93: New routines

I’m writing this blog sitting in my parents lounge.  Mum is sitting upright in her Laura Ashley chair which keeps her hip at 90 degrees, Teresa is sitting on the floor, Bonnie the dog is sitting on the sofa and dad is lying in a medical bed.  He is fairly zonked out as the carers have been this morning and two young women helped dad up sit on the commode and washed him, applied menthol cream to him, re dressed him and now he is zonked out.

There have been a variety of healthcare professionals who have visited over the past few days.  St Luke’s Hospice nurses who assess dad and instruct others who are not so well informed with end of life care.  The GP, a young woman from Northern Ireland along with a third year medical student reviewed all the meds and decided it was time for a syringe driver.  The urgent care district nurses who came out at night to give dad an injection and settle him.  The St Luke’s nurse who set up the syringe driver might need some support as the evening (only the night before last) he came to unlock the silver box bag of controlled drugs we had brought up Fish and Chips.  We ate our chips – Mum, Andrew, Teresa, Phoebe, Nick and I and dad seemed to rally.  He sat up and was quite lucid.  We started to sing songs – To the Land of Macleod by the Corries, A life on an ocean wave, the ballad of the Green Beret (a truly dreadful song about the US Marine Corps) and dad joined in.  The poor St Luke’s nurse sat through all of this and then the telling of terrible jokes. Dad seemed more settled.  He sat up and held hands with mum.   The syringe driver has a potent mix of “comfort drugs” to keep dad less anxious, more settled, to stop any pain from renal failure.  The drugs are kept in a locked box and administered over a 24 hour period.  I stayed with mum until 10pm as then the Marie Curee nurse arrived.  Her job was to sit with dad and keep him comfortable and she did just that.

Dad really appeared to decline the next day (Wednesday) he appeared exhausted and everything seemed more of an effort.  His breathing is very ropey and he spent a fair bit of the day asleep.  Getting on to the commode was an effort for all.  Two nurses from St Lukes came to visit him and part of their job was to organise more overnight care.  My brother did the shift last night until I arrived early this morning so he could go home and get some sleep.

Today, Thursday dad has slept away most of the day.  The district nurse has come to top up the syringe driver and fit a catheter.   This should stop dad wanting to get up as he doesn’t have the energy to do so.   His breathing is loud and rattly.  It is all rather distressing. Yet… he can still communicate with us.  He asks for tea and makes the odd comment.  They do say that hearing is the last thing to go.

I read a book, recommended by a great chum, who has a senior nursing post dealing with prem babies.  The book is written by a palliative care consultant – Kathryn Mannix, it is a series of stories about the end of life.  It vocalises the fears people have about death and explains how it can be made comfortable, peaceful and kind. She outlines the way in which the body fails – through cancer, old age, diseases and says there is a pattern.  The patient sleeps more, eats and drinks less and gradually drifts off.  Just before the end of life there is agonal respiration a very definitive type of breathing which is an indicator that the patient is going to die.  We haven’t reached that point.

I thought by reading this book I would be able to disassociate death with my dad and I’ve been sadly mistaken.  Seeing my dad’s decline and the effect is having on the entire family is one of the most difficult things I have experienced.  Everytime I say “goodbye or goodnight” he says “love you” and I then cry in the car.

We were told, I was told by the consultant that when dad was discharged he would have a “good week to ten days” that was on 30th September.  Today it is the 17th October, dad is confined to a bed, syringe driver in place, catheter fitted, sleeping, sometimes saying “oh dear” or “that is wonderful”, having the occasional sips of tea.  So Kathryn Mannix is right there is more sleep, less drink, less food and he is still with us.

92: Big Eats and farewells

Sunday roasts and celebratory dinners have always been BIG in our family.  On Wednesday 2nd October we had everyone home.  Dad was well enough to come to lunch.Last meal This is the Macleod/Osmaston family.  From left to right.. me, Rob Parkinson, my Godmother Yvonne Parkinson, my mum Sheena (new hip!!), Sandy aka Sandbag or Grandad or Dad, Miles (down from Cheltenham), Marcus (from Seattle), Phoebe – who has been a wonderful help, Andrew (my brother), photo taken by Teresa and Nick my husband.

We did roast gammon, cauliflower cheese, green beans and roast potatoes… I had some left over roast chicken.. or did until Bonnie, Andrew’s dog jumped up and pinched some.  We laughed and laughed, sang daft songs, everyone did a turn – we made an up channel night. This is a Royal Navy tradition… a last P up before coming into port after being on deployment.  Marcus did a rendition of the “Frogologist” a poem he’d learned when about 7 years old, Phoebe did a skit from Monty Python, Teresa and Bonnie did some tricks involving chicken, Nick and I reprised our sea world seal and trainer routine.  He put a kipper on a stick, I put on a bin bag and we acted out a seal training routine – this was first done on the last night of a family holiday in Portugal many years ago.  Dad sang a song about a dockyard gate.  It was one of those moments which will always be treasured.  Tears, laughter and love. Dad used to say to me make memories and lock them in your heart.

