Thursday, 23 March 2017


Started 6 March 2017. Finished and Posted 23 March 2017

Well- I did it.
I said I would stay with Mum till she died, be right by her side, if I possibly could. And I have done.
Actually, Mum died, quite suddenly, on New Year’s Eve.
But since then my life has been so full of things I’ve had to do that I’ve really had no time for reflection, or to experience my own feelings about this. So I’ve found it hard to collect my thoughts and feelings enough to write anything for this blog.

Looking back over it all, I’m glad I was hooked into the Palliative Care Team in that month or so before Mum died.  Not only did I have everything in place about the Do Not Resuscitate order, but I also had a phone number to call when I realized Mum had started to die. It was New Year’s Eve, so the normal doctors’ was closed, and I didn’t know the number we are all now meant to use for out-of-hours doctors. I didn’t grow up under that system. When my husband died in 1984, we still called our normal GP and got the one who was on duty that day or night. I couldn’t remember the number posted on the door of the local surgery for out-of-hours calls, and I certainly didn’t want to press the red button on Mum’s alarm system, as I had such bad memories of the last time I used that and the appalling ambulance men who turned up.

But the Palliative Care Team had left me a number to call and clear instructions about who to ask for. So – after about 30 minutes of sitting by Mum’s bed, thinking “Any minute now, I’ll just stay here and be here with her while she goes,” but actually feeling completely shocked, I did finally think to call them.

In the end it took about 2 hours for a doctor to arrive and Mum seemed to breathe her last just as he came into her room. I thought she was coming round. I thought this was just a scare like we’d had so many times before, and she always rallied round.  The Oramorph I had given her when all this started had worn off after an hour and she had seemed to become more active, somehow agitated, plucking at the quilt over her and pushing it back, fiddling with the oxygen tube in her nose. I think now this was because whatever was happening in her lungs, a final collapse of the only part of her lungs that was still open, had just got worse and she was reacting instinctively to suffocation, but at the time I thought it meant she was coming round.
I stood in the front hall talking to the doctor, telling him what was going on, and then we went into the bedroom, and Mum’s face had gone so white, I could never have believed it could go any whiter than it already was. Her jaw had gone slack and her eyes had closed.  
In a high, incredulous voice , I said “Has she gone?” to the doctor. He took her wrist and felt her neck and said, “Yes, I’m afraid so.”
She looked so tiny, so defenceless, I just said “Oh, Mum,” and fell to my knees by her bed, and stroked her hair and held her hand.  Just then the doorbell rang again, and I said, “I think that’s the nurse, they said they were sending one,” so the doctor went to open the door, and while they were talking in the hall Mum’s eyes suddenly opened and she started up, it was like she was choking, her tongue was poking out and her face went even whiter, such a ghastly colour. I was terrified. She was suffocating to death, and all I could do was whisper “It’s ok, Mum, everyone you love is waiting there for you. Dad is there, holding his hands out to you, Betty’s there, your Mum and Dad are there. You’ll be ok. Don’t be afraid.” She was still somehow responding to my touch, as she had been all along, but her eyes were staring, unseeing. 
I don’t know how long this lasted. It was over by the time the doctor came back in with the nurse. To them Mum had just passed peacefully in the gentlest possible manner.  But it has been a long time for me to get those last few seconds out of my mind. I’ve been in shock from it since, though it is now abating to the point where I can write about it.

Our ancestors witnessed people dying as a regular part of life. I suppose they were used to it on some level. But in our present day culture we are simply not prepared to see anything like this, to feel it, hear it, even smell it. It was such a body experience for me, feeling that tiny, so-light body in my arms, so helpless. All those times when I was helping her dress in the final few weeks when she had so little breath in her she truly was like a tiny baby, still fully aware, but barely able to eat or speak for more than a few words at a time – all that is still with me. I feel so protective of her.
Even now can’t really take in that she is gone.
There is something so incomprehensible about death. 

The nurse was a young male one who I’ve seen a couple of times when he came to do Mum’s blood tests.  He stood with me in the hall while the doctor performed his formal tests to confirm death. The doctor came out and said he’d rarely witnessed such a gentle death, and that I must not feel there was anything more I could have done. I knew this. I knew I had done well. I’d done all I’d hoped to for Mum, and even it that state of shock I felt a kind of pride that I had been able to fulfil this last thing for my mother. I hadn’t fobbed it off on anyone else.

