I Refuse to Feel Guilty

I refuse to feel guilty because I do not intend to ever have Bil live with my husband and me.  For even one minute.

Aren't family members supposed to care for one another?

Yes, 100% yes.  But what is "care"?  And what is "best" for all parties?

My mother in law made the decision (in her mind) a long time ago, without consulting any of the parties involved, that Bil was going to live with one of his two brothers eventually.  Nothing was taken into consideration, including their feeling or the fact that both brothers are older than Bil.  And then what?  Her husband didn't make it much past 70.  Does Bil get passed down to the next generation?  Did she ever consider that one of the two spouses would end up caring for Bil in their own age and perhaps neither spouse would have the same family ties, or feelings of obligation?  Or that some of the parties involved in this transaction also have health issues, and may not be able to do this?

So what gave her the right to make this decision without consulting any of the parties to explain what she was asking for, why, and giving her children the chance to discuss with her?  No, it was just a given.

His name has come up on NY Cares, and she would not let him go, even with his Medicaid Service Coordinator begging her to change her mind.

We, and the other brother, have promised my mother in law that Bil will be cared for. We have not promised we will take him into our homes. 

Let's put it this way.  The way our system is set up, we will be caretakers forever if we let Bil into our homes.  It may be fine now, but maybe not fine in 10, 15 years, but we will not be permitted to give up the burden.

My parents both had chronic health problems.  They were both dead by the time I was in my 30's.  I had a lot of mixed feelings about being a caregiver (and that was my role) from around the age of 10.  I wanted to have the life of some of my teenaged friends (when I was a teen) and I can tell you that sometimes I resented the role that I had to play instead.  I guess sometimes the feelings pop out again at times like these.  The voice that says "oh no, not again".  I know one day I may be my husband's caretaker (or vice-versa) and I voluntarily took marriage vows binding me to that committment.

Guess what.  There was nothing in there about Bil.

Parents of children with special needs many times never consider their other children. There are valid reasons for it, such as the struggle to make it through each day, but it makes life hard for a lot of these siblings.  People not in that role can never quite understand the feelings that result.  I strongly suspect the other brother never had children for feelings related to his relationship to Bil.

I have been married to such a sibling for many, many years, and I know I don't understand completely.  I can't completely crawl into my husband's head.

My mother in law expected her other young children to help take the burden of a special needs child, even when they were in their preteens and teens, and couldn't understand why they went off with their friends instead of caring every minute for Bil.  Guess what?  THEY LOVE BIL BUT THEY WANTED THEIR OWN LIVES, TOO.

And, as adults nearing retirement age, we know we may have to be working way past retirement age just to make ends meet.  Are we never going to be entitled to our own lives?  Is feeling like we should not have to care for Bil into our 70's, 80's and maybe even beyond, selfish?

I don't think it is.

But my mother in law had years to think about it and years to talk to us about it.  Right now it has evolved, I think, into a "don't ask don't tell situation".

You know what?  I want to have an empty nest.  Selfish?  If so, so be it.

As for my spouse, what he says is he wants Bil to have a quality of life beyond him spending most of his waking hours in his room, listening to the radio. My husband thinks Bil sometimes feels trapped, based on some of his behavior after his mother became incapacitated last month.  It could be Bil wants to participate more in this world, but doesn't know quite how, and can't communicate his needs.  He also needs a bigger world, more independence.  He needs as much independence as he is capable of.  He needs to be able to "grow up".  He doesn't want to be a type of child forever.

I dread what is going to happen the day we get "that phone call".  I think it is going to be a sudden situation - one last fall.  Or another stroke.  And on that day,Bil's world will be rocked, and I don't mean that in a good way.  The foundations of his life will crumble.  He needs to be in the living situation he will be in after that day, before that happens.  And my mother in law stands in the way.

I wanted this to be a reasoned discussion of our feelings, and it has turned into a rant.

So be it.

More thoughts on Autism and Compassion

As I've blogged recently, Bil has found himself in a caretaking role for his mother while she recovers from an injury.  He does help if she directs him to, but the question I've wondered about lately is - how much compassion can a person with autism be expected to show?

