“Rage, rage against the dying of the light” Dylan Thomas

Something written a couple of years ago after my lovely step dad died in hospital; his ending was not as we would have wanted it to be, not what he deserved.

It was her stillness that first caught his attention.  Glimpsed through a half-open door; she was serene.  Other visitors watched the television screen, read magazines, kept up a stream of inane chatter and occasionally fell asleep.  She did none of these things but sat quietly holding the hand of the man in the bed.  A man who slept most of the time but when he was awake, shouted and screamed foul abuse at her.

Ben marvelled at her composure.  He had been in his new job for two days and could see her from his office across the corridor.  He never heard her so much as raise her voice in response to the vile accusations and recriminations that poured forth and polluted the otherwise tranquil atmosphere of the hospice.  Fearful for this woman’s safety, Ben sought advice from his supervisor Marian.  She had smiled at him benignly.

“Speak to her.  It’s the only way that you’ll understand.  I could tell you all about them but not as eloquently as she can.  Her name is Lily.” She looked at her watch.   “I expect you’ll see her out in the corridor in about half an hour when the nurses carry out their obs.  Take her for a coffee?”

Ben returned to the office and left the door wide open.  He wanted to cheat and check the computer system but Marian’s words had made him curious and he felt that he owed it to this obviously dedicated woman to let her explain why she suffered the abuse so calmly.

A sound in the corridor outside made him look up and Lily was standing in the doorway.  He got to his feet quickly and walked towards her, extending his hand.

“Hi, my name’s Ben.  I’m new here. I’m an advocate; I speak for people who don’t have anyone who can make their wishes known.”

She took his hand in both of hers; warm soft hands that gripped but didn’t crush.  “Marian asked me to come and see you whilst the nurses are seeing to my Tommy.  Are you free to come for coffee?”

“Yes,” he replied, slightly taken aback. “I’d love to.”

Closing the office door behind him, he followed her into the lounge and Lily poured them both some filter coffee.  She led the way to two armchairs that had a view of the sensory garden; a place guaranteed to both stimulate and soothe.  Ben could smell lavender and rosemary in the breeze.

“I hope Tommy hasn’t disturbed you; he does shout so but he doesn’t mean any of it.”  Lily took a sip of coffee and smiled at Ben.

“I was a bit concerned; for you having to listen to all that abuse.”

She shook her head and smiled again.  “He would never hurt me.  We’ve been together sixty years and he never so much as raised a hand to me.  We’ve always sorted things out between us.  I wish you could have known him when he was younger.”

“Sixty years is a long time to be married.” said Ben.

“He was such a charmer; when I first met him he was running a greengrocer’s.  My friend Sylvia introduced me to him and I used to pop into the shop in my lunch hour.  I worked in the haberdasher’s across the road.  He was a stickler for business though.   If I went into the shop for just an apple I had to pay for it, but when he took me out for the evening he’d pay for everything and make me feel really special.  He was so dashing; always well-turned out.  He’d been around a bit too, he did his National Service in the RAF and I think I fell in love with him the first time I saw him in uniform.”  Lily giggled and smiled to herself, remembering the moment and the handsome young man in his airforce blue.

Ben still looked dubious and she leaned across and touched his hand.   “We have two children; two lovely girls.  They married well and I have seven grandchildren and three great-grandchildren all together.  Not all of them live close by any more but they visit regularly, and we used to go and stay with them till Tommy took ill.  My eldest granddaughter keeps asking me to have a break from all this but I can’t leave him, not now.”

“This must be terribly draining for you.  Marian says you stay here all the time.” said Ben.

“No, no.  I have a little break when the nurses see to him.  He doesn’t like me to be present when they do the personal things.  Tommy’s always been a proud man like that. He’s in so much pain and I can’t bear the thought of not being there when he finally leaves me.  The only time we’ve ever been parted was when I was in hospital after I had the first baby.  I had my second at home.  They didn’t make such a fuss about having babies at home then.  You just got on with it.  Like dying really.  Part of me wants Tommy to let go; just go to sleep and not wake up but that’s not what we agreed to.”

