ellenor's lifeline

Becoming a full-time carer for someone you love is a deeply emotional and challenging journey. For Nicola Maffei, whose husband Lee suffers from Motor Neurone Disease (MND), the compassionate support from ellenor Hospice has been a lifeline. Offering respite care and emotional support, ellenor has helped Nicola and her son Peter navigate the complexities of caregiving, allowing them to focus on spending quality time together. As they prepare for the upcoming Christmas season, Nicola reflects on the vital role ellenor plays in their lives and the importance of supporting this invaluable charity.

Nicola Maffei doesn’t know what she would have done without the respite care provided by ellenor for her husband Lee Crowhurst, who suffers from Motor Neurone Disease (MND).

She and their 21-year-old son Peter have loved and cared for Lee consistently since his diagnosis in 2017. The disease affects the nerves in his brain and spinal cord leaving the 54-year-old unable to do anything for himself, except talk, breath and eat, and it’s becoming increasingly difficult to chew and swallow now.

Lee came to ellenor to give Nicola and their son Peter some much-needed respite. Nicola shared: “Lee had an incredible experience at ellenor. He was treated like an individual, not just a number. Before he was admitted to ellenor’s inpatient ward, a physio visited us at home and spoke directly to him, making sure his voice was heard. When he arrived at the hospice, all the physios and carers worked together to discuss his needs, making sure everyone was aligned on how best to support him.”

“He ate well, and every member of staff was so kind. He said it was a fantastic place – like an extension of being at home. Nothing was too much trouble. If Lee wanted something specific to eat, they would make it for him, and if he couldn’t eat it, they would make him something else. That’s how people should be treated -- with dignity. He didn’t want to come home!”

Nicola and Lee, who celebrated their 30^th wedding anniversary this year, are awake from five or six each morning so that Lee can be washed, dressed and do his exercises, as well as giving him his medications. During the nights that Lee doesn’t have a carer, which is provided by a local agency, Nicola, who has cataracts in both eyes, sleeps on a sofa next to Lee’s specially adapted hospital bed. She frequently gets up throughout each night to turn him and attend to his other care needs.

She said: “Every day is different, but you must try and stick to a routine. The night times are the worst. I stay alert all the time listening for any change in his breathing in case he needs to be moved, or if he calls out. Looking after someone is very tiring for families and unless you have been through it yourself it’s difficult to understand. There are some days when you want to scream.”

Lee and Nicola have a limited income, but they always make sure the important things are dealt with first.

Although the family have difficult days, Nicola says they know there are others in worse situations. It is typical of her optimism and bright spirit, but she has also seen despair along their journey with MND. During the Covid pandemic Nicola was let go from her job in the finance department at Darent Valley Hospital after 27 years, all of her focus could now be on caring for Lee full-time.

She reached a point where she knew she needed help and turned to her GP, who advised her that something had to give, and that family should always come first. With the support of ellenor, Nicola was able to continue her caregiving role while ensuring she took care of her own well-being. Without the support of Nicola’s family and their close friends, all of Lee’s medical professionals, carers and the CHC, the family would be lost. The help and care provided by the ellenor is the cherry on the cake.

Meanwhile, Lee also faces increasing challenges. Although he tries to remain positive, his down days are becoming more frequent, especially with the onset of frontotemporal dementia, which makes it difficult for him to sometimes follow conversations.

His working life was spent doing long hours in a timber yard, and he also played football, went fishing and enjoyed an active social life. Work injuries led to amputated fingers and a crushed foot, but never a crushed spirit.

Nicola said: He used to be so positive and say the illness was not going to beat him, but now he seems more subdued and doesn’t want to leave the house. He feels people are looking at him, and they talk down to him. He used to be a chirpy person, always joking around and asking others how they were doing, but not being able to do anything for himself and having to rely on other people is so hard for him. Sometimes, when he is having a good day there’s a little glimpse of the old Lee”.

Lee’s older brother had an aggressive form of MND and died seven years prior to Lee being diagnosed with MND. This had a significant impact on all of Lee’s family, as it felt like history repeating itself, when he was diagnosed with MND.

Nicola and Peter had counselling via telephone from ellenor during Covid lockdown restrictions.

Nicola said: “Peter was just 14 when his dad was diagnosed, and he pretty much gave up on all his social life. He missed out on so many of the experiences other teenagers have, like holidays and going out. He wouldn’t leave me to look after his dad on my own and said family came first, then lockdown came, which wasn’t good for anyone’s mental health.”

Although Peter, by then recognised as a young carer, didn’t sit his GCSE exams, like many teenagers due to the lockdown, he later blitzed Bluewater and other shopping centres with his CV. He also volunteered at ellenor’s charity shop, Special Treats, at Darent Valley Hospital, and now has a part-time job at the Ori Café in John Lewis, which he loves. Working three days a week enables him to help his mum with his dad’s care.

Lee came into the hospice ward at Northfleet in February for respite care and thankfully he was due to get his wish for a return visit granted later in 2024. This will give Nicola and Peter another opportunity to spend some quality time together, meet friends and maybe even get a trip away to York, a city they have always wanted to visit. In the meantime, ellenor staff keep in regular contact with Lee by phone.

Nicola said: “People and organisations need to help support and fund ellenor because it’s a great little charity and such a worthy cause. Wonderful people work at ellenor, and they deserve recognition for what they do. They take time to get to know patients and their families. They are caring, they are compassionate, and they understand that everyone’s situation is different.”

You can help families like Nicola's by donating to ellenor's Christmas Appeal. Your generosity ensures that more patients and their loved ones receive the compassionate care and comfort they need during some of life's most difficult moments. Every gift makes a difference, providing hope and comfort when it is needed most.