This recent blog post by Donna Williams, a woman "down under" with autism, gives us an intriguing clue.  As does the fact that one of the links on her blog is to The Hunger Site, one of several related "click and give" websites.  I would dare say that Ms. Williams not only cares about the homeless, but has come up with some intriguing "outside the box" thinking regarding how everyday people can help them.

So what does this have to do with Bil?

Because Bil's autism causes him to have a lot of difficulty communicating with neurotypical (non-autistic) people, it can be so hard to judge how Bil thinks, and how he perceives the world.  Donna Williams provides a small window into that world, but so much about Bil remains a mystery, even as he tries to help his mother the best he can.  Or so we hope.  Does he feel trapped?  Does he understand her situation?  Is he scared?  Or is he oblivious, on many levels, to what is happening to his mother as she ages?

We will be down there again next month, to help out some more, and to observe.

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.

Good News For Now

My mother in law is getting better, slowly, but is getting better.  My brother in law and his wife are going down this weekend (otherwise, we would have) - weather permitting, that is.

Other relatives visited on Monday and reported that she is doing better, but is very anxious to get outside. She's been almost completely housebound since the accident.  And Bil has been too.  When we were there three weeks ago he was just about "climbing the walls".  He hadn't gone to work, and spent most of his time in his room listening to his radio or his TV.  For all that he likes to be isolated, it was even too much for him.

I planned to write about our visit, but somehow it never came to pass due to other things happening in my life right now. But I hope to resume more regular entries in this blog in the near future.

More on Parking for the Disabled

I did hear from the agency I wrote about in my last blog.  They do have the number of spaces required by law but recognize they need more, and perhaps should have some reserved for visitors.  They are going to "look into it". 

I did find out some other things in my email.  Now all we have to do is follow.  I've put this into my husband's court. 

In the meantime, I don't know if we will be able to arrange a good time for both us and them, so we can perhaps come down and have a meeting with Bil's medicaid service coordinator, to find out the truth about his situation, and how budget cuts will affect him. 

Meanwhile, my mother in law is faced with continuing to care for Bil as she gets more and more frail. Right now she still wants him there, to help him.  But can Bil truly be a caretaker, as she almost seems to expect from him in a way?  I will try to blog about that next time.

How does an Agency serving the Disabled Not have Parking for the Disabled?

Today's Quiz Question.

Here's the situation in brief.  Bil works part time in a sheltered workshop at the local ARC. (Many of the ARC chapters have changed their name, but Bil's has not.  So ARC it still is.)  Twice a year he receives a performance review.  My mother in law is asked to attend.  This last time she wasn't able to.

Why?  In short, because she requires "handicapped parking".

My mother in law is in her 80's.  She has difficulty in walking.  Until she fell a month ago, she could walk with the aid of a cane.  She has a handicapped parking permit.

The way she explained it to me when I visited last weekend (I still need to blog about that), the ARC has limited parking as it is.  She hates going there for that reason.  There really isn't much in the way of handicapped parking.  Especially in the winter weather, this makes visiting ARC on her son's behalf impossible.

Frankly, that stinks.

What may end up happening is that my husband and I will go down there. We both have to take at least one day off of work to do this.  And, drive 300 miles, at (however much that will cost, at current gas prices).  We don't mind as far as wanting to be involved in Bil's life.  But why can't they come to my mother in law (especially in light of her injuries from her recent fall) and do Bil's performance review at home?

I went to their website and found the email address for the Director of Service Coordination.  I am aware that Bil's Medicaid Service Coordinator has been ill, so I decided to go to her boss.  I met this manager several years ago.   I composed and sent an email very politely (I have experience in advocating from other life experiences, and I know the value of stating a case plainly and simply, and asking for the desired resolution).  I did this Sunday and today (Tuesday) still no answer.  Guess either husband I or will have to call her.

Isn't advocacy fun. (sometimes, NOT.)

My mother in law says she's never been a fighter.  She's wrong.  But this is one fight she should not have to fight alone.