Robert Mitchell, known as Bob to his loved ones, was diagnosed with Motor Neurone Disease in March 2022 after experiencing a variety of symptoms.
Suffering with shoulder pain in early 2021, Bob started to lose the function in his left arm. Soon after, both arms started to lose feeling. Doctors assumed it was an issue with Bob’s shoulders, so booked him in for a double shoulder replacement for October 2021.
However, Bob’s case was puzzling for his doctors as they couldn’t figure out why he couldn’t move his arms if the problem was caused by his shoulders. After further investigation and more tests, Bob was told he couldn’t have his shoulder replacement operation and was referred to a neurologist.
Bob’s wife, Caterina, commented:
We saw the top neurologist in the area and we managed to get an appointment the next week. Usually the wait times are months, if not years in today’s climate. It started to click that this could be something more serious.
Bob was then given his MND diagnosis and a prognosis of two to four years. He was 68 years old when he was diagnosed.
Bob added:
It was such a shock; we didn’t take it in for a while. I asked if I would ever move my arms again and I was sadly told I wouldn’t.
Bob and Caterina had support from Shakespeare Hospice and the palliative care nurses within days of his diagnosis.
Caterina said:
I was surprised when the palliative care team and the hospice were mentioned. It’s a hard thing to swallow when there are so many misconceptions about them both. But we’ve been pleasantly surprised, the support has been amazing.
In January 2023, Bob started experiencing problems with his legs which quickly deteriorated. Bob could barely stand and hold his weight by June, but sadly got weaker and by July, he couldn’t walk at all.
The palliative care team recommended The Myton Hospices to Bob and the family as he was suffering with severe pain, which couldn’t be explained by doctors. He was admitted to Warwick Myton Hospices’ Inpatient Unit for pain management in October 2023.
Bob commented:
We were told pain management patients tend to stay for about two weeks to get their pain under control. But I was at Myton for five weeks. Myton was fantastic, I couldn’t ask for more! The nurses are brilliant and I’m really well looked after.
Caterina added:
I worried about Bob, of course, but not about his care for the first time since his diagnosis. I could relax knowing Myton were doing everything they could for him. I think it got to the point where Bob didn’t want to come home! The support here is like no other. We can’t emulate it at home.
After his stay at Myton, Bob arrived back home, but was still in severe pain.
Caterina explained further:
We have carers to the house four times a day and their support is incredible. But I have also become a carer as Bob can’t restrict his needs to the times when the carers are here. It’s hard work for both of us.
Bob returned to Warwick Myton Hospice for a week’s respite care in December 2023.
Caterina added:
We’ve been together for almost 45 years, so being away from him is hard. I have visited every day to be with him. But it gives us both a break from the hard work at home. I can rest easy knowing he’s definitely well cared for. And I can be his wife again.
During his stay, Myton’s Activities Coordinator, Calley, mentioned hand casting, a sculpture of hands that help to create memories. Thanks to our Forever Memories Fund generously donated by The Carl Lewis Foundation, we have been able to do hand casting of several patients and their families to preserve memories that will last forever.
Bob asked Caterina if this was something they would like to do and the couple jumped at the chance.
Bob explained:
I really wanted to do this opportunity as with my MND, I can’t hold Caterina’s hand anymore and didn’t think something like this was possible. With help from Calley, we managed to get the mould sorted and she has done an amazing job getting the sculpture ready for us. It’s a lasting memory of us and something Caterina can remember me by.
The couple gushed about their care, saying:
All the support we’ve received from all services has been amazing, it’s such a joined up system. I think back to being told the palliative care team and hospices would be providing care and I wish I knew then what I did now. We were so scared as to what it meant, thinking the hospice would be a dark and miserable place where people go to die. But what it means to us is something completely different. Myton allows Bob to be as comfortable and pain free as possible, which is the most important thing. They’re not just here for Bob, but me as well. My mental health and how I am coping is as important to Myton as Bob’s care which means everything.
Our Respite Care is available free of charge at Warwick Myton Hospice for people aged 18 and over living with a life limiting illness who wish to give their unpaid carers or families a break.
Providing an opportunity for a planned stay of one week, with a maximum of two weeks per year, you need to be registered with a GP in Coventry and Warwickshire and being cared for by family or friends at home.
Did you know that you, your carer, friends, family or healthcare professional can make a referral to our Respite Services online?
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