There were mostly tears the following day.  Marcus is the eldest grandchild.  He is married to a lovely American girl and they live in Seattle, Washington USA.  We don’t get to see him that frequently.  However, when he knew about “Sandbag’s” condition he spoke to his boss and got the first flight home.  He was in Plymouth for 48 hours.  On Tuesday 1st October he got off the flight, onto a train to Plymouth, got in the car and saw his Grandparents.  On the 3rd October he spent a couple of hours with them and when we collected him to take him back to to station and repeat the journey he sobbed.  He knew he wouldn’t be seeing Grandad again.  It was awful and terrible to see such raw grief.

Being a parent is hard.  Being the daughter of a dying parent is hard.

91: The importance of family, friends and Facebook

Today I’m writing these blog entries sitting at my mum’s dining room table.  This is in the sitting room of their flat.  The blue chair is currently at my house, the sofa has been swung round 90 degrees to accommodate the hospital bed that dad is lying in.  The bed arrived last Friday and dad was hugely relieved to have it assembled in their flat.  He wants to die at home surrounded by all his things.

We had been told before his discharge that he could expect a good week to ten days, reasonable quality of life and then the decline would be significant.  Knowing this it was action stations to get everyone home.  I’d given updates about ward life via Facebook and on Monday 30th September the great escape from Derriford happened.  Below are some of the FB entries.

26th September :In Meldon Ward with Sandy Macleod…my goodness these SRN, HCA and support girls are cheery and hardworking. Sandbag has had porridge , banana, tea and banana milk for breakfast, been in the shower with Gemma (not sure what Sheena will make of this) and waiting to see Dr Nick from Ireland. The escape plan using sheets has been dismissed as we are on the 10th floor.

27th September: My bed making on Meldon Ward is not up to scratch but my tidying is … Sandy Macleod has had a shower, shave, porridge and toast…so far we have read the “The Shed” and resisted getting an elastic band to ping sweeties into the open mouth of the poor old boy in the bed opposite.

27th September: So I may have exaggerated a little by saying Sandy Macleod won the Falklands ALL by himself. Sadly Dad’s most recent battle is not going to have such a positive outcome so if you need to be in touch with him I would do so sooner rather than later. Life is precious, to be loved and to know you are loved is a wonderful thing. If you are one of his chums then Bob Blair is a good chap to contact or message me for further information.

28th September: Life on Meldon Ward with Sandy Macleod, we have had a laugh …during the drugs he told the nurse his name was Charlie Brown, he asked for 20 cigars, 2 beers and a bottle of whiskey! There is a shortage of pillows and chloroform (his words) I think he means for the other old buggers on the ward. Poor Renata, Lyndsey and Vicky…working with him but they are having a laugh too.
The air ambulance arrived about 8am but the guards were on duty and it was a bit difficult to use it as a means of escape.

30th September: More Meldon Ward adventures, Sandy Macleod is in his escape clothes, we have been laughing about the Derriford Express…first stop Weston Mill. Dr Nick has been, he can rest easy as the “boys have been called off”. Lots of banter with the girls this morning. Waiting to see the discharge and palliative care nurses for the next part of the escape. We think they cause a diversion and we leg it. Home today one way or another.

Dad did get home on that Monday afternoon and was so relieved to be home.  My brother and wife were on their way down from Yorkshire and Marcus, my eldest son was on his way home to Plymouth from Seattle.  Miles was coming down from Cheltenham, along with my Godmother, Yvonne and Rob.  We were determined to make the most of the quality time and we did.

90. The second ball.

On Saturday 28th September 8 or the original 9 Dare to Bare ladies hosted a ball.  On Saturday morning I went up to Derriford to do the morning shift with dad and once breakfast and the morning routines were done I said “see you later” and headed home.  Once there it was all go to get the house ready and then I joined the girls at the Duke of Cornwall for the rehearsals.

The D2 ladies had dressed the room in an amazing manner. We did a talk through/walk through with the lighting company and then I came home to get changed and do the final prep for the ball.  In all honesty I was not in a great mindset for the Ball as worried about my folks, I wasn’t able to dance this year due to the earlier reconstruction so I was going to compere – I thought rounding up 180 guests couldn’t be worse than an assembly for 240 year 11s.

 

 

The ball was a success, I went into school marm mode, the consultant from the Primrose Foundation did a fantastic job of running the auction.  The just giving page is still open and we think we have raised in the region of £10,000.  The crowd went wild for the dancing.   I did a 30 second reprise with the feathers to allow one of the girls to get changed for the can can. The photo below shows some of our friends who supported the ball.

