"When somebody is in pain and you can’t do anything about it, that’s heart-breaking"
Alan Brown was a warm and kind man who spent his life working with his skilled hands, first on his family-run smallholding growing strawberries and seed crops, and later building some of Tiptree’s bungalows, including his own family home. He had lived on the same piece of land in Tiptree for all but six of his 87 years.
He had always been interested in modern technologies and in the 1980s explored the use of building techniques uncommon in England at the time, such as underfloor heating and solar panels.
Alan also carried out maintenance for Wilkin and Sons, both at the factory and in the cottages the company provided for staff.
A diagnosis of Parkinson’s in 2012 confirmed his daughter Bev and son-in-law Nick’s suspicions. The couple, along with Bev’s sisters Angela and Georgina and their families, were ready to support Alan throughout, and towards the end of his life, respecting his wishes to be cared for at home.
They were lucky enough to have the resources to build an extension to Angela’s house to allow this to happen. Nick says: “This also meant Angela and her husband Neil could give Bev and me a weekly break from our caring roles. Though of course, Alan couldn’t get a break from the Parkinsons.”
Bev recalls: “Dad was quite content at home pottering about and I think some of that came from growing up on a small holding, working on the land where he would spend a lot of time on his own. I remember my mum saying how he was always really comfortable in his own company. He would go out and be in the field hoeing or picking the fruit.
“I remember asking him once when I was quite young, ‘if you’d have been able to do exactly as you’d have wanted, what would you rather have done? Stayed working on the land or been a builder’, and he said ‘working on the land’. And he never lost that; he always grew things. He always grew vegetables and hanging baskets and he absolutely loved it.
“A great sadness with the Parkinson’s disease, is when he couldn’t do that anymore. He still loved being involved in it though. When we moved back to Tiptree, we asked him if there was anything he wanted out of the garden and he was most concerned about the rhubarb above anything else. We’ve got it in a big tub in our garden now. I remember when we planted it with really good compost and manure, he told us we wouldn’t be able to have any of it that year; you’re supposed to leave it for a year when you’ve moved it. So I said ‘ok dad, there’ll be no crumble then this year’. Anyway it grew so well and he sat there one day and he looked out and said ‘you know what Bev, I reckon you could pull some of that it looks so well’, so I said ‘you’re only saying that because you want crumble’ and we did laugh!”
The rhubarb (pictured next to Bev and Nick with it in their garden) was a poignant reminder about the progression of the Parkinson’s, as Nick remembers: “The leaves were getting bigger and bigger and he could see them out the window, and it wasn’t really that long before he died that he said to me ‘Nick, we’ve got to do something about that gunnera out there’. He couldn’t remember the word rhubarb but he could remember the word gunnera a plant that resembles giant rhubarb] and that was enough to tell me which plant he was talking about. He was concerned the leaves were getting big and he was telling me how to strip it down. He always had such a pride in the way things turned out.”
Growing up, Alan’s school days had been hard, as not only did he have undiagnosed dyslexia but he was also forced to write unnaturally with his right hand. Like many children living rurally at the time, he missed a good deal of school when there was harvesting and work to be done on the land. On his last ever day of school, he symbolically threw his school books into a stream.
Alan had his ticket booked to move to Australia when he was 18 but when his father died suddenly he changed his plans as he did not want to leave his mum and younger sister alone to keep the small holding running. Family was important to him and he lived quietly alongside the contrasting chatty female influences, including his two aunts and a cousin next door, before having three daughters of his own.
Throughout his life and right up to his last few weeks, Bev remembers how her dad kept his sense of humour, with the family giggling together which helped distract from some of the situation they were in:
“He must have been incredibly frustrated sometimes to have gone from a man who was so independent. After my mum died, he did everything; he’d do his own washing, his own ironing, he’d do all his own cooking, he’d even sew. His mum was still alive, she was in her 80s and he used to do all her shopping. When my mum was really ill with cancer, my grandmother only lived across the garden, and because he was looking after mum at home and she was eating very little by then, my grandmother said ‘well why don’t you come and eat your lunch with me?’ So that’s what he used to do, he used to go and have his lunch, and after my mum died they carried on. As my gran became less able and more frail, my dad took more of that on too.
“I think that’s what we tried to do with him really because it was never that he did it for her, but they did it together. That’s how we tried to be with him as much as we could.”
He must have been incredibly frustrated sometimes to have gone from a man who was so independent
As the Parkinson’s progressed, the three of them became a tight unit but Alan was as determined as ever. Bev recalls one evening when her dad had problems with swallowing, causing him to almost choke on his food:
“That particular night it was jelly he was having trouble with and I asked him if he just wanted the ice cream or if he wanted to persevere with the jelly, and he was determined to persevere.
“That’s what he was like so often with so many things until the last few months when he’d had enough, he really had, and that is when St Helena Hospice got involved.
“He would just pass out and it would take ages for him to come round and it was getting progressively worse. He was in a lot of pain in the mornings and sometimes distressed. At one point I said to him, you’re not worried you’re going to die are you? And he said ‘no, more’s the pity’. That’s when I knew he really had had enough. I totally understood it and I remember saying to him “if I were you I would feel exactly the same.”
Bev’s sister Georgina is a nurse in a neighbouring county and she found out about SinglePoint, St Helena’s 24/7 advice and support line for people in Colchester and Tendring living with an incurable and progressive illness. Alan gave his consent for the family to contact the team and soon community clinical nurse specialist (CNS) Josh visited mid-November to support them and try to help with pain relief.
