Carers of people with dementia

And I think this is what cultural competency is about, it’s not about being an expert about everybody’s culture, but it’s having an understanding of what’s important to people. And so what does it mean you know to be Roman Catholic? What does it mean to Muslim? What does it mean to be you know Christian or of a particular denomination? What does that mean and how does it playout in the everyday or somebody’s life, you know? And it’s the same as food, you know, you don’t need to be… as a carer, you don’t need to be able to cook everything. I was born… born in the UK, my parents are from [Caribbean island]: she’s from [another Caribbean island], both of those islands have different ways of cooking, but it’s just understanding that. You know, and so when cooking: how would you do it? You know, and so just that engagement, rather than: ‘here’s your lunch,’ you know, but just sort of bringing back those daily activities, those daily memories, and it can be done; I’m absolutely convinced it can be done.

So I put together a folder that introduced her: so it had her picture, it had messages from us all to encourage her, and it basically told them what she ate and what she didn’t eat. So like she doesn’t drink cow’s milk, she has powdered milk, doesn’t eat minced meat, doesn’t eat pork, things like that, and it was all ignored, and I understand to a degree, we were in a pandemic, you know there’s lots going on, but it was just all ignored and it was having a major impact on how she was recovering. So we had that conversation, so we started going up every day to feed her and taking food that she would eat, and she began to recover. You know, she would sit up, we would play music for her, because music’s something that she absolutely loves, she’ll just sit there all day you know on repeat with her favourite music. And so we did stuff like that and she would get… coming back to herself,you know, getting well.

Because she spent a lot of time on a ward by herself, and so she declined rapidly with the dementia. When she was released, she was sent to rehab, she was put in a room with no TV, and a member of staff told me she likes looking out the window, so again we had to you know advocate on her behalf: ‘she needs to have a TV and we need to continue feeding her, and we’d bring the food up every day,’ and she started to decline again because she was spending so much time on her own that we then advocated for her to be discharged early, and if they sent her home, we could care for her. So did that battle with social services and the hospital, got her home: they then suspended her care package and placed her with a… excuse me, [coughs] sorry, placed her with a care agency, a completely new care agency, who sent five different carers in within the first week of her being at home.

I’d moved in by then to provide round-the-clock care for her, and one Sunday a carer came and… and really unpleasant in her approach, and my lady just sat on the toilet and screamed and just became really hysterical, and so I asked the carers to leave, went back, advocated with adult social care, you know, that they were using a systematic approach that was detrimental to her wellbeing, you know, and we needed her carers back, we needed her routine back, everything that she was familiar with, that’s what we needed to have in place to nurse her back you know to her self, and you know we did battle and we were able to get her direct payment reinstated, and that’s how we nursed her back.

Because we had a number of occasions where we had staff from other countries that are not accepting of the gay community, that were really not very nice towards him, and they’d plonk his food down and leave it with a knife and fork – well, by this time he hadn’t got a clue what a knife and fork was for, he just needed a spoon and a fork, and somebody to help him to eat it. And the staff used to say to me, “Well, he’s not had his dinner today,” so I said, “Really?” “Oh yes,” she said, “he’s not eaten at all today,” I said, “Oh dear,” I said, “that’s worrying,” I said, “well, I’ll tell you what I’ll do, I’ll come in tomorrow at lunchtime and see what goes on.” So I went in, and this nurse come up, plonked the meal down in front of him and walked off, and he just looked at it, and I said to him, I said, “Do you know what, that looks really nice,” I said, “that looks like one of your favourite meals,” I said, “that looks like a really nice stew,” “Do you think so?” I said, “Oh yes, I do,” I said, “but you don’t need a knife, let me go and find you a spoon.” Found him a spoon and a fork and just by tease him along – he cleared the plate, but because the staff were not looking after the patients at mealtimes, just plonking it and wandering off, of course they weren’t eating the food because there was nothing there to encourage them to eat the food.

So that’s something else I talk about these days, that it’s really important to understand what people like. And when people are admitted for… to care, either ask them or their carer, what their foods are, and what they really enjoy, and some of things that you can actually tease them to eat, because eating for dementia patients in my experience is always not the easiest thing.