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.

And he was home for 12 weeks, which wasn’t too bad, and we had a bit of support to start off with from social services, but when that dried up he didn’t want anybody to come and help him, so I had to wash him, dress him, and if I left out the wrong clothes – he’d put on the previous day’s clothes as well as that day’s clothes, so that was really awkward. And he’d got to the point where he got really aggressive, really stroppy. I had to have him on tranquilisers for awhile, and then one day he was threatening hellfire and damnation out in the garden, [oh] he was going to kill everybody, then he wandered off and we couldn’t find him and I had to get the police out to find him.

And then the rapid response team for the care of the elderly, in this neck of the woods, came round and convinced him that he should go back into hospital, which he reluctantly agreed to. So I took him, because we couldn’t get an ambulance to take him, so I took him and admitted him, and as I walked in the door, the staff said to me, “Just leave him with us, give me his bag, leave him with us, you go off,” so I did. He was there for just on four weeks, if he’d have stopped any longer he’d have gone from a section 2 to a section 3 under Mental Health Act.

Well as I say, I think it’s important to get your… your lasting powers of attorney, your wills, and anything else like that done, I think it’s really important that you try and get that sorted so that… and especially for the person who is the carer rather than the one living with dementia, because I think it’s important that you’ve got that done, because if the person living with dementia outlives you, then they won’t know what to do with you, so you need to make sure that you’ve got something in place for yourself.

Yes, and it’s important that you try and get things in place for your loved one who’s living with dementia. And for members of the LGBT community, I think it’s even more important to make sure that those bits and pieces are there. And not so bad if you’re in a straight marriage, and that’s really quite straightforward, but I think it’s important to… if you’re able to enter into a civil partnership before dementia takes hold, then it would be sensible to do because it then helps you as the carer to make sure that your loved one gets the care and attention and support that they need; I think that’s really important. I think it’s very important when they go into care, if you’re the one that’s taking them and settling them into care, that the care home is fully aware of the situation and understands the person’s needs and is open to the idea that you are a same-sex couple, that there might be images in the room that the person likes that they might not necessarily like, but I think it’s really important, and that’s part of what we do at Free to be Me in Care, that people that do have to go into care can be free to be themselves in care, that they’re not going to be restricted and they can, within reason obviously, be… be looked after.

And I know with dementia it’s not quite that straightforward, but even so, it’s important. And it’s important for the carer to make sure that they do get some respite, and if they can join the local dementia organisation, whatever that may be, that they are able to leave their loved one for a day at a hub club, or some form of activity, so as to give them some time to do things themselves. And it’s important to keep as many contacts going as possible. In most cases I think the person living with… with dementia will be totally different to [partner name] who wants to put this shield round himself and fend everybody else off – in most cases people have got much better support in loving families, and it’s most probably a bit easier. But yes, you do need to make sure you’ve got the support in place; it… it is important, yeah.

It was quite good really because the activities coordinator on that floor, which was a dementia floor anyway in the care home, was a member of the LGBT community so that really helped.

The one or two things that were really galling, was that he’d got all his clothes there, and they’d got a laundry onsite, so I didn’t have to do any washing, they never dressed him properly, and then when I went one day, again she said, “Oh, he’s not eaten anything today,” so I said, “Well, why haven’t you put his teeth in?” and she looked at me at blank amazement, so I took her to one side, she was the senior nurse on, shut the door of the office, and I said, “Now look here,” and I give her a right earwigging, and I said, “you… I’m paying a lot of money for this, you need to make sure: a) he’s dressed properly, b) he’s got his teeth in,” I said, “and if you don’t start to do this,” I said, “there’s going to be serious consequences, it’s no good telling me he don’t eat, and if you’re not putting his teeth in, how can he eat if he hasn’t got his teeth in?”

But yes, after we had a deep meaningful discussion, things did improve, and on the whole the care was very good. They had a number of seating areas so he was never in the same seating area whenever I went, he was always moved around, so he was in a different place every day. He had his own room, which was fine, and his own en suite, so that was OK, and I’d put things which he would recognise in his room; I was allowed to sort of personalise his room, which was quite helpful.

Times he’d be really good, times he’d be really vacant, and I’d say to him on a… on a morning, “Oh, don’t forget we’re going to do so-and-so today,” “Oh, arr, we… I’ve been to bed since then,” that’s what he always used to say. He got himself a mobile phone, which he couldn’t manage, he had a real struggle trying to remember what to do with it. And about 15 months before he died, I just thought, ‘do you know what, this is just not right,’ so I said to him… and I’ve since learnt it’s very difficult to… to say to your loved one, ‘I think you’ve got dementia, we need to sort this out,’ because they would always, always deny: ‘oh, no, no, no, I’m just having a bad day, don’t worry about it.’ So I said to him one day, I said, “I think we need to pop and see Dr [name],” “Oh, do you, why’s that?” and I said… and whenever he went to the doctor’s in these later years he always wanted me to sit in with him because he could never remember what she’d said, so I said, “Well, I think we need to go and see her and we just need to have a word with her about memory,” I said, “you’re just getting a little bit forgetful and I think it’s a bit worrying,” “Oh, do you think so?” so I said, “Yes,” I said, “I’ll make an appointment.” Anyway, we went, and Dr [name] was astounded as how bad he really was. We were referred to the memory service which is based in [location] for this part of the world, and in those days it was quite quick to go through the service, and the consultant was really worried – wanted him to go for a brain scan, and he was diagnosed then with medium-term dementia, and once he’d got the diagnosis, he just sort of seemed to give in, and it was real struggle.