Family with disabilties

[Purple_Monkey]

How does one deal with the guilt of wanting more from life but restricted due to being a carer?

For context, both teenage children have recently been diagnosed with autism and adhd. Husband of 20 years disabled from a fall about 5 years ago, as well as recently diagnosed with autism and adhd. 

I am carer for all of them. I am the kid’s ‘safe’ person, they want me to take them to all the appointments etc, they come to me with their troubles. Husband doesn’t have much of a relationship with them. He can’t connect with on their level and ends up lashing out at them for having different beliefs and values as him. 

Husband was a tradie, the main breadwinner, the man of the house, the protector. He slipped in a shopping centre one day. His injuries meant he could no longer work as a tradie. His health has declined to the point that he can no longer work in any capacity, gets around with a walking stick, in constant pain, always medicated on strong pain killers, low mood. 

As a result of the constant arguing between him and the kids, him lashing out from the pain and being frustrated not being able to contribute anything, our marriage is suffering. All relationships are suffering. 

I work full time. I want to drop back my hours to enable me to look after everybody, take them to appointments etc but as I am now the breadwinner, and Centrelink say I earn too much, we are living off my wage, so I can’t drop back my hours.  They don’t take into account how much specialist appointments or medicines cost. The kids are having issues with schooling. I’d love to home school them. I’d also love to study, but this costs $ and requires time off work. 

I had dreams of travel (I’m 40). My dream holiday of bushwalks with the husband has gone, he can barely walk. I feel so ripped off that my life is gone because of them but then I feel guilty because they cannot help having their disabilities, and it’s my responsibility to care for them. I’m tired of sacrificing everything for no thanks, I want to run away but then the guilt comes back. 

How do I get over this guilt?

[indigo22]

Hi Purple_Monkey,

Welcome and thank you for reaching out to us.

You certainly have your hands full, it is no surprise that your circumstances are getting you down. It is hard to deal with a life that turned out differently to what you imagined it would be, and I think it is quite normal that some resentment creeps in when you don't feel appreciated.

I was carer for my mother in the last years of her life and she was not easy to please so I had many days when I just wanted to leave and get on with my life. What made me stay was the moral standards I hold myself to and perhaps this is the same for you.

There is a website you may not be aware of that operates for people on the spectrum, Amaze. it may be worth having a look at and call them 1300 308 699 to get some advice on services you may not currently be aware of.

It may also be worthwhile looking into becoming a full time carer for your family through Centrelink. It would mean that you would be on a carer payment and would be able to do things you mentioned, like home schooling and appointments, but you might also be able to pick a few hours of part time work (perhaps even working from home) to supplement the income. When you are a carer, you also have access to respites every few weeks and other services to help you manage.

It sounds like you are running yourself ragged at present and there is only so long you can keep that up, even though you are still relatively young. There are ways you can care for them and, at the same time, care for yourself. It's like when you go on an aircraft, they tell you to put your mask on first so you are able to help others, it is so important to look after yourself as well.

I hope this helps and please feel free to continue the conversation if you wish.

Be kind to yourself,

indigo