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Dementia and what it means.

onebigvoice Scope Member Posts: 759 Pioneering
How do we make sense of |Dementia.  this is my opinion of what I see.



Do you know what it means, to hear those words

Was it you, or a loved one that looked, out from that blank stare.

Do you comprehend, I’m still in here, looking out,

Trying to make sense of the world I see, and the sounds you make

Stringing words to help you understand, what it takes to hold a conversation.

My mum came by the other day, she had a cup of tea and a chat, and that was that,

My kids came by and asked how I was, I thought that was funny, but that’s OK

Did I mention my mum, Oh sorry, I didn’t tell you she died, and that was that,

I don’t know why I’m here! hello, who have you come to see?  Oh why is it me?

I only came in because the sun was hot outside, and need to rest in my hotel room.

Call me for dinner, I don’t want to be late, did I finish baking that cake?.

The staff in here are great, watch, Can we have tea served outside today,

They even give biscuits and Chocolate Cake,  Hello who are you?  Did just ask that?

Have we met before you seem familiar, all this from a person I loved so dear.

It’s trying to make sense and help me remember the past,

with hope, that this might not last, and the person I knew would say I love you.

It’s hard to see someone you love, forget who you are, it’s not their fault, but that’s OK

The brain misfires and it’s not a joke, and binds different memories while I’m awake,

But what happens when I go to bed, someone has changed all my bed,

Did I tell you my Mum came to visit?  Did I just say that, I’m sorry, I keep repeating myself.

  I’m sorry you’ll have to go, it’s all right, I’ll tell them, I would see you out,

Or maybe I’ll get one of my staff to escort you out, and next time make an appointment

So that’s all right then.

Why are you looking at me strangely, I’ve paid for the Hotel and will be back next week.

 I’m not on Holiday, am I?  And all this from a blank look.

Live for today and don’t spend time arguing, you could be where I am wondering who is sitting, next to me.   

Without the help of the NHS, and the kind staff in there, how would I cope 24/7? 

Who looks after them, when the day has ended, who cooks their tea, or is allowed to Watch Eastenders? 

Who washes their uniform and gets it ready, ironing those creases, and all those pleats,

For those are the staff that keep me safe, while I try to make sense of this place.  So that’s all right then.

OBV.  04/0565/2024.


  • Albus_Scope
    Albus_Scope Posts: 4,836 Scope online community team
    Thank you for sharing your words as always @onebigvoice dementia has such an impact on so many people. 
    Albus (he/him)

    Online Community Coordinator @ Scope

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  • onebigvoice
    onebigvoice Scope Member Posts: 759 Pioneering
    This is only the start of things to come.  Having been through this twice before.  The new social Care Act was to be going forward in assisting people get the right assessment first time.  Which we do from the NHS yet, someone in government who does not understand the severity of any situation, and thinks that by having somneone else look at a report written be someone that is supposed to be Medically Qualified, not to asses youagain, but assess the information sent in, in support of your claim for benefits.
      This as you know is your medical History and supporting letters, but think that a liottle small examination is O K to see if the descriptors and the medical information match your conditions.
      Ther Social Care Act going back to 2015 was to realise that people were NOT given the medical help or the financial help they should have had and made errors.
      How is making it harder to claim help making it better for those that claim benefits?
      The Green Paper says different.  People are not speaking in plain ENGLISH, when they state that CLINICAL RESULTS SHOULD BE USED BASED ON THE CLAIMANT FORMS.  Does not mean that Capita, Maximus, Concentrix or ATOS can continue to assess people in the same way they have been, unless they complete a discl;aimer that they wrote the report, it was signed and understands the consequenses should the report they wrote not be of the same standards as the ones written by the NHS.
      I will not read between the lines as this is already going on from the people who are supposed to change the Social Care Act for the better.
      The Green Paper produced is 106 Pages, and I bet none have actually read it in its entirity?
    This is not what was produced in October and placed infront of Parliament last year?
    The number on Mental Claimants has rissen, but instead of having more Doctors and Nurses trained, would rather spend our money chasing people who they believe have been over paid.
    As a point of interest, how can you be overpaid anything when the applicable amounts that you are allowed to live on are set by the people chasing you for money?
      What is the amount of a decent living wage based on a 35 hour week?  So why are pensions not at least in line with that?
      Who is now working a 35 hour week when for instance they have increased the Age for retirement of women to where it is now?  It should be less not more and the male age should also be inline with "Europe?"  since we seem to be looking at others for direction and not fixing ours, by GETTING NHS Staff back to work and being paid for the skills they need to complete their jobs safely and that is to look after use, oldies and retired lot who have already contributed to the system which is now removing everything.
  • WhatThe
    WhatThe Community member, Scope Member Posts: 1,031 Pioneering

