“It’s not about end of life, it’s about quality of life and that changed everything for me.”
Lesley Stopford has spent her working life as an Occupational Therapist, supporting people with disabilities and helping them to find solutions to function as effectively as possible and to manage their regular activities of daily living.
So after taking a break from work a few years ago to support her mum, who has Alzheimer’s, she thought she might have a bit more time to spend in her beloved nature and pick up some part-time private work.
Her mum had also had a very serious fall resulting in her needing to go into a care home, and so Lesley had to organise clearing and selling her mother’s house. This was further complicated due to COVID-19 outbreak, with all the travel and visiting restrictions.
But then she began struggling to turn the key in her front door.
“I thought it was a stiff lock,” she says. “But not long after I noticed my hands were losing muscle.”
She was also having falls and in February 2023, after a number of different tests, she was diagnosed with Motor Neurone Disease. A premonition she’d had a couple of years earlier came back to her.
“I’d had a horrible feeling that I was going to be in a wheelchair and die young,” she says.
“It’s a cruel disease,” she says. “I’m very dependent and that feels different. I used to be an independent person and always had to look after my mum.
“Now I’m the one who’s having to be dependent and need people to help me.”
“I thought what is going on? Why? Why is this happening?”
Lesley describes the current situation as very strange. She already had Power of Attorney for her mum but, after her diagnosis, had to organise Lasting Power of Attorney for herself too and then ensure there was a back-up for her mum.
“I was absolutely terrified about how will I cope when my mum dies because she would be the last one in the family, but now there’s a possibility I might die before her and it wouldn’t be so traumatic for her because she wouldn’t retain it due to her Alzheimers.”
In June 2023, Lesley was also diagnosed with breast cancer but elected not to have surgery because it would further impact her mobility and function.
”I’m just so glad I took the risk and came in for the counselling.”
“I thought what is going on? Why? Why is this happening?,” she says.
With so much to deal with at once, Lesley was advised to get some counselling by the Motor Neurone Disease Team at Kings College Hospital but was startled when this led to a referral to St Christopher’s
“I was thinking ‘I don’t really want to go there’,” she says. “Then I came and just couldn’t believe it. I was so moved. It’s not about end of life, it’s about quality of life and that changed everything for me.”
As well as the counselling sessions, Lesley regularly attends St Christopher’s Create and Chat group, run by the hospice’s Community Action team. She has also benefitted from a support group for those living with a neurological condition and services from the psychosocial team, the wellbeing team and social work.
“I’ve had my nails done, my hair cut, a facial, some massages, art therapy sessions. I’m just so glad I took the risk and came in for the counselling,” she says, adding: “Going around the gardens is a real treat as well, they’re so beautiful and it’s wonderful to be able to get outside in such a lovely environment.”
The Create and Chat group were recently photographed wearing self-made papier-mâché masks by students from the Brit School as part of a collaborative project. The regular Tuesday sessions mean Lesley comes in every week and often stays for lunch.
“My hands don’t really work well and there’s no strength so it’s physically hard for me to make things but with a bit of help I can still do it. It’s very enjoyable and feels such an achievement.”
“It’s very enjoyable and feels like such an achievement.”
“I don’t know what I’d do without St Christopher’s,” she says. In fact, her view has changed so much that she adds, “I would want to be at the hospice at the end of my life, if I’m not safe wherever I’m living.”
The positive experience at the hospice has helped her as she has to deal with some of the harder realities of her diagnosis, such as initially using a crutch, then a walker, to now being reliant on an electric wheelchair.
However, after seeing a friend of four decades recently she was left feeling how bizarre the past few years have been.
“It was bittersweet because it was lovely to see her but it really brought it home to me, how everything is so hard for me. I’m just doing the best I can, but when I’m with somebody who I used to be the same as, it’s very hard.”
“It’s a strange feeling and coming to terms with the change in me is quite odd.”
This role reversal from her career as an OT has opened her eyes afresh to the issues people face. She’s also spotted a gap in the market for those with MND when it comes to trousers.
“I bought some pull-on trousers thinking they may be easier to put on and off, but due to the muscle weakness pulling on and removing them is very difficult. I would be better with trousers that are baggier and if they maybe had a drawstring or something that would open really wide and then you could just pull on and fasten gently, but so far I can’t find anything online.”
“I don’t know what I’d do without St Christopher’s.”
This loss of mobility and a small kitchen at home has highlighted an urgent need for her to find an assisted living property.
“I knocked a lamp over the other day and I thought, ‘Oh my God, what if the bulbs had started fire?’ I wouldn’t be able to deal with it.”
She also had a nasty fall in 2023 and had to go to A&E with a deep cut in her head.
“I’m weak and it’s horrible, it puts strain on my other muscles.” she says, adding: “I’ve had to take the plunge and get people to come and do personal care for me and I’m worried about needing to be helped toileting.”
These concerns, over housing, her safety, personal care and estate planning, are frustrating for Lesley who wants to spend the time she’s got left living, rather than just preparing for the end of life.
“My passing is inevitable and I feel I’m going to go sooner than I thought. Up until recently I’ve been saying ‘I want to jump ship’ but, I don’t want the last few years of my life to be spent doing all the jobs that need doing.
“I’d like to enjoy it and be out in the garden and have some nice time with friends, or go for a meal, see a show, go to a gallery, all the things I love doing.”
Every Tuesday, she gets to do that at St Christopher’s, to take a turn around the garden and eat fish and chips for less than a fiver – and she’s determined to keep on doing that, and much more, for as long as she can.
“I am so lucky to have wonderful friends and the amazing support from brilliant staff and volunteers at St Christopher’s,” she adds.
You may also be interested in
Why hospices and care homes need to work together
“It’s just as important that hospices learn from care homes, in particular their expertise in person-centred dementia care which in most case will be better than in hospices, as that’s not hospices’ bread and butter.”
