Bambi.  I remember my heart in my throat… She had gone missing in the car.  She had driven to Bicester Village and then couldn’t find the car – the parking attendant had rung Dad…  then someone in Birmingham, a complete stranger had Mum and she was lost.  Then we didn’t hear anything again until the police had found her and taken her to a police cell…   I grieved.  I grieved for my Mum who would have been so scared…. I grieved for my Dad as this was the first time of many to come.

 

I remember clearly the first time my Mum was taken to a mental hospital.  I was sat by the pool in the MGM Grand in Las Vegas.  My sister rang to say she had gone missing and that Dad had  found her walking along the M40 and she had refused to get in a car, so he was going at her speed to keep her safe.  The police had turned up and Mum started hitting them… I grieved for my Mum, sectioned in a mental hospital.  I grieved for the loss of my Mum and her wonderful brain…her sense of reality.

 

I remember the time last year when we Facetimed Granny and Grandad on a Sunday and Mum asked ‘who are the blond twins with you?’…. I remember choking back tears at the time to make light of it, telling the boys to go and play football.  I remember crying afterwards, grieving again for the loss for my sons who would never know the wonderful Granny she could have been, wanted to have been.

 

I remember being at home last summer, and asking to help Mum prepare supper… the pan on the hob was burning hot and she had put frozen peas in a pan with no water.  ‘GET OUT OF MY F**KING  KITCHEN!  WHO ARE YOU ANYWAY?’…. I remember sitting shocked in the conservatory.  I grieved for the loss of my Mum.
 

I remember the day in August last year that Dad gave us his diary and account of all of Mum’s behaviour for the preceding two years.  I remember crying on the phone with my sister as we read about how many times she had hit Dad, walked off, gotten lost, left the hob on… come at him with a knife.  I grieved for my Dad and his safety… I grieved for Mum and her safety. I grieved for the end of my Mum and Dad living together.

 

I remember preparing Mum to go in to a Care Home, distracting her by walking her around her beloved garden while Bambi and Dad packed a suitcase, lying to her saying that Dad needed to go to hospital as he was feeling very tired.  I grieved as we said goodbye to her for the first time, knowing this was the beginning of the end.

 

I remember when the home rang us to say they couldn’t look after Mum any more, her frustration, anger, aggression impacting the safety of staff, patients and even visitors.. My heart in my mouth when they said an ambulance was taking her to the mental hospital under the mental health act section 2 which meant she would be in hospital for some considerable time.  I grieved for my Mum who would hate to know this is what she was like…

 

I remember my shock each time I went to visit her in the hospital or in the lovely new home.  I grieved each time I saw my Mum for each time she was slipping away, through drugs, Alzheimer’s or maybe even something on her pituitary gland.

 

I remember my panic when I got the message from Bambi last Thursday to say that the doctor had confirmed an ‘end of life situation’ and that they couldn’t give Mum any food or water given her chest infection, suspected pneumonia causing her throat to close up.  I grieved for the future I thought I was going have, regular visits to see my Mum and hold her hand, even if she didn’t recognise me.  I grieved for the fact that a projected 2 years of my Mum in a home had reduced to certain death within 2 weeks.

 

In the last week, I hardened myself to grief.  I held myself together.  I was strong for my Mum, for my Dad, Bambi, for myself.  I numbed myself to the horror of Mum slipping away, slowly, daily…

 

In the last day, I hardened myself to grief.

 

I numbed myself against the horror of seeing my Mum’s dead body.  I just saw.  I didn’t feel.  I numbed myself against the horror of seeing the undertakers gently, oh so gently put pyjamas on her, synchronised with each leg of the trousers, synchronised as they lifted her tiny, rigor-stiff body on to the gurney.  I numbed myself as they wrapped her in a sheet and lay a velvet, tasselled cover over her.  I numbed myself as they wheeled her out of room 40, down the corridor and into a dark van.

 

I numbed myself speaking to the funeral director and to the vicar.  Answered questions.  Made decisions.

