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Perceptions of Dementia - Carers UK Forum

Perceptions of Dementia

For issues specific to caring for someone with dementia.
I'm getting so frustrated with the Rehab facility where Mum is at the moment - well, with the healthcare personnel she's had over the last five weeks or so. They seem to see that diagnosis on Mum's paperwork and start speaking slowly and carefully as if to a child or someone who has lost it completely.

Prior to this fall where she broke her hip and shoulder, Mum was 'high functioning' i think is the phrase. She lived on her own, cooked her own meals and managed really well requiring very little by way of support. Apart from a short spell of confusion in the immediate aftermath of her fall which could have been down to shock, pain, pain meds anything, she has recovered well.

They decided yesterday that they were going to see if she could manage her meds. I said she wouldn't have any problem as she'd been doing so for years, even reminding me to take my own! Well tonight this god-awful nursing sister came bustling in, ordered me out with a pointed reminder that I was there outside of posted visiting hours [and I'm going to continue to do so if this is the kind of care she's getting]. I hovered outside the door and I could hear this harridan treating my poor mother like some simpleton. The more hectoring she got, the more stressed Mum got. When I eventually got back in Mum was really upset. Apparently she'd not managed to pour the proper dose of a liquid laxative which she had never had prior to her hospital stay. This nasty creature had just shoved a list of her medications under her nose and wanted her to say which medication she took next and Mum had really struggled under pressure. After this nurse had gone Mum said she was upset that she had 'got it wrong'. She'd been so upbeat about her progress but when I left she was really down and despondent.

They see the word 'dementia' on the record and seem to think it doesn't matter how they speak to them.

I hate to do it but I can't see any option but to make a formal complaint.
Time for you to record this dreadful sister when she's having a go at you and mum, and then make a formal complaint. Most hospitals have a special scheme so that carers can visit outside normal hours, on the understanding that they might have to leave the room for intimate care or medical treatment. Find out if your hospital has anything like this.
Nicki, how upsetting and frustrating.

I know its different, but I have had similar experiences with S. Although he has autism and related learning disability - he is able to read and write and can communicate well if people understand how best to communicate with him. Some people don't accept this and therefore don't see the capable person he can be if given the time and appropriate and sensitive support. They then judge him as a being a lot less intelligent and less capable than he really is.

Is the rehab facility part of the hospital or a residential home? If its part of the hospital, it should have a dementia champion and dementia charter or similar that supports out of hours visiting and the rights of dementia patients and families. I would definitely be contacting them and wanting to speak to the rehab manager. The next time they want to assess your Mum ask if you can be present and someone else assess her. No one performs their best when they are rushed and pressured.

Melly1
Nikki_1906 wrote:
Sat Sep 28, 2019 11:06 pm
I'm getting so frustrated with the Rehab facility where Mum is at the moment - well, with the healthcare personnel she's had over the last five weeks or so. They seem to see that diagnosis on Mum's paperwork and start speaking slowly and carefully as if to a child or someone who has lost it completely.

Prior to this fall where she broke her hip and shoulder, Mum was 'high functioning' i think is the phrase. She lived on her own, cooked her own meals and managed really well requiring very little by way of support. Apart from a short spell of confusion in the immediate aftermath of her fall which could have been down to shock, pain, pain meds anything, she has recovered well.

They decided yesterday that they were going to see if she could manage her meds. I said she wouldn't have any problem as she'd been doing so for years, even reminding me to take my own! Well tonight this god-awful nursing sister came bustling in, ordered me out with a pointed reminder that I was there outside of posted visiting hours [and I'm going to continue to do so if this is the kind of care she's getting]. I hovered outside the door and I could hear this harridan treating my poor mother like some simpleton. The more hectoring she got, the more stressed Mum got. When I eventually got back in Mum was really upset. Apparently she'd not managed to pour the proper dose of a liquid laxative which she had never had prior to her hospital stay. This nasty creature had just shoved a list of her medications under her nose and wanted her to say which medication she took next and Mum had really struggled under pressure. After this nurse had gone Mum said she was upset that she had 'got it wrong'. She'd been so upbeat about her progress but when I left she was really down and despondent.

They see the word 'dementia' on the record and seem to think it doesn't matter how they speak to them.

I hate to do it but I can't see any option but to make a formal complaint.
Not exactly the same thing but I've had similar experiences with my son. Strangers see his disability and ignore my child. My child does not have a learning disability, please don't exclude him from sensible decision making. Doctors who know very little about spina bifida also have blatantly lied to me about his prognosis and life expectancy. The other day when we were at the hospital with Logan, a nurse came in at two am and I told her his temperature was fine but she didn't listen. This is why I refuse to use a care provider because I want him involved in making his own decisions no matter how silly or unwise they are. If he makes a bad choice, he will be punished like a non disabled child.
Can you complain about the asshole or not?
Sorry it's taken me a while to get back - one damn thing after another.


I did complain about this lady and things did seem to improve. It's surely not too much to ask is it, simple human dignity?
Its not the condition its people and their stereotypes.

What Melly said, I've disclosed having a dx of aspergers along with my other health issues when dealing with DVLA and then only because I didn't want to chance getting fined/possibly losing my license because its a useful form of ID even if I'm not currently on the road.

The only other occasion was my last partner but she more or less had it all figured out before the Dx came along anyhow. That feels like a lifetime ago.

Peoples view on those with ASD (independent or not) and mental health in general when they think its "safe" to talk about it is absolutely disgusting. Health/social professionals hold some of the worst opinions on those with problems.. the amount of power they yield is also why the likes of me are actually afraid to disclose around them.

They basically no longer see you as a person with an opinion and will start dictating their own to you.

Its like the people you expect to be the most understanding about things actually turn out to be the biggest so and so's, for lack of not wanting to sour this board with another word that springs to mind.

I've seen the way people talk to caree's too and politely explained they can talk normally around them, if I have to ask more than a couple times caree will actually roar at them to make them aware they DO know they are being talked about (people with LD have feelings too!) which actually breaks my heart a little

Same story with dementia people seem to just assume everybody with it is severely affected when in reality it might not had barely began to take hold apart from a couple minor symptoms (occasional memory loss etc) but then that person themselves is able to stick up for themselves and tell whoever it is to show a bit more respect.

Side note - when you see people being written off before they've even had the opportunity to try, remember the likes of Kim Peek, written off as a child by so called experts as being unlikely to ever be able to walk, talk, lead a normal life etc.. today recognized as having one of the most factual memories in the world, he can absorb over 98% of everything he reads