Part of the Stories of Change project. Film by Gemma Thorpe.
David and his brother recently obtained Lasting Power of Attorney to act on behalf of their mother, Anne. Anne, 68, was diagnosed with Alzheimer’s in February 2014.
About 18 months ago, me and my brother finally persuaded my mum to go and see her GP about her memory which we thought was getting worse and worse and worse. That then began the process where my mum is today which is in an EMI unit of a nursing home, a care home. So yes, it’s been quite an eventful 18 months.
She’s been diagnosed by the memory service, by a doctor there, and she said to us both, you know, that there may be eight or nine years, maybe ten years before things have to be dealt with in terms of no longer being independent, no longer living at home. The diagnosis we received from professionals was completely at odds with the reality we were experiencing.
The decline was rapid. It was before our very eyes really. We were going back to the memory service and it was hard in 15 minutes consultation to get any sense of the wider picture. Certainly we weren’t spoken to individually to gain that full picture. And we really thought like there was a huge difference between the severity of the situation as we understood it, and the kind of reality of the care that was being provided for her.
And it began to kind of unravel, really. My brother spoke to another GP, who really took positive steps and action and engaged the social services, and for a time, I suppose, there was a stabilisation. And then it moved over. She’d had a care package assessment by the social services. She started to decline really again. We were worried that she was becoming more and more confused. She didn’t seem to be eating. We weren’t sure that she was taking her medication. They were supposed to be visiting her four times a day, but we weren’t even sure that they were doing that. There were lots of gaps. We got a phone call saying that she’d collapsed, that she’d been found by the carer. The carer rang the ambulance – the ambulance driver got there, read the logbook, and came to the conclusion that she wasn’t being cared for properly, and that it was a safeguarding issue, and she should go to hospital in order to get the care that she needed. Which was a real shock for my brother and I. I remember we went to see her in the hospital and she was confused. She was agitated, in a way that I had never seen her before. She seemed more and more remote, but still our mother, still full of happiness really, and kindness, but increasingly edgy as well.
Anyway, she was in the hospital and we got a phone call the next night to say that she’d gone missing, that she’d walked out of her ward. She wasn’t in a ward for people who had dementia. She’d simply walked out. We were incredibly worried about this. We were scared because we knew how bad she was. We knew that she didn’t know where she was. Eventually we got a phone call – the police had found her walking down the middle of the road.
Reflecting on it now, it’s a bit concerning that no-one was really speaking to me about what was actually happening in terms of the wider emotional impact, it was just being passed from one to the other.
When I went to see her in hospital she was being seen by a physiotherapist – certainly never spoke to a medic about her condition. After a month we were told to move her. We were told to find a care home for her – she had her assessment which was kind of good in a sense because it gave us an actual chance to talk to someone about the situation. And the social workers listened and were lovely, and the nurse listened and was lovely, and made the assessment, and said that she was EMI, that she would have to go to a unit that was secure. And then we were pretty much told that she was blocking a bed. We were told to find somewhere. We were given a list of care homes.
We did find somewhere in the end, but the problems continue really, in the sense that, well, she seems happy and she seems to have stabilised, the nurses really care for her, the carers care for her, you can tell there’s a really strong relationship, and it’s lovely to see her smile, and to see carers actually treating her with respect, but really we still have had nothing – from trying to find out about, for example, social workers, or trying to get someone to say we’re thinking about your mum, this is her case, these are the things that we can be doing for her. There’s nothing. None of that. It just would be nice to have some more support, it would be nice to have someone who knew all the different points of connection, who knew all the different agencies that drew it all together.
We only found out actually that we even had a social worker assigned to our case maybe two, three months after our mum was first admitted to the care home. Well, the social worker is lovely, but so hard pressed that you never feel they actually know the person they’re supposed to be helping. That feels a bit strange, and it feels like we don’t really know what’s going on.
To see a 68 year-old woman, such intellect, such a joyful life, to be infantilised really in two years has been incredibly heart-breaking really. And there is no doubt in my mind that that negligence – it’s caused rapid decline in her condition. You know, I think we deserve a bit better, we as a society really.
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Stories of Change is a collaborative project between Sheffield First Partnership’s Better Connected Programme, the University of Sheffield, local artists, and people of Sheffield; it is investigating how public services can be better connected to the actual needs of people who use them. By bringing together people from different communities and age groups, this project will help to frame an overall picture of how different kinds of crises might complicate the connection between people and public services.