“This was never supposed to happen.” Lesley Whitington is sat beside her husband, Pete, in the café at St Christopher’s Hospice, Orpington. She rests one hand on Pete’s arm, while the other wipes away a tear. “You never think something like this will happen to you. It wasn’t supposed to be this way.”
You don’t need to talk to Pete and Lesley from Hayes (pictured) for very long to discover how hard it has been for them since Pete was diagnosed with Motor Neurone Disease (MND) a week before his 60th birthday in 2017.
Yet, despite the struggle of adjusting their life around MND, they never stop speaking positively of the support and friendship they’ve found at St Christopher’s.
Pete finds long conversations tiring, so Lesley explains what it was like when they first came to St Christopher’s. “We started coming here so that Pete could use the gym, but I have to admit that I didn’t really like entering the building. Usually, I’d drop him off for his session with the physio and then disappear off to do some shopping, or visit my mum. Everyone was so nice, but if I’m honest that made me more uncomfortable. I couldn’t understand how people could be so happy when it felt like our world was falling apart.”
Pete, 62, had worked for 25 years as a site manager in structured cabling. He says, “I kept going on to building sites, even after the diagnosis. For a long time my team supported me and made sure that I could keep doing the job I loved. It had got to the point where Lesley would drop me at the station and I would make my way into work with two walking sticks, but by May 2018, after a holiday with the family when I’d needed a wheelchair to get about, I realised that it was time to stop. It wasn’t fair on my colleagues, or Lesley, to keep pushing my luck.”
Now, when we come to the hospice, it’s a chance to meet with friends who really understand us and what we’re going through.
Lesley continues, “The more we came to St Christopher’s, the more we got to know people. We met Frances and Barry who work in the gym, the ladies from the knitting group, Fiona in fundraising and then we started to stay longer, have a cup of coffee or a bite to eat. Slowly but surely my feelings changed.
Now, when we come to the hospice, it’s a chance to meet with friends who really understand us and what we’re going through. No one is ever too busy to talk to you and it really feels like a proper community; we know who’ll be here when we arrive and we know that we can rely on them. Here, I can sit in a chair and have a couple of cups of coffee and I don’t have to move for a couple of hours. It’s a relief to take a break from being up and down and up and down at home – doing cleaning and washing and this and that. Being here stops us feeling lonely and isolated.”
Planning for the future is hardest when your future seems very different from the one you had in mind; for Pete and Lesley this has been one of the most difficult things to come to terms with. Lesley explains, “We’ve done things like sorting out power of attorney and the Will, but understanding how our future will be different is still something we’re working through. I’m not sure that it will ever feel ‘normal’, but I know that what we are facing will be easier with the love and support of our friends at St Christopher’s.”