Diane's story

Of course there are sources of help, but you have to do all the legwork in finding and accessing them, which is not easy if your time is limited due to caring duties. I feel each carer has to reinvent the wheel on basic issues, which should be dealt with as a matter of course.

Brick wall

For example, I’d been banging my head against a brick wall to get some help with incontinence: Dad has an enlarged prostate and has trouble with urinary infections. He was constantly waking up in the night and not making it to the toilet. But they wanted him to keep a diary for two weeks recording every toilet visit. It was ridiculous!

Then, Dad was unwell and stayed in a cottage hospital where they gave him these penile sheaths (which are a bit like a condom with a funnel at the end) and leg bags, which we hadn’t heard of. So with a night time bag, he could sleep properly. And during the day, with the leg bag, he was much happier to go out and to drink as much as he should do without having to keep rushing to the toilet. It improved his quality of life – and ours! But we only found out about them because of the stay at the cottage hospital.

And someone else told us about disposable bed pads for children, which are brilliant for older people, too. If there’s an accident you don’t have to change the bed linen, just the top sheet and the pad. They’re far better than waterproof sheets, which seem to take three days to dry out when you wash them.

Hospital incentive

I had also cared for my mum when she had a terminal illness in 2014, and I found out that it’s a lot easier to get mobility aids when your relative is in hospital. The physio and the occupational therapist come to the ward, and say, ‘We won’t let this person go home until they have such and such,’ and it’s provided, because the hospital wants the bed back. When they’re trying to get someone out, they’ll throw everything under the sun at you, but once you’re out in the community, it’s like getting blood out of a stone! We got things such as perching stools, seats in the shower, steps to get in and out of the house, and now they are useful for my dad.

 

My advice to other carers is to grill anyone who you come across.

Getting information

They’re forever reorganising the NHS and other care organisations, and I find that a lot of the staff are in their own little silo, where they don’t really talk to each other. If you ask the right questions you might get information from them, but sometimes you don’t get a full answer because they haven’t got the time or the budget to help.

My advice to other carers is to grill anyone who you come across. Find out how the system works, which buttons you need to press, who you need to contact for certain things, and be persistent. It helps to be chatty and friendly because, after all, they are human beings, too. If any of the staff give me their mobile number, I keep it and then if there’s a problem I can call them. I find that even without a proper referral, they often say, ‘Oh, I’ll see if I can sort that out for you.’ But I really feel for the elderly people out there on their own who don’t have someone to fight their battles.”