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39 next month: will I EVER be able to escape from my family? - Page 6 - Carers UK Forum

39 next month: will I EVER be able to escape from my family?

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75 posts
Don't know how bad my dad's cancer is (he hasn't had the biopsy yet) but at least the lack of obvious symptoms (it was picked up by chance during a CT scan for something else) are a good sign...

My mam is getting really worried though (as if she doesn't have enough to worry about in her life) that if my dad doesn't recover it won't just mean the family taking a dire financial hit, but also that she alone won't be enough to care for my sister (even if my sister will be getting three days at the NEAS centre instead of two, which we hope to be getting from next month onwards). On days that my sister's at home my mam is effectively barred in the house (because if she tried to go out -- even just to go for a walk as I suggested to her recently -- my sister would be screaming at her "don't leave me! don't leave me!"). In fact it was something of a struggle for my mam to get my sister to be OK with her going out with me on Saturday to do the grocery shopping!

Haven't registered for a parkrun yet as I want to stay under cover at least until I've finished the Couch to 5K. As a schoolkid I was pretty much the worst in the class at PE, and I'm uneasy as to how my mam would react if she thought I was doing something as apparently out of character as running...
George, the future of your sister is now a huge issue.
Mum has a tough journey ahead of her, now is the time to find somewhere that can care for your sister.


Is dad currently working? (you mention a huge financial hit). Does your family own, or rent the house? Mortgage?
The financial hit is a reference to my dad's pension, as he hasn't worked for many years now. We live in social housing by the way.

It seems to me that my mam is so terrified of my sister being institutionalized (no doubt because of all the horror stories about abuse, including the recent Panorama episode about Whorlton Hall Hospital, in the same county where we live incidentally) that she's willing to destroy not only her own life* but mine as well, to prevent this from happening!

* I felt terrible on the 19th as it was my mam's 60th birthday but I couldn't buy her a present: she won't accept money (in fact when I do little things for her like driving her to the shops, she usually forces money on me), the DVD box sets she'd like were all months away from release, and what else can you buy someone who's basically barred in the house most of the time, and who has little interest in material goods anyway as they so often get damaged by my dad's carelessness?
Took my dad for his biopsy this morning -- hope I'll be bringing him home tonight so I don't have to do another 50+ mile round trip on Saturday. I was also talking with my mam the other night and she told me that it was very shortly after I was diagnosed with Asperger's that she began to suspect that my dad had it too (and more severely than myself) and it was just that his parents were too neglectful to notice it.

As an aside I finished with my Couch to 5k app two weeks ago today (I covered the distance in 26:58 -- not bad considering how useless I was at PE in school but still not in the same league as several of my work colleagues) but unfortunately it seems like I injured my left ankle in the process! Maybe once it gets better I need to find some exercises to improve my strength?

Bye for now...
Hi George, don't be too hard on your grandparents.

You may not realise that "Aspergers" is very new in terms of a diagnosis.
I remember a time when the first school in the country for autistic students was opened near where I worked.
Looking back, I'm sure my dad, one of the government's top scientists, also had many traits of Aspergers.
bowlingbun wrote:
Fri Jul 26, 2019 11:59 am
Hi George, don't be too hard on your grandparents.

You may not realise that "Aspergers" is very new in terms of a diagnosis.
My mam's point was that my dad's parents -- which I hardly ever saw, to the point that whenever I referred to my grandparents (when they were alive) it was assumed I meant my mam's parents -- didn't notice anything abnormal about my dad. She said herself that she knew something was abnormal about me even though she'd never heard the term "Asperger's" before.

Dunno if the issue was that my dad's parents were neglectful or that my mam was unusually suspicious-natured...
Don't know if anyone is still following this thread, but I took my dad back to hospital on Thursday and it looks like he has neuroendocrine tumours: at least the doctor claimed that the recovery rate for this type of cancer is good and that there are many treatment options available. He'll next be going to hospital on the 28th for another scan (using some kind of tracer fluid?) -- hope he can get hospital transport as I don't fancy taking yet another day off work to take him!