    for instance they have increased the Age for retirement of women to where it is now?

    Indeed, 7 years now slapped onto my retirement age - just like that - ignoring the very reasons men's and women's were different in the first place! 

  • 66Mustang
    66Mustang Community member Posts: 14,244 Disability Gamechanger
    edited May 4
    I have a bit of experience of family members with dementia and aside from it being a sad condition to watch your relative deal with, the way it's dealt with it in society is sad as well

    I can't tell anyone else what to do, it's up to them. But for me, if I ever got dementia that was serious enough that my family no longer recognised me (and vice versa) I'd consider myself "passed away" at that point

    Obviously this doesn't include people that have SOME quality of life - one of my relatives is in a home and has the odd glimmer where she is her old self. However if I was to be entirely taken by dementia, I think that the only people benefitting from my body's existence would be the care homes charging £1,500 a week for keeping my body animated

    Surely if the government denies me the right to die, then it's up to them to fund my care and allow me pass my assets on to my family - they can't tell me to stay alive AND pay for it??

    I have a separate question about the pension age - what is the rationale between the idea that women should be allowed to retire at a younger age than men? I am asking out of curiosity with a totally open mind so I hope my question doesn't come across as right wing or sexist and attract a preachy response as I am just genuinely interested in the reasoning, and will probably agree with it anyway! :blush:
  • onebigvoice
    onebigvoice Scope Member Posts: 759 Pioneering
    Thanks 66Mustang, I am inclined to agree with what you say, having gone through this with my Dad and now my sister-in-law.
      We always believe that they would some day "snap out of it" and I believe this is what keeps some of us going.  There are other family issues I don't agree with but who am I.

      You say about the Recent changes to pension right.  I am fighting this now, since in the "old days" men were considered the stronger and therefore would be the bread winner and stay in work longer because most married couples wanted a family, and it was always considered as there job to do that.
      I know these comments, like you may cause concern, but that was the way it was.  It was also a fact that slowly the age for males was to be reduced, to 64, 63 and 62 until they were inline with the women, to allow men to have some quality of life to be able to do some of the things that they could not do when working.
     Fast forward 20 years, and we have gone from a 60 hour week, to a 52 hour week, to a 48 hour week, to a 45 hour week, to a 42/40 hour week to a 39 hour week, to a 37.5 hour week to a 35 hour week, to a 40 hour week, having to have more than one job to survive, contribute to National Insurance, have the government obliterate the pension system, allow queue jumpers on Private medical Insurance that we won't get for Pre-existing conditions to, having NHS out on strike, working longer hours for the same money, and being fed Bulls droppings by them saying the spend on the NHS is the most its ever been in 10 years?  Well it would be since you haven't given them a rise in longer than that, along with every other company you have touched, now on strike.
      Even if they put it back down again, the amount of money is still different?  Are they because the extra years need to be added going to give the women the same PENSION when even when working they don't get paid the same.
      When I was a shop Steward the job attracted the wage, male of female never came into it.  If everyone used their heads they should let the women work and the men look after the kids.  Cheap labour, same job same effort.  Less pension, its a win win......  Yeah Right, we have gone backwards in everything when supporting the British Worker unlike Europe or abroad who do look after their ageing population.
      If given the chance they would increase to 70+ or until you drop.
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