 I don’t totally remember the order of the next things. I went online and found the contact number of the same funeral directors Mum had used for Dad’s funeral – except that one had closed and been bought out by another firm. I called them to come for Mum. I was able to be by her when she was dying, but certainly could not cope with having her stay there in the house with me once she was dead.

I called my best friend, and she agreed to come round instantly. The nurse waited with me till she came. I remember him asking if he could go in and say goodbye to Mum as he remembered her from his occasional visits.  I was quite calm and clear-headed, but also quite spaced out, all through this.  The undertakers came about an hour later. They asked what I wanted Mum to wear, but she was dressed, not in her nightclothes. She had begun to go into dying literally as I was dressing her – it was when I rolled her onto her side to pull up her trousers up at the back, the breath just seemed to go out of her in a gasp – I don’t know if that is what they mean by a death rattle – and I think that is when the last of her lung collapsed. I didn’t want them to mess around with her more than they had to, so I said “I’d like her to wear what she’s in now, those clothes are so much ‘her’.” So they asked us to sit somewhere else in the house and they took her out through the living room and front hall.
My friend works for the local church and therefore has to deal with all the local funeral directors, and she told me this one was the one she’d have when she died, as she liked their ways and it was a small local firm, not a franchise. I felt glad of this advice.

Then after that it was all action:
Phone my three brothers, two of them in Western Canada, therefore it was about 5 a.m. for them. But they were glad I’d woken them to tell them.  I couldn’t cope with calling Mum’s twin sister, so asked my youngest brother to call her as he had a close relationship with her.

There’s so much to do when someone dies. And I was the only one who could do most of it. As I live here right where the funeral was to take place, I was the one to co-ordinate it all.
I had help. My oldest brother and his wife came down the next day from Scotland, and David and I went to the Registry Office, once it was open. New Year came at a weekend so there was quite a delay till everything opened. We went through all of what you need to do – mostly following advice from the undertakers, who know people have no idea what to do when someone dies and therefore give very clear, care-full advice.

This is why I am writing this. Most of us have no clue. I’ve only had to do it once before, when my husband died back in the 80s.
So - what advice do I now give to anyone else who may be in the same position as me?

Arranging a funeral seems to be as complex an operation as arranging a wedding – only without the clothes. The worst thing for me was that we needed to wait for over a month before we could get everyone together at the same time. Every time I thought of Mum’s small, fragile body still lying there in some morgue, in her red sweater and navy-blue trousers, I felt my heart turn over.  I felt angry and betrayed that my brothers couldn’t get themselves over sooner – though actually there were other factors getting in the way, that were nothing to do with them. That was just the way it felt to me at the time. Once the funeral started and I saw the small coffin being brought into the crematorium, it brought up all those feelings for me. I was so grateful for my niece who just came forwards and took my arm, because she noticed my reaction. But, after the prayers and hymns, which none of us could sing, when the coffin went onto the rollers and the curtain drew across I felt such a sense of relief, like a weight lifting from me.  But I found that month-long wait so ghastly that I am seriously considering stipulating in my will that my body must be disposed of within a week, regardless of whether people can get to the funeral or not.

The really important part of the funeral was the Memorial service that took place the day after – a celebration of Mum’s life in the church she used to attend, before she got too weak to get there. As is usual in these cases, so many of her friends had died or gone into care homes that the attendance was a lot thinner than it had been for my Dad, 8 years prior to this and in the same church. But we still gave her a good send-off.  Various people read things - some that had been sent in by people who could not attend – and another of my lovely nieces sang. We went on a bit, I know some people began to space out, but I didn’t care. I felt proud that we had so much to say about our Mum. I wasn’t sure if I would be able to get up and speak, but it was important to me that I did. Not just to say things about Mum, but to take my place as the chief mourner, to be seen and acknowledged as the one who had played such a strong role in caring for Mum and helping her die so gently and with such dignity.   In a way, I felt I was owed my place in the limelight – and I used all my practiced skills at performing in voice to deliver what I had to say.
This is what I wrote for Mum:

