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Autistic and old

TheCatWoman

I'm wondering what it will be like for autistic people as we age and maybe need residential care, will there be any provision for us? Will the cognitive tests for dementia be modified to accomodate us? I could well see a situation where I'm asked to do something and can't do it because I've never been able to do it and its not a sign of cognitive degeneration.

How will care homes cope with us? Will we be force fed ABBA or The Beatles because thats what some well meaning NT decides was popular in our youth? What if we want to listen to the Sex Pistols or the Clash, or Pink Floyd? I see older people in care homes and what they're made to put up with in terms of "activities", a steady diet of soaps would make me wish to to impaired to care, will we be able to watch re-runs of Game of Thrones? What about our need for personal space? I've heard that called "self isolating" by dementia nurses, it dosent' seem to occur to them that for many of us hell is other people.

Parents

  • The care home experience of the 'tech' generations will be very different from the current situation we see in care. While I cannot predict specifically what will happen, having worked in a care home I cannot understate the importance of making comprehensive care notes about your likes/interests and dislikes.

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  • The care home experience of the 'tech' generations will be very different from the current situation we see in care. While I cannot predict specifically what will happen, having worked in a care home I cannot understate the importance of making comprehensive care notes about your likes/interests and dislikes.

Children
  • in reply to CM

    I don' t feel part of the 'tech generations' as you call it, but I do agree that making some osrt of living will is important, my worry is will staff in care homes stick to it, or will it be like birth plans were they read it and ask 'do you really expect us to do all that?' I've been told off for having my light on late, because I can't sleep in a room full of people and I don't normally go to sleep before 1am, I've been told 'this is a hospital, you have to stick to our routines'. 

    The idea of being force fed the Bee Gees is horrifying, I think I'd try and jump from a window!

  • in reply to CM

    This is a hugely important point both in terms of best practice and professional standards from my limited understanding - my late Dad’s care home in Ireland had all the modern facilities despite being in the middle of nowhere in Rural Ireland yet always felt like a normal family home when I used to come home on visits from the U.K. - one of the most important provisions was for faith and religion and they had a room set aside set up as a Catholic Chapel (as most of the residents were Catholics) - they even had a retired Catholic Priest as a resident of the care home who would distribute Communion to all of the other residents as well as do Confessions, as well as the local Priests of the Parish and they would also pray the Rosary together (which is a uniquely Irish Catholic tradition) - when someone does eventually pass, we Irish would recite a Decade of the Rosary and it’s a really lovely custom that is still carried on with Irish funerals to this day which happened with my Dad’s funeral Mass in 2018