The Secret Deafie: How many deaf old people are left frightened and confused at the lack of communication while in hospital?

Donna Williams’ and Matt Dixon’s recent posts have inspired me to talk about my mother to mark the second anniversary of her death. In the last few years of her life her increasingly frequent visits to hospital coincided with age-related hearing loss , which made it increasingly difficult for her to communicate with medical staff, despite the otherwise exemplary care.

And as her hearing went down, mine went up with a cochlear implant.

She survived her first operation at the age of 86, mending a broken hip. She was already quite hard-of-hearing, as was my Dad, but they both coped quite well, and we all pootled along quite happily, especially as in the meantime her operation gave me more confidence for my own CI op, also my first.

Two years later a sudden stroke caused her hearing to take a nosedive, something that both Dad and I noted, but it was also difficult to disentangle this from the effects of something akin to an auditory processing disorder.

It’s fairly well known that stroke patients can have difficulties with productive speech: they can’t find the right words, or use the wrong words, in speaking. In Mum’s case, it was her receptive skills that suffered, making it much harder for her to take in what we were saying.

Dad and I tried to persuade her to have her hearing tested in an effort to understand just how much the stroke had affected her, how much was hearing loss and how much her processing of speech was ‘scrambled’ by the stroke – but, distressed and in denial, she wouldn’t even contemplate it, and even accused me of wanting her to be deaf like me. Those harsh words were definitely the stroke talking  – as Dad said, she would never have said anything like that otherwise.

The stroke also left her with swallowing difficulties, which in turn led to food inhalation, despite all the care she received, and consequent chronic lung disease. By July of that year, she was hospitalised with a lung infection, which we were told at that point was overwhelming her.

What was also overwhelming was much her denial of deteriorating hearing impacted on her subsequent hospital stays. She didn’t seem to see the need to tell the staff that she couldn’t hear very well each time she was admitted, and every single time I had to let the staff know so that they could communicate with her more effectively. Every single time she was admitted it had to be done all over again.

There was absolutely nothing wrong with her physical care at all – don’t get me wrong, they were fantastically kind to her but didn’t seem to see that half their geriatric patients were deaf! I often had to seek out staff for information about Mum’s condition to relay to her, because she couldn’t hear them properly. In common with many of her generation, she shrank from being ‘demanding’ and ‘drawing attention to herself’.

A product of the pre-NHS generation, you did what you were told without question and did not ‘bother the staff’. Yet, knowing what it was like to be deaf myself, I was determined that she and I would be as well-briefed as possible. I always knew when she didn’t have a clue and that vague and slightly bewildered smile would pass across her face.

She became hugely bored with lengthy hospital stays, finding it difficult to make conversation with other patients. Most hospital beds now have their own television screens, yet Mum couldn’t hear the programmes, and subtitles either weren’t available or she couldn’t see well enough to read them.

It was desperately lonely for her and the days must have dragged on and on and on, for there are only so many magazines and books you can read while you’re in hospital, but Dad and I did our best to make visiting times as cheerful as possible. And she was still in denial.

On her penultimate stay, she was seen by a very unsympathetic doctor who spoke English with a very heavy accent that was difficult for me to lipread and impossible for her to understand. He wanted to discharge her as a bed-blocker, because by then she was clearly dying, but I was adamant that she would remain until a care package was put in place to take the strain off Dad as her primary carer.

By this point poor Mum was too weak and ill to advocate for herself at all, and acquiesced in me relaying what the staff were saying and articulating her wishes on her behalf. It was a heartbreaking responsibility, that I HAD to get right and all I could think was that I’d got my CI just in time or I would have found the strain of communicating on behalf of my mum and my dad, himself rather hard-of-hearing, quite unbearable.

Reluctantly the dismissive doctor agreed that she could stay in hospital, and meeting the social worker the next day, I told her that I had to fight my Mum’s corner. She looked at me and said something unexpected: “If only all old people had someone like you to fight their corner.”

My already half-broken heart broke completely in two at that point. I thought: how many old people, who just don’t hear or see that well, are left frightened and confused at the lack of communication while in hospital, and are alone in the world? It doesn’t bear thinking about.

It’s hard enough to fight that when you are young and able to stand up for yourself, but what about when your last little bit of autonomy is stripped away because no one has realised your communication needs, and you’re a bit too frightened to talk about being deaf and articulating your own needs, and maybe other people put it down to confusion or dementia when the person inside is still bright as a spark?

With awful irony, a second stroke left her completely incapacitated, yet still hanging on to life somehow. The staff told me that she would still be able to hear, so we ought to chat away to her as normal. I wasn’t too sure how much she could hear so, God help me, I sat close and told her exactly what had happened.

Then, for the rest of the week, I cuddled her. I used the same little nonsense verse accompanied by a rhythm that she had used when I was a child, for I knew, whatever else, she’d recognise it: a-cuddly-uddly-uddly-uddly-udd, a-cuddly-uddly-uddly-oo, a-cuddly-uddly-uddly-uddly-udd, a-cuddly-uddly-uddly-oo-BOM-BOM.

So this is my clarion call – and I hope you hear me loud and clear – to both the NHS and to elderly patients.

Doctors and nurses: hearing loss is a natural part of ageing. Take time to communicate with your elderly patients. Learn to know when they’re just doing that nodding thing and they haven’t a clue. That look is so recognisable among deafies it’s just not that difficult to spot and you can home in on it too. That patient isn’t confused as in dementia, they’re confused because they didn’t understand what you just told them.

Care is meant to be a holistic thing. You have to treat the whole person. That means taking into account their needs and a recognition that for some of a generation that is now passing away there is also a cultural fear of being seen to be ‘demanding’. Put them at ease and you’ll have happier patients who mend better.

And if you’re getting on a bit and everyone keeps telling you the telly is on too loud – even your own daughter with a CI – and you think everyone mumbles these days, please, please, do something about it, while you’re fit and well. Later on, the adjustment might be harder.

Get it looked at, it doesn’t hurt, get hearing aids, learn about lipreading or BSL classes, because there’s no shame in admitting that you’ve got something most over-60s have, a decline in the acuity of your hearing. Do it, because if your health takes a turn for the worse later on, at least you have something to help you. It won’t be a cure, but having the right help will make it better.

The Secret Deafie is a regular column about deaf experiences submitted anonymously by different contributors. If you have a story you’d like to tell, just email thelimpingchicken@gmail.com