Mum’s funeral
Many of you will be aware that I moved in with Mum about 8 years ago to live with her and look after her. To be honest, I originally came to stay as a temporary measure, because my own life had gone a bit pear-shaped and I needed somewhere to stay while I re-grouped and worked out where to go from there.
But I quickly realized Mum wasn’t doing too well on her own – both physically and emotionally. Her osteoporosis and arthritis and other health issues were getting worse, and she was lonely and seemed to feel it was downhill all the way from here.
She told me she’d imagined the final quiet years of her life would be a time to come closer to God, when she would have time to think, pray and read her Bible. But she was finding it wasn’t quite working out that way. Life felt a bit gloomy and she was afraid of the future. Though she was still mobile and able to drive, it was clear this would not last much longer.
I hated the thought of her going into a Care Home, as did my brothers, so I stayed so that Mum could continue in her own home till she died.
I didn’t do this out of some martyred sense of duty. Yes, there were many times when I chafed at the bit and was desperate to get on with my own life. But I set out on it as the next stage of my own journey, to grow and become and learn in whatever way I could through this unique opportunity.  So – it became a conscious process of looking at this most difficult-to-describe relationship – this mother/daughter ….. thing.
I think most of the women here will know what I’m talking about.  I don’t know about men, but every woman seems to have …. Stuff …. With their mothers. Admit it. We all do. I don’t know why, but we all grow up with that mixture of being so close we can’t really see each other, and yet, utterly exasperated by our differences; so supportive and yet, somehow competitive to each other. It’s almost impossible to put into words really. All I know is that every woman who tries to talk about her relationship with her mother ends up rolling her eyes, sighing and muttering about  ‘issues’. I can see small smiles and nods of recognition in many faces here.
We love our mothers, because they are the air we breathed and the earth we walked on when we were little, and then we grow up and we are both women, and even when we are as different to each other as my mother and I were, we are still in each other and of each other in a way that is very different from whatever that is for men.
And none of us has words for that. So- as a story-teller, writer and poet – I wanted to find some words, if I could. This is the poem I wrote as the beginning of that journey:

Mothers, thank the Lord for your delinquent daughters,
Who went off and did what they shouldn't ought ta.
Who danced to a different drum
And followed the Moon and not the Sun.
Found themselves, silvered driftwood, on an empty shore
Still following that elusive star.
Whole, though scarred, and eyes too wise,
A hatful of dreams and no compromise.

They are the ones who flutter home
To a nest that's no longer lined with down,
But with silver gossamer

And two silvered heads, one haloed white,
One speckled black,
Lean together in the slowly dimming light.

And, yes, Mum and I are very different. I’m much more like my Dad in character. He was introverted, complex, bookish, always thinking and chewing over things, full of ideas. And even though Mum wrote and did all sorts of creative things, as we’ve heard from others, she was essentially a straightforward person, who just did things like volunteering to visit people who needed help, or Marriage Guidance counselling, or fostering, just because it seemed the right thing to do. She wasn’t really reflective in that chewing things over way, she was just instinctively kind, and acted on that basis.
She was actually quite shy and struggled with some of the things she did – she was not especially self-confident, but she kept on doing them anyway.
She said to me a couple of times that she felt a bit out-classed by Dad and us four. She’d say she was just ordinary, she’d married an unusual sort of man and had 4 talented and unusual children, and she was just sitting in the middle of us like a little daisy surrounded by roses or something. She certainly took great pride in all four of us – regarding us as her life’s great achievement. But I think you can tell from Michael and Jim Bland’s account that she did plenty else with her life and was talented – she did more than most – and so much of it was giving something back into her community.
And for me, it was that simple quality I’ve described here, that shone through and made her such a true and authentic person – loyalty, kindness – nothing showy about these, but they just came naturally. Openness to others was another. She was of her generation, so had some prejudices and judgements – but she was always open to others and generously accepting of them for what they were – qualities that I think all 4 of us carry through in our lives.

