Carers of people with dementia

And I suppose, yeah, from, in terms of trying to get a diagnosis from that point, the mental health services they had  an occupational therapist and I think a nurse who, who kind of went in and because I think all along because my mum had a good memory, no memory issues retained kind of the personable aspect that, her ability to kind of talk to people be quite charming.

But at the same time be obstructive to any notion of getting like going, going anywhere to start with going into to be assessed. The only real way to, to properly diagnose dementia of any sort is to do a, as well as a kind of clinical diagnosis, you have to do a head scan and, and there was never any question that my mum would, would do that. They were trying to, to get to that stage and build rapport and it was, it was very difficult because I think Covid was quite rife at that point, so various people, appointments would be cancelled because people had Covid and obviously the amount of time it takes to go to someone’s house. Over the next six months, I think the relationship kind of evolved a little bit and they got to the point where a psychiatrist was gonna go in and do a home visit to her which I think, I hope would’ve done something towards getting, getting a diagnosis.

And even going up the stairs it’s… is getting difficult because like, you know, she’s finding it very unsteady to go up the stairs. I mean I’ve spoken to the council to see if we can get a stairlift or anything, but nobody’s come down, and it’s like an ongoing issue, I keep ringing them practically every other week and they say they’ll get some… you know, physio to come and have an assessment, but nobody’s coming down, so…

OK, and how long has that been go… when did you first contact them?

I first contacted them it must be about two years ago, but they said they’re very short-staffed and they are just working on, you know, like skeleton staff, and everything. But I think now it’s getting into an issue that she really… you know, because we… I haven’t got a shower downstairs, so she has to go upstairs, so she… and she’s finding it very difficult going up the stairs, so I think I may have to get a private firm to come and put a stairlift in or some… you know, because she can’t do that, and I don’t want her to have a fall because if she does have a fall then I’m the one who’s going to suffer looking after her, so…

On the point of the GP, on a more positive note: I had to have a telephone appointment with the GP in relation to Dad’s medication, not his… not his Alzheimer’s medication, something else, and I just asked that question, I said, “So, we’ve been referred back to the GP, is there anything place?” and was kind of half knowing the answer, and she said, “Well actually, we’re… we’re just in the process of looking at inviting people with the condition to come in for an annual review,” and we had that about three or four weeks ago, and I have to say it was very, very thorough, and it was a… I mean a… I don’t know if you know but in the NHS you… a GP appointment is probably a maximum of 10 minutes, you know, that they allocate 10 minutes for it, but this appointment was 30 minutes, and the guy that we saw, we had… we hadn’t met him before but he was very respectful, very friendly, he said… much like yourself, he said, “I’ve got a list of questions here,” but he said, “but what I want to do is have a conversation with you,” and he said, “I’ll fill in the questions… fill in the answers later,” so it immediately put Dad at his ease and he asked how he was feeling, how he was coping at home, what he was doing, pretty much asked the questions that I’ve given you some answers to today, but it was reassuring to know that it… that they had that in place, and that we’ll have a call next year to do the same. A couple of things were identified during that meeting, unrelated to the Alzheimer’s, but, you know, Dad being old, that there was the occasional ailment that needs looking at, so he’s been for a chest X-ray as a result; we wouldn’t have had that if we hadn’t have had that meeting.

OK, and that sounded like it was new, was it?

Yeah, yeah, they said, that the way he put it, he said, “Particularly with Covid, and we sat back and realised that lots of older people were passing away, and they were passing away as a result of things that they were getting, illnesses that they were getting,” I’m not articulating this very well, so bear with me, a… “but we as a practice felt that we would do better by seeing them in advance and identifying issues and being able to deal with them rather than when it’s too late,” so I don’t know if they’re applying it to all people over a certain age, or all people over a certain age with dementia, but it certainly felt like it was as a result of the dementia.

I went up on about the 11th of April and I have effectively been there ever since, although I’ve had, you know, a week off here, a fortnight off there, I had three weeks off there, kind of thing, with a lot of emotional support from the family and a lot of… also a lot of toing and froing with other people coming and kind of covering. And what I noticed then was that she was actually much less competent than I had realised, and much more forgetful.

Watching a TV programme, we were, for example, watching a two-hour crime drama: an hour in, he’s no idea what’s going on, and I thought, ‘something’s not right here,’ and the very next day I called the doctor’s and from there we went through the process. Obviously through lockdown, made it a bit more difficult to finally get the diagnosis, but then it was confirmed that he had… he had Alzheimer’s, and actually from… so realistically from the start of lockdown, I’ve been with him through… throughout that. So, initially I had to move up there and stay with him in lockdown, not least from the more vulnerability point of view, so I… you know, my family… the rest of my family were here and I went up there just to… to see through until such time as we could get through it. But it came very apparent, very quickly, that he would not be OK on his own, you know, both in terms of… the medication he was having to take, and just generally a care… you know, the ongoing care, but in the situation that we were all in, you know, obviously from one day to the next he’s forgotten that he can’t go anywhere, or nothing was up, and for example he’d try to go to [supermarket]: he couldn’t remember his PIN number, he’d then gone to the cashpoint: it swallowed his card, he’d go to the bank: the bank’s closed, and just those kind of things were what were becoming apparent, so yeah, I went up there and that was it; it took about, I think, six months to finally get the official diagnosis.

