Saturday, February 19, 2011

Should a Person with Autism be a Caretaker for His Elderly Mother?

Today's question has to do with the fact that our system for caring for the developmentally disabled, the way it is set up, requires parents into their 80's and even beyond (!) to continue to take care of their developmentally disabled children.

What happens, though, when the tables are turned, when the caretaker becomes the taken care of?

To my mother in law, raised in a time when people were expected to be independent, having Bil in her home was the natural thing.  It was unnatural, to her way of thinking, of having him live away from her - even if it was a good living situation.  Several years ago, (I believe I blogged about this earlier) Bil's name came up on the NY Cares list and he had an opportunity to go into supported housing, a situation his Medicaid Service Coordinator felt was a very suitable one for him.  But my mother in law would not let him go.

Now, after her fall, Bil found himself almost totally isolated.  Although he likes to be alone most of the time, it does not mean he wants to be a prisoner in his home.  He loves to get out, to be taken to the mall or Wal-Mart, where he can use his money and shop for little treats.  He also loves to eat out in restaurants.  I have a feeling he also observes a lot about his surroundings.  We may never know his thoughts or view of the world.

But getting back to my mother in law, when she fell and was unable to drive, he stayed home from work to take care of her, as best he could.  This is not to say there weren't relatives looking in (including her daughter, my sister in law, who lives about 20 minutes away but works full time), and her housekeeper continues to come in once a week.  But, there was no one around most of the time to take Bil on the jaunts he enjoyed.  If relatives were there, they were there to visit with his mother and do work around the house to make her life easier and safer.  And I think he felt the walls were closing in, from his behavior when we were there a couple of weeks ago.  We were barely in the door when he was demanding we take him out somewhere, which is not usual for him.  Unfortunately, we had to get various things done and weren't able to right then, although we did take him shopping with us the next morning when we did her weekly grocery shopping.

As for the eating out (which we did not do with him) he has arbitrarily come up with some kind of date "after which" his mother should be able to resume driving and eating out!  Gee, what happens if she can't meet his deadline?

The thing, though, is that no one should expect Bil to take care of his elderly mother.  Apart from the issues of someone with his disability doing this, I still have grave doubts that he would call 911 if she was unconscious.  She has a "I've fallen" bracelet (we changed it over from a necklace at the advise of a relative who had experience caretaking her own parents, now deceased) but she doesn't wear it consistently (for example, if Bil is in the house!).  Or, if he could communicate the problem (noting he is verbal, but can't carry on a conversation too well.)  More and more, I wonder about the balance between her independence and her increasing frail state.  Here we are, 150 miles from this, trying to keep in touch by phone, and hoping what my mother in law tells us is indeed the truth.  For example, she has hid knowledge of other falls from us until it was obvious she was injured, and she did that with her daughter, too.

My sister in law's job situation is not good, either, and I know she fears to take much time off. (something not uncommon in our country today).  But she does what she can.  She is a good person and a good daughter.

But Bil, I maintain, should not be a part of an 80 plus year old woman's safety net.

We continue to all hold our breaths.

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