And so – during our time together there was an exchange between us. We were giving and receiving from each other. I would ask her questions that would trigger memories in Mum that she’d share with me. Or she’d re-think old stories, because of me looking at things from a different perspective. I know she did a lot of quiet reassessing of her own life during those years. I can’t speak now of my own learning and re-appraising and slow collecting of insights, but I know I came to a closer, more compassionate, more adult and equal relationship with Mum and I think she did with me. I’m grateful for the opportunity to do that.

And in her final year, the essence of who Mum was shone through more and more as she shed all the roles and public selves – that we all put on – she just dropped all that, and just ‘was’, as she grew more and more frail. In her final months she would say “I’m just going to BE today,” as she found she didn’t have the breath to do any exercises at all.
And then her essential simplicity shone through. She didn’t see herself as anything special, but that kind of simplicity and clearness is special. The way she remained positive and quietly cheerful as she grew weaker and weaker – knowing she was dying – touched everyone. 
And I went with her on that journey, and so shared some of the light that began to shine through her.
A few months before she died I wrote this:


I am living in a field of death.
Not asphodels or grim shades grieving.
This is light
Dissolving into light.

We now know that all
Is everywhere
For all time.
That we are each a
Distillation of light
And breath. A drop
Of nectar quivering
For a moment
On the skin of a petal.

Monday, 26 December 2016

Poem - Waiting


I stand in a threshold place.
Lingering in shadow, I wait.
That door ajar is not for me.
I accompany another.
She, too, waits. 
This is not a place for the living,
But I am steeped in it.
From under this ancient arch,
Beside the waiting door,
I look back towards that other world -
Of flesh and blood.
They are all going places,
Wanting things, seized by
The drama of their moments.

They talk to me as though I am with them there.
But I am here,
Looking at them but
Carrying the shadow of this place

Deep in my bones. 

Dying in the modern age.

We’ve all heard horror stories about people who’ve been left to die in hospitals, without even water. There’s even a (now discredited) system, called The Liverpool Care Pathway for the Dying Patient (LCP), where hospitals seem to be trying to hasten the deaths of patients who are deemed to be terminal.
To be honest - I know of two people – one a relative - who chose to refuse food and drink because they felt it was their time to go. And a long and distressing way it is to go. I have already started to make plans about hiding paracetamols where I can get at them when I feel it’s my time. Preferably washed down with a large gin and tonic.

But my experiences over the past few weeks, ever since my mother went to see her chest specialist for a routine check-up, which led to her being referred to the Palliative Care Unit, have given me a whole new insight into the 21st century way of death.
As my purpose in writing this blog is to be helpful to anyone else who may be in the same situation as me, I’m going to go into details here.

Once you’re under the Palliative Care system, all sorts of things seem to come into place, so I now feel quite supported and have a clearer idea of how to do the next phase of my mother’s life.
Because she now is into the final stage. It may go on for a long time – possibly another year, but there has been a step change in her condition, and I am now undoubtedly living with someone who is dying.

Lots of things have happened very fast. A man just turned up with an oxygen condenser, and quickly got Mum set up with oxygen being very gently pumped into her nose. So - no lighted candles when the vicar came round the following day to do communion.

Then we had a visit from the Palliative Care Team, (actually McMillan Nurses, who now do all P.C. I didn’t know that) who went through a whole list of questions, including difficult questions about end-of-life care.

