Tuesday, April 11, 2017

Independence #atozchallenge

All of us want to be independent.  For some of us, independence comes naturally.  For others, it can not be achieved without a lot of help and support.

My autistic brother in law Bil wants to be independent, or, at least, to live by himself once his mother is out of the picture.  The fact that he is autistic does not mean he can't be independent - many on the spectrum do live independent lives.  But others can't.  Overall, given his skills, abilities and personal challenges, people who work with him feel he won't get there without a lot of work and effort.

The question is - can he ever achieve that?

He's always lived with his mother (with his parents, before his father died) and has had his Mom to do things for him. To cook.  To clean.  To do laundry.  To transport him to the shopping outings he loves.

Two years ago, his Mom had surgery, then experienced complications and had to be hospitalized and in rehab for about five weeks.  Her driving days ended - her last drivng experience was right before the surgery.  It was an interesting time. During that time, we moved Bil and his Mom up here to be closer to family.

During Mom's hospitalization and rehab,  Bil did not want to temporarily come and live with us, or the other brother who lives in this area.  Instead, he wanted to stay in his apartment.

Quickly, we learned some things.

Garbage had been left the day of his mother's appointment (she went from that appointment right to the emergency room).   The day after the hospitalization, we walked into that apartment and almost passed out from the smell. We had forgotten about the garbage, and Bil was oblivious to the smell, or the fact that the garbage hadn't been taken out.   One of his jobs around the apartment, incidentally, is to take out the trash.  Without his Mom there to prompt him, he never did it.

That wasn't all.

We had to spend time encouraging Bil just to answer the phone.  We would visit daily but also would call from time to time to make sure he was OK. 

We had already known, in food shopping (because he loves to go to stores with us) that he has no clue about the prices of food.  If he wants blue cheese (one of his favorites) he will just pick some up, not even looking to see if it is the $10 lb type or the gourmet $50 a lb type.  This man who lives on Social Security disability has no clue how to budget, because no one ever taught him.

We are trying to get some of these skills developed in a program my husband was just able to get for him, called Community Hab, but he has to OK the skills being worked on and he said "no" to almost everything when they drew up his plan.

He doesn't understand the connection between the skills and his desire to keep living where he does when his mother finally can no longer take care of him.

Making him understand (we have to assume he can, unless he proves us otherwise) is our next challenge, in between working for a living and being caregivers for his mother.

"I" day on the Blogging from A to Z Challenge.


  1. Hi - Independence takes on a whole new meaning doesn't it - the way you've described it. I do hope you and Bil can get to grips with it - though it seems a task full of challenges - my thoughts to you all - cheers Hilary


    1. Lots of challenges, yes - and only time will tell how up to it we all are.

  2. This must be so hard. You're doing a good thing by sharing your experiences. Sending you best wishes for the challenges that lie ahead.

  3. How difficult for all of you. I wish you all the best. Thanks for sharing your experiences.

    Emily | My Life In Ecuador | Iguanas at our bedroom window

  4. I want to applaud you for not only addressing a difficult topic, but doing it so well with such frank discussion and sharing! Well done, and extremely insightful. I look forward to following your blog to see where things go from here.

    Visiting from the #AtoZChallenge - Tupeak Hope - Blogging about chronic health issues, patient self-advocacy & empowerment

    1. Thank you for your encouragement; it is so important to me. I hope I do not disappoint.


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