Glynis's story

My mother was fine well into her 80s 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.

Arranging for care at home

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 8am, 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 10am 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.

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 for Carer's Allowance. However, I wasn’t allowed to claim it in the end because I was retired, and I ended up with a carer’s award of £200 to spend on myself.

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 Mum's deafness

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, only 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 say at the meeting, ‘She’s not stupid, she’s deaf.’  

Family support

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’d just had enough. I have no regrets about giving up my time to care for her at the end.”