 

I numbed myself when I got home to get through the actions of being a Mummy myself and looking after my poorly boys.

 

But today I went for a run.  I made the decision to get fresh air…. To get the blood moving again.

 

And today, I am going to ‘un-numb’ myself… I am going to live, and feel, and cry, shout and laugh…

 

Today Mum would have been 75.  I am going to make her a cake and light candles…

 

And I laughed when Willy asked ‘and how will we get her cake to heaven for her?’

 

One step at a time.

  

Willy’s view

I have no words today…. No energy for words or trying to work out what is going on in my head or my heart today.. So I will let Willy share his:
What are you doing mummy?
I am resting.
Are you going to get up today?
I don’t know.
Why?
I am sad about Granny.
Granny??  
Yes Granny Brooks died.
Oh yes. How many days ago did she die?
2.
Oh. Is that all?
I’m still sad.
Why don’t you Facetime her then?
I don’t think I can, Willy.
Why? Don’t they have phones in heaven?
No. 
She didn’t take one with her?
No.
Not even in her pocket?
No.
Does she have an iPad then?
(At this point I can’t help but smile… So I tickle him and we laugh)

 
So Granny’s in Heaven then?
Yes – what do you think she is doing?
Are there Angels in Heaven?
Yes, I believe so darling.
I think Granny is with them.

Mummy in the middle

The universe plays a funny old game.

As I lose a mother, I have to be a mother.   Not that I ever forgot or stopped, but I had to be more than just present, more than just the usual, normal routine of pick ups, tea time, teeth cleaning and bedtime stories…  I am totally back on the other side of my family sandwich…

 

It felt like I had just dropped off to sleep, and Tom Tom crept in to bed.  Burning. Shivering. Frighteningly high temp of 39.6C. He looked just like the Big Man when we were on Ko Phi Phi.. Sad and sorry for himself.  Wanting to be held but just too hot for me to hold…

 

From 1am to 5am, it was cold flannels, calpol and cuddles.  Willy joined us at 3am ..  coughing a little fit.

 

I was Mummy in the middle turning every 15 minutes to give each one a kiss, stroke their head, feel their brow….

 

Willy bounced off to school with Grandpa this morning but my little Tom is proper poorly.  Can’t eat or swallow.  We had a duvet day.

 

I want to eat burger and chips and a big fat vanilla milkshake, American style.

Totally unlike me.

I still feel like I am having an out of body experience.

 

The Big Man is home.  He can put me back together.

 

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How am I?

People have been asking how I am feeling.  I answer ‘OK’…it’s simpler to say that than try and explain… I  am not quite sure how I am feeling really.

 

This morning I felt numb, a little shell shocked.  In 24 hours, I had lost my mum and organised her funeral, having had meetings with both the funeral director and the vicar.  We had contacted everyone who needed to know…  chosen the hymns, one reading and the music. We’d been back to the care home to say goodbye, thank and hug all the wonderful carers who had looked after Mum, and us over the last 7 days…

Bambi had even started the eulogy..  I was empty.

 

As I left for Yorkshire, I was all of a sudden alone, no Dad, no Bambs.  I felt lonely but glad of the space.

 

There was something wrong with the car, it cut out if I went over 70mph.  I felt annoyed… but glad of the steady pace..  and 5 hours to just ‘be’.  To listen to music, have a little soft weep with no one watching..

 

I felt nervous about school pick up time.  If anyone was nice to me or said anything about Mum, I thought I would publicly break down.  And I didn’t want to do that in front of the boys.  I kept my head down at the first school.

 

I felt relief that Willy just wanted to cling to me and be carried back to the car.. I couldn’t look anyone in the eyes.  Relieved too that he is ok – just missing his Mummy.  His innocent summary ‘So Granny Brooks is Dead.  She is in heaven then.’  I told him my view that she was in the mountains skiing.  ‘Really?  I want to go skiing too… my heaven will be mountains too!  Mummy – did you know it took Amy Johnson 20 days to fly to Australia.  And she had a crash.… How many miles til we get Tom? Can I play on your phone?’  …

 

I felt overwhelmed as I parked at the second school.  Before I had had chance to close the door, a lovely friend, new friend, came dashing over with a box of casserole, enveloping me in an embrace.  Overwhelmed with gratitude and emotion at the kindness and thoughtfulness.  Overwhelmed as other lovely Mums also held me, I lost count of who and how many… just as I have felt overwhelmed at the flood of messages streaming in on my phone, through Facebook passing on thoughts, love and best wishes to the 3 of us.

