Autistic and old

My ideal would be a place with gardens that went a distance so you could go for a walk in peace if you wanted to and small units that you could have some independence if wanted, but someone on call if needed. This would be a bit like people who have carers coming into their homes, but with people close at hand.

It is a pity so many places don't understand some people's needs to have their own space. It reminds me of life in general where people feel they need to encourage everyone to join in with socialising that some don't find comfortable. I think entertainment and activities should be optional.

It would be good to have homes set up for those who don't want to follow the crowd and perhaps ask advice from residents or possible residents of the future. 

I hope I don't need care too, I think I would end up being one of those awkward people that would be difficult to place, because I wouldn't do as I'm told. I wold probably end up being over medicated, which could be fun with the list of things I'm allergic too and that stuff like valium dosen't work on me, 60ml intravenously and I could still fight? It will not only be unpleasant for me, but for those tasked with looking after me.

Will autism be recognised by geriatric care or will they think it magically disapears when you get to a certain age? WIll it be conflated with the various forms of dementia? If I suffer cognitive impairment will I be able to say when medications disagree with me or will I be seen as being difficult?

I'm not tech savy and I can't see me being so if I went into a care home, I think I would just end up being isolated rather than left to enjoy my own company.

I had a similar experience when in hospital, they wouldn't let me keep my curtains closed around my bed.

My mum spent 2020-2022 in a care home, it was hell. What with Covid,and the fact she was only council funded she ended up somewhere not great. No booze, no decient food, no sky TV, full of old grumpy people. Personally I will end it myself than go into care. It is true that people now in their 60's will be tech savvy and have much greater demands like wanting Netflix, Sky, more food choice and not be backward in complaining like my mum was.

It’s such a pity that our parents generation, although caught up in rebellion against our grandparents yet falling victim to all kinds of brainwashing and manipulation, failed to heed and act upon the warnings and predictions of our grandparents before they passed in the 80’s and they paid a terrible price in their own old age for their failure to do so, where being in a home and having their pensions taxed and means tested was only a small part of this, which our generation witnessed once long out of the confusion of our teens when our grandparents passed - I’d hazard a guess that in their own old age, our parents realised they had made a terrible mistake which they regretted before their own passing - the mantle of responsibility for acting in a proper manner now falls to our generation, especially if some of us happen to be parents ourselves and it is one of many harsh lessons that we have had to learn the hard way during Covid 

My Gran refused to be in a 'Home'. She had her dying wishes, passing away in the family residence.

It was for the best.

Good topic.  My mum now aged 95 moved into a residential home last year. The first home "couldnt handle her". It was a horrible place anyway. Residents werent allowed to stay in their rooms, because the staff needed to "keep an eye on them".  Anyway my mum was shouting at the carers. We found somewhere else for her and she is now settled. This is an EMI home, so staff are trained in dealing with "challenging" behaviour. Although i dont think wanting to stay in your room should be considered as challenging behavior. I think my mum is autistic  i told the social worker and care home manager this. It matters that they should know. 

Im sure signs of autism with the elderly could be misunderstood as dementia,  which is worrying. Another reason why a diagnosis is so important. 

Me, i will definatly want to stay in my room! I hope i dont live as long as my mum. 

I have never been a fan of Abba and i dont wear christmas jumpers! 

Hopefully, eventually, there with be residential homes for the elderly autistic, just like there is for the elderly mentally infirm. Oh but will they be managed by suitably qualified staff? Not in my life time! X

You try doing an activity that is not on the approved list in one of those places...

When my mother was in a care home she was asked if she would like to go down to the lounge to sit with the other residents.

She said 'no'.

The staff member asked her why and her response was 'I don't like people'.

This appeared to cause some consternation amongst the staff but it was so true of her and at least she still had the mental capacity to tell it as straight as she had all her life!

I think thats one of the things with activities, they never ask the residents what they'd like to do, I'm not surprised the activities person had never considered the needs of autistic residents, for many older people diagnosis didn't exist. I think there's still a long way to go in recognising not just autistic women but that autism affects people differently.

Good for you for complaining and getting something done about your fathers respite home, but I think it's still a far to familiar story.

In my dad’s final year at home we put him in a care home for a week for respite care. On his first day there I went to visit him and he was in a massive room with all the other residents sitting in a semi-circle watching an unbelievably loud TV which he was practically sitting underneath.

I was completely overwhelmed by the noise and the smells. It was hell on earth to me. And my poor dad, who I am sure was also autistic, pleaded with us to get him out of there.

It was a particularly bad care home and I ended up making a formal complaint to the care commission who did a spot inspection a couple of weeks later and took action against them, so I shouldn’t judge all care homes by that experience but it has left me with a strong conviction that I’d rather die than go into one.

This is an interesting topic and reminds me of a conversation my daughter told me about a few days ago.

She was chatting with a lady who's an activity coordinator in a care home. This lady said she would do everything she could to persuade the residents to join social events. My daughter pointed out that not everyone would welcome this and pushing people to do things they really don't want to do would be a dreadful thing to do. She cited me as an example - I like my own company (most of the time) and feel very uncomfortable in social situations.  The activity coordinator was a surprised and admitted that she had never considered the wants or needs of autistic residents. 

Society has a long way to go. Not too long ago (in popular culture) it was presumed that only little boys could be autistic. Society needs to understand that autistic kids can be boys or girls and they grow up to be adults and then become older people. 

I hope that (if and when) I need to be in a care home my daughter will advocate for better care for me based on my autistic/ADHD identity. 

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!

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 

It’s an interesting discussion, as I’ve been hearing online over the last few years about care homes specifically for older LGBT people - in my late Dad’s care home back home in Ireland, I heard from other family members that there was a lovely young gay male nurse who after completing his nursing training and after gaining experience in caring for older people, he was starting a project to set up a care home for older LGBT people - it would appear that many of the needs of older LGBT people are perhaps similar to ours as we get older 

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.

I've just had a vision of old guys in white 3 piece suits and old ladies in floaty dresses throwing their walking sticks and frames to one side, putting a Bee Gees record on the turntable and doing a Saturday night fever dance. Great memories.

https://youtu.be/fy0rYUvn7To?si=QsaUZxcejUZs6JNg

I'll end my life as a tramp succumbing to hypothermia rather than live in a "care home"...

(I've had hypothermia in my early twnenties and after the uncomfortable bit passes, it seems like a fairly decent way to go).

I've considered jail as a more viable old age pension plan than a "home". (I'd steal someone important's aeroplane, and joy ride it for a while, to an airfield of my choosing). Probably visit a friend for a while, then hand myself in for a ride back home to face the music.. Oviously I'd do it again whilst out on probation to ensure a decent custodial stretch, as I've no prior form teh one offence might not be enough to ensure jail.

Happily, it now looks like I'll not need to resort to either..