“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," recalls Bev. "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, 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!”
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.
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."
As the Parkinson’s progressed, 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, and Alan gave his consent for the family to contact the team. Soon community clinical nurse specialist visited 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 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!
“We could call SinglePoint anytime and they were brilliant every time. Of course, when I phoned, they were brilliant because obviously I was too upset to explain what had happened.”
The decision was made to use a syringe driver. 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.”
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:
“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.
“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."
Bev remembers a registered nurse from St Helena visited to verify the death:
“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 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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