Wednesday, 18 October 2017


 Now that the #MeToo thing has been going the rounds for a few days, we are inevitably beginning to hear from men who are also claiming victim status, including the claim that as many men are abused by women as are women by men. 

This is something I wrote a few years back, and it feels appropriate to share it again. 

When feminists talk about the patriarchy they are talking about a social, political, institutional, legal structure that condones violence against women by men.  When men beat up or rape women they are not doing it because they are mixed-up, or wounded, or they were pushed too far and couldn’t control themselves.  They are doing it because they believe they are entitled to do it purely and solely because they are men, and men are entitled to treat women like that.  They are acting on behalf of all men – saying, to the world of men – ‘I’m doing it the way it’s meant to be done.’
Yes - I get that not all men are like that. I know and respect that there are men out there who like and respect women and see their partners as that - not as punch-bags. I get that. I also know and understand that men are abused by women too, emotionally, physically, possibly even sexually. I get that. That’s not the point.  The minute you get into that ‘Yeh, well, what about men?’  thing, or ‘Don’t tar us all with the same brush,’ you have made sure that there can be no further discussion of these issues.  It just becomes competitive victim-playing. I get that if you are one of those men who respects women, understands that his woman life-partner is a companion, not just a commodity,  and wants his daughters to grow up strong and believing in their rights to exist as an equal, then it must feel like shit to hear women talking about ‘All men.’  I get that your hackles rise up defensively when women publish statistics about the numbers of women killed by their male partners, or raped. 
I also do know that men are abused by their female partners, and even though they are rarely in fear of their lives, the damage caused by emotional abuse is still horrendous. There is an appropriate forum and manner to discuss these issues and I’m glad that men are finding these.  But not in the context of comparing it to the violence done to women by men throughout the world.

The best way to make that point is to compare it to racism.  We live in a world that culturally, politically, financially, legally, institutionally gives whites a privileged position in relation to people of colour.  That’s just a fact.  I didn’t make it like that, I haven’t done anything to reinforce or justify white supremacy. I know I’m not a racist and I treat everyone with respect and never make assumptions about them because of their race or culture.  But I am white. I live in a white world. And when I see on the news that some black guy has been shot by a white guy, just for being black, when I read the statistics of the rates of imprisonment of blacks compared to whites, when I see the results of social deprivation caused by unequal treatment – it’s not the time for me to start saying ‘Yeh, well, I’ve had my problems too, you know. I didn’t get to where I am in life because of privilege and I had to work for it,’ etc etc. It’s not the time to start whining about how blacks just assume I’m a racist because I did something that upset one individual – all that crap. 

Competitive victim-playing does not change anything. That’s the purpose of it – to stop change from happening.

When you, as a man, say ‘Yer, but what about…’ when you are confronted by those statistics, then you are condoning the status quo.  You are allowing the only important issue to be side-tracked, and that issue is ‘How can we change this?’  

There is only one response when I as a white woman see a black person being arrested and harassed by white police, being beaten, killed in custody, any of that, just because they are black – and that is to stand up and shout ‘NOT IN MY NAME!!’
There is only one response by a man when he see the statistics about rape and violence by men against women.  Stand up and shout ‘NOT IN MY NAME.’ 

When you do that you are saying ‘I, as a man, do not condone this.’
That is the only way things will change.

Friday, 7 July 2017


Thinking about silence.
Being silent in a group.
Thinking about patterns from our families of origin.
Being on a retreat with three other women and the group facilitator and seeing one group member play out her family drama in our midst. Feeling forced to fit into the mental mould she brought with her, watching her filter every action and remark through the lens of her own old, old pain. Being unheard, because she was too attached to what she believed to be true, to be bothered to see and hear what was really there.
Feeling familiar.
My old drama, my family dynamic.
On the margins.
I’m not actually that quiet a person. As a child, away from my family, I was known for being rather talkative. I was made to sit outside my classroom to work on my own, so I didn’t distract the other children.
But at home I was the quiet one.
The female one in the middle of all those boys.
Didn’t really count.

Before I came back to England to live I was involved with running a festival in West Wales. We’d have all these meetings throughout the year, running the organisation that ran the festival. My partner and I were both involved. My partner is one of those quiet types who doesn’t say anything till she has something to say. And is a bit deaf, so misses quite a lot of what other people have to say.  And when she did speak, she found people didn’t listen to her. She used to complain about this, so I started to study and work out why some people in a group get listened to, and some get ignored.
We couldn’t put it down to gender in that group, as we were all women. So what was it?
It turned out to be quite simple – if you want to be one of the voices that gets heard in a group, then make sure you say a lot right from near the beginning of the meeting, especially if it’s a new group and no-one knows enough about each other to have any preconceived ideas.
Make your mark.
Get your oar in there.
Right from the off.
People are marking who are the ones to take notice of and who hasn’t got much to say for themselves.
We’re doing this without noticing we’re doing it.
Even the most skilful facilitator can get caught out by this.
The people who’ve been hogging the attention only have to signal with body-language that they have something to say, and everyone will turn to them. And the one who’s been quiet up till then and had started to say something will be interrupted and ignored.
Even if people do listen, they somehow don’t take it in in the same way – they’ve already decided that person doesn’t count.

