Saturday, February 26, 2011

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.

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