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When Dad got his Multiple Systems Atrophy diagnosis back in 2011
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our world was turned upside down.
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We knew we’d lose him and there was nothing anyone could do.
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The brains cells that regulated his neural system were dying. It’s a rare condition and a horribly cruel one.
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After some research, we knew to some extent what to expect.
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Walking became difficult so he needed a stick and then a frame.
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In the end he couldn’t move at all without a mechanical hoist.
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He was trapped in his own body unable to do anything for himself.
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Quite early on communication became a problem because he couldn’t talk.
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It took all his energy to speak. Although we were prepared seeing him struggle to speak was hard.
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We never expected language problems. You tend to think in the same language as your mother tongue.
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Speaking a second language involved thinking in one language and translating that into the second language.
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The process is tough for the healthy never mind someone who is ill.
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When English-speaking health professionals came to see Dad, I could see that he had to use twice as much energy.
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He’d often end up in tears of frustration. That added level of distress for him also had a huge effect on us as a family.
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In a period that was already terribly difficult.
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We know it’s not possible for every health professional to speak Welsh.
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However, the reaction of some of those professionals to Dad’s distress was unacceptable.
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They seemed to ignore or dismiss the importance of this difficulty.
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That made us very sad indeed. We just wanted his final days to be as untroubled as possible.
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It was heart-breaking to see him failing to communicate and
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then not even having the opportunity to communicate in his mother tongue.
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When his communication stopped we had to find a machine that spoke for him.
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We thought we could insert questions and answers Dad would have used.
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He’d be able to press a button and the machine would speak for him.
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It was another heart-breaking process. At least it allowed us to communicate.
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Very quickly in this process we discovered nothing existed that worked in the medium of Welsh.
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That was a huge blow. We’d never spoken anything but Welsh at home.
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Switching languages would have been weird,
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and his grandchildren could only speak English. That was very sad though.
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This horrible illness was stealing everything from him.
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And taking him from us. And stealing our language.
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What really hurt was that the officials charged with providing the communication device didn’t care or understand the problem.
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Or the effect it was having on Dad and the rest of us.
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Mum had worked so hard up to this point to care for Dad.
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She was determined to find a device that worked in the Welsh language
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It turned into a months long battle in a time that was already so hard.
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We finally managed to source some software in Welsh.
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We were both happy to get it and frustrated that we’d had to fight so hard to get something that should’ve been
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readily available in our mother tongue, especially for people on their death bed.
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I don’t expect every health worker to rush out and learn Welsh.
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But I do expect them to be at least sympathetic to the linguistic needs of the patient and his family and friends.
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I can’t explain the difference it made when Dad heard the Welsh.
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We were so lucky that the GP who came out to see Dad
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and explain all the processes of his condition had learnt the language.
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Although he wasn’t fluent, he could sustain a chat and Dad soon relaxed.
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Then he’d explain the technical processes in English. I can’t tell you how invaluable that was to Dad and to us.
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Please, if you ever come across this scenario, be sensitive.
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Even if you only know the odd word it makes a difference to the patient.
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Dad died in 2019 after years of battling. We treasure the fact that he died as the Welshman he had always been.
