Friday, January 18, 2013

The Caregiving Dance of Bil

Another family conversation with my mother in progress.

Something that worries me is that she is increasingly depending on Bil as a "built in" caregiver.  I applaud that she wants Bil to have an increased role in doing things but it isn't anything that is building skills.

She no longer drives, she is telling us, without Bil in the car.  This indicates to me that perhaps we should be thinking about whether she should be driving at all.  The main help he is giving her (if she is telling the truth) is to help her in and out of the car.

At home, she is having Bil fetch stuff for her but just using him as a go-fer isn't teaching him any self help skills, and only helping her a little.  A finger in the dike of her need.

Should Bil try to learn to cook?  No. (he is "too scared").

Should Bil try to run a vacumn cleaner?  No.

Should Bil take wash out of the dryer and bring it upstairs? No.

I realize that people with autism need a lot of repetition to learn skills.  But we aren't there to try to help him learn, the state has removed the waiver that would have provided him with possible help in learning these (a catch-22 situation I've blogged about before - they couldn't find a provider for him, so therefore "he never used the service", so he lost the service) and I am sure she is too much in pain and too much in need to attempt it any more.  Maybe if she had 10 years ago, but she never did.

She needs a lot more help than what Bil can.
And Bil's world continues to shrink as she finds it more difficult to drive, and take him on the shopping trips he loves.

We really need to be there.  Or they need to be with us.

She refuses, again, the possibility of moving up here.

More this weekend.

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