We know we want Mum to stay at home as far as possible. Mum’s wish is to die quietly in her own home, not to go to hospital if at all possible. We now know that if she does require hospital admission, then it will be a Hospice rather than a General Hospital, which is a much quieter and nicer place. But that will only happen when there is clearly some treatment that would benefit her that cannot be done at home - such as anything intravenous.
But then they ask her ‘Do you want to be resuscitated?’
So - this is where I find out that if you die, they don’t just leave you dead, they do CPR on you and bring you back – as a default. They have to have a legal form called Do Not Attempt Cardio-Pulmonary Resuscitation order (DNACPR), aka a purple form. Apparently it’s that colour so it’s unmistakable to any medical personnel who turn up at the house.
You get it from your GP, if the patient agrees to it.
Mum just didn’t have a clear answer. She said ‘Well, theoretically, no, but I don’t know how I’ll feel about it at the time.’
It was hard for the PC team person to be too brutally direct with her, and Mum kept falling asleep while the woman was trying to discuss this with her. On her way out I had a discussion with this woman, who said that if it was her she'd be able to make the decision not to do CPR, but the younger ones are so scared of litigation, they will resuscitate - even with someone like her, unless they have this purple form.
If she has to go to hospital with pneumonia and dies while she's on a heart monitor, unless they have this form in the system on Mum’s notes, the crash team will rush in and pump on her chest and shock her and get her back to life, and then she'll still have pneumonia, but she’ll be semi-conscious with broken ribs, and she’ll just linger on, in pain and still very ill, and it will be utterly ghastly - then she'll have to die again.
This is the main reason to keep her out of hospital - which she agrees with.
Even if she dies here in the house, which is what we would all like - they may insist on trying CPR unless there is a purple form in the house which is recognized by para medics and anyone else as legally allowing them not to resuscitate her.
The prospect is utterly ghastly. As far as I am concerned there is no fucking way I am going to let them resuscitate her and then let her linger in a limbo state till she dies anyway. And how many times would you have to die before they finally let you stay dead? Obviously if she’s responding to treatment and there is a chance of her making a recovery, then it’s not an issue. But once her heart stops, even if she had seemed to be getting a bit better, I think that should be it.

I’ve spoken to friends who’ve told me they had very different experiences with parents dying, but when I ran it past the lovely, very good, GP, she said my take on it was substantially correct.  Even if quite a bit of time had passed between Mum dying at home and paramedics arriving, which would surely be around 20-30 minutes even if I was sitting by Mother at the moment of her death, and longer if I'm out of the room at the time of death, the GP said they may still try CPR on her.

This is all a very far cry from when my husband died in 1984. He just told them verbally that he didn’t want any further treatment and would stay at home till he died there. When he died there was no question of resuscitating him, it would have been pointless anyway, but he didn’t have to sign a document stating that he would not sue them if they didn’t resuscitate him.
FFS! The whole thing is a travesty now. 

So - I’ve very gently found the right way and right time to go over this again with Mum. I had to think carefully about when she was most likely to be awake enough to deal with it, as she sleeps all the time now. I chose to do it while I was giving her a bed bath, first thing in the morning – as she is quite alert then and it’s a very intimate and tender time, with no loud music playing.
I was worried that she didn’t get what the question was about, and rehearsed it over and over in my mind to find the best way to tell her. But in the end she just said, straightforwardly, “I have been thinking about it, even before that woman came, and I think it is the best thing not to be resuscitated. It’s just that it’s scary to think of. I know I have to go sometime, and I do accept it, but when I really think about it, I’m scared.”   My eyes filled with tears.
When I did tell her briefly, that they would do CPR on her even if she’d died in a nice gentle way at home just as she hoped for, then she was quite clear it was right for her to get that form. 

Over the years I’ve had friends suggest I get Mother to make out a Living Will, when it was clearly not appropriate to push her into this conversation before she was ready. They seemed to think I should just insist on this. To which my response is - Go get yourself a Living Will if you are ready to think of this. Leave others to decide when they are ready in their own time.

One of my brothers decided he’d just sit down and talk this over with Mum a couple of years ago, and he came back and told me it had all been settled.  When I checked with Mum she had no idea that was what the conversation was about.  So my next piece of advice is to talk about it more than once. Don’t assume you are both talking about the same thing. Be patient. And be sensitive.

On a different note – they are going to send out an Occupational Therapist to see Mum and assess if there is any kind of transfer aid that can be used to get Mum from chair to wheelchair/commode/bed. At the moment the carers and I are coping, but when Mum gets weaker they won’t allow the carers to help her as they are not allowed to do lifting, only assist to stand.  Once the carers can no longer come I will be restricted to the house most of the time, and no longer be able to take whole days off to have a break. I know from past experience this will push me to the limits and will be unsustainable for a longer period, so I am desperately hoping there will be something that can help. One of the carers tells me there is something but it’s nearly £3000, so is very hard to get one given to you by the NHS. I’m waiting to see what they can offer. 