 

I felt heartbroken as I found Tom.  Pale.  Flushed cheeks. Quiet.  He had rung me yesterday evening, in floods of tears… inconsolable.  I managed to hear him say ‘is it true, is Granny Annie dead?’…  Every part of my body wept at that point, my heart dripping with tears….  At 8, he will remember her, understand more of the emotion that sits with losing a loved one.  At 8, he is a big boy – no public displays of affection.  But the minute we are in the car – he holds my hand ‘Can I kiss you, Mummy?…’  When we get home, ‘Can I cuddle you Mummy?  I am so sad about Granny.’  At tea time, ‘Can I sit on your lap, Mummy?  Is Grandad ok?  I am so sad about Granny Annie, he must be too.’  My heart melts at a text conversation I find on my phone between him and Grandad…..  “Hello Grandad.  Are you okay without Granny Annie?  (lots of emoticons)  I am very sad about Granny Annie.”  Then he shares his favourite memory of Granny, ‘In a water gun fight when I squirted her’.  I remember it… It was a gorgeous hot day and the boys and Grandad were racing around the garden with big water guns and Granny got caught in the cross fire and just loved it!  I caught it on camera…

 

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I feel sad that the Big Man is in London… I feel like we all need him tonight..   His the only company I could bear tonight.  Willy is coughing like a seal, Tom has pustules on his throat (suspected tonsillitis)…

 

I feel tired, drained, exhausted.

 

I just feel a bit ‘odd’.  But then I have never lost a Mum before.

Annie. Mumbo. Granny Annie

Well done you lovely old thing! Congratulations to 44 years of happy marriage!  It was what you were waiting for, holding out for..  44 years and just under 2 hours with your beloved John Boy.

You left this world peacefully, but I can’t imagine that you will be quiet for long.

Wherever you may be, I am imagining you in the mountains.

On Alp Flix dancing in the fields of wild flowers, dancing like you haven’t for such a long time – arms out twirling like you are Maria!  ‘The hills are alive!’…

Or shouting ‘Ben Zee Knees!!!!!’ and tucking up in to a schuss with a big grin, and heading off in a cloud of snow.

 

I can hear your peels of laughter echoing happily through the Swiss valleys.  And that makes me smile.

 

You are the lovely, true Annie again.  Mumbo.  Granny Annie.
    

    

The Lovebirds

Everything suggests there are moments, minutes left of the torture of watching mum slip away.
She is icy cold, greyish purple…

Her breathing is panting heavily, with big pauses.

I asked earlier if she would go tonight and if she was going to, then I would find a sweet in the car. There was one ‘tangtastic’ hidden in the crease of the leather seat. Stupid.

We are on the last podcast episode of ‘serial’, which has had us gripped and has helped pass the time. Does she want to find out if Adnam did it or not? 40 mins to go.
I have finished colouring my ‘lovebirds’… 
Tomorrow is her wedding anniversary – 44 years of very happy marriage to her ‘Johnnie’. Is she waiting for her flowers and chocolates? It totally wouldn’t surprise me if this was her last act of love. 90 mins to go.
We don’t know whether to stay or go. Wait to hold her hand as she transitions… Or go to bed to get sleep in preparation for another day tomorrow… 
Is she scared? Or tenacious?
Her hand is so cold. 

  

All Heart

It feels like I am living in a bubble .

A very surreal bubble.

There is life going on all around me… everyone living as normal.

 

My life as I know it, has stopped.  It is one step removed from reality.  I know it is going on… I am just not in it.  My Sandwich Life is totally one sided… one slice only.

