Jo’s mother is increasingly confused, so Jo is paying for care at home although she finds it difficult to get consistency of care.
“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 is 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 does not think there is a problem.
Care at home
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 last 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. They have 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 for.
So I ended up with four different carers. They keep getting it wrong. They don’t appreciate the need for consistency, like 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 some agencies only deal in units of one hour, while I only need a half hour unit sometimes, for example when my mum goes to the day 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."
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."
- Improving safety in and out of the home: advice about how to improve safety in the home, with a focus on assistive technologies.
- Financing care at home and Financing home alterations: details of your options if you are concerned about funding.
- What is dementia?: learn more about dementia and its early warning signs.
Page last reviewed: August 2016
Next review due: March 2018