A world wide panic and a father's death. How has it come to this.

Dressed as a smurf, for my father's dying.

Before I begin, I want to state that the home looking after our father was one of the very best.  It was never their choice to isolate and keep people apart.  They did not want to do that but they had to follow the rules.  Their care and kindness makes our father's death easier to accept because we trusted each one of the carers, staff and nurses.  This is not about them.  They remain the shining lights in dark situation, and I imagine there are many like them all over the country, doing the best they can in impossible situations.

Dad died last week.  I should have known it, I should have seen it coming but I refused to do so.  I thought I could keep him here with me at my house until I was ready for him to go.  Things did not go as I had planned, and I rushed at the last minute to his nursing home to sit with him as he was dying and told him to wait, he was supposed to come to my house where everything was set up for him, to die with us, with family.  Dad did not do that, he could not, and I saw how we can never anticipate our reactions to a death, nor how it will go.  Dad showed me that the dying he was doing was something I had no part of, despite my wish to be involved.  It had nothing to do with love, loyalty, relationships or me.  It was part of the grander scheme of things, far beyond my understanding, and rightly so.  It was simply Dad's time to go, he had done all the work for it, he had arrived at his exit point, and who knows what forces were there to bring him light, and peace and courage.  Who knows?  I felt my brother Dominic with me all that day, perhaps Dominic came and helped Dad leave.  He would have gone like a shot if that were true.  My and my brothers' task was to witness, accept, love and release.  As if it were up to us to release!  We needed to let him go for our own sake, because he was going whatever anyone said.  Our part was to love him, thank him and stand back from the process. 

Last week, the care home that had looked after Dad so well called me.  He is now palliative, they said, and you can come in for one hour.  I went, and I saw our father looking as people do when they are on the last leg of their journey.  He was unconscious, mostly.  His face had fallen into itself but his hands remained the same.  I held his hand, a warm, comforting hand, and felt it close round mine so tightly that I had to prise his fingers loose for comfort.  He did not wake, he did not say anything, but his hand on mine was strong and told me he knew I was with him.  The tight hand hold lasted a minute, before his hand fell away.  He had no more energy. 

In order to see him, I wore a gown, an apron, a mask and gloves. 

Psalm 15, his favourite, the
gentelman's psalm, he called it.

No one had been allowed to see him for three months and now, I had my hour, in a disguise that if he could have seen it, would have upset his Alzheimer's mind.  He had been a magical, imperfect, kind and private father.  He was creative, intellectual, eccentric and witty.  He was educated, curious and loved poetry.  At his school, he said, instead of writing lines in detention when the boys were being punished, they had to learn a poem and recite it.   This spoke to his creative, artistic soul, and he
began a love affair with poetry then.  I never asked him if he was often in detention in order to be given this access to poetry, and I do not know.  One of the wonderful things we all did as his illness progressed over the years, was to read him poetry which would spark his memory, and he would mouth the lines as we read them.

Here I was, then, having my hour with our father.  My brothers were not allowed to come, just one person. They had to be satisfied with my account of the visit.  My hour.

There is something deeply wrong with a system that finds it acceptable to keep the elderly, the vulnerable, secluded in fear behind a wall of protocol.  There is a deep injustice in this draconian effort to prevent death at all costs, from people who have no rights to disagree.  The wall of  isolation that kept my brothers and me from any contact with our father creates in our hearts anxiety, guilt, fear and anger.  How can we tell an old man with Alzheimer's that we have not forgotten him?  When our actions tell him that we have. How can we make peace with our old father who cannot understand why he is alone and where all the poetry has gone?  He would not complain, and never did.  He gave us the benefit of the doubt when our pre-Covid visits were sometimes far and few between.  But there was always the choice to make it up to him, we knew we could come to him and spend more time with him when we could.  And we did.  And suddenly, we were gone.  That was it.  The message was, you're on your own Dad.  Everyone around him disappeared behind blue gowns, blue hats, face masks and plastic gloves.  It was dangerous to go into the rooms in the home without proper reason, and there was supposed to be no touching, no contact and no connection.  Everyone was a risk, everyone was at risk, and in order to protect the home, the staff, the visitors, fortresses of fear were set up.  The bleakness is worth it, we were told, in order to protect us.  The unspoken side of this was, all these people locked behind this fortress of fear are a different kind of collateral damage.  They won't die of Covid 19, not if we can help it, but they will die of other things anyway and unfortunately, they will have to do it alone and be part of the fall out of this madness.  Can't be helped.  Rules is rules.