Wednesday, 12 October 2016

Lovely poem by Rob Cullen that will appear in his next collection 'Time to Heal'

Keeping my word.
Your back was turned as you lay
In the bed in the stink of that ward
But it was the way you raised your hand
Waving without looking that was so telling
It was as if you didn’t want to see
My leaving you in that dreadful place.
I was certain at that moment
That you’d given up on your life
And I wouldn’t see you again
At that last leaving I hesitated
And thought about going back
But what in the world would I do
Or what could I say. I could try
Urging you as I’d done before
So many times to fight and get well
So that we could bring you home.
But I knew nothing I could do
Would change anything at all
I’d kept my promise to my father
To look after you when he was gone
Nine years of seeing to your needs
Daily phone calls, weekend meals
There was nothing else to be done
I am after all my mother’s son.
The phone rang in the darkness
I picked up the receiver knowing
What would be said a strangers voice
Telling me of my mother’s passing.
I did what my father had asked
And looked after you for nine years
But it hurts that lingering thought
Somehow, in some way, I had failed you.

Wednesday, 5 October 2016

5th October: caring for my Mother

Mum says “Sorry to be taking so long over this.”

I ask “What?”

I am helping her undress on the bed ready for the night. Did she mean being slow with bedpan, hand wash, eye drops?

“No,” she says. “This.”   She gestures with her head. “Dying.”

I pause in order to feel the right response. “Be true,” I think to myself.

“Are you afraid?”

“No. Not really. Just. I’m keeping you from getting on with your life.”

I wonder if she’d understand what I’ve come to understand.

Getting on with my life is happening, right under our noses. Inside, where it matters.

Growing. Becoming. Being.

It’s what we all do.

While we think we are waiting for it to start, it’s already chugging ahead. 

Later I write this poem, inspired by a book I read on quantum physics:

I am living in a field of death.
No asphodels or grim shades grieving.
This is light
Dissolving into light.

We now know that all
Is everywhere
For all time.
That we are each a
Distillation of light
And breath. A drop
Of nectar quivering
For a moment
On the skin of a petal.

Thursday, 22 September 2016

More on misophonia

Since I discovered misophonia yesterday, I’ve had a few responses to my blog, (mostly on Facebook) and I’ve been looking at what people say on a Facebook group for misophonia (they call it ‘miso’ but I can’t. Miso is a Japanese food  )

I’ve had a few more thoughts.

Firstly: it seems there’s quite a range of neurologically atypical sensory responses that have been researched and named, including one that seems to be almost exactly the mirror image of misophonia, where people experience intense pleasurable sensations in response to certain sounds, like eating.
For me - the key characteristic of misophonia is the powerful emotional reaction that seems to have nothing to do with the stimulus - ie- feeling angry because of very specific sounds that some people make when eating. I began to wonder if it's actually a form of synaesthesia, which is when you get 2 very different sensory reactions to a sensory stimulus - like, seeing letters or words as colours. In this case, it's linking a particular feeling- anger- with a sensory stimulus - sound of eating (or whatever). So I found an article about synaesthesia which lists misophonia as a possible form of that.
That makes sense to me. My problem that certain eating-sounds trigger anger in me is troubling in itself. I’m usually very in touch with my feelings and I’m used to knowing why I feel something. I expect my feelings to make sense, and feeling random anger that switches on and off like a tap, is disturbing. Hence my sense of relief at discovering an explanation for it.

Secondly:  A couple of lovely and dear friends have suggested they will alter their behaviour when we eat together in the future. I do really want to state that I feel this is my problem and it’s my responsibility to deal with it. I do not have the right to ask anyone else to alter the way they eat. I have never actually said anything to my mother about her eating style, even though I have witnessed (back in the day when she was mobile and visiting with friends or relatives) eyes swivelling to her when she was chewing. So her eating is loud enough to draw attention, even from people who aren’t bothered by it. But it’s her body and she has a right to do with it what she likes. And she can’t help her breathing which is caused by her COPD.
I have a dear brother who suffers from a painful condition where he gets polyps growing in his sinuses and when he eats his breathing is very audible. Actually, oddly, this does not bother me as much as some other eating sounds, but it is moderately hard. He can’t help this and I’d never make him feel bad about it. He actually suffers a lot of pain from his condition, so he is the one who deserves sympathy.
I have been stoically bearing this distress for over 60 years, (apparently most people don’t start misophonia till they’re older) and I know what I can cope with and what I can’t. Even when that partner I mentioned, started to eat sweets deliberately in my ear, I did not break up with her because of the sounds she was making – it was her deliberate attempt to distress me that made me lose all respect for her.  

