Decline In Cognitive Dysfunction — Scope | Disability forum
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Decline In Cognitive Dysfunction

GosportNancy Scope Member Posts: 37 Courageous
A long history of cognitive dysfunction

Back in the 90s, my university gave me lots of extra support on the back of a cognitive function and memory assessment I paid for privately.. I was in my mid-30s at that time.

I adjusted pretty well by accepting that the issues that had followed me all through my schooling had finally been recognised and just got on with things.

Fast forward to early 2016, when I collapsed at home from multiple organ failure following an upper respiratory infection. I was hospitalised in March where I had a cardiac arrest and spent several days in ICU in a coma and 3 weeks in hospital on a cardiac ward.

I had a memory test in the hospital and was given the all-clear, which was a bit odd since I had cognitive and memory issues before my stay in the hospital. I continued with the issues and waited for some improvement which has never happened. At this time I was caring for a friend who needed a full-time carer due to serious health issues and mobility limitations and needed support with pretty much everything. My friend died last November and it wasn't until recently, that I realised how much I depended on him for help with reminders and so on.

My decline is really causing serious issues now and my concern is that since I live alone with no local family or friends, there is no one who can inform any authorities when I am too ill to do it myself.

I have contacted social services but they have told me that they have no concerns because I can hold a conversation over the phone. This makes no sense as I don't remember who I spoke to, nor when, the department they are from or much of what they said. My mother could hold conversations when she had Alzheimer's so I just don't feel listened to,

I have a brain scan booked for 9th June at a local hospital, but I don't meet the criteria for patient transport because I have no paperwork that says I need support for appointments, which I clearly do.

The photo is of my new best dementia clock, which helps me avoid having panic attacks because I know longer know whether it is day or night if I wake up in my bed
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  • Adrian_Scope
    Adrian_Scope Testing team Posts: 10,599 Scope online community team

    I'm really sorry to hear about the difficulties you've been having with your cognitive function and memory and also sorry to hear how you're feeling the impact of the loss of your friend. Losing someone close to you can often creep up on you as you come to realise how they affected your life in different ways. You mention here that you don't much of a support network around you, have you taken any steps to improve your social network at all?

    It's good you reached out to social services for help, but I can certainly appreciate how frustrating it must be that their assessment didn't line with your own experiences. It sounds like you don't feel very heard or understood, especially when it comes to your health.

    I know right now it feels like there's a lot of hurdles, but please remember that you're not alone, and there are people who care and want to support you. In addition to the medical appointments and services you're pursuing, consider reaching out to local support groups or organisations specialising in cognitive function and memory issues. They might be able to offer guidance, advice, or even connect you with others who have similar experiences.
    Community Manager
  • GosportNancy
    GosportNancy Scope Member Posts: 37 Courageous
    edited May 2023
    My support network is all online as I am housebound. I recently reached out to my local GP practice and they have asked me to go there for scans and other tests. I have organised things so I can get there but because patient transport isn't available for GP practice visits and I also need someone to be there with me because of the cognitive issues it will cost me around £50 or so fr each appointment. This is really difficult for someone on means-tested benefits.


    There are 10 types of posters on this forum, those who understand binary and those who don't
  • Hannah_Scope
    Hannah_Scope Posts: 7,093 Disability Gamechanger
    edited May 2023
    I'm so sorry things have been difficult @GosportNancy Can I ask, is it the transport that is costing the £50? 
    Hannah - She / Her

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