One Day at a Time (Again and Again)

The case manager we hired for my mother in law is making good progress with my mother in law's situation and getting certain things set up.

But, no progress with Bil's situation.

She knows people at the non profit where Bl receives services. She is concerned that they don't try to work with him, that they let him say "no" to help, and don't gently try to coax him into at least trying. Try it, you'll like it.

 But so far her calls aren't answered.

I can't say I am surprised. 

As long as we make progress with my mother in law, I am happy.

But I hope we can progress with Bil, too.

Light still shines from the end of the tunnel.

The Miracle of Communication

We got tired of trying to interact with all the government agencies that are supposed to be helping Bil and my mother in law.

We hired a geriatric case manager.  It wasn't cheap, but it was worth it. She assessed my mother in law yesterday, with Bil present. (I will write more about Bil's behavior during that assessment this weekend.)

My mother in law made excuses.  I can't do this because....I don't want to try, because....but this person had a comeback for every one (some funny, some compassionate) and she did this in such a way that my mother in law immediately bonded with her.

It's all in knowing how to communicate.  This woman could communicate with my mother in law in a way that none of us know how.  We need to learn this skill.

The arguments she uses with us didn't work with this skilled woman, who has been doing this type of work for years. 

The assessment is:  my mother nedsto move.  She needs to regain whatever strength she can.  She needs to socialize more.  There will be ways to do both at the same time.

I think we are going to FINALLY start to make some progress, all because of a skilled communicator.

And, as a plus, she is going to help with Bil's situation.  Not just my mother in law's.  She is going to make some phone calls.

I hope they get returned.

The Caregiving Dance of Bil

Another family conversation with my mother in law...no progress.

Something that worries me is that she is increasingly depending on Bil as a "built in" caregiver.  I applaud that she wants Bil to have an increased role in doing things but it isn't anything that is building skills.

She no longer drives, she is telling us, without Bil in the car.  This indicates to me that perhaps we should be thinking about whether she should be driving at all.  The main help he is giving her (if she is telling the truth) is to help her in and out of the car.

At home, she is having Bil fetch stuff for her but just using him as a go-fer isn't teaching him any self help skills, and only helping her a little.  A finger in the dike of her need.

Should Bil try to learn to cook?  No. (he is "too scared").

Should Bil try to run a vacumn cleaner?  No.

Should Bil take wash out of the dryer and bring it upstairs? No.

I realize that people with autism need a lot of repetition to learn skills.  But we aren't there to try to help him learn, the state has removed the waiver that would have provided him with possible help in learning these (a catch-22 situation I've blogged about before - they couldn't find a provider for him, so therefore "he never used the service", so he lost the service) and I am sure she is too much in pain and too much in need to attempt it any more.  Maybe if she had 10 years ago, but she never did.

She needs a lot more help than what Bil can.
And Bil's world continues to shrink as she finds it more difficult to drive, and take him on the shopping trips he loves.

We really need to be there.  Or they need to be with us.

She refuses, again, the possibility of moving up here.

More this weekend.

Go Time

My research is organized.  It is go time.

We have several sets of issues:  a recap may be helpful.

1. Bil, a man in his 50's with autism, has been cared for by his mother for all his life.  But his mother is in her 80's, has fallen several times, and struggles with issues that may have been caused by a small stroke several years ago.

2.  She wants to have Bil with her. But this is making Bil's world shrink.  She is in tremendous pain now getting in and out of her car.   She just can't take him places.  And, she won't let go.  She already, when his number came up on a waiting list, refused to let him go into supported housing.  He was reluctant, but I think he would have done it if she had encouraged him.

3.  He wants to be around people in his own way, on his own terms.  And she can't be his transportation any more.  I have a feeling she won't be driving for that much longer.

4.  She is losing her hearing.

Thank heavens she still has her wits about her.

5.  She is scared of falling, scared of losing her independence.

6.  We know Bil cares, but he is who he is,and he can't express what he feels.  He cares for his Mom - but on what level, I truly don't know.

7.  Family members have been split on what to do about this situation, but I think, in the last two weeks, we have moved closer.  This process was actually started by another in law of Bil, not me, but it doesn't matter.  This isn't a game with us scoring points.

We meet today (without me).

I will recap what happens today when I can.

Sunday the 13th

We have had several phone calls and two in-person meetings with a couple of other family members in the past week.

Tomorrow (with out me) some phone calls are going to be made.  I hope they can make contact with the people we need to speak to.  I have to work, and can not get off with that short notice to be there.

Money is going to be involved, but we are going to try to minimize how much we have to spend.

We are going to arrrange for an assessment of my mother in law, both herphysical, and her mental, state.  And we are going to have to face the possibility that she may not be able to stay in her home.

I also know one day I will be old, and someone will have to do this for me.  It gives me chills.

We had thought about moving my mother in law and Bil up here, where we and the other family members live, but realize this is going to be traumatic for everyone involved.  This may have to be a last resort.  But first, we need a road map.

So we are going to seek some professional guidance.  It's too much trying to contact agencies here and where Bil lives, too much to get our heads around.   Or do the hours of research I've done.

I've looked at research I've done through the years. I guess the time had to be right, as far as everyone realizing the time was right.

In some cultures, 13 is a lucky number.  Let's hope.

Finally Finally Finally

Finally we are moving.  We have gotten a couple of other family members together, concerned about some recent events in my mother in law's life demonstrating deteriorating physical issues, and we are finally moving concerning both my mother in law and Bil.

Meeting tomorrow.  Will post more this weekend.

We still have a long way to go, and we may make mistakes, but we are finally moving on this.

I hope we can juggle the dual issues of my mother in law's needs, and Bil's needs, to the benefit of all.

Bil's Mental State?

I think Bil is depressed.

I think he wants to be out and about in public.  He wants only limited contact with people, on his terms, but he wants that contact.

He needs that contact.

I can not believe that, after Hurricane Sandy, that my elderly mother in law returned, from a safe place we had arranged for her, to her house (which wasn't damaged, but didn't have power.)  She was intending to stay there, in the dark, perhaps for days. A number of family members begged her not to do this.

She wouldn't listen to any of us.

And, of course, Bil went right along with this. What choice did he have?

Fortunately, after several hours in her dark and cold house, she saw reason, and children of one of her friends whose power had been restored, came and got them both.  


We have to give Bil a chance to live a full life.  He isn't getting it with his mother any longer, not because she doesn't love him, but because life has become too much of a struggle for her.

What a stubborn old lady she is.  It's served her well but now is just hurting her.

AND BIL.

The Stuff is Finally Hitting the Fan

My mother in law's physical condition is deteriorating.  I don't think she is going to be able to continue to live alone/with Bil.

The time may be drawing close where we have to bring her, and Bil, up to where we live to spend the rest of their days.

I'll be writing more about this in the coming days.  This is going to be a complex process, and my mother in law hasn't bought into it.

It (needless to say) will be a huge change for Bil, too.

I'll blog about this more in the coming days.

Finally, this blog will truly get interesting.  I hope I have the time to update it.