One of the seemingly hopeless
Face Time calls. 

The result of this cruelty, this hysteria, this dysfunction is that we who lost our loved ones carry a complicated grief and a terrible burden of guilt.  There are millions of us, families who had let their loved ones go as if into a war zone and were powerless to tell them it was not our choice.  Absolutely powerless to be anywhere near, and some of our people were left for months without the light of comfort and relationship from those who knew them best.  Like our father, he is just one, left to be a statistic in the worldwide fear of a pandemic.  He is just one person claimed by this massive tsunami of reactive panic and fear and not actually killed by the virus we are so sure is swirling around longing for us to touch each other and leap with lethal vengeance into our bodies.  He is just one person who was left without understanding it, in a room that no one could come into without a jolly good reason, and silence from the people to whom he belonged. His sisters.  His friends.  His family.  His remaining children, my brothers and me.  His beloved youngest son, our most wonderful brother Dominic, died in 2016.

On leaving the home after that first visit, with such anger and resentment for whoever makes these decisions to isolate and terrify people into mass overreaction, I decided to take our father out to die at home with me. My brothers and I put things into place and a date was arranged for a private ambulance to transport Dad to my house.  The room Dad was to come to was downstairs with doors opening into the garden with all the flowers and colours that heal our failing souls.  Everyone, the home, the district nurses, the carers, the GPs were on board.  They understood and helped make this happen within days.  All was ready, our father would not be isolated in a room without us any more.  And then the home called.  He may not make it, they said, and you can come now.  So I, unwilling to concede defeat at this late stage, called everyone involved and arranged, by a miracle, on a Sunday, a private ambulance to come that afternoon and bring him here.  He will be here, I said to myself.  I will make it happen. The carers, a palliative care nurse friend and her husband, a priest, were on hand to be here and make him comfortable so he could do his dying here with me.  With us.  My brothers were coming, my daughter was coming, his sisters and his friends would know he was here, all would be well.

A lovely man, our Dad

I made it to the home.  My oldest brother Ralph waited outside, my younger brother John was on his way, two hours away.  I had to wear an extra piece of equipment now, on top of my gown, my gloves and my mask.  I had a blue hat.  He is not breathing well, the nurses said, and I went in to see him.  I took the mask and gloves off.  His breathing was rasping, his face was sunk and his eyes were in another realm.  Hold on, I told him, hold on.  You are coming home with me. I called my daughter on Face Time, and she spoke to him.  The ambulance arrived, his breathing slowed to a gasp, and I said to the staff, get my brothers.  In no time, my brothers came with their gowns half on and no time to put on hats or gloves.  Dad was on the stretcher beside his bed, ready for transport, and it was obvious he was not going to stay.  None of us wore a mask, they got in the way of us from telling him we loved him. The ambulance crew, the staff, all melted away, closed the door, and left us to hold our father strapped on the stretcher, beside his bed, as he took a few halting breaths, let out a long sigh, and died.  Bless the staff and ambulance crew for that.  It just shows, they do not like this situation any more than I do, and they gave us those final important moments alone.

Later, when we left him, back in his bed, I put a sprig of foliage from the plant in his room, onto his pillow.  I always put a flower, or a symbol of love, on the pillow of someone who dies when I am there. With my husband Alan, there were no plants in his room so I put his model aeroplanes onto the pillow.  For a treasured old lady I was looking after, I covered her pillow with fresh lavender that she loved.  For Dad, I broke a piece of greenery from a pot plant in his room, and put it on his pillow.  Bye, Dad, we said, and no one cried as we left him alone again, and went outside into the sun. Later, alone in our own homes, we cried.

Here is my conclusion. 

