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“I’m lucky that I had the most amazing man in my life” says Crawley woman whos husband received care at St Catherines Hospice

To tie in with Valentine’s Day, Valerie Phelps from Crawley, reflects on the care her husband Les received from St Catherine’s Hospice in Crawley, West Sussex.

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“My husband, Les, was an amazing man and the kindness he always gave out was rewarded with the kindness and care he received from the Community Team at St Catherine’s Hospice.

Les was a straightforward, military, no fuss man. He had the biggest heart and said few words. Some days, we would spend the whole time in each other’s company hardly saying a word to each other, unless he wanted a cup of tea which was often! My family always believed that I was the stronger of the two of us and the one who pulled all the strings. But how wrong they were! I’m actually the weaker of us. It was Les who managed our home in every way, with his quiet nature, kindness and love for me, his family and anyone else who needed his help.

When St Catherine’s Community Team first became involved with Les, it came across that I was the strong one. But as the nurses came to know him, they realised he was an amazingly strong man. And although a man of few words, the few he spoke, often spoke volumes. Together, I and the hospice nurses, who helped manage Les’s pain, had to do things slowly as he wasn’t only battling cancer and facing end of life, but was also battling PTSD from his time in the military. During that time I learnt things about my husband that he’d always shielded from me before. His drugs started to bring out the horrors of what he had gone through at different times in the forces, but fortunately for him he remembered very little of this.

When the consultant first mentioned referring Les to St Catherine’s, it was like he’d thrown a brick at Les’s head. To Les, a hospice just meant a bed, a room and him dying alone with strangers. He was inconsolable for several days until a St Catherine’s nurse came to see him at home.

I was absolutely amazed at the courage he managed to find in making the decisions he did after speaking with her for the first time. It was a great comfort to know that we could speak openly and honestly with the hospice team and to know that Les’s wish of dying at home was going to be met, if possible. Although we were aware that if there were complications he may have to go to the hospital or the hospice.

As the weeks progressed, Les decided that he would like to speak with the hospice chaplain after finding his baptism certificate. The first time, we did this together as Les was becoming weaker and I had to be his voice, but even then, Les made Lisa, the chaplain, and I laugh. Les had a few more sessions with Lisa alone and the peace she left in him helped us both. Her kindness and understanding to me in losing someone I’ve loved since I was teenager was also amazing.

When the time came, I could see Les’s eyes glazing over. I kept asking if he was in pain and he said no, just uncomfortable. I told Les I loved him and that I didn’t want to lose him, but that I wouldn’t beg him to stay. Our son, Neil put his arms around his Dad, and gently whispered to him that his two brothers (who’d already passed away) were waiting for him at the bar and that the older one had his hand in his pocket. He told his dad that it was okay for him to go as he shouldn’t miss the opportunity of a free drink!

We put Les’s cat, Luna, on the bed and ten minutes later, with two sweet silent breaths my wonderful man left me in the way he wanted. Peacefully in his own home with his family around him. It was something that was only possible thanks to St Catherine’s expert support and wonderful team.

Although Les’s loss has been hard to bear, I’m lucky that I had the most amazing man in my life. People reading this may think it’s painful for me to share this, and in a way it is, but in another way it’s also helping me to heal. It’s important that the perception of hospice care and what it means is changed. Yes, across the UK there will be people who have to be in their local hospice, because that’s their choice, or because they aren’t lucky enough to have the family or amazing network of support around them that we did, but the majority of people are looked after, and able to stay in the comfort of their own homes.

Without St Catherine’s, I don’t know how we, as a family, would have got through things. With hospice care you’re not alone. Without people like the St Catherine’s team in our lives the world would be a very sad place. And that’s something I’ve come to realise. Although we never want to lose our loved ones, death doesn’t have to be as painful as we believe it will be.

I’m so glad I’ve had the privilege of St Catherine’s kindness, help and care for both my wonderful husband and myself.”

To find out more about the work of St Catherine’s Hospice or to make a donation please visit: www.stch.org.uk

Charity

Parent of Rusper teen urge public to support local charity’s fundraising weekend

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THE parents of a teenager with a rare genetic condition affecting only around 30 people worldwide are urging the public to back a Mid Sussex charity’s big fundraising weekend. 