So – for myself – I choose how I want to be in a group. Quiet or talkative. I enjoy just sitting and listening and watching people, but I can do the talkative, extrovert thing too.
And time and time again I find my theory proven correct. If I choose to be quiet, people form an impression of me as shy and self-effacing. If I subsequently want to be more seen and heard, I have to work a lot harder than if I’d gone in with a splash at the outset – when I’m least likely to feel like doing that.

So now, in my ripe old age, I will consciously set aside my preferred pattern of waiting and watching before I will get involved, and I’ll get in there at the introductory stage, to secure a seat in the front row, just so I can be sure of being seen and heard at a later stage, if I want to.  Once I’ve done that, I can spend time just watching and listening, as long as I get something in every now and then to keep myself in the others’ radar fields.

But how do you break a pattern that’s been in existence for over 60 years?
How can a quiet, marginalized one make her voice heard loud and clear after a lifetime of perching on the side-lines of people so used to being the centre of attention they don’t know or notice they have marginalized you?
That’s the problem. The ones who have been getting all the attention never know they are hogging it and preventing others from being heard. They think the quiet ones are just quiet, not silenced. They may even deny they are quiet. My family of origin probably don’t see me as backward in expressing my opinion about anything, even though I have spent hours throughout my life saying nothing while they talked over me.

So when I did speak – clearly, with a simple, clear request, a need – they somehow filtered my clarity into some kind of muffled noise that couldn’t quite be heard. And a massive miscommunication ensued.
The broken promises had apparently never been made.
It was like I’d been talking under water, or something.

And I’m sorry to say there is only one way to break a mould that has been in place for so many decades – that is to smash it completely to pieces.
There’s no place for politeness, or sweetness, or trying to please.
This is what anger is for. It’s the only thing that can break the constraining prison of old patterns that won’t be argued or reasoned away. Because how can you reason something away when people can’t even see it exists?

So – I’ve smashed it. Because I refuse to stay trapped in that glass coffin, sleeping my life away just so others can continue to feel alright about themselves. 
If they are shocked, it’s because they never noticed, for all those years, how overlooked I was.
They are privileged, white men who are being confronted with their own sense of entitlement, in the face of my needs, and they won’t own it or recognize it.  

So be it.

I can imagine the broken pieces being put back together in a new way, glued with gold paint outlining each repositioned shard – like one of those Japanese things.
But that can only work if each broken, bruised, wailing, hurt piece is truly seen, truly heard, truly taken responsibility for, and brought back to be placed with sorrow and contrition in its own rightful place by those who hurt and bruised.

And it can’t be me who does that.
Because it always has been me before. Time and time again.
It doesn’t change anything.

So the broken vessel will lie there and wait – while I get on with my life.

Monday, 19 June 2017

The importance of being able to say no

Many years ago I read a booklet on why it’s important to learn to say no.
What stands out for me from that booklet was the simple advice that:
If you say no then people may be disappointed, but at least they know where they stand with you. If you find you can do what they asked later down the line, then that’s a bonus. No-one will think less of you for doing that. So – if you are unsure about following through on any request, it’s best to say no.
If you say yes - then mean it. Even having to let people down for a legitimate, unforeseen circumstance after you’ve committed to doing something, can be hard enough, but if it turns out you never really intended to follow through, or had misgivings at the time, then that is likely to cost you trust, respect and ultimately your friendship.
If you say no, and the person can’t take it, then you will know where you stand with that person. If that person does not respect your boundaries then it’s good to know that.
Some people say no as their default, because they can never be bothered to put themselves out for anyone. Fine- that’s a clear message. Don’t expect any favours from that person.
To me, being clear about boundaries and only saying what you mean are mature adult social skills. I get it that when you are young you can feel pressured into pleasing people, but by the time you get to my great old age you should bloody well know better. If you do make that mistake, of not wanting to upset someone and agreeing to something that you didn’t really mean, or hadn’t had time to think through, then fine - we all make mistakes, even when we think we’ve learned our lessons - but you’re still responsible. It was your mistake, so own up to it. If you really want to retain any respect from the person you’ve let down, then it’s best just to own up and admit that you did make that promise but now you realize you can’t go through with it. If you opt for pretending you never made the commitment, then say goodbye to respect and any further basis to your friendship or relationship with that person.
Speaking as someone who has been painfully let down because of some serious miscommunications like these, I can vouch for just how it’s adding insult to injury that those who let me down now can’t even take responsibility for their own actions. It’s hard to believe that people who in every other context of their lives are quite dominant and self-assertive are really people pleasers and haven’t learned to say no when appropriate. I’ve been through months of emotional devastation because of being so badly let down by people I believed I could trust. I’m finding my balance now, but it’s been hard. I’ve had a lot of rants and said a lot of bad words about it to myself and a few to the people who let me down, but haven’t posted any of it on this blog or anywhere else while I was going through so much emotion. This is now a quiet reflective comment. I hope I phrased it in a way that may help other people to understand the importance of clear boundaries and just what hurt you can do to people if you don’t have them.

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.