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"I'm so proud of him and the team"

Julie Gennery

Finding yourself needing 24-hour care is a massive change in anyone’s life. Needing 24-hour care when you’re profoundly Deaf and a British Sign Language user (BSL) is quite another matter and adds further complexities.

My husband, Matthew, has advanced MS. For the last 15 years he’s needed full-time care. Finding carers isn’t easy. Essential qualities include commitment, reliability, flexibility, a caring and kind disposition, and a willingness to adapt to ever changing situations…the list goes on. Add that they must be BSL users into the mix and there’s another layer of skill required. The availability of people with all of these skills and qualities is extremely rare.

Finding the right care for Matthew

Matthew now has a team of carers who are BSL users. He’s in a unique position, having such a great team.

The journey leading up to this wasn’t always easy. Having had carers who weren’t BSL users led to misunderstandings, frustrations and a general breakdown of communication. The last thing you want, on top of being disabled, is to have a huge struggle trying to communicate your basic needs. 

His team consists of six people and they can all communicate with him. They can deliver his care in a safe, efficient and informative way.

The team is made up of four Deaf native BSL users and a hearing carer who’s been learning BSL. I’m also Matthew’s primary carer and I'm a BSL interpreter. 

I'm so proud to have secured this team. They not only provide around the clock care for Matthew but can communicate with him.

Living as a Deaf BSL user in need of care

Things hearing people can take for granted include:

  • Asking for something
  • Having a chit-chat
  • Saying a simple ‘good morning’
  • Talking about what’s been on TV
  • What you plan on doing that day
  • Having a giggle.

And there are more important things like saying you’re in pain or discomfort. Communication on all levels is vital for everyone. It’s not just part of who we are, it’s a necessary ingredient to being able to survive and thrive.

It's a rare situation to be both a Deaf BSL user and also needing 24-hour care. It's an even rarer situation to have a team of carers who can provide the correct level of care and can meet these needs. Our gratitude goes to the amazing team we have.

Living a fulfilled life

Matthew’s life is as fulfilling as it is because of the care he gets. Living with advanced MS is extremely difficult. Every single thing has to be done for Matthew. Other than a little movement left in his right arm and some movement in his head and neck, he’s totally paralysed, requiring complex care.

However, Matthew has a good quality of life. He goes out, goes on holidays, enjoys family life and remains positive and happy. The team of carers that he has means he can interact at all times and communication is never a problem.

Our house is always full of people with little privacy, so it’s never easy. But I'm extremely grateful to the team for the care they provide. I'm, of course, very proud of Matthew, who never lets his disability stop him enjoying life. He’s always positive and has a great outlook on life. I’m so proud of him and the team.