Who Cares?

Pearlie has been home for just over a week. I think she is starting to settle down. Really it hasn’t been as hard as I thought although it is still early days.

The toughest part and the part I dreaded most was the Invasion of the Carers. There are a lot of them. They start coming in at around 8am and are in every couple of hours until 7-8pm. They carry out her personal care and make snacks for her. At the beginning I wanted to dispense with the first one for all she does is make Pearlie a cup of tea and some instant porridge. I was advised by the social worker not to do this. She pointed out that there may be times when I’m not available to get Pearlie’s breakfast and it was better to leave the first carer in place.

We’re fortunate that this is a big house so I could corral off one side of it for Pearlie’s use. Her side comprises a big sitting room, now a bed-sitting room, a shower room and a utility room which has been converted to a mini-kitchen. The carers do not enter our kitchen or sitting area. I joke that I have our side electric fenced.

It astonished me how quickly Pearlie converted her room into a cluttery, cushiony, tacky-ornamented living space. I’d envisaged the carers being delighted with all the space in the room but Pearlie, assisted by her favourite niece, soon reduced the floor space with a collection of terribly unnecessary (in my opinion) pieces of furniture. It’s what she likes.

Toileting is a big problem. They say that Pearlie is incontinent. I don’t think she is – not by what I know anyway. To me incontinence is having no control at all. Pearlie’s misfortune is that she still has some control, has no desire to just ‘let go’ and whose problem is not having the mobility to go unassisted. This means that she is dependant on carers helping her but the gap between going at bedtime (around 8pm) and the first set of double carers coming in at around 8 or 9 in the morning is too long. Her care package is not meant to include us helping her but we’ve started to because it is just so pathetic expecting her to ‘hold on’, or not, for such a long time.

The carers are a mixed bunch. They’re mostly lovely but always in such a rush. The ones that come singly tend to be very pleasant. The ‘doubles’, probably because they have a huge work load, are in and out as quickly as they can. They quite often spend more time interacting with each other rather than their client. Of course Pearlie isn’t the easiest person herself. She’s abrasive and complaining and about as far from a sweet lil’ ol’ lady as you could get.

The other day one of the ‘doubles’ was complaining about the price of diesel. Obviously the petrol allowance has not risen while the actual costs have soared. I sympathised. Then she went on to say that she reckoned that in future they wouldn’t be able to get people to do the work and that everything would go back to the old ways. ‘What’s that?’ I enquired. ‘People will just have to go back to looking after their own.’ I was just a little stung but I didn’t pursue it other than to remark that by the time she and I required help it might not be available at all.

I’ve always felt a little bit guilty ever since the early days of the carers coming in. I’d imagine they’d be thinking, ‘Why can’t she do what we’re doing?’ But then I’d remind myself that I work and the help is there so why not avail of it?

As I said before Pearlie can be very difficult. She’s sharp and abrasive and I’m sure that some of her carers don’t care much for her at all. One described her as ‘a character’ and she’s certainly got plenty of that.

Last night after I’d helped her with her toileting stuff and got her settled down as best I could she threw her arms around my neck and said, ‘Thank you so much for everything you’re doing for me’, and I said ‘No need for thanks. It’s a pleasure to help you.’

There will be times I know that I’ll be mad at her. But I hope there will be a lot more times that I feel the way that I felt last night when she hugged my neck.