It was essential for the family that Alan made his own choices about his care and he had been clear with his wishes about putting a DNAR in place, after paramedics had been called for a suspected heart attack. They had also previously put in place enduring power of attorney and then later medical lasting power of attorney. Josh introduced Alan, Bev and Nick to the My Care Choice Register, to record Alan’s wishes about further aspects of his care.
Bev recalls: “Dad made his choices perfectly clear, because there’s a bit in there about whether you would want to be artificially fed and [laughs] when I read that bit, he was so clear, Nick heard him upstairs! Dad couldn’t have made his choices any clearer than he did!”
One weekend mid-December, Alan’s passing out episodes increased in intensity but Bev and Nick were relieved to now be in touch with SinglePoint, as Bev explains:
“We could call them anytime and they were brilliant every time. I said to Nick I’m going to phone SinglePoint because he can’t go on like this, he is in so much discomfort all the time. Of course when I phoned, they were brilliant because obviously I was too upset to explain what had happened. And she said we’ll get on to Josh and the GP practice.”
The decision was made to take Alan off the medication and instead to use a syringe driver, which after a frustrating couple of false starts for the family, their CNS Josh arranged with SinglePoint. Bev remembers:
“If he was a bit agitated or in pain they could increase the dose. A few days before the syringe driver went in, I explained everything to dad and I asked him if he would like anything to eat and he said he would like some ice cream. He only had a few mouthfuls but he really enjoyed it. And that was the last thing he ate.”
People don’t realise hospice services are available at home
Having their community CNS and SinglePoint on the end of the phone was a relief for the family to know they could ask for advice and support when they needed to, especially over the Christmas period. But they would like to have known about St Helena’s services earlier, as Bev explains:
“The main thing was that SinglePoint was great but without my sister’s knowledge we wouldn’t have known that service was there and I think that an awful lot of people still think the hospice is there for people with cancer not people with other illnesses like Parkinson’s.
“When somebody is in pain and you can’t do anything about it, that’s heart-breaking. Most of us don’t want to see anybody in pain and if you can’t do anything, especially when it’s somebody you love and they have enough to be putting up with, instead of being in constant pain. I do just wish somebody had told us about SinglePoint a bit earlier on.
“People don’t realise hospice services are available at home and that people can be as clear in their choices as my dad was able to make. Dad had already made some of those choices before Josh was involved but the fact that he could make it as clear as he did to Josh is very important. I think people need to be aware that those services are there. It certainly helped us an awful lot. And from dad’s point of view, the fact that he did have the syringe driver in, meant that he wasn’t in a lot of pain and hopefully, certainly by the end, no pain.
“It is what is says; ‘single point’. We said at the time, we had each other all the time we were caring for dad but if that had been one of us caring for the other one or an elderly couple caring for one another; to have one number that you phone and they will do everything rather than you having to phone three or four different people.
“And not have to think ‘what do I do now’ especially at the point when the person dies.
“On the morning dad died, Nick rang them and they said ‘we can get one of our staff out to verify the death, do you want us to contact an undertaker?’ It was hard enough with it being dad, but if it was your spouse and you’d been married for 50 years… When you are a carer you’re often so exhausted anyway that all those sort of things you can’t get your head around, and you haven’t got the time either.
“Physically we were still relatively young and healthy but when people are older and they’re moving someone they care for around… it’s physically and mentally exhausting and especially if you’re not getting sleep. So to have just that one number and to have those lovely people on the end of the phone.”
Nick wholeheartedly agrees: “The ability to receive the service in your own home without disruption is just so important. He wasn’t going to be on his own, that’s what he wanted and that’s what we were able to give him. We never regarded it as a difficulty that he said ‘I’m not going anywhere’; that was what we set out to do.
“There are so many unknowns with Parkinson’s and once we had a service where we could lay out all our concerns and for them to say ‘let’s see if we can work it out between us’, that made us feel reassured as well. All the way through you’re thinking, am I doing this person more harm than good? Should we be trying something else? And to have somebody to bounce that off and to talk to is just so important, and we could do that with Josh. The people there have the right motivation and they have a model of care that makes sense to me completely.
“It is a very lonely place to be. We always thought if this is how we feel, how must Al feel? You do end up feeling completely deskilled, completely frightened.”
Bev remembers the morning Alan died when the registered nurse from St Helena visited:
“She said there were a few things she needed to go through and one of the things was to listen with a stethoscope, and before she put it on she said ‘I’m sorry Alan, it’s a bit cold’. It was so lovely, so caring.
“She also said about an undertaker and gave us an information pack. When you are in that situation, and especially if you are on your own, then to have something like that when you have gathered yourself a bit to look at again later, because you can’t necessarily take it all in.”
The family and friends generously donated to St Helena the cost of a syringe driver and some money towards a second in tribute to Alan. They knew drivers had been in short supply and were very aware of the difference it had made for Alan in controlling the pain in his last days.
Now the couple can reflect on the man whose influence lives on.
Nick: “My dad died in 1980 and when Bev and I got married, I quickly became Al’s 'son'. We used to work together on all manner of things. Apart from a deep love, there was a mutual respect. Al didn’t call you ‘mate’ lightly, it was like a medal, and once you earned your ‘mate’… well, I was his mate and he was mine.”
Bev: “The whole family miss this marvellous man every day. It’s good to remember. He always had such a smile, my dad. We’re getting there. I don’t wish him back because he is where he wanted to be and he’s not in pain anymore, but I do miss him. I still love him to bits.”
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