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Sister - Carers UK Forum

Sister

For issues specific to caring for someone with learning disabilities
Hi all,

I didn't know where to post this one so I thought I would put it in this section. Please move if it's in the wrong bit.

So my sister is in her late 40's now, never married and still living with Mum. I am also at home - moved out once but was seemingly dragged back when Dad got cancer and then died and I have carried on my caring role ever since, 10+ years!

She's never been diagnosed with anything but I definitely think there is something wrong with her. How is it that the GP's / health professionals haven't noticed a thing over the last 4 decades or am I imagining things?
Quite easily, doctors have "tunnel vision". You go to them with a problem, they try and fix it. It took 3 visits to her doctor before he accepted there was something wrong with her - dementia.
My late husband's GP didn't notice anything when showing signs of dementia. Even when I wrote to him with concerns. He did a ridiculous memory test, and put it down to tiredness when hubby said it was 1980. Sadly hubby did have Vascular dementia.
OntheVerge,

What do you suspect is wrong with her?

Melly1
I know for a fact there are learning difficulties but I think it might be more than that. I'm not a medical professional so perhaps it's all normal.

She's always had to place both feet on each step when she is going down them.

She seems to think she is superior to everyone else. So if she is going to eat some gum or blow her nose, she will stand in the middle of the room and do like a mini performance. She has to give her opinion on everything even when it doesn't concern her.

She repeats everything about 5 times. If Mum asks her a simple question like what is the opposite of black, instead of saying white, it will take her about 10 sentences.

She constantly looks over her right shoulder, I mean constantly, it's very offputting. It frightens my nephews and niece and they avoid her and run into other rooms.

When she gets her benefit money, she goes to the corner shop and maxes out on crisps and sweets and biscuits and pop and then just munches on them all day and night, on top of all her meals. She's put on loads of weight and I worry there will be problems like diabetes etc in the future.

She has no concept of friends and enemies. She seems to think the whole world is her friend even when people have exploited her in the past. For example, if she goes to the shops and someone asks her for money, she will give them everything she has in her pocket or purse.

The list could go on and on. I don't really have anything to do with her. I indirectly care for her and a brother though. And yeah, maybe I am a ***** for not talking to them but I am sick and tired of carrying them all. I don't mind Mum, I feel I owe it to her but the siblings ....NO!

I try to get her and my brother involved in cooking and cleaning and day to day tasks but she has no interest. She must think I will carry on carrying her when Mum is no more but it's not going to happen!!!
Sounds to me like she may be on the autistic spectrum and the putting both feet down on the stairs sounds like my friend’s son who is dyspraxic. However, I am not medically qualified.

If you already know she has learning difficulties then why not speak to the Learning Disabilities nurse at her GP surgery. She may be entitled to more in the way of benefits and once lockdown finishes, maybe she could join some clubs or social events to give both her and your Mum something to look forward to.
Thanks Penny. I've just looked up dyspraxia and that's her to a tee. I'm surprised that her GP etc have never cottoned onto this or does one have to query it? She has always been like this: 2 feet on each step, walking like she is drunk and is about to fall over, walking into walls and doors etc. She was never put into special classes or school when she was younger either.

I must admit I do feel guilty now as I have called her names in the past and have done recently too. Trying to look after myself (on the verge of a meltdown!), Mum, and 2 siblings is too much. I can do the physical stuff like cooking and cleaning, appointments etc but having to do the emotional side is too much. I took her shopping the other week. She put her mask on so it covered her face and eyes and was then stumbling around. I lost my patience with her. Sorry, sometimes it just gets too much for me. There is no one to give me a hand so it really gets me down.

Also, in the long run, when Mum is no more, I am not running around after her and the other sibling. I think the others (siblings who have moved out) naturally think I will carry on carrying them but that's not going to happen. I have no idea what will happen to the 2 siblings I look after now. :woohoo: :woohoo: :woohoo:
How on earth do the teachers not do anything?!?!
You need to talk to the learning disability section of Social Services.
ontheverge wrote:
Wed Mar 31, 2021 9:44 pm
Thanks Penny. I've just looked up dyspraxia and that's her to a tee. I'm surprised that her GP etc have never cottoned onto this or does one have to query it? She has always been like this: 2 feet on each step, walking like she is drunk and is about to fall over, walking into walls and doors etc. She was never put into special classes or school when she was younger either.

I must admit I do feel guilty now as I have called her names in the past and have done recently too. Trying to look after myself (on the verge of a meltdown!), Mum, and 2 siblings is too much. I can do the physical stuff like cooking and cleaning, appointments etc but having to do the emotional side is too much. I took her shopping the other week. She put her mask on so it covered her face and eyes and was then stumbling around. I lost my patience with her. Sorry, sometimes it just gets too much for me. There is no one to give me a hand so it really gets me down.

Also, in the long run, when Mum is no more, I am not running around after her and the other sibling. I think the others (siblings who have moved out) naturally think I will carry on carrying them but that's not going to happen. I have no idea what will happen to the 2 siblings I look after now. :woohoo: :woohoo: :woohoo:
Glad I was a bit of help then! I know other people with dyspraxic children who have not been diagnosed until adulthood. In a lot of schools kids like this often get missed and teachers have often not heard of it either. Have you looked up whether there are any support groups in your area for people with dyspraxia?

I would definitely see her GP and get a proper diagnosis then you will know what you are both dealing with. Then when our lives hopefully get back to normal you may be able to get your sister to go to a day centre or group to get her mixing with other people. She may even be entitled to a Personal Budget where she could have a PA to take her shopping, swimming, bowling, whatever.
Thanks both.

BB - I know your son is not well, can I just ask exactly what is wrong with him? Is it similar to what my sister has? Sorry, I know you have mentioned it but I don't know exactly what his condition is. Ignore me if I am being too nosey.

Also, I know you mentioned he is in some kind of supported accommodation. How did you access this? I am a social worker but it is in Housing for young people with general needs so I don't know what's available to her. I think long term my sister will need to move to somewhere where someone can look after her to an extent.

PENNY - Thanks for that. I will pass the information onto Mum and she can decide what to do. I'm not taking ownership of this. Sorry if I sound like a ***** but I don't need more on my plate. It probably sounds nasty of me but I've literally been carrying 3 to 4 people over the last 15 years and I am tired of it.

Oh and she loves mixing with people. She'll end up having a chin wag with anyone she can get her hands on. The thing is she can't read people. For example, when she is walking, people sometimes stare and poke fun but she will approach them and want to chat with them.

I have looked up a few groups and will do some research and pass onto Mum. The GP seems to think she has a problem with her sciatic nerve. But then I don't go to her appointments with her and I don't know what she speaks to them about.

If the 3 other siblings took some responsibility and helped out a bit, life would be a lot easier. But as BB says, some awful family are like helicopters, whizz in, dish out suggestions and then piss off.

Sorry for the rant, just tired of it all! Have a great Easter all.