Well, he… he was in the hospital for about four weeks, or maybe more, so he went into the care home September or October 2021. I probably only saw him up to five times while he was there because of being restricted and the care home itself having lockdowns, so people couldn’t go, so it was usually… when you visit you have to make a booking ahead, which was about the week ahead, or even two weeks ahead, so I couldn’t see him much.

And when you actually saw him, were you able to be face-to-face with him or…?

Yes, we had to put all the gear on. The first meeting was I think with some council… or some… somebody representing the council, but independent of the council, to get an independent view of my father, even though I was there. But I was very unhappy with the care home when I saw my father because he was inadequately dressed, didn’t have his hearing aids, didn’t… and hence didn’t have any new batteries in his hearing aids. He was dressed in other people’s clothes, and inadequately, and it was… it was cool, and he didn’t have enough clothing on, and he had no socks, even though I’d taken the clothing along that he would likely need, although he… he did need some more, but they were not… the care home were not informing me of what he needed, so I thought some of these things are OK and but… but they were not. Yeah, so I was quite unhappy with the support that the care home were giving him.

So they would do things like they would setup a Skype call, they would leave my mum with the i… they only had one iPad per floor for 28 residents, so they would leave my mum with the iPad, and my mum would knock the iPad over, so I would be staring at the ceiling, and she would not understand where the noise was coming from, so that was not ideal. I had three visits which I found incredibly distressing where the setup was, I could visit and sit… there’s… the entrance to the home, has a big entrance door and either side of it are two long windows, and they setup window visits at those doors. So they would have a carer and my mum on the inside, and I would be sat outside on a chair, which was very cold, because the first couple of waves were not in the… in the summer period, and I was allowed a 30 minute window visit with my mum, so we would be talking on a mobile phone.

But my mum found that quite difficult to manage because she couldn’t sort of understand where my voice was coming from, so she would often sit and talk sideways to the carer, who was holding the phone, because she couldn’t work out that it was me that was saying the words that she was hearing. So that was very difficult, and I found that incredibly emotionally draining and distressing. I… I cried my way through at least two of those visits, because they were just horrible. I had… she had one visit in a non-lockdown period when things were… when visits were allowed outside. One of her friends from where… one of her friends from where she lived, was able to come and visit, and we sat outside and socially distanced, wearing masks, wearing PPE, having done Covid tests in order to do that, and he was able to see her and have a kind of a… a visit with her.

So, mum died in 2021. Yeah, we couldn’t see her for a year. I don’t think I could physically, we saw her through a window. They had gloves that you could kind of reach in. But, we didn’t see her. I mean, mum’s care home shut I think in March 2020 and she died a year and a bit later. They did open, I mean, we got to see her a few times before she passed. But, our visits with her were not as, I used to go every single day. So then we got cut down to, you know, you have to book in an appointment. You have to have your test before. You can only go once a week. Then if they get an outbreak in the home, you couldn’t go at all. So, you know, during those last few months, we probably only saw her a handful of times. She also got, during Covid, she got hospitalised, not due to having Covid, she had a fall as far as I can remember. And I remember them not allowing us in the hospital to go see her. And they told me I had to stay in the waiting room, basically and they would call me in if they needed help with her ‘cos she was, she just wouldn’t let them do anything in terms of tests or. And then eventually, they got to talk about where they realised they’d get a lot further if one of us was there, so they let us in. But that was an, an argument to be able to go in and see her. And only one of us was allowed at a time as well.

Because she spent a lot of time on a ward by herself, and so she declined rapidly with the… 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.

So, yeah, it was, it was reasonably positive in the pandemic, but he couldn’t get out and do his groups, his group, even. It was just one group, one, one day a week, but it was every week. And they started doing stuff through Zoom and stuff and so he could do it through Zoom. So, he did, he did do that through Zoom. And that was the time that he got involved with [name] Support Group as well. He helped develop. He was heavily involved in developing this dementia care book to support people who’ve got a recent diagnosis of dementia and he was involved remotely and running like ten week courses for people and their carers who’ve had a recent diagnosis of dementia. So, yeah, there’s, there’s quite a positive thing with that. He got a lot out of that. A lot of, it helped with his, you know, self-esteem and confidence and everything.

The only thing… I think she was quite… I think after Covid, I think she seems to have gone down a bit more as well after Co… when Covid kicked in, because before I would take her, you know, a bit, you know, to people’s places and, you know, families, visit family and people, but because after Covid kicked in I was… she… she was just sitting at home, so I think now she’s got into that, she doesn’t really want to go out anywhere.

Oh, OK.

So… and also I think her movement has gone worse as well than what it was, so I find it more stressful trying to get her to go out, and I think partly because of the stress, I would… I just don’t bother taking her out anymore.