While I haven't been running for about a month now -- on my last run of Couch to 5k I must have injured my left ankle (don't understand how), and while that's better now I seem to have developed a cold. :( I've decided (especially given the wet weather we're having at the moment) to work my way through my unwatched VHS videos (watching them and then throwing them away, as it looks like even charity shops won't take them these days). Those VHS videos which contain stuff I do want are instead going to be replaced (if possible) with second-hand DVDs from the Amazon marketplace. ;) Once I've finished with the VHS (first priority both due to being obsolete and due to taking up more space than disc-based media), I'll then go onto the DVDs and PC games.

I'd already got rid of some unwanted clothes (many of them things that have gone too big since I lost some weight) and every bit of excess stuff I do get rid of will make it easier to move out when (if?) the day does come. I often wonder why my mam was so eager to buy me stuff (to the point that she's disappointed when I say I don't want anything) -- more charitably it's out of guilt at the way I'm living while less charitably it is to make it more logistically difficult for me to move out. Thoughts?

One last question: would people here agree with someone on another forum whom I discussed my situation with, who suggested that trying to get into the dating scene before moving out would (due to the amount of my time it would involve: it seemed like he was thinking in terms of online dating) be a bad idea?

Bye for now...
George_1902 wrote:
Sun Aug 11, 2019 8:21 am
Don't know if anyone is still following this thread, but I took my dad back to hospital on Thursday and it looks like he has neuroendocrine tumours: at least the doctor claimed that the recovery rate for this type of cancer is good and that there are many treatment options available. He'll next be going to hospital on the 28th for another scan (using some kind of tracer fluid?) -- hope he can get hospital transport as I don't fancy taking yet another day off work to take him!

While I haven't been running for about a month now -- on my last run of Couch to 5k I must have injured my left ankle (don't understand how), and while that's better now I seem to have developed a cold. :( I've decided (especially given the wet weather we're having at the moment) to work my way through my unwatched VHS videos (watching them and then throwing them away, as it looks like even charity shops won't take them these days). Those VHS videos which contain stuff I do want are instead going to be replaced (if possible) with second-hand DVDs from the Amazon marketplace. ;) Once I've finished with the VHS (first priority both due to being obsolete and due to taking up more space than disc-based media), I'll then go onto the DVDs and PC games.

I'd already got rid of some unwanted clothes (many of them things that have gone too big since I lost some weight) and every bit of excess stuff I do get rid of will make it easier to move out when (if?) the day does come. I often wonder why my mam was so eager to buy me stuff (to the point that she's disappointed when I say I don't want anything) -- more charitably it's out of guilt at the way I'm living while less charitably it is to make it more logistically difficult for me to move out. Thoughts?

One last question: would people here agree with someone on another forum whom I discussed my situation with, who suggested that trying to get into the dating scene before moving out would (due to the amount of my time it would involve: it seemed like he was thinking in terms of online dating) be a bad idea?

Bye for now...
Hi I just wanted to say I sympathise I might not contribute too often but I know only too well how you feel. Stick with the exercise those endorphins can be a blessing on a bad day. As for decluttering that will help too not that I'm that far along yet but I have found the eco friendly route to be accepted as an excuse for most things :)
StarFish_1502 wrote:
Thu Feb 14, 2019 10:43 am
Seriously, your mum will try anything, no matter how underhand, to keep you because she's frightened.
Does that include claiming to social workers that I'm incapable of looking after myself?

Last weekend I managed to find some documents in my mam's room from the last time my sister's status was reviewed (October 2018) -- don't know if they count as the Needs Assessment that some others on this thread have brought up, but they do describe my sister's limitations in detail, and also included the comment "parents also need to give ongoing support to their son who still lives with them".

Here's my copy of these documents (currently incomplete as I sneaked in with my phone to photograph them, and some of my photos were unfortunately too out of focus to be readable -- hope I can access them again on Saturday afternoon when my mam goes in the bath). In my typed-up version I refer to my sister as "S" so as not to reveal her or my real identity.

Hope some readers here will find this information useful!
George
I think the actual phrase was "provide support " or something similar. This is very different to saying up you are incapable of looking after yourself.

I provide support for my adult son who I know is capable of living independently , but part of that support includes letting him live here rent free while he saves up for a deposit. That is financial support.
I also support him by teaching him cooking and budgeting so that he is skilled when he does leave. I also help him cheer himself up when he is down building his self esteem

I say this to show that providing support can take many forms and doesn't demean or belittle the person being supported.

I suggest you read again what the report says about your sister and compare what areas in it you are capable of doing, and that will show the many areas in which you are capable and independent and do not need support
75 posts