Parents, carers and disabled parents
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Guilt of being a disabled parent.

I have been struggling for 5 years now with degenerative disc disease. I had a second surgery in Feb but I’ll forever have chronic pain. 
Over the last year I had a few other medical issues which has resulted in me leaning on my teenage son more and more. I hate having to do so and have recently realised that I have become a burden and he has mentioned he won’t be able to leave home. Of course he will. Yes I have pain and ask him to help but ultimately I would have to adjust but how do I undo the damage of implanting that feeling into him? Any advice? 

Replies

  • newbornnewborn Member Posts: 682 Pioneering
    Really feel for you. And him. One idea may be to start training yourself now, for the day you will need to.  Others will advise on getting an assessment  of needs, but it will be complicated  because  you have to fight the assessment  thzt you don't  need help, because  family can do it.  

    You haven't  yet given it much thought or planning,  so he won't  be  convinced by what you say when you tell him "yes of course" he can see a future for himself other than just looking after you.  Credit to him that he has thought ahead and is willing to sacrifice  himself for his responsibilities.  And credit to you that you are adamant he will do no such thing!

    Either with or without the council,  you will need to start soon buying in some part time help for yourself. Maybe also there will be volunteers. There is a child carer organisation I believe,  which will have seen many  situations  like yours.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    What a tough situation you're in here @ld1986. That said, I think @newborn is onto something: putting steps in place to plan for that future will validate what you're saying, give you confidence in your own future and also prove to him that you'll be able to enjoy independence even without him.

    I think it's probably quite common to feel guilty and I'm sure nothing I say is going to convince you to feel otherwise. But while none of us would wish those responsibilities on our children, try to think positively about all the things he will have gained from the experience - empathy, patience, organisation to name a few. He sounds very strong-minded and I'm sure you're very proud!

    While you mention your son's a teenager, you don't say exactly how old he is, so it might be worth looking at Young Minds' page on young carers if you have any concerns over his mental wellbeing.
    Senior Community Partner
    Scope

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  • ld1986ld1986 Member Posts: 5 Listener
    @Adrian_Scope
    @newborn
    Thank you both for replying. Some really helpful points made. My son is 17, he has always been protective as I was a single mum for many years but he has become more so since my marriage hit a bad patch last year. I have also become anxious as I am not sure what my future looks like in regards to my marriage but I am trying to hide those feelings from him now. The idea of making a plan is fantastic, a visual to help us both see that I will be OK. Is there much help for someone like me? My ability to complete daily tasks is harder and a lot of tasks and social events are simply missed as I cant manage the pain but in comparison to a lot of people I am OK. I get the lower level PIP. Although since that was granted I have had another operation on my lumbar spine. I am definitely going to look into putting things into place. I already have grabbers, a higher car, bed, chair etc but rearranging the kitchen and checking out what I might be entitled too are things that I can do to plan ahead. I will also look into the Young Minds page as well. I just wish he would look at his future without worrying about me. Now I am mindful and will take the steps I need to feel confident that I will be OK without him. Thank you. 
  • janer1967janer1967 Member Posts: 9,142 Disability Gamechanger
    Hi @ld1986 Welcome to the community, I can totally empathise with you as I am in exactly the same situation.

    My son is 13 now and his dad left us when he was 10 and the same year I became disabled overnight. He has had a lot to deal with but he is such a caring positive teenager.

    He too says he will always live with me so he can help me but I try to not rely on him too much, he just does a few chores that I cant possibly do. However I do feel the gullet that I cant do things we did before and he is missing out on some life experiences and I tend to over compensate by treating him t what he wants (not the right thing I know).

    I totally agree with what others have said start to think now about how you can manage without him. I employ a gardener and a cleaner

    What my son has missed out on he has gained in learning to be compassionate, how to help others and it wont be long till he can be more independent and go places on his own or with friends.

    There is nothing to stop the guilt that is natural as a good parent, but remember you are doing a good job and your children will learn that from you
  • ld1986ld1986 Member Posts: 5 Listener
    @janer1967
    Hi. Thank you for your support. My goodness that must have taken some adjusting. How did you make peace with your disability? 
    I thought I had but after my operation in Feb I have taken an emotional step backwards.  It is hard isn’t it. I feel guilt for the experiences my son had to give up that we did just us. When he was about 10 I did a sky jump and promised him I would do one with him on his 18th but of course I can’t now. He said he won’t do it without me as it wouldn’t be right but of course I want him to.  He actually mentioned it earlier in the year and said I used to be fun. I knew exactly what he meant and he didn’t mean it a horrible way, just that my personally has changed as I used to be much more outgoing and fun. You are 100% right in that our children have learned good qualities by having to help us. 
    I am lucky that I live in a flat so I don’t have a garden or stairs but we are three floors up with no lift so I’m looking to buy a bungalow next year. I really want to show my son I will be ok, esp if my marriage fails 🥺
    I am going to take on board all of these messages and make a plan. Thanks again. 
  • janer1967janer1967 Member Posts: 9,142 Disability Gamechanger
    Your welcome always around for a chat .

    I moved to a bungalow and it certainly made life a lot better was a fresh start as well as better for daily living 

    Take care keep safe 
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