Advice on being a caregiver — Scope | Disability forum
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Advice on being a caregiver

mynameisdan Member Posts: 1 Listener
edited April 2021 in Autism and neurodiversity

I'm looking for some advice, or to find someone in a similar situation

It's widely believed by my wife and several others that I have Aspergers to some degree. I will try and resist the temptation to go into all the symptoms, I'm sure by the very nature of this forum that people are more than aware. I work in IT which seems to suit me fine, in that I take pride in making systems work, and if I'm brutally honest, I care very little what people think of me in pursuit of that.

After I couldn't explain why I was the only person not crying at my grandfather's funeral, then my grandmother's and finally my own mother's funeral, we decided to look into it more formally, but I was (quite literally) laughed out of the GP office.

I have complete apathy for... well, anyone if I'm quite honest. Don't get me wrong, I'm polite and courteous when I need to be, but deep down, I have no real investment in anyone. I have little to no contact with the little family I have that's still alive, and that's never bothered me. 

The biggest and only exception to this, is my wife and two children. They are my world, I see them as an extension of myself. Whilst I still may need to be nudged every now and then to actually show that I care, I do feel it. Therein lies my problem.

My wife is sick.

In the last 6 years since our first was born, she's had to face severe post-natal depression to the point of hospitalisation, chronic fatigue to the point of needing to be carried from bedroom to bathroom, and pulmonary embolisms. Through all of these, I have given positive encouragement and have been able to support her in a calm logical way - I prepare all her medication, I do her daily injections, and I have done everything needed to support her overcome her CFS, and it's worked well. I think in a way, she's valued that I can approach it so methodically.

But now she has cancer. I am more than prepared to look after her (and the kids obviously) through her surgeries, through the radiotherapy and her chemotherapy. I'm too stubborn to entertain the idea that it could end badly. This time, supporting her is different though. She needs more emotional support than I can give. Sure, she rings some local support lines of an evening where her anxiety gets too bad to cope with, and I don't take it personally. She doesn't bear any resentment towards me for not doing more. But, oh how I wish I could. I tell her it will be fine. That I will look after her, that it will be ok in the end.

But it's an empty gesture. It's a stock answer with no empathy behind it. I can sympathise that at these early stages her emotions must be going through a blender. That is to say, I'm not surprised that they are, I can't really picture what that must be like.

Is there anyone else with Aspergers, or Aspergers tendencies that has needed to step up as a caregiver, but couldn't? Any advice?

Sorry for rambling.


  • janer1967
    janer1967 Member Posts: 16,329 Disability Gamechanger
    Hi there and welcome 

    I am sorry for what your wife and you are going through 

    I don't have aspergers but just wanted to reach out to you 

    Have a look at McMillan cancer charity they are there to offer support to the whole family even if your wife doesnt want the support you should also think of the support you need . You need to be well to help support her and your children 

    Hope other members can relate to your situation and offer help 

    There is also an aspergers society which could offer help 

    Take care we are all here to help and support 
  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,715 Disability Gamechanger
    @mynameisdan good afternoon happy Easter and a warm welcome to Scope, you really do seem to going through a tough time, I have a large extended family and have nothing to do with them, my choice, my immediate family are all I need. I'm really concerned that you were( "laughed out of the GP's office) that's not right, is there another GP at the practice you could see perhaps? I have no experience of Autism so i'm afraid I can't offer any advice on that one. As Jane rightly says It might be worth contacting McMillan for help and advice.
    Good luck
    Be extra nice to new members.
  • Tori_Scope
    Tori_Scope Posts: 9,540 Scope online community team
    Welcome to the community @mynameisdan :) 

    It sounds as though you're already doing a great deal to care for your wife, and that she's grateful for this. I'm sure that she's able to see that you care a lot about her, but I can understand that you'd be frustrated over not being able to give her the level of emotional support you feel she needs.

    I'd echo the above advice to get in touch with Macmillan. They're able to offer a range of support to those living with cancer, as well as their families, so they could be a good source of emotional support for both you and your wife.

    You mentioned that she gets anxious. Has she spoken to a GP about that? Could she perhaps benefit from some talking therapy, or anti-anxiety medication? Is this something she's mentioned being interested in?

    Have you spoken to her about what else she feels she needs from you, if anything? It could be the case that she has a couple of ideas on alternative ways you could show her that you care about her. It could also be the case that she's happy with the level of support you're providing to her at the moment. 

    I also share concern over the experience you had with your GP. I'm sorry that happened to you. I second the advice that it could be worth asking to speak to a different GP. You could also give the National Autistic Society a ring on 0808 800 4104. 

    I think you're doing a great job, so well done for taking so much on with such grace :) 
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