Monday, October 13, 2014

A Place of Their Own?

I haven't blogged about "B", my brother in law with autism, for a while, but that doesn't mean my husband (his guardian) and I have forgotten him.  No, quite the contrary.

All his life, "B" has been cared for by his mother, as my regular blog readers know.   But time has marched on. He is in his 50's. She is in her 80's, with increasing physical issues.

Their lives have always been intertwined but one day, that will no longer be true.

A couple of years ago a relative, seeing them both sit on a park bench, remarked that they "looked like an old couple who had been together many years".

"B" lives in a split level house with his mother, some 150 miles from my spouse and I.  For much of that time, he has lived in a bedroom in a finished basement.  He has access to a TV set and his own bathroom.  He grew up in that house with his sibs. They left, he stayed with his parents.  Some 15 years ago, his father passed away.  Now, it is just he and his mother.

He depends on her, but increasingly, she depends on him.  And, as much as we would love my mother in law to live forever and be with "B" forever, we know that, one day, she will no longer be able to take care of "B".  And, I have a strong suspicion "B" knows this.  It is hard to communicate with him.

You have to ask the right questions.

I am not the greatest verbal communicator, either. 

Several years ago, my brother in law had an opportunity to move into a residence operated by the local ARC (an advocacy group for children and adults with developmental and intellectual disabilities).  He would have shared the residence with a number of other disabled individuals.  The residence has a good reputation in the community.  He would have a lot of opportunities to participate in various events, including going to ball games and shopping.  He would hopefully find activities he would enjoy.  Group homes are not a housing solution for all individuals in "B"'s situation, but it is an option.

As I've mentioned before, individuals with autism don't adapt well to change.  It is imperative that we find "B" a placement before something happens to my mother in law, to give him time to adjust.

My mother in law turned the placement down - twice.  These openings don't come too often.  Many openings come from - let's be blunt here - death of a resident.

It is difficult to find good housing situations for those with disabilities.  That is a fact, I suspect, everywhere in the United States.

We are investigating housing options up here, miles from where "B" and his mother live, for the future. My mother in law does not want "B" to live apart from her.  She wants him with her as long as possible.  This is her wish.  But, we are finding it difficult to find senior housing that has two bedrooms.  Usually, seniors move into one bedroom apartments.  There just aren't that many units available where we live - an area that is a lot cheaper than where they live.

(Seeing the lack of senior housing in this area makes us think twice about our future in this area, perhaps a post for another time).

My mother in law wants to age with grace with "B" at her side.

What does "B" want?  He wants to be with his brothers (there is another brother in our area besides my spouse).

He wants to be able to eat out.  He loves that activity. He loves to shop.

And he wants his own private room, and his own bathroom.  He wants quiet. He wants control over his life.  He wants his own dignity.

This much we know.

A guardian, incidentally, is not the boss over the person he or she is guardian of.  A guardian is supposed to be an advocate.  But we all know that you can't always get what you want, and "B" must learn this hard lesson, too.

Appropriate housing, once the time comes.  Appropriate, but "B" may not get everything he wants.

Wanting.  Having wishes granted.  If only it was that easy.

My spouse and I are finding out just how non-easy it is.

"To be continued".


  1. What a difficult situation. I'm sure your mother means well, but doesn't she realize how much more difficult and traumatizing it will be for B to have to deal with the loss of her and a change of living situation at the same time? I'm sure you've already talked to her and included her in the decisions. It would be nice if she could get on board.

    1. Yes, she is involved. It's just a tough situation all around.

  2. That sounds so sad. A mother wanting her son near her and you are trying to get him prepared for life without her. What a tough situation to be in. Hope that you are able to resolve to and bring happiness to both parties.

    1. I don't know how this will end. We can only hope for the best.

  3. Wow, how sad. I know here in Canada it isn't easy either. I really hope there is a way to make both of the wishes workable.

  4. That's a very tricky situation, and doubly so because you're having to juggle the health and needs of two individuals (it's hard enough just with an aging parent!). My first thought would be one of the living areas that has gradual transition housing - private apartments or villas that are close to medical facilities... and as health needs allow, then the transition to fuller care can be done from within the same location (so it's not as great a transition). If your mother has any masonic connections via spouse or a son, the Masonic Homes have lovely facilities throughout the US.

    Hoping you'll be able to find a gentle resolution...

  5. Very tricky indeed. My brother faces similar housing problems due to his intellectual disability (formerly known as mental retardation). My mom was lucky enough to find a program through the state that helps him find work and placed him with another guy around his age, with similar needs.

    His roommate is actually on the autism spectrum, and faces very similar functional problems. Obviously, the two have unique issues, but there are a startling amount of similarities. They live in New York, though, and for all its shortcomings seems to be one of the better states for disability rights.

    Anyway, I do wish you all the best. Hopefully, something will come up that will work for all involved.

  6. Aw, man. This is a hard situation that clearly weighs heavy on your heart. I'm not a religious girl but there is guidance I'm sure in this life. Ask for it. I hope the transitions come easily and smoothly. Bless your heart!

  7. You explain the situation so well. It seems to me that "B"'s mother is selfish in her wants. She must realize that when they depart, "B" will need established routine.
    My husband thinks he'll die soon although we have no assurance of that. But, he's written lists and is constantly telling me what I must do when he's no longer around. That's responsibility taken to love's maximum. Of course, I hope the inevitable doesn't happen for many years yet. But we all die and it's best to be prepared.

  8. I love your posts, Alana.
    They're always so well written!
    This is such a tricky situation. x

  9. Such a challenging situation to be in Alana and to be caught in the middle of it: I certainly do not envy you. I hope you are able to find a resolution, some sort of a compromise hopefully somehow. In Canada, the housing situation isn't all that great either with more housing required for various populations; however, I would suggest you call 2-1-1, the closest to your brother- and mother-in-law and/or you and explain the situation. They might be able to offer some ideas/options/suggestions hopefully? ;) <3


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