Today is Monday 21st October, Trafalgar Day. The Royal Navy and Royal Marines have a tradition of celebrating this defeat of the old enemy. We joke with dad that he was at the battle, not least as he has a painting in his sitting room showing a ship of the line with Royal Marines in red coats. This painting was given to dad by mum in 1989. Currently his medical bed is under this painting and dad is lying on the bed, his face is swollen, his breathing laboured and he sounds as if he is choking. This is not the end of life we were promised when dad was discharged from Derriford Hospital on 30th September – three weeks ago today.
It has been a traumatic weekend and I’m going to describe some of this without being too graphic. On Saturday morning dad was able to ask for sips of tea but had declined and the decline was palpable. Although he was able to sip tea through a straw he was coughing immediately afterwards, this was the same with the oramorph too. When dad coughed he said he had pain in his ear. This was the first time in this whole episode that dad had complained of pain. When we looked there was a swelling under his ear. During the course of the afternoon dad became more and more agitated, he said he was in greater pain in his leg and back. One of the St Luke’s nurses came to visit and gave dad a top of the settling drug but there was an issue. The prescription for pain relief as a “stacked dose” (this is a dose on top of the syringe driver) had a ceiling in micrograms and it wasn’t enough to touch the pain. It was awful to see dad in such discomfort. He had been so stoic all the way through and this seemed particularly cruel and unkind.
To increase the dose a GP has to amend the drugs chart. As it was a Saturday the only GPs available were through the out of hours service. I have never experienced such a half arsed system which completely inconveniences the patient who is in pain and at end of life. I understand entirely that controlled drugs have to be controlled. The St Luke’s nurses were not allowed to administer a greater dose than that on the drugs chart as that was what had been prescribed. Eventually, after a lot of intervention by the community hospice nurses we were advised to go to Devon Doctors to have the drugs chart written up. My husband, sister in law and I went up. Once there we had to wait for one of the GPs to come out and sign off the drugs chart to increase the pain relief drug and give a range for the application. Once home we could call the district nurses who could then give additional drugs. As dad had been so unsettled all afternoon and evening my brother and sister in law decided to do the night shift.
They didn’t get much rest. We were all overwrought and in the middle of this melee is my mum with her new hip, worried about the family as well as dad. None of us is resting much as when we go to bed we expect a phone call to say come back.
Sunday morning arrived, no phone call so Nick and I went up to the flat with two cartons of cook up croissants and home made marmalade. My brother and his wife looked exhausted as they’d been awake all night. They’d called the district nurse out at 5am to administer another stacked dose of drugs to help settle dad. I wondered and voiced if we were doing the right thing keeping dad at home, despite that being his wish, mum simply said “where else could he be – this is what he wanted”. My brother, being practical said it would be too difficult to move him. The day settled into a routine of sorts. Andrew and Teresa went home to try and sleep, mum and I walked to the local shops, whilst Nick stayed with dad. I stayed with mum once Nick went home and we pottered and talked quietly until the others returned.
The syringe driver is updated between 11 and 12 each day. On Saturday and on Sunday the District Nurse Team Leader came to visit. She was very efficient, had taken us to one side the day before to say we were to monitor dad for changes in breathing. She estimated that end of life would occur within 24-36 hours but emphasised that it wasn’t a precise science. On Sunday morning she calculated the new doses for the syringe driver by adding in the stacked doses from the night before. She showed up how to clean up the secretions in Dad’s mouth and how to administer a gel to keep his mouth moist. Later when the St Luke’s nurse came it was noted that one drug was running very low. She phoned the out of hours GP for a repeat prescription. This had to be collected, with ID from the out of hours service back at Derriford. The drugs had then to be sourced, there was one pharmacy open until 6pm on Sunday. Andrew and Teresa rushed around to get the prescription, then the drugs – it all adds to the stress of a very stressful situation. More drugs were given to settle dad whose chest was sounding very “bubbly”. We were reassured that the breathing noises affected us more than him but we didn’t feel convinced. That evening we all gathered together to eat in the sitting room. It was almost a week since dad had had the syringe driver inserted to make him more comfortable and less agitated. It seems almost surreal, we all sit and eat whilst watching the tv or chatting and dad is lying in the hospital bed. The nurses have all said that this is comforting for him as he can hear our voices.
Last night we had cover to do the night watch. An Estonian HCA arrived, was given the hand over and we went home or to bed. She was very kind, especially to my mum who woke at 4am and went to see dad and later at 7am.
Today – I have not covered myself in glory. After phoning mum I drove up to the flat, she’d had some time with just her and dad and had been comforting him. When I arrived with the pots and dishes from the night before – part of the new routine, we cook something simple and take all the dishes home to put in the dishwasher, mum was in her dressing gown and surgical stockings. She has been admirable in wearing them as instructed. After a shower we settled down to chat and make sure dad was safe and secure. His face has become more swollen and red, it has tracked onto his neck and chest. Val, the carer arrived and together we carefully washed dad by moving the hospital bed and using a flannel to sooth him. We can’t move him, he is not able to talk anymore and the noises from his chest and throat were far more worrying. It is a noise like someone is, I imagine, drowning. Dad was also moving his legs and arms slightly, as if he was not comfortable. Babies lift their knees when in pain, he appeared to be trying to do the same.
