Carol

Carol’s partner was originally diagnosed with cognitive impairments in 2018. However, his memory continued to deteriorate so she asked him to be seen at a hospital with a good neurological department. He was eventually diagnosed with Alzheimer’s disease and Carol has been caring from him from a distance.

Carol’s partner began to show signs of dementia in January 2018 when he began to forget things he was working on at work and would panic when navigating transport. They went to the GP, who thought her partner might have Myalgic encephalomyelitis (ME), which is also known as Chronic Fatigue Syndrome. However, the doctors chose to still refer him to the memory clinic, which is where he was diagnosed with cognitive impairment. When they returned a year later, they were given the same diagnosis despite her partner having deteriorated. Carol did not agree with this diagnosis, so she asked her partner to be referred to a hospital that had good neurological care. At the time of this referral, Carol’s partner could no longer work due to his memory issues. Once referred, Carol’s partner was diagnosed with Alzheimer’s disease in August 2020 and put on medication.

Carol found getting her partner a diagnosis difficult and that felt that if he had he been correctly diagnosed he could have started treatment earlier. As a result of his original diagnosis, Carol’s partner was discharged from the memory clinic and had to go through the referral process again after receiving his diagnosis of Alzheimer’s disease. They found that having to get referred again further prolonged the process of getting her partner the care he needed.

Carol does not live with her partner but is regularly contacted by him during the day and night as his Alzheimer’s has caused various behavioural changes. For instance, Carol leaves post-it notes around the house to remind him if she is away and will not be visiting, as he will forget and continuously ring her. To help her care for her partner from a distance, Carol also had a door monitor fitted that would notify an out-of-hours service if he left the house at night. Carol’s partner previously wandered in the night when she was not there. Carol has found her partner’s behavioural changes difficult as he experiences visual distortions.

 

Carol describes her anxiety about caring for her partner

Age at interview 58

Gender Female

Well, I’m on antidepressants now. I wasn’t before. I’ve been on those about eight months, I suppose, yeah, eight or nine months, only a low dose, but it helps take the anxiety away. I don’t get a lot of time to myself, really. I used to do a lot of gardening, but that went by the way, went by the wayside last year. It’s yeah, he’s, if I’m not with him, I’m thinking about him or I’m doing his finance or I’m doing his pills or I’m doing something, something to do with him. So, yeah, there’s not, not a great deal of time for me, really. I mean and I do try and keep my life going, trying to hang onto my life with meeting friends and going to classes and things like that. But he, you get tired, you get really tired, yeah. It’s, it’s quite hard, really. And I’m not getting any younger. So yeah, the older I get, the tireder I get, really.

What do you think is the cause of this sort of depression is?

My depression? I think it, well I don’t know, really. I used to suffer from depression when I was very young, in my teens. And I felt that feeling coming back so I thought I better do something about this before it gets too bad. So, that’s when I went to see the GP. And I just think it’s probably the stress of, of looking after [partner] and sorting everything out and also, I suppose wondering how it’s going to end, really. Yes, yeah so I think I would feel a lot better if he was in this complex, so I would know that he was, there would be somebody there all the time which I think would be a relief really to know that he was safe, yes, yeah.

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Carol describes the delay in receiving a diagnosis for her working age partner

Age at interview 58

Gender Female

And then he realised that the he couldn’t do mental arithmetic anymore which was a big part of his job and then he’d forget what cases he was working on and what he’d done on them and so he had to give up. So, that was the beginning of it, really. And, yeah, that was 2018 January in the January. 

And did he have to go to, did you have to go to the GP or how did he get, has he been diagnosed or had he not?

No, he hadn’t been diagnosed then. We went to the GP and they thought it might have been ME (Myalgic encephalomyelitis, also known as chronic fatigue syndrome) but they referred him to the memory clinic in [location]. We saw a doctor there and he thought it was cognitive impairment. And he said there was no treatment for it which I wasn’t really very happy about, but you do tend to believe what they tell you. And so then we waited we saw him again I think about a year later ‘cause [name] had deteriorated a bit and he still said the same thing. And then, a year after that, I thought, this isn’t, this isn’t right. There’s gotta be something. So, I asked for him to be referred to [hospital name and location] who I read had a very good neurological section and that was 2020. And the consultant we saw there disagreed with the original diagnosis. He said, “Well, you’re not cognitive impaired if you can’t work anymore. So, you know, there’s definitely something worse than that. And he diagnosed the Alzheimer’s disease then; That was August 2020. He put him on Donepezil tablets and that, that was the beginning of it, really.

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Carol talks about her partner’s visual distortions and how he must feel

Age at interview 58

Gender Female

But yes, I mean, I think couple of weeks ago he phoned me to say I was standing in front of him and I said no, I’m at home. And then he said there was a lady in his place with a black shawl so, yeah, it’s strange, very strange, really. I don’t know if he realises he’s imagining it or not, really. Yeah and he saw horses in the garden which is impossible [laughs] for anything to get in the garden. So, that was one evening. And I just said to him, oh I said, “They won’t hurt you.” I said, they are outside, they won’t hurt you.” But yes, I mean he, and little people, he sees little people. He said, “They come in and steal things.” But I haven’t had it in the last two weeks I don’t think. But we were gonna ask the consultant about that. As well, yes, ‘cause I think there is some medication they can give for that sort of thing. Because it must be quite scary if you’re actually think you’re seeing someone in your home and it’s not, you know, they aren’t really there.

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