We forget that life is unpredictable, and so is death.  Especially death. It is in our nature to want to understand things, to be in charge of things, and we do whatever we can to make a dying make sense to us.  Our father's death was caught up in a worldwide panic.  I do not say pandemic, I say panic.  It is beyond our control.  His dying was in the end, as beautiful as it could be.  It was not what we had wanted and it was not what I had organised and there, in that sentence, is the truth about death.  It is not what we wanted, not what I had organised.  Bringing Dad home would have been perfect.  It would have helped all of us no end, giving him a suitable send off.  It was not though, in the end, about us.  Our father left when he did because that was his story and he had to leave when he was ready, on his terms, not ours.  And if he was to have died in a soft hospital bed in my dining room, with the doors opening onto the garden and the breeze blowing and the birds singing, I would have loved that.  But it is not relevant, in the end, to what was happening to him.  In the end, we were with him.  His three remaining children were holding him, looking like giant smurfs in our blue costumes, as he took his last breath.  We made it.  That, in the end was what we all wanted.  He did not die alone, though it was on a stretcher beside his bed.  The final moments were with us, together, and that is all of our gifts to each other.  His to us, and ours to him.

The templates of our lives

The revelation

I had an insight the other evening, as I drove home down the country roads here in West Sussex.  I was leaving an late volunteering shift at our local hospice, and thought - so many of us feel we don't fit in.  So many of us suspect that other people have the answers to life, and that we do not.  It makes us feel vulnerable, it makes us doubt ourselves.  Most of the time we say to ourselves that yes - it is those other people who have it right and yes, we are wrong.  We have it wrong.  It takes courage and life experience to realise that we are barking up the wrong tree.  What suits others does not have to suit us.  And perhaps, there isn't just one right way, but many, and we have not found ours yet.

But if we don't feel we belong, it makes sense for us to think that other people, all of whom may look as if they are having a great time and belonging all over the place, they must have the answer.  It takes time, experience and self knowledge to realise that those others may feel as out of it as we do.  And we don't know if they feel they aren't getting it right, they don't let on.  In which case, maybe other people imagine we have the answers, and have our lives sorted.  Oh it gets complicated.  We just do not know.  But we feel, and feel very strongly.  And often, we feel very badly about ourselves. 

The insight that I received on the way home from the hospice that evening was that we think that there is a template.  A template of a correct way of being, and that we have to fit into it.  The template holds it all together, we feel, and if we fit ourselves into it we will be safe.  We will be one of those belonging, comfortable, enviable people that surround us.  We will feel good about ourselves, because somehow, we will be right.  We will be safe, and all will be well.

I imagined this template as a flat, person shape, made of light with a grid pattern inside. Each of us wants to lay down the image of ourselves onto it but only very few of us fit.  Our arms are too long, our legs too short, our shape all wrong.  Instead of the fit being perfect like those children's toy shapes that slot perfectly into the correct hole, we lay our image down and we are all over the place.  We do not fit.  What is wrong?  The template, or us?  So we look at this mismatch and blame ourselves for being wrong, and keep it to ourselves that we don't fit.  No one must know, we would be so ashamed.  We keep trying.  One day, we say, we will manage to fit our own image onto this perfect template of life, and then all will have been worth while.  And then I wondered about the template at all.  We all have one, a template to show us what we think we should be, how things should work, and what is right.  There is probably a general template in our culture about what is right and wrong, about how to proceed in our society, general rules of behaviour and expectations, and what not to do.  That template is big enough for us to fit ourselves into it, and flexible enough for it to mould itself around us, so that on the whole, we know what is expected.

The difficulty is the other template that we aspire to, that we believe is the right one to be in, the one
that try as we might, we cannot ever quite fit.  The one that we use to make ourselves feel bad about ourselves.  The one that we feel would make everything better if only we could lay our image down onto it and find a perfect match.  Oh dear.  And if we can't do this, we blame ourselves and feel we are the odd ones, and that something is secretly wrong with us.  We keep quiet about it because we feel ashamed.  And we just keep plodding on, trying to fit ourselves into the template we have for ourselves, the one that never quite works.

Everyone else has it right

The revolution.  

