“I met my husband Michael in 1995, back when he was my manager at work. We were on a training course together and we just instantly clicked. Now over 20 years later we’re still very happy together and have been married for 11 years.”
“Michael has got such a good sense of humour, he always has done. He is always so upbeat – I think that is what attracted me to him. He is always laughing and joking. It doesn’t matter where he is, he always manages to have a laugh. Michael was diagnosed with Motor Neurone Disease in 2014 and he still hasn’t let his condition change his amazing personality.”
“When Michael had to stop working in June 2015 he found it really hard. He had been working all his life, from a teenager right up until he was 62 years old. To just stop and do nothing was a big shock to him. He was really lost for a little while without work, until he came to St Clare.”
“Michael always had such good banter with the guys at work, and even though he misses his job, he is still having a laugh and the same banter at St Clare – and that it what keeps him going.”
“Michael really enjoys coming to the group sessions at St Clare – and misses the place and the people if he is ever unable to make it. I think it’s just having people to communicate with that understand. When you’re at home, although you have people coming in every now and again, they are only in and out, it’s not the same.”
“People from home, and his friends and family, aren’t suffering the same as Michael. Whereas with the Day Therapy group, you’re all in it together. You’ve got nothing to prove and you’re not frightened to say anything. It’s an open discussion and everyone feels the same. You’re not embarrassed to say anything or feel frightened. Everybody knows what everybody is going through.”
“When you’re diagnosed with a life-limiting illness you feel like it’s only you that’s got it – whereas when Michael comes to St Clare, he sees that everybody is going through the same thing. They may have different illnesses to Michael, but they can relate so much more. It’s about making friends, and not having someone feeling sorry for you.”
“Some people in Michael’s group decided to share their phone numbers and they are all there for each other if they need someone to talk to. If they get lonely, they are always there for each other.”
“Not only has St Clare helped Michael during the sessions, I also can’t fault the help that we have received at home to help make sure he is able to live at home comfortably. Jenny, the Occupational Therapist, has ordered special equipment for us to be installed in our home. If there is anything we need we know we can just ask Jenny and she always gets it sorted for us.”
“It was Jenny who recommended that Michael come to stay in the Inpatient Unit for an assessment and some respite care whilst they were busy sorting out his care package. When Michael was discharged from hospital without the right care package we received so much help and guidance from the team to make sure we were getting everything that Michael needed in place. They just said ‘Come and stay with us at St Clare while we sort it out for you. We will get you what you need and then you can go home and feel more secure’.”
“What St Clare has done for Michael is just unbelievable. They have made him feel so secure and safe. All of the St Clare nurses say how lovely he is and how friendly he is – I don’t think they want him to go home! He feels so happy to be here.”
“St Clare helps to make the whole family feel more at ease. I can go home knowing that Michael is happy and content. I don’t have to go home at night and worry because I know he is being so well looked after. Michael calls it ‘St Clare Hotel’ not ‘St Clare Hospice’ – that’s his little saying now. It is just such a lovely place – I think Michael would like to stay forever!”
“Before we came to St Clare we tried to struggle and struggle on our own, doing everything by ourselves. We didn’t know there were people out there who could help us. Since coming to St Clare we have been put in touch with all those places that can help us. St Clare couldn’t do enough for us. The whole team have worked together to help us live as normally as possible, whether that’s applying for grants and funding for a wheelchair, or just general advice and support throughout the whole process.”
“Seeing that Michael is happy and content when he is at St Clare is the main thing for me. We would be lost if we didn’t have St Clare, I wouldn’t know who to go to. It’s not only the care that they provide – it’s having them signpost us to different people for help. Even if they can’t help with a particular thing, they pass you onto other people who can help. We’re not stranded – they are always there to support us.”
“People are frightened of coming to a hospice because they think it’s the end of their life but it’s not. The word ‘hospice’ is frightening, but St Clare is here to help.”
“Michael is going to be discharged and come home soon – but we know if we have any problems at all we can speak to St Clare again. I am a little bit apprehensive about going home but St Clare has said that if there are any other problems or complications then Michael can come back – so it’s not like it’s goodbye forever. St Clare is still here if we need them – and that makes us feel secure.”
– Cheryl