Today is my lovely Dad’s funeral.  Correction – Step Dad – as the po-faced lady at the bank would have it – not a blood-relative at all.   Neither is my husband – but apparently I’m splitting hairs.

We prepared for this though.  When my lovely Mum died intestate back in 2009, my Dad went off to the solicitors and had a will drawn up; he also had lasting power of attorney papers sorted out so that if he ever lost his marbles (his phrase) my hub and I could step in for him. My brother and sister live miles away so it was practical to have my hub and I as primary executors of the will.  For the last 12 days since he died, we have worked like mad to honour that position of trust and hey – we’re nearly there.

There were the 10 days of hell at the hospital first.  That first night in A and E discovering that my Dad’s illness was terminal and that he had known about it for months but chosen not to tell any of us or seek any active intervention because he didn’t want us to worry. It was a long night and between us we put the world to rights and once the initial impact wore off I made sure that I really knew what it was that he wanted.

Settling him down on a ward that I knew had a bad reputation and stank of stale urine, my first thoughts were ‘how long have we got left and can’t we find a better place for him to die?’

Precious time was lost due to the cursed Jubilee.

When we brought him in to A and E that night, he admitted to me that he hadn’t eaten for a couple of days.  His poor hands and feet were swollen and purple; nurses and doctors all tried and failed to find a vein strong enough to get some fluids inside him.  They managed eventually and when we came in the following morning, he seemed quite chipper.

By Tuesday – the second rainy bank holiday – he was almost as bad as the night we’d brought him in.  Hub and I visited and found that he’d been taken off the drip but that his table – way out of his reach – had three plastic beakers of cold tea, one of water and one of squash that we’d made for him the day before.  His hands were swollen and purple again and I kicked off at the nurses who had left him to get in that state.

Bad things were going on in that ward.  I heard one of the nurses complaining that the Director of Nursing had taken away the nurses station from the corridor because it encouraged the nurses to sit and chat instead of looking after the patients.  Good move!  Trouble is, they congregate now in the room marked ‘Sister’s office’ and even with the door left ajar, once inside they are removed from their main purpose again and difficult to dislodge.

Hub and I listened one precious visiting hour (there were only two –  1530 to 1630, and 1830 to 1930) whilst a young nurse sat next to a patient and announced that she had to do a risk assessment on him and did he mind?  As she didn’t explain to him what a risk assessment was and why she had to do it, he – like so many other patients and relatives on the ward – accepted that it had to be done.  She didn’t draw the screens round him or make any attempt at confidentiality.  She asked him a range of questions, some of which were particularly personal and we were all soon privy to his bowel and bladder issues as well as his tendency to fall over. She delivered her questions in a disinterested monotone; reading them off the risk assessment sheet with no attempt to tone down the medical jargon and explain what the questions meant.

She moved across the ward to a patient who actually had visitors and proceeded to carry out the whole procedure again – in front of his visitors and eating into his precious time with his family.  he didn’t like to say no in case he offended her.

Fortunately for her, she got called away before she had the opportunity to try this out with my Dad.  My lovely Dad who was back on a drip now and wasting away before my eyes.  He was obviously in pain but wouldn’t ask for pain relief. How many times did I say to doctors and nurses  “This is a man who didn’t even have injections when he went to the dentist.  He is a kind and gentle man who doesn’t like to make a fuss, but I can see the pain in his eyes and in his face.  I am his advocate and although I’m not medically trained even I know that the cancer that is eating away at him is causing him pain.  Help ease that pain please?”

They offered him co-codamol and a drink that he couldn’t swallow.  The young and not very helpful doctor talked about chemotherapy and investigative surgery but had to agree that these ‘solutions’ would not help him and would only cause him more pain’.

College Boy and Uni Boy managed to get in and see their Grandad.  The Grandad who was so proud of them and their achievements, who made sure that he always had a fiver in his pockets for each of them, whose eyes shone when he spoke about them.  He managed to rally round enough to speak to them and to tell me to look near the bed – by the carpet – and where he had left the will and Mum’s probate.

When we visited his house later that night and moved the bed, we found the bundle of cash left there to deal with the immediate things when he’d gone.  He also left a comprehensive filing system for his affairs – he never threw anything away but wrote on the outside of the envelope so we wouldn’t have to rummage too much initially.

On Friday morning hub and I got called over to the hospital to see the doctor.  She finally admitted that having spoken to his consultants, there was little they could do but make him comfortable.  “And pain-free?”  I said and was told that he had now been written up for diamorphine. I spoke to the ‘end of life’ nurse about the possibility of getting my Dad transferred to our local hospice and she said she’d look into it but that it couldn’t be done until the consultants had a better idea of how long he had.  At that time we were hoping he’d make it to Father’s Day but celebrating his 84th birthday in August didn’t seem to be a realistic.

The rest of the family came up from the south, in filthy weather conditions, but were able to spend time with him that night.  We’d been told that we could visit whenever we wanted now.  It took until ten o’clock that night and only then at the insistence of my family, to get him the diamorphine that had been prescribed for him that morning.

Our family went back home the next day after saying their goodbyes.  Hub and I went in for afternoon visiting and found my Dad, very obviously distressed, sat bolt upright in bed, screens pulled right back and the ward awash with visitors with rampaging kids who were laughing as he grimaced in pain.

We pulled the curtains round quickly and I sent hub for a nurse after discovering that my Dad had tried to pull the restrictive hospital gown away from his neck and in doing so had dislodged the canula in his arm so that it was sticking upright, the drip tubes were useless and bent,  and his hands were swelling up again.

