I am 62 years old and am my son's carer, need advice — Scope | Disability forum
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I am 62 years old and am my son's carer, need advice

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Cutter123
Cutter123 Community member Posts: 6 Listener
edited October 2021 in Autism and neurodiversity
This discussion was created from comments split from: Hi, my name is Cutter123!.

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  • Cutter123
    Cutter123 Community member Posts: 6 Listener
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    I am 62yrs old and am a carer for my youngest son who is 33yrs old and has moderate learning disability.

    I have just increased my hours as a community nurse to 4 days.

    If I do not work our income would be low.

    My husband is disabled too and had to retire early that said he is 72 yrs old now.

    My son only really communicates with me.

    However he listens to a controversial man called David Icke who talks doom and gloom and I can't stop him listening to him as he says it is his life.

    I go out walking with my son when I get home also take him shopping.

    He goes to the gym on his own which is within walking distance.

    Recently he was assessed by 2 psychologists and deemed not to have financial capacity.

    A lady also wanted to visit from Brighter Futures but he would not see her.

    My concerns are 

    1.  He can become angry and shouts and swears which is difficult to cope with.

    2.  Here refuses to accept anyone else except me.

    3.  Should I feel guilty going to work?

    4.  I feel trapped and am on antidepressants.

    I love him but he has reduced emotional awareness owing to his disability.

  • Chris_Alumni
    Chris_Alumni Scope alumni Posts: 689 Pioneering
    edited August 2017
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    Hi @Cutter123, BethSlade or @Debbie_Scope may be able to offer you some advice. 
     
     

  • [Deleted User]
    [Deleted User] Posts: 126 Listener
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    Hi @Cutter123

    Firstly - yikes david ike!

    If someone in my family was into that kind of thing, I probably wouldn't try and force them to stop listening, as hard as it might be - they'd probably just feel quite alienated and withdraw from me.  I guess I'd try to engage them about their interests - but try to diversify the conversation, diluting with chat about other theorists, and contrasting viewpoints - and also moving on to other stuff entirely (gym? personal targets? famous athletes and other role models?), so that hopefully, in time, they came away with a feeling that there is 'life beyond' etc.    But that's just what I would do... it may be entirely the wrong approach :S

    The communication thing is worrying.  It's an enormous pressure; for one person to be someone's entire support network; and I can see why you feel trapped.  Essentially, by rejecting others and putting you in the position where you're the only one who can support him, your son is able to keep himself at the top of your priorities list.  He might not mean to - but this is kind of a type of control, and it sounds like it's in everyone's interests to break some of these patterns.

    The angry shouting and swearing stuff is also not great.  What are his triggers?  
    I wonder whether the Challenging Behaviour Foundation may have some resources that could help you with this.  

     My biggest point is that NO, you should DEFINITELY NOT feel guilty about going to work!!  Your life is your own; it's unrealistic (not to mention unkind) for anyone (your son or other people) to expect you to put your entire life on hold.   Yep, he's got some additional needs and it's likely that he'll need support from other people; but that isn't something you have to take on.  He is a grown-up now, after all.  Also, (as uncomfortable as it is to talk about)- you won't always be here.... ....The sooner he can establish some relationships outside of the mother-son dynamic, and become comfortable engaging with others, the easier it will be for him in the future.   And, the more fulfilled you are in the rest of your life (work, play, marriage, friends, finances, etc), the better source of support you can be to your son anyway.  

    Which brings me onto your fourth point; being on antidepressants.  Your doctor is obviously noticing the strain (you don't get prescribed them without good cause) so it's clear that this situation is having a serious effect on your mental health.  (you don't mention your physical health, but it's one of the first things to suffer when stress and pressure is placed on carers).  In addition to any support offered by your GP, have you considered maybe hooking up with a carer / parents support group?  

    There is lots of support out there - try approaching the adult social services team.  Explain that you're a carer to a disabled adult (and also if you're caring for your husband, mention this too) and need a carer needs assessment - some great info on this on the Carers UK website.  

    Gotta dash, but keep your chin up.  Things will improve.

    -B x
     
     

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