“What do you mean?” asked Ben.

“My Tommy didn’t hold with painkillers.  He wouldn’t even have a jab when he went to the dentist, and when he started getting these pains in his stomach I had the devil’s own job getting him to the doctor.  I only went with him the once, after that he went on his own and he wouldn’t tell me what the consultant said.  He didn’t want to worry me but of course I knew things weren’t right.  He stopped eating and drinking; I tried everything to tempt him but nothing appealed to him.  I came home from doing some shopping with my granddaughter and found him on the floor.  His hands and feet were purple and swollen; I’d only been out a couple of hours.  We had to call an ambulance and I thought he was going to die.”  She gasped a little at the memory and pulled a tissue from her cardigan sleeve, dabbing it at her eyes but smiling nevertheless.

“Tommy won’t take the drugs that would help him.  He says that they will take his memories away; he wanted to see my face and always know that I was there with him.  The doctors and nurses tried to explain to him that the pain would become unbearable and that there were things they could do to keep him comfortable but he won’t have it.  It comes in waves you see, the pain.  He sleeps for a while but when he wakes up it hurts him so much and the only way he can cope is to shout and scream at me.  He doesn’t mean those dreadful things and he can’t say them to anyone but me because no one else in the world loves him the way I do.  No one else understands him like me.  Marian says that eventually his body will stop fighting but his mind is still so alive and scared.”

“I could sit with him, if you wanted a longer break, to get out of here for a while.”  Ben desperately wanted to do something but no amount of training could help him think of any other way to help.  She took his hand in hers again and shook her head gently.

“Bless you.  You are such a lovely young man.  He wouldn’t be happy if I wasn’t there and I couldn’t bear that.  Our time together is precious; I love to watch him sleeping peacefully but when he wakes and shouts, that’s when I see my Tommy again.  I know that I have a heart full of memories and that I’ll never lose them, but Tommy is still here and being the man that he is, he can’t go down without a fight.”  She rummaged in her handbag and brought out a small green leather-covered book, the gilt lettering on the cover worn off through much use.

“Do you know the work of Dylan Thomas at all?  I love his poems.  My granddaughter bought me this little book because I remembered a poem we were taught at school. “Do not go gentle into that good night, rage, rage against the dying of the light’.  Such beautiful words, and so true to the way I feel about my Tommy.  Anger isn’t always a bad thing Ben.  If you’re going to make a career out of this advocacy thing, you need to look at things from all sides before you make your mind up.  You’d written my Tommy off as a bully and marked me down as a victim but I’ve had a happy life and I’ve no doubt that my children and their children will do their best to make sure my life is as good as possible once Tommy has gone.  I must get back to him now.  I’ll see you tomorrow I hope.”

He watched her go; squaring her shoulders in readiness for the next onslaught and felt humbled.

Ben arrived early the next morning; fired up with a new determination to listen more and keep his mind open.  The door to Tommy’s room was ajar but Lily wasn’t there.  Ben knocked on Marian’s door.

“Where’s Lily?  I really enjoyed meeting her yesterday. I have a few more questions for her though.”

Marian motioned him to sit down.  “She died just after midnight.  A massive coronary and totally unexpected.  It was Tommy’s shouting that alerted us.  We had to sedate him; not a choice we wanted to take in view of his strong feelings about pain relief but there’s no one to sit with him, his family are on the way but won’t be here for some hours.”

“I’ll sit with him.  I’d like to – for Lily’s sake.”

Ben sat next to the bed and steeled himself for the time when Tommy came round from the sedative.   This was what it was really about; making sure that Tommy had his wishes respected even though Lily couldn’t be there to see him rage against the dying of the light.

Frail, confused, in pain and sometimes wanting to give up the fight –  we can’t choose the ending but we can show tolerance and compassion to those who are vulnerable, whether their history is known to us or not.  Spare a thought for those who care because it doesn’t always come easy.

 

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