Mikey Turner, 17, from Rusper, has been living at Chailey Heritage Foundation for four years after his health had worsened at home and it wasn’t safe for his parents to look after him. 

Mikey, his parents and two sisters are now all taking part in their own challenge events on Sunday May 31. 

And they are asking the public to join in as well, raising much-needed funds for the charity, which is based between Lewes and Haywards Heath. 

Chailey Heritage’s annual fundraising Focus 10k event, due to be on Sunday May 31 at Borde Hill Gardens near Haywards Heath, had to be postponed because of the Covid-19 crisis. 

But now, instead the charity wants people to take part in their own sponsored 10k, 5k or mini mile on the same day, or any time until June 14. 

Any money raised will be match funded by Focus Group, based in Shoreham

Mikey’s dad Andrew said:

“Me, my wife, our two daughters and Mikey are all joining in, and we urge everyone to as well. 

“As a family of five, we will each be completing two tasks on the Sunday May 31. 

“One daughter who’s in Australia at the moment, will be planting melons for 5k. 

“Mikey’s two challenges are to be in his ‘stander’ for ten minutes and also to complete a 5k bike ride onsite at Chailey.”

It was at the age of around three that Mikey’s parents, Andrew and Jenny, thought something may be wrong. 

Mikey appeared clumsy at times and there were problems with his speech. 

Six years later, and aged nine, Mikey was finally diagnosed with a rare neurodegenerative illness called genetic malfunction of the UBTF gene.

His parents invested in a purpose-built house at Rusper, between Crawley and Horsham, to help look after Mikey but when his condition worsened four years ago, he moved into Chailey Heritage Foundation. 

Mum, Jenny, 56, said:

“Chailey Heritage has been an absolute lifeline for us.  

“We were really struggling back in 2016. Mikey’s needs had become more and more complex and he required a team of eight carers to provide care 24/7.

“When we first visited Chailey, we were both struck by the very positive ethos, and now it feels like home from home for Mikey. 

“We regard Chailey Heritage as an extension to our family. The staff are amazing and there is huge trust between us and all those who care for Mikey.” 

Dad Andrew, 59, said it was a huge step for Mikey to move out of the family home.

He said:

“We see the excellent care that Mikey receives and have huge admiration for the role of all the staff. 

“We were struggling with Mikey but the last thing on our minds was that he might have to move to be cared for. 

“It was a huge step for the family and the feeling when we got into the car and left Mikey at Chailey was a dreadful one. But we could not provide the quality of life that Mikey needed”. 

At Chailey Heritage, with the help of the specialist team, Mikey is able to take part in a wide range of activities including swimming and IT lessons. 

Mikey’s condition was undiagnosed for many years, which made it hard to plan for his needs.

Even now with a diagnosis, planning is hard as he is one of so very few with this condition and being one of the eldest, neither his family nor the team at Chailey know what to expect.

Mum Jenny said:

“He communicates with a subtle nod of his head but he has lost the ability to laugh, cry or smile. He was due to come home for a four-day Easter holiday but that was put off because of the coronavirus and staff said he felt very low that it wasn’t happening. 

“We haven’t seen him now for nine weeks and that is extremely difficult. He normally comes home three times a month and we make sure that is real family time.  

“We would all like to say a heartfelt thank you to everyone at Chailey Heritage Foundation.” 

One of the ways the Turners would like to show their appreciation for Chailey Heritage is to take part in the charity’s fundraising events.

Nina Gopal, Chailey’s Head of Fundraising, said: 

“We are naturally very disappointed that, like so many events, our annual Focus 10k has been impacted by Covid-19.

“But like many other charities, we are still in need of funds so we decided that the event could still take place but in a different way.  

“The government is now advising people that they can take unlimited exercise with social distancing, so why not take part?

“The challenge is to complete your own 10k, 5k or a mini mile for the younger ones and seek sponsorship.

“If you don’t want to run, you can still join in by devising your own challenge connected to the number 10.

“Ten bunny hops, 10 press ups or 10 laps of the garden – the important part is to stay safe and have fun raising much needed funds for young people like Mikey.”

To sponsor the Turner family, go  https://www.justgiving.com/fundraising/turnerfamilyfocus10 or do your own challenge and set up your own JustGiving page at www.justgiving.com/chs

To find out more about the 10 Stay, go to https://www.chf.org.uk/Focus10K-update.html

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