A Carer’s Diary – Episode 6

Her care is so intensive. That is, the care she requires is so intensive, so all-encompassing, that her carer – me – has so little opportunity to recharge, to get away and take any sort of break. It’s like that with mental illness. I know from chatting to other carers (through Rethink) that the caring never ever ends.

If Harriet were simply housebound, then getting someone else to sit with her for short periods of time – even for a couple of days, or a weekend now and then – would not be so difficult to arrange. We have family and friends living close to us who would happily step in. But mental illness is difficult like this. It’s not a smooth thing, it’s not a neat, easy to plan around thing. It means she cannot do with me being away from her for more than the shortest amounts of time; and it means that no one but no one else, can step in to take my place. She simply could not, cannot, cope with this.

Perhaps a hard approach can be taken here. I know of mentally ill people who are left by their carers – usually their loved ones – in the hands of an agency nurse, or a support worker, while they go away to visit a friend or relative, or perhaps go shopping. And sometimes this works really very well. And sometimes it does not. Their patient will sometimes take against the stand-in carer, become angry, distressed, upset. Perhaps a hard approach can be taken here. Perhaps the regular carer must simply say to themselves, Well, I have to get this and this done. Harriet will just have to put up with the support worker until I get back. I know she doesn’t like it, but it’s not for too long.

I find it too hard to take this approach, but like I say, Harriet feels strongly that we should try to find some way of me gaining some respite from the permanent caring routine. With this in mind, we recently paid a visit to one of our local social services hostels that specialises in accommodating patients with similar psychiatric needs to her own.

Her CPN arranged the visit, and we all went down to the hostel together. The warden showed us around; showed us the bedrooms, the canteen area, the leisure rooms. And then she sat us down and explained the house’s philosophy on day-to-day care. They had two very clear policies: no skulking around inside your room all day, and you’re free to come and go as you please.

Nothing could have been less appropriate for Harriet. She does not, cannot mix in a leisure room all day with a group of strangers. She cannot manage to mix with her own immediate family, never mind anyone else. And secondly, if Harriet went out of the building there’s no telling what she might get up to to put herself in immediate physical danger. To allow her to leave and not to chase up whether or not she’d found her way back, would have been a recipe for untold nightmares.

We both agreed on all of this. That sadly, for her, with her own particular needs for care, this respite hostel was simply not to be. Perhaps a hard approach could have been taken here. After all, she’d only have been in the place for a few days, three or four at most. Just long enough for me to have had a few days away, a few days’ rest. But there was no way I could inflict upon her an environment I felt she may have been unsafe in. This is the burden of care, and it is so very difficult to achieve anything like a happy balance.