 

My life exists in Room 40, The Heights, where today it was like Groundhog Day.

 

Dad was reading the paper, doing his Soduku.

We did the Times crossword …

We coloured in a beautiful tree with owls in.. and an English garden.

We reminisced over many holidays, places we had been, our favourites…our funny memories.

We tell her many times how much we love her and how grateful we are to her..

We finished watching The Thomas Crown Affair – Mum loved Pierce Brosnan.

Dear and true friends of my Mum came to visit, providing amazing support to us all.

We had a picnic bedside lunch but popped home for a break and some hot food at supper time, before heading back to our vigil.

Mum is wearing pink, eyes unresponsive, supine, mouth open,  limp limbed, skeletal.

 

But there are small, significant changes.

 

There is a noticeable calm in the room.

The Death Rattle has gone.

The choking and gagging has stopped.

The tubes and Flaem machine have been removed.

The lights are kept dim.

Her fever has gone, but so too has the colour in her face.

Her breathing is shallow, panting… and twice, Bambi and I had to stare hard to see if it had stopped.

Many nurses and carers came to see ‘lovely Annie’.. visibly shocked at her sudden decline.

Rather than checking her airways they are checking her oxygen levels and the colour of her feet.

 

As I get in to bed, as I have done for the last 3 nights, I anticipate being woken up by the phone call in the middle of the night…

 

As I get in to bed, I allow my head to fill with images and thoughts of the other slice of the Sandwich.  My boys. My Big Man.  I miss them.  I feel guilty when I think of them.  Guilty that I am here and not there, to take them to school, to let the Big Man focus on his career.

 

As I get in to bed, I let the guilt wash over me, for there is nowhere I could be, would rather be than in this surreal bubble.  A surreal bubble to say my goodbye to my Mum, my original family and to support each other through the end of this chapter of our lives.

 

As I get in to bed, I think of my Mum’s strong heart.  She loved fiercely my Mum.  If she loved you, she didn’t just love you a little, she loved you wholeheartedly, with her whole heart.  As her daughter, I am allowed to say that sometimes it was stifling… She rarely exercised (gardening was her exercise she said)… Her heart was the muscle she used most…

 

As I get in to bed, I wonder whether that is why it is so strong now in death..   The rest of her is gone… just her heart pumping on and on and on… She is and was all heart.
 
 

Stubborn

As stubborn as she was in life, she is stubborn in death.  
She is a fighter … Born of a childhood from an aggressive father and an abusive first husband. And she is fighting death in favour of life with each rasping, gurgling breath. 
Her ‘Death Rattle’ is killing me more than it is her. At times so unbearable I have to cover my ears and bury my face in my arms. Each time she chokes all three of us squeeze her hands tighter, stroke her head and say ‘we’re all here…we’ve got you, Mummy’.
There is no lesson in this experience, nothing to prepare you… Only the experience itself. Nothing on the internet comes close – I have tried to read up on what to expect…. There is nothing graphic enough to describe the sights, sounds and smells…. 
Time passes. Sometimes slowly. Sometimes flies. It reminds me of childbirth and labour… 
We pass the time, Bambi is colouring, Dad does Soduko in between coffee and tea runs. I read that the last thing to go is hearing… So we chat about nothing. I read out articles in the Sunday Times, read her Wogan’s eulogy from the BBC news website. She loved Wogan. We do the crossword together, friends arrive to share memories and hold her hand… 
The tension in the air is mounting and the tension in my back and shoulders intensifies… The sitting and the anticipation.. 
In my head I am telling her to do what is best for her… To let go. Out loud I tell her to be brave… Bambi tells her not to be frightened…. We tell her we love her, that we will be fine. We kiss her hands, we kiss her face. 
In one horrendous moment, as the nurse drops the full cylinder of bile sucked up through tubes from her mouth and throat, mum has a fit, gags, chokes and Bambi and I plead with her… Go. Just go. Tears flow from our eyes and one solitary one falls from hers….
But she breathes on…. A fighter. Stubborn to the end.