A student nurse came.  She explained that she had sat my Dad up so that he could see what was going on and put the gown on him instead of pyjamas because it was easier – easier for whom exactly?  I know the answer.  The  screens were drawn back so that nursing staff could see him – but as we pointed out – no one appeared to have been looking.

We got him settled down eventually, and the squeeze of my hand and the look in his eyes were enough to know we were doing the job he needed us to do.  I spoke to another junior doctor – who seemed confused about why the previous doctor hadn’t put him on the care pathway – no more blood tests or drips – just peace and quiet and pain relief.  She promised to get him on a side ward as soon as she could.  She’ll make a brilliant doctor – unlike the officious contemporary we’d previously been dealing with.

When I phoned on Sunday morning, I was told that he was being n moved into a side room, so I decided to wait till the afternoon before visiting.  Poor hub had picked up Norovirus when visiting the ward (together with a doctor, two nurses and several patients) so College Boy came in with me.

I frequently embarrass my sons; I see it as part of my motherly duties.  Uni Boy shrugs it off with a resigned and mildly sarcastic comment but there are times when I only have to breathe and College Boy is consumed by discomfort at my behaviour (over familiarity with his friends is guaranteed to raise his  ire).

My Dad was in a side ward right at the end of the corridor.  It was a warm day and the little room was sweltering.  Not only had they put the hated and restrictive hospital gown on him, but some bright spark had also put a high-necked tee-shirt on underneath it.  When we got in he was pulling at it, pressing his feet against the end of the bed as the pain came in waves and I couldn’t find his chart to see when he last had any diamorphine.

I ran out into the corridor and got a nurse, who said she’d help but didn’t come back.  Ten minutes later I accosted two doctors who were chatting in the corridor (I assumed they were doctors because they weren’t wearing uniforms and had stethoscopes round their necks).  I didn’t shout.  I barked.  I demanded pain relief for my Dad STAT!

It was only whilst I was stalking away from their shocked faces and back into my Dad’s room that I realised that STAT! is American medical terminology and I’d probably been watching too much ‘House’ and ‘Scrubs’.

To his credit, College Boy didn’t reprimand me for my excruciating behaviour,  he just sat patiently holding his Grandad’s hand whilst I raged around the room.

The kind nurse came back with the diamorphine, accompanied by the extremely irritating ward sister and between them they cut off the offending tee-shirt, my Dad was in too much pain and too frail to have it taken off any other way.

I calmed down and got agreement that I could bring my Dad’s radio in.  The tiny room had nothing else to distract him from the pain.  A phone call to hub and half an hour later the DAB radio we brought my Dad a couple of years ago and that was his constant companion in the house, was on the bedside locker and crooning out Radio Two.  My Dad didn’t open his eyes but he squeezed my hand.  The irritating ward sister said it was hard to tell when my Dad was in pain because he ‘wouldn’t communicate with the staff’.  I nearly communicated with her with my fist.

The kind nurse said she would be looking after my Dad now, and would speak to the doctor about having an auto-injector system to deliver pain relief – something that should have been done much earlier when they decided to stop the interventions. Hub was a bit better on Monday and came in with me; I’d warned him that if I found the radio turned off, no auto-injector and another unnecessary tee-short – I was going to really kick off.

The radio was on.  The auto-injector was working. there was no tee-shirt under the hospital gown, and even that had been pulled away from his neck.  The kind nurse had given my Dad a shave, a wash and  brush up.  We went home feeling  slightly less frantic that night although I still wanted to punch the irritating ward sister for simpering at me as we left.

I’d taken two days off to finish my current OU assignment but that got pushed onto the back burner. I was also down to attend an afternoon course on the Mental Capacity Act, and though I had an idea that some of the content might be a bit close to home, it was a course I really wanted to do.

I made the right decision; and as we discussed lasting power of attorney, wills, and most importantly giving a voice to those who cannot speak up for themselves, rather than being upset, I felt validated in the choices and decisions I’d been making for my Dad.

Hub and I visited that night.  For the first time my Dad was asleep and didn’t even squeeze my hand.  I said goodbye and told how much I loved him, and how happy he’d made my lovely Mum, what a wonderful Dad and Grandad he’d been to me and hub and our boys. The kind nurse was there and she gave me a hug before we left.

The ward phoned at ten past twelve that to say that he’d gone.  he didn’t make it to Father’s Day.  When lovely Mum was dying in hospital, my Dad and I decided that we didn’t need to be there to see her go, and I made the same decision about him.  Death isn’t always peaceful and my memories don’t need to be marred by a tearful bedside scene set in the ward from hell.

So today is his funeral.  We have the same funeral company that we had for lovely Mum’s and the same kind vicar.  Some of the family are able to make it up here; I managed to make contact with a few of his friends and some friends of ours will be joining us in the pub to eat and drink in celebration of my lovely Dad’s life.

I used Facebook to update friends and family through all this; it’s less painful than phone calls and reaches out to even the most far-flung of our best beloveds.  The comments that came back all had the same sentiment; how sad was the loss of such a kind and gentle man.

My Dad, for he was that to me for over 40 years, loved my Mum, he loved beer, watching sport, jazz and laughing.  Harry Hill was his favourite although he enjoyed QI, Mock the Week and HIGNIFY especially. He was a man of depth and many hidden talents.

I keep saying to myself ‘I must tell him that, or I must ask him about that’ and pulling myself up short because he isn’t there to talk to anymore.

But like my first Dad and my lovely Mum, and all the other people who are up on the ledge waiting to meet us, I’ll carry him in my head and know that I’ll find the answers to my questions somehow.

Give Dexy a cuddle from us all as well please?  We miss him too.  Love you.xxx