Dare 2 auction

Job done.

89: No more active treatment

I arrived on the ward at the usual time on the Friday, dad had been an inpatient since Tuesday.  He was independent, took himself off to the shower, got himself washed and in clean PJs each day.  His appetite was a bit better, his colour was better and he wasn’t in the least bit muddled.  He’d been sitting out of bed and when tired would lie back on the bed and snooze. He wanted to get home.  Each morning when I’d gone up Dad and I had really talked, I found out things about his childhood up in Inverness, things I’d never known.  We talk about poverty and deprivation today but I don’t know of many 8 year olds who had to go to the port and pick up herring which had been dropped when the fishermen landed their catch in Inverness.  I know fewer people still who lived in a nissen hut for months because their father abdicated responsibility for the family and there was no social services to pick up the slack.  Dad told me all sorts about how he’d loved being with his grandfather who was a station master in the Black Isle, memories of his sisters, his first girlfriend, joining the Sea Cadets going to sea and visiting Vigo and then the Royal Marines.  How he’d met my mum at a dance and told her he was a Ski Instructor, about how he gave his mother ten shillings out of his pay packet until he married.  Most mornings he would just hold my hand and talk between drifting off or until one of his mates arrived.

On Friday morning, one of dad’s great friends had arrived.  The doctors had asked if I would be able to tell dad about how there would be no more blood transfusions as they were ineffective and at the point of doing more damage than good.  I said I would but I would need their help.   I was dreading rounds as it would then that we would have the conversation.  The time came….

The Spanish consultant sat on the bed and held dad’s hand as I held the other and she told him, in a very compassionate way, that she couldn’t give him a new heart, liver or kidneys and that all of his were failing.  My father was so stoic saying “Doc I’ve had a good life”.  Mum had paved the way the afternoon before and dad is nobody’s fool.  She and the SHO left, I sat in her place and dad became teary saying he was worried about leaving mum. I reassured him that he was not to worry as Nick, Phoebe and I would look after her.  It was heart wrenching.  Dad said he just wanted to go home but the SHO had said he needed to stay in and have a top up of bloods and we needed time to get the palliative care team in place to help look after him when he was home.  That was so hard to hear.  No more active treatment, bloods to bouy dad up and buy him a little more quality time and then a decline.  Nick brought mum up to the ward and then we retreated to the coffee shop to give them time to say the things they needed to say.

The next task was to get organised for dad to come home and to ensure that the entire family were home too.  I saw the SHO and Consultant later, they praised us as a family and said we were all on the same page, that young man from Antrim had been back and spoken with dad – dad told him he’d “called the boys off” but he’d better behave.. that default humour had come back despite the bleakest of news. The HCAs and nurses were especially kind. We were all unremittingly sad – multiple co-morbidities a new phrase in our vocabulary.

 

88. Meldon Ward

Over the next 6 days I became a frequent flier at Derriford, this time for dad not me. I set the alarm for 6.30am each morning and made my way to car park A, easy access as it was early.  My aim was to be with dad in the morning to help him with breakfast and be there when rounds happened.

Just as with Lynher Ward, Meldon Ward had it’s own rhythm.  a) check patients are still alive, b) encourage them to eat breakfast – porridge or toast, c) encourage patients to wash or help them to shower, bring commode, bring macerated basin of soapy water, d) encourage patients to have a cup of tea/coffee/juice and e) encourage patients to present well for rounds.

Meldon Ward is a medical ward which appeared to be mainly full of very elderly and frail patients.  My dad looked really, really well compared to most of them.  The saline drip had had the desired effect and dad was rehydrated and less muddled.  He was absolutely knackered and said there had been no rest on MAU (Thrushall) or here.  This was a pattern which was to remain as either bleepers, equipment or bells went off day and night.

About 9am rounds happened and dad was assessed by a young SHO from Antrim Northern Ireland and a consultant from Spain.  The SHO was very gentle, he was waiting for blood tests to see if it was an infection which had caused the problems of the previous days and the consultant called for a CT scan.  In due course two porters arrived and we went off together with dad in the bed for him to go through the donut scanner. His head was to be scanned to see if there was anything untoward happening there.

Poor dad he was so keen to get home, as Tuesday merged into Wednesday and then Thursday he appeared to be more and more tired. His sense of humour returned though as he asked me to get humbugs and an elastic band to see if he could fire the sweeties into the permanently open mouth of the old boy in the opposite bay.  Every afternoon mum would arrive on her crutches, having been picked up by Nick and she would then sit with dad.  All his good work from being the Royal Marines and as the Almoner in the Royal Marine lodge was paid back in spades as he had many friends come and visit him.