So please do not think you have to leave the room or anything else when eating with me. It’s actually more distressing to think that people are reacting like that to my confession, than to have to put up with the occasional munch. As I said in my article, I seem to get more tuned in and sensitive the more time I spend hearing the sound, so most people aren’t at that stage with me yet anyway.

I do however, give myself the right not to stay with anyone who eats in a really loud and offensive way. But I will find my own way to deal with that if it arises. Anyone who eats in a normal well-mannered way with me is safe. 

Wednesday, 21 September 2016

Caring for my mother and misophonia: This is the most important thing I’ve read in my life

Misophonia: This is the most important thing I’ve read in my life

Years ago I chanced upon an article about synaesthesia, in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway. The most common form of it is where letters or numbers are perceived as inherently coloured. So I discovered a) that not all people see numbers and letters as colours, and b) once I began to pay attention to this,   I realized there were all sorts of other ways in which I was synaesthetic – such as experiencing numbers as 3 dimensional objects with colour, texture and movement. No wonder I struggled with doing even the simplest arithmetic.

A few years later I read the very excellent books of Dorothy Rowe, with her descriptions of Introversion and Extroversion, and began to form a more positive self-concept of myself as an introvert – and hence– well, basically a super-cool person – heheh.  
Here’s a bit of basic info about this that I just cut and pasted from a website, for those who don’t already know it: “Psychologist Dorothy Rowe, author of The Successful Self, explains: ‘Either we are “people persons”, who judge ourselves in terms of how others respond to us, or we are “what have I achieved today?” people.’
These definitions have been widely used by psychologists ever since, as a way of dividing personality types. One of the most popular assessments, the Myers-Briggs personality test, considers extroversion and introversion in terms of where an individual gets his or her energy from. According to this approach, an extrovert tends to draw energy from interactions with other people, while an introvert is more self-sufficient, drawing on his or her internal world.

The next useful bit of insight for why I am so weird and always feel I don’t fit it came from reading Elaine Aron's 1996 book The Highly Sensitive Person, which I have already written about in this blog.

So, that’s enough for one person, isn’t it?  Highly sensitive, introvert and synaesthetic.
But there’s one other totally weird, off-the-scale bonkers thing about me that I have lived with all my life and thought was unique and inexplicable. No-one else in the world was like me. I have spent years trying to find some kind of explanation for it, even considered having hypnosis to help me with it.  And now, today - by pure chance – I came across an article giving it a name: misophonia.
Sometimes called selective sound sensitivity syndrome, misophonia is a baffling and bizarre disorder. Sufferers feel an instantaneous, overwhelming rage - often accompanied by physiological responses such as sweaty palms or a racing heart — to certain sounds.
These triggers are often chewing and eating sounds, sometimes barely audible. Some people report visual triggers such as fidgeting or foot-bobbing, or even olfactory or tactile triggers.
Here’s the article I stumbled across:    

The first time I ever noticed I didn’t like the noises people make while eating, I was literally about 2 and a half years old. I still remember the moment. We were still living in Alberta, Canada, where I was born, and my 2 older brothers had gone outside into the back yard to play, my younger brother had been put down for a nap, as he was still a baby, and I was enjoying a moment of quiet with my Mum, sitting at the dining table, after lunch. Mum was reading a book, and I was musing in my quiet, odd way over important questions like “If I shout really, really loud, then stand very, very quiet, will I be able to hear the sound come all the way back round the world to me again?” And “Why did the clock stop, never to go again, when the old man died?”
(I’m not making that up. I remember this so vividly I can even remember what I was thinking at the time, and I did tell you I was weird – or at least, an unusual child)

Then, my mother started to eat some grapes.

