Jo's story

My Mum is a slightly dotty, lovely old lady who doesn’t think she’s got a problem. She’s oblivious to what’s going on and she can’t cope with doing most everyday things. She's erratic about time, sleeps in a chair for most of the day and she gets very little mental stimulation.

She can’t shop or make decisions, so she doesn’t eat properly. She can make herself a cup of tea, but she forgets to do it and so she gets dehydrated and malnourished. It’s very common for people with dementia not to eat and drink well. They have to be reminded to do things.

She gets herself up and dressed and has a bit of a wash. But she has problems with urinary incontinence, so she invariably wets the bed, and struggles to get to the loo in time and wets her trousers, but she won’t use pads as she doesn’t think there is a problem.

Care at home — but at a price

That’s why I pay for carers. They visit once a day, either first thing in the morning or at lunchtime. We are totally self-funding. They don’t do the job properly, the staff turnover is very high and having staff work on zero hours contracts doesn’t do anybody any favours. On two weekends in the past month, the agency I use have given only an hour-and-a-half’s notice that they don’t have someone to go in and see my mother. It lost three staff last week. They’ve got insufficient backup.

I chose this care agency because they say they have experience of dealing with dementia and one of the key things is consistency. The routine has got to stay the same. But I struggle with the consistency of who actually goes in to see her. I was told there was a mature woman who worked full time and who would be Mum’s regular carer. It turns out she doesn’t work in the mornings, which is when I want the help, and she won’t go in at the time I want at the weekends. I also suspect she does less time than we pay her for.

So I ended up with four different carers. They keep getting it wrong. They don’t appreciate the need for consistency, such as having meals at set times. I need them to change the bedding, but carers don’t want to do the housework duties. Some of them don’t even speak English very well.

There’s a huge fat ‘communications’ file, which is so clearly aimed at covering health and safety, not at caring. It would take them an hour to read it! I keep saying, ‘Can we have bullet points, please?’ Another issue is that some agencies only deal in units of one hour, while I only need a 30-minute unit sometimes, for example when Mum goes to the day care centre. The whole thing is a nightmare.

If you’re looking for a nursing home, look for a small one. If you’re looking for a care agency, look for a big one with a lot of staff.

Top tips for arranging care

Two things I have learned are: if you’re looking for a nursing home, look for a small one. If you’re looking for a care agency, look for a big one with a lot of staff.”