Being a carer yourself with ASD

Has anyone here had to be a carer for a relative?

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  • I cared for my mother full-time during the last six months of her life. She finally passed away in April this year.  It meant giving up my job and moving in temporarily with her.  It was something that I couldn't not do, because she meant so much to me.  Throughout my life, she was my closest-living human being.  She never judged me.  She loved me unconditionally.  And she understood me at a level that no one else has come close to doing.  Because she gave me so much, I was glad to give so much back in return.  Yes, it was very difficult and demanding.  But in another way, I think it helped me to cope after she passed away.  I began my grieving the day I took over the caring role, because I knew she wouldn't recover from her illness.  I watched her deteriorate day by day.  Slowly, during that time, I was reconciling myself to the inevitable.  And the knowledge that I was there for her helped me, too.  I gave her the best care I could.  And she passed away as she had always wished to do - in her own home.  I was with her the night she passed.  I witnessed her final breath.

    I got through the following few months on a kind of emotional autopilot - sorting her things, disposing of stuff, dealing with all the usual business that comes with such events.  Then I began to write a book about the experience.  I finished it a month ago, after a sustained effort over three months.  It's resting now, but I'll come back to it soon and begin the task of editing - and of reliving that most important time of my life.  I started a new job in September.  My life is carrying on.

    My brother and I are getting together to scatter her ashes on Tuedsay 21st November - her birthday.  That'll be challenging.  But I feel up to it.

    Difficult though it was - and it took a huge toll on me - I wouldn't have changed a single second of that time.

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