Now - I do have to say, in mitigation, m’lud, that my mother has believed for her whole adult  life that every mouthful must be chewed a minimum of 37 times. Not 36 and not 38. 37. And in order to achieve this totally unnatural way of masticating, it is necessary to push the food back to the front of the mouth once it has been chewed the normal number of times, say 15 or 16, and re-chew it. So, even if you are not misophonic, this is not actually a very agreeable thing to listen to.  But that does not really explain my reaction. It was like having the inside of my skin sandpapered.  It was really annoying. I commented on it to Mum by saying “You make lots of noises when you eat those grapes, Mummy.” To which my mother responded by laughing and popping another grape in her mouth.  I distinctly recall that it took 3 grapes and I was out of there. I was so small I had to ask Mum to get me down from the table.

Since then, I’ve just had to learn to live with it. I’m usually ok if there is plenty of background noise. Partners are simply informed - not asked, told - that I will never eat a meal in a silent room with them. TV, radio, buzz of background chatter, all help to mask the noise. I had one partner who actually deliberately set out to annoy me by insisting we turn off the telly, then opening a bag of sweets to start slowly chewing on them while she sat right next to me on the sofa. Relationship didn’t last long after that.  At one time I was married to a person of the male persuasion who used to eat just like my Mum – he would chew even ice-cream, or porridge, for 37 times, AND clonk his teeth together while he did it. 

What I noticed about that was that mostly it doesn’t bother me at first, providing people are reasonably normal in their eating habits, but the better I get to know the person, the more tuned into it I become, and the harder it is for me to cope with it – because I can’t screen it out of my awareness. As I’ve known my mother all my life, she could be chewing with a DC10 revving up in the background, and I’d still be able to hear her.

So, as a family, we’d all be sitting at the meal-table and every time Mum started to chew a new mouthful I’d get this surge of anger. It freaked me out really. I mean, disgust and irritation at the bad manners of someone who can’t keep their lips together while they chew, yes – but anger? It would just come and go while she was chewing, switching on and off like a tap.

I’ve even tried some kind of psychological explanation – like -  Mum started that slow eating thing, and clonking her teeth together, as a form of dumb insolence when she was a teenager, because of the way she was silenced in her own family, and the anger is still there, and as I am an empath, I’m just picking up on that. I still think there may be something in my theory about her doing it as a reaction to her own family dynamics, especially as the teeth clonking is akin to teeth grinding during sleep, which is definitely associated with anger. But I was only 2 years old when I first had this reaction! Sensitive and too perceptive for my years, yes, but at 2 years old you believe everything your mother does is good and nice – you don’t start getting angry because of the noises she makes when she eats. You’re more likely to just eat the same way.

Since I moved in with Mum she has stopped clonking her teeth while eating, so at least that is not so bad, but she's added in  a whole range of other sounds that drive me crazy to do with her breathing. At first, when she was still mobile, I decided the only way I could survive meals was to eat my food as fast as I could and leave the table. I know Mum thinks this is bad manners, but it’s what I need to do. I’d shoot into the kitchen and start to wash up. Now I’ve been doing this for so long, I’ve forgotten how to eat at a normal speed.  

But now Mum is making noises all the time because of her breathing problems. She fills up with mucous towards the end of the day and makes this kind of continuous throat-clearing sound. And she kind of smacks her lips in what I can only describe as a wet Velcro type of sound, because her mouth is so dry. Even when she’s not doing that there is this kind of gravelly breathing sound. She can’t help it of course. But I also can’t help the way I react to it. It’s a physical reaction. I’d really love to be able to just sit with her in the evenings, but I simply can’t do it.
Reading this article, I did just sit and cry.   I never did that about the HSP thing, or the introvert thing or the synaesthesia thing. But this just got to me. It was the thing about the anger, really. I’m not an angry person. I hate being angry. I freak myself out with that. Reading this, I realize that I am not alone in this. My anger is just a physiological reaction and not a judgement on my mother. It’s not even really anger, in any real sense.

And of course. I never act out on it.

It’s my problem and it’s up to me to find my own solutions, as I have done.  I have kept silent about my distress all my life, apart from to a few close friends, and family. I know I can keep coping. But having a name for it and knowing it’s a recognized phenomenon, even though it has no cure or anything, makes it just that little bit easier.