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Glynis

64, Manchester

Glynis's mother Dorothy had a stroke and became increasingly deaf, so Glynis cared for her at home until she died, aged 93. 

“My mother was fine well into her eighties and lived completely independently in her own flat in sheltered accommodation. Then in 2007 a stroke left her quite disabled, with a permanent tremor in one arm and poor eyesight. She was unable to do the things she enjoyed doing, such as tapestry work and reading.

At the assessment meeting, we were told that Mum was badly affected by her stroke, and would be bedridden and doubly incontinent for the rest of her life. She was assessed as needing double cover – that’s two carers on each visit, so they could lift her safely – four times a day.

Recovery

But actually my mother had made a remarkable recovery since they had filled in the forms and I was coping with her perfectly well on my own, despite being twice the age of the carers.

And although the carers were all absolutely brilliant, they came at totally the wrong time. We asked for the first visit to be at 8 o’clock in the morning, when Mum woke up. The earliest they could do – partly because of the double cover – was 10am, by which time I’d got her up, dressed and had breakfast. All that the two people coming for an hour at 10 o’clock could do was see if she wanted to go to the toilet! I don’t know what would have happened if my mother had been living on her own: she needed the help earlier than they could offer. With no one there, she’d have tried to get up herself and they’d have come in and found her on the floor.

Test period

There was a six-week period to see how it went, after which Mum would have to pick up the bill because she was self-funding. And in the event, we cancelled the carers, took Mum away on holiday, and found someone who was really lovely and came to give me breaks from being her full-time carer. A very helpful social worker spent an hour and a half on the phone with me, filling in a form. However, I wasn’t allowed to claim carer’s allowance because I was retired, and I ended up with a carer’s award of £200 to spend on myself.

Unhappy

We were very unhappy about the way the assessment meeting was run. We had prepared a written statement about Mum and we handed out copies. Not a single professional there read it. The person leading the meeting had never met my mother and hadn’t read a thing about her before the meeting. We felt this was very poor, and we made an official complaint and met somebody about it, who said it was common practice.

I think it’s so important to give the professionals an idea of what the person was like before they were ill. Because if all you can see is the patient as they are, and not what they were like before, how can you try to get them back to how things were?

"Some deaf people can’t hear consonant sounds - all they can hear is vowels, so if you use short, single-syllable words, it’s virtually impossible for a deaf person to understand."

Dealing with the deaf

Another issue was the fact that Mum became increasingly deaf. The professionals who dealt with her were not trained to work with deaf people. They assumed she was senile because she didn’t respond. But some deaf people can’t hear consonant sounds, so all they can hear is vowels, so if you use short, single-syllable words, it’s virtually impossible for a deaf person to understand.  

And there’s also the tone you use - some deaf people find low- or high-pitched voices hard to understand.  Plus, you have to give someone time to process what was said, so they might seem unresponsive, but they are just thinking. If you don’t understand that, you’ll think, ‘Oh if I shout they’ll hear.’ So in my mother’s case, we had to tell the meeting ‘she’s not stupid, she’s deaf.’  

Lucky

I’m lucky because I’ve got a lot of brothers and sisters who support each other. We gave Mum a more meaningful life. We got her out and about, and we even took her out to France to meet her great great grandson.

In the end my mother died peacefully at home, which was how she wanted to go. She stopped eating and faded very fast, and quite honestly I think she had just had enough. I have no regrets about giving up my time to care for her at the end.”

More information

Page last reviewed: December 2016
Next review due: February 2019