A Fellow Sib Speaks Out

It can be very hard to be the sibling of someone with a disability.  Many times, the parent must spend a lot of time with the "special needs" child, and the sibling(s) without disability can be neglected emotionally or even physically.

This doesn't get blogged about often but I was struck by a recent blog post.  What happens when one sibling has a disability, one doesn't, and the sibs are twins?

This isn't the case with Bil and his sibs.  They are either a few years older or a few years younger.

But, I loved that post, and I highly recommend the blog the blogger of that post writes about Down Syndrome issues.

The Prodigal Blogger

Well, I returned.  Like the Prodigal Blogger I've shown up, three months after my last post.

You can't say I didn't warn you.  I did tell you I might never blog again.  And I almost never did.  But today, something hit me.

I decided, I really do want to make something of this blog.  I had even thought of using this blog to blog a book about my circumstances, but I've changed my mind about that.

Too much whining in some past posts, for one thing.  I did some venting in the past, which is OK if you are just writing for your own benefit, but not OK if you want other people to take you seriously.

People have blogged books, yes indeed, and some have become best sellers or even movies. (Rember Jul.  But books as vehicles of change, which is something I would like to address with my situation?  No.

For example, this blog post tells us that a lot of books don't even sell 300 copies a year.

Not much chance of change with a big 300 readers.

But, if you are dedicated, it is not much effort to reach 300 readers of a blog by following the advice of serious bloggers/authors such as Nina Amir. I'm not sure how long it would take for me to study her advice and put it into action. I would certainly have to give people the content they deserve, for the precious time out of their lives they would give my blog.

So, right now, I am in the thinking stage, even as we are trying to accomplish some exciting things in Bil's life. I'd love to vent and complain about the "latest and greatest" in Bil's life but I am not going to do it. Here, anyway.

Not any more.


So, what I have written here is a bunch of brave words. 

Now, to see if I can back them up.  I could try to blog a book in 30 days. 

Because of other things in my life that demand commitments, I won't be commitment free until December.  So maybe - let's say two months, or three?

Shall we see?

May Be a While

It's been three months since my last post, and a lot has happened.

So much that I haven't had time to blog about it.

In a way, we have gotten nowhere.  But in another way, we are progressing.  I guess that's how life always is.

I honestly don't know when I will be posting again.   I really don't know where I want to go with this blog.  So, if I don't post again- goodbye and thank you for your interest.

And if I do - you will certainly be the first to know.

Call Back Roulette

The wonderful world of advocacy and customer service!  Don't you love it!

My husband and I both, and a third party helping us, been having a frustrating week with customer service.  The latest is my mother in law's alarm system.  Before that, an online purchase.  Before that.....

Sigh.

Alarm system, bounced back and forth, voicemail menu doesn't give me the option I need, I finally reach what I think is the correct extension, am put on hold for over 5 minutes and then told to leave a message.  No option to continue to hold.  I would have; I'm doing plenty of other items anyway but now I have to hang around for a call back. If there is an emergency at my mother in law's house, will they give the same customer service????

I'm also waiting on something that Bil's medicaid service coordinator is supposed to be sending, and I haven't received yet.  Maybe it's just late in the mail.

Calls to my mother in law's lawyer re a paper he drew up for her.  No call backs. Guess who is not going to get our business in the future.  A lawyer who can't return a phone call is scary, because legal work is full of deadlines.  Will he meet any deadlines needed?  My mother in law is of the age where she can't make call after call after call. At least if his office can't speak to us, could they tell us what we need to do so they can?

Frustration.

When No is Not No

We are having some success, thanks to help we have gotten from an unexpected source, in perhaps getting some movement from the agency that handles Bil's Medicaid Service Coordination.

What I was unable to do, this person (who has cost us money, but has been worth it) has been able to - well, at least get their attention.

We are waiting to hear back.

The aim is to get Bil training to increase his independence, and, indirectly, allow him to be of more assistance to his Mom.  His Mom needs a lot of help around the house now, and Bil is definitely in the role of caregiver to his elderly Mom.

You would think this would help the taxpayer.  But until now, I've just received excuses.  What they will do is ask Bil, 'do you want to...." and of course he says no. He, after all, has autism.  He is anxious about any change in his routine.  He needs to be coaxed, and then he is OK.

But, so much easier to take his automatic no as a "no", because then they don't have to bother, don't have to give the service.

Well, this paid person has probably done about all she can do.  Isn't it sad that we had to spend money to get what Bil is entitled to?  Yes, entitled to!  He is a taxpayer.  He works for a living.  It doesn't matter that it is at a sheltered workshop.

He should be a valued member of our community, but that isn't the fate of most people with disabilities.

So much easier to take their "no" as a no, and not give them the opportunity to be more independent.

So much progress still needed - but it's a start.

Bil at the Gym

Bil went to a health club last week!

Well, he didn't do much of anything there.  But the fact that he was there was encouraging because of the reason he was there.

His mother took an exercise class - water walking.  She finally (a great victory) allowed herself to be talked into going to a health club. She has a one month trial membership. She had resisted this for years, as her physical condition deteriorated.

Bil's mother is at the point now where she doesn't want to drive by herself.  So, Bil came in the car with her.  I'm not sure what he did for the time she was there but they do have a little cafe there.

I wish so much we could get Bil into that pool, but I somehow don't think that is ever going to happen - unless his mother talks him into going with her.  And I am not sure the club will allow that unless he buys a membership.

The memberships aren't cheap either, sadly.

Right now, our focus is on Bil's Mom.  If she doesn't want to fall again, she must work on her balance. She must use a walker too, but that's another story.

Right now, every time we see Bil, he seems to have gained more weight.  I think he would at least walk in the mall if accompanied by someone.  But his Mom can no longer mall walk and we live hours away.

Right now, we'll just have to put these concerns aside and see what happens with his Mom.  There's only so much we can do at one time.

Bil Speaks for Himself

It was something to see.

I would almost call it a miracle.

Bil knew that someone was coming to my mother in law's house to access her physical condition.  Normally, if a stranger had come to the house, he would have hid in his room.

Not this time.

Bill sat on a chair, near the recliner my mother in law uses, as the person interviewed my mother in law.

At one point she denied having fallen for almost a year, and Bil immediately corrected her, listing times she had fallen, and one time she had tripped.  He named dates and places.

He left at one point, but came back a few minutes later.

He stayed there for almost the entire time.

My theory is, he is deeply concerned for his mother in law, and sensed this person was there to help.  He still wasn't able to articulate his thoughts, but the fact that he stayed, and the fact that he wouldn't let his mother lie, I think spoke for herself.

Good for him.

If only we could wave a magic wand and give him typical abilities to interact with people.  What might we see?

But last week, Bil spoke for himself.  And I was so proud.

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.