Andrew and Teresa arrived and I was able to go off for a dental appointment – how strange to do something as routine as this in this period where nothing is normal. Following this I popped home for an hour and Nick and I walked to Devonport Park, had a coffee in the little cafe, in the Autumn sunshine. Again.. something routine, something normal in an abnormal time.
A little later I returned to the flat – the plan was to take mum out, we didn’t leave that afternoon. Once again a district nurse had visited, this one had not added the stacked dose to the syringe drive and dad was agitated. Later the St Luke’s nurse arrived and given the amount of secretion and the discomfort administered a new drug to help dry it up. She also gave a stacked dose of the drugs to ease pain and settle the patient. She noticed that the pain relief drugs were running low and had not been ordered by the district nurse. So groundhog day… telephone calls to order the controlled drugs, calls to pharmacies to see if they had them in stock… the one next to the GP only had 7 ampules and 30 had been prescribed. Another pharmacy had an additional 10 but would require another prescription. Andrew and Teresa went off to collect prescriptions, drugs, etc. More stress which was not required.
A new St Luke’s nurse arrived and administered a stacked dose of drugs, she instructed me on how to help her move dad to make him more comfortable and together we rearranged the height and angle of the bed and the cushions and pillows. She told us it was important to make dad feel safe and secure, to hold his hands firmly and talk gently, to have music or the tv on in the background, to give him comfort. My mum stood with dad and called him “pet lamb” so tender. The anti-secretion drug was running low and hadn’t been prescribed to be added to the syringe driver. Something else which would now have to be altered. She was great, practical, reassuring, measured and had seen it all. She phoned her colleague for advice having noted that the other stacked drugs hadn’t been added to the syringe driver, she saw dad was agitated and did all she could to calm him and called him “boy”. She had to go and promised to be back if he was distressed at all – but she did not have authority to change the syringe driver.
About 7.30pm two St Luke’s HCAs arrived – dad was settled and so I took them into the kitchen and told them was a complete disaster the care had been, how stressful it was to have to run around and source additional prescriptions, drugs, etc and how it was dreadful that the nurse had not been allowed to top up the syringe driver and that her boss should be told this in no uncertain terms.
The St Luke’s nurse returned… I had caused upset in the office as the HCAs are the eyes and ears and report back. The colleague the St Luke’s nurse had spoken to earlier was not her boss, she was asking about adding a different drug for secretions but it wasn’t advised. I’d misunderstood. She explained about the strict protocols which have to be followed to ensure patient safety with controlled drugs, she laid out the rules and regulations, helped by phoning the district nurses so that on Tuesday the syringe driver would be updated correctly. She explained how stretched they were and the demands made on their service. I listened whilst she explained that nurses are issued with a PIN registration number and if they lose this due to malpractice they can’t work. It went someway to help but it doesn’t help the fact that the system doesn’t appear to work in favour of the patient – but what do I know, I teach Geography. She told me I was over tired and needed to go home, I was too close to it all as it was my dad. I wanted to wait with mum until the overnight carer arrived but my brother agreed. To top it all she then looked at mum and noticed her ankles looked a bit puffy so gave her some advice about elevating them and protecting her heels. This lady was nursing the entire family not only the patient.
I came home earlier than expected. I went to bed and lay awake. It is now 1am on Tuesday 22nd October. No phone call has come, I can only assume and hope that Dad is comfortable. The night watch have the numbers and know what to do if he is not.
I read the book, written by the palliative care consultant. Most end of life episodes appeared to have a similar pattern – the patient eats and drinks less and sleeps more. Most of the deaths written about took place in a hospice where all the drugs are easily to hand. I thought it would prepare me for this stage but it hasn’t. The author didn’t write about having to change drugs charts, source drugs, check the syringe driver had had the stacked doses added, she didn’t write about the noise of the secretions or how the patients lifted their knees to show they were uncomfortable. Each “journey” is unique. She didn’t write about families spending hours together in a sitting room in a flat with the patient lying in a hospital bed. I don’t know how my mum has the strength to carry on, she is admirable, it must be a deep love to fulfil dad’s wishes to die at home. The St Luke’s nurse said I was like her so I’m going to take that as a compliment.
I’m going to try and sleep now as I don’t know what tomorrow will bring. I have written cards to the three main St Luke’s nurses to try and atone for some of the mistakes of today.
We are overwrought – wrung out as grief has been in play for four weeks since dad was told there would be no more active treatment. Overtired – none of us are sleeping well and are on high alert. Overwhelmed – by the system, by the processes, by dad’s strength as he has amazed the professionals by still being here, by the emotion of this. In this poem we should change I for we and God for family.
This Too Shall Pass
If I can endure for this minute
Whatever is happening to me,
No matter how heavy my heart is
Or how dark the moment may be-
If I can remain calm and quiet
With all the world crashing about me,
Secure in the knowledge God loves me
When everyone else seems to doubt me-
If I can but keep on believing
What I know in my heart to be true,
That darkness will fade with the morning
And that this will pass away, too-
Then nothing in life can defeat me
For as long as this knowledge remains
I can suffer whatever is happening
For I know God will break all of the chains
That are binding me tight in the darkness
And trying to fill me with fear-
For there is no night without dawning
And I know that my morning is near.