What if we realised our template was unrealistic, and threw it out?  What if we got fed up of not ever fitting into it, got rid of it, and created one that was tailor made for us?  Can we do that?  Yes.  There comes a time in life when we think, oh to hell with things.  What is all this struggle for anyway?  We lose patience with the lifestyle we aren't quite having, with the narrative in our heads that tells us we are not good enough, with the longing for things that are just too much trouble to get, and we rebel.  Damn it, we say, where am I in all this?  What do I really like doing?  And we are shocked to realise that we do not like pleasing people all the time in case they a) notice we feel inferior b) might give us something we think we need c) we might miss out d) we really don't know how not to.  We are stunned and relieved to admit we like lying around in shell suits on our days off eating cheesy chips and drinking orange squash.  We don't want to improve our minds with Tolstoy, we want to read Agatha Raisin.  We do not like doing good and neighbourly things for everyone all the time, even though everyone else thinks we are fabulous.  In fact we hate it and we would rather watch Great British Bake Off on telly every time.  Oh lord.  Perhaps our template needs to be more personal, more creative, less driven by other people.  What if everyone laughs at me, we may think at first.  What if I put on weight, and what if I don't get promotion, and what if all those other people (who we believe do fit the template we are struggling with) do really well and everyone loves them, and what if I just stop caring?  Well, what if?  If these things bind you (mustn't put on weight, mustn't miss the promotion, fear everyone else will do better than you etc), and make you unhappy, and never change, then they aren't for you.  One door closes, they say, and another opens.  Time to make your own personal template for your life, and have it fit you so well, and be so flexible and forgiving, you do not know why you didn't do this before.

I visited a dying lady recently, and noticed pencils and a pad on a table near her chair.  I asked if she liked to draw, and she was silent for a long time.  Maybe the question upset her, I thought, and prepared to leave her in peace.  But she spoke and replied that she had not used her art stuff since the 12 September.  That was the day she received her diagnosis, and was given a short time to live.  She stopped wanting to draw on that day.  But she said that for the first time she can remember, she is content.  She is happy.  No one in her family understands it, she said, but all of the pain and difficulties in her quite traumatic life, have gone.  Who would have known, she said, when my life was so hard as a child, and I was looking for any kind of happiness, that I would get it when I have a terminal diagnosis, and I cannot move.  She said that she had been trying in all the wrong places, with all the wrong people, all of her life.  She had been homeless, in prison, and had felt driven to find answers and to fight.  And now, like a paradox, with everything taken from her, she has found peace and a sense of who she is, and every day she is grateful.  She doesn't know how it happened, but it has.  And now, she says, she knows who she is.  She's sorted her funeral, her will, found a God that speaks to her, and she has found peace.  It was after this conversation, driving home, that I had my insight.  She has found, created, got, the right template for who she is.  She no longer needs the old one. 

Ditch the template! 

The realisation

I had an unrealistic template for most of my life.  As a child I felt I didn't belong, and that there was a proper way to do things that bypassed me completely.  I didn't understand why I had to try to be someone else. Who I was, I felt, was not quite acceptable.  I hated this, I felt trapped and restricted and wrong but I had to find a way to adapt.  Of course, I rebelled, and was torn between trying not very well to please everyone and trying to assert my real self.  I realise now that my real self was perfectly fine. I was a fairy, a free thinking, alternative, creative non conformist little dumpling but my mother wanted a well behaved, tennis playing, clean and tidy obedient little girl.  My poor dear mother.  She had struggled all of her life with rejection and invisibility and in a sad twist of fate, in trying to prevent me from ever having to suffer as she had, created for me exactly the same experiences. 

On the journey back home from the hospice the other night, when I had the idea about templates in our lives, I saw clearly the template my mother had created for me, and how it had never, ever been right.  I saw her own template for herself and how damaged that had been; how little kindness and expectations she had for herself.  Though I had given up the imposed template successfully over the years, some of the fear of rejection and being unseen and unheard remains. 

I don't want to wait until I am dying to find peace.  I had the image of this person shaped hole, with a grid inside, that I had taken from my mother, and how I had never wanted to lie myself down on it, had always fought against it.  I had never thought of it all like this before.  Now, I imagined myself lifting off of this wrong template and creating a new one, where I could lie myself down in it and feel at home, have it fit me, and feel safe and contained by something supportive and affirmative and light.  I can give up all this stuff that doesn't work, I don't have to deal with it a moment longer.  I am creating a new template where I do belong, and where being a dumpy fairy is a good thing. 

Peace at last.

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