Alison shares her story this Carer’s Week

“As hard as it is looking after him with this awful condition, I’d still rather have that time with John in our own home and not sitting at the side of a bed in a hospital. It’s so important that we have as much family time as possible when time is so precious.” 

Alison Barry made the decision to bring her partner, John Sharkey, home from hospital so she could care for him. Despite a care package initially not being in place, Alison, 57, brought John, 50, back to their home in Cumbernauld in North Lanarkshire so that they could spend the precious time they have left together in familiar surroundings. 

This Carer’s Week, Alison’s story highlights the significant impact that a diagnosis of motor neuron disease (MND) has, not just on the person with the disease, but on the people around them. Alison’s story is unfortunately too common with research released by Carers Scotland this week revealing a YouGov Omnibus poll found 58% of people who are currently providing, or have previously provided unpaid care in Scotland, said that they had to take on the carer role because no other care options were available. 

John was diagnosed with MND aged 44 following the onset of symptoms including a number of falls, extreme tiredness and twitching in his arms. He started undergoing tests in May 2018 and was diagnosed in October that year. John’s condition has deteriorated in the last six years, and he now relies on other people to move him but is still able to swallow and speak.  

As the family came to terms with the impact of John’s diagnosis, Alison took redundancy from her job in insurance in 2019. She took the opportunity to leave full-time employment so they could make the most of their time together. 

MND is a rapidly progressing terminal neurological illness, which stops signals from the brain reaching the muscles, causing muscle weakness and wasting. There are around 450 people in Scotland currently living with MND. 

Due to the rapid progression of the disease, people living with MND have very high support requirements that can change quickly and frequently.  

Following his 2018 diagnosis, John had a ventilator fitted in 2021 when he experienced respiratory issues. When he took unwell in hospital, it was decided that he should have care in place at home. However, it took until early 2023 to have a care package in place.  

In the meantime, Alison, supported by her son, Craig, 25, were John’s full-time carers. Alison and Craig had to carry John around their home without the proper equipment, such as hoists, that should have been in place. Alison said: “There was a lot of back breaking work required to carry John in and out of baths but for us it’s more important to have John in a home environment than have him in a clinical environment. I just don’t want to look back and think I could have done something more for him.”  

For Alison, she believes she couldn’t have done what she has done to care for John without the support of Craig, who is studying full-time for a Masters degree in psychology. She said: “Even if Craig is on a night out, he will always come back to check John’s breathing and clear his ventilator. He is so committed to John. The connection that him and John have is beautiful. He has gone above and beyond.” 

The couple, who have been together for 10 years, had adaptations made to their home to accommodate John’s condition, including a garage conversion to create a downstairs bedroom and bathroom. John’s illness now means the family has carers with them for 23 hours every day. One carer stays overnight but Alison and Craig still take it in turns to get up through the night to help, as and when required, as John needs two people to move him.

However, it’s not just physical care that is required for someone living with a disease such as MND.  

In addition to her role as his carer, Alison has also taken on the position as advocate for John. As she explains: “There is a general lack of understanding and with that your time is taken away from him to be his voice. Dignity is everything, and that’s what you’re fighting for – that preservation of his dignity – by making sure he has the right medication and support round him at all points. But it’s not easy. He’s battling an illness and we’re also in battle for him dealing with other aspects of his condition. I want to invest my time with John, I really don’t want to be constantly trying to get the simplest things carried out.”   

Alison is also providing emotional support as John battles the brutal condition. She said: “It would be very easy for anyone with a condition that’s terminal to lose the fight and lose their value. That’s something that myself and Craig, and the care team, instill in John every day. He is still vital and important in all our lives and we’re proud that he’s still with us. It’s such an inspiration how he deals with that day in day out and he still smiles, and he still has a laugh and a joke and that must be very hard to do at points.” 

Despite the daily challenges, Alison is determined that the family make the most of the time they have together.  

Alison says: “It’s an incredibly tough time from diagnosis and I think the hardest thing is getting the right support. I genuinely feel when you get the right support there in place it becomes a whole lot easier.  

“It’s a minefield. Your life changes the minute you get that diagnosis. You don’t know how long you’ve got. We’ve just lived each day as it comes and enjoyed them as much as we can. We know what we’re dealing with and we try to live as normally as we can. John’s been dealt such a bad card, but you’ve still got to find the good in every day – the fact he is a part of every day.”  

Carers Week is taking place from 10 June – 16 June 2024. It is a UK-wide awareness campaign seeking to increase visibility for carers with decision makers, services, employers, communities, and businesses. For more information, please visit the website.