On Thursday afternoon the county Antrim SHO wanted to talk to mum and I.  He knew about the do not resuscitate CPR form dad had signed and he took us into the Sister’s office.  Once there he talked through dad’s condition and recommended that we think about no further active treatment (blood transfusions) as they were no longer effective.  The doctors had already changed some of dad’s medications and he had stopped taking any blood thinners.  These had contributed to his anemia they were sure but the flip side .. they helped to control the heart failure. My mum was incredible in she sat with dad and held his hand and laid the path for the difficult conversation that was to come.

 

87: Life changes

I have thought long and hard about writing this post.  Writing a blog is a great way to help process my thoughts, feelings and emotions so here goes.  For sometime, my dad – Sandy Macleod Royal Marines, British Empire Medal and Meritorious Service Medal, has been unwell.  He has had frequent visits to Derriford Hospital to Birch Ward to have blood transfusions.

About two weeks ago Dad was very poorly, he was becoming quite disorientated and had a blood test which revealed his HB had dropped to a meagre 64 (his base line should be 90, for most people it is 130).  Nick and I took dad up to Birch Ward for his transfusion and spoke to the Registrar, she agreed he was out of sorts, promised to monitor him and phone me later.  She was as good as her word and later phoned to say that he was poorly and that he would be admitted.  I spoke to mum, who had had a total hip operation only ten days before and then went to her flat to get dad a few basic essentials for his hospital stay.

Dad was admitted to the medical assessment unit, Thrushall Ward.  It was like Picadilly Circus on speed.  As I walked into the hospital I came across two of the nurses from Birch Ward with an empty wheelchair, they had just deposited dad onto the ward.  They agreed he was very poorly, confused and said that he’d had a hard time having the two units of blood that day.  He wasn’t the same chap with a great sense of fun who turned up saying he’d arrived for the morris dancing appointment and would be going home on a bike or that mum was going to collect him on a tandem.  Suddenly my dad looked old and very unwell.  Dad was in a bay of 6 other men in various states.  In the bay opposite was a large, loud man and his partner who talked at length and great volume about ICT.  In another bay with the curtains drawn, an elderly man was dying, surrounded by his weeping family.  The young male staff nurse, Chris, was attentive, there were HCAs, it was so busy, brightly lit, loud… I felt disorientated and I wasn’t even unwell.   It was about 3pm.  I stayed on the ward until 9.30pm.  During this time dad was assessed by the staff nurse, the SHO, a tiny Chinese doctor and then the Consultant.  Bloods were taken and x-rays ordered.  The bloods were collected by a lovely young man who was kindness personified in a lilac top.  Dad’s veins were hard to find and he was either quite agitated or extremely weary, there was no middle ground.  During one of the episodes of being agitated he suddenly stood up and asked to buy half a gallon of petrol.  During another he looked at another patient and said “Sheena, go to bed”.  This was not my usual dad.  The consultant sat with dad on the bed and put his arm around him and said very gently “Sandy, we think you are a bit muddled and we want to work out why” – he explained that the bloods were going to be tested for an infection, that he would need a chest x-ray and that he’d be staying in.  In due course two porters arrived, just as dad had dozed off on the bed, it was agreed that he wouldn’t go in a wheelchair but would be taken in the bed to have a chest x-ray.  So off we went.

In the x-ray department I waited with dad and as the door opened the radiographer took the bed in and I saw the son of a friend who works there.  He was lovely and came out to talk to me whilst he colleague took the x rays of dad’s chest.  It was 8pm on a Tuesday evening and the whole emergency department and assessment ward appeared full to the brim.

At 9.30pm I left dad and promised I’d be back first thing to see him.  It was so sad to see him look diminished.  As I walked through the concourse of the hospital I saw a colleague whose mum was hanging onto life by the thinnest of threads.  She and I hugged and told the stories of how our parents were in different wards.  Unlike my colleague I was going home, she was returning to the ward to sleep on a cot and tend to her mum overnight.

I returned the next morning and arrived at 7.45 on Thrushall Ward.  Dad had been transferred to Meldon Ward at 5am.  I walked the 4 flights of stairs to floor 10 and followed the signs to the ward.  The doors of the ward opened to allow a narrow bed, covered in a blue, fitted tarpaulin to be wheeled out.  I asked the nurse if it was a body and she nodded.  I felt this to be an omen.

At the nurses desk I asked to see Sandy or Alexander Macleod.  The young staff nurse gave me a hard stare and said “is it Mrs Osmaston”.. to which I said yes.. “I’ll take you to your dad, you taught me at Tamarside”.  This nurse was a delight.  Dad was attached to a saline drip and was in his PJs. He was less muddled but asked me if I had brought the hacksaw… the answer was no I’d left it at home, why did we need it… dad replied he wanted to sort out the pipes.. he was thinking of his time as a plumber.  This was the start of day 1 on Meldon Ward.