Friday, February 24, 2017

To Be At Peace #FridayReflections

Picture Prompt, courtesy of Everyday Gyaan
Oh, to be able to sit calmly on a rock, fishing pole in hand, and wait for a bite.

To not have to worry about you, brother in law "Bil". 

Bil, I wonder if you worry about your future.  Perhaps, to you, time is unending, stretching out forever.  You depend so much on routines.  They provide a security, a scaffolding for your life, in a world where a change in routine means chaos.  That calm is deceptive.  We know how anxious you are.

Anxiety goes hand in hand with autism, a developmental disability that prevents you from understanding much about human behavior.

But we, your family, we must worry about you.  We are not peaceful fishermen.  We are apprehensive, because we can see things coming.

I wish I could transport myself into that picture.  I can imagine the waves lapping against the rocks and the sound they make.  I can imagine the man with his mind clear of thoughts, waiting.

Waiting, always waiting.  Will a fish bite?  Will no fish mean he goes hungry?

It might be nice to suddenly pop into that picture, and shed the worries I have here in my own world.

But here's the thing, Bil.  Your life is going to change drastically.  It may change tomorrow, or next week, or next year.  But changes are coming.

You were on a housing list, and now the housing list has been discontinued.

The State may be changing the way you get services.

Your mother will not live forever.  She's taken care of you nearly every day of your life.  You assume that someone will always be there for you, don't you?

That's the plan.  But, stuff happens.   We know how things are changing so rapidly, here in the United States.  Programs vanish.  Funding vanishes.  People are fearful.

I know those are not your worries, Bil.  They are the worries of your guardian, your brother, my husband.  Your guardian who, chances are, will predecease you, because you are several years younger. And you are in better health than he is.

Ah, to disappear into that picture, and never reappear.

Linking to #FridayReflections.

Friday, February 17, 2017

The Cat Killed Him

I am scared about what will happen when my mother in law dies, and my brother in law, "Bil", faces life without his mother for the first time in his life.  "Bil", as my regular readers know, is developmentally disabled.

His mother in law has been there nearly every day of his over 55 years of life.  Except for several hospitalizations, and a couple of vacations away from her (during which he was cared for by other family members), she has been in his life daily.

His mother is her interpreter, the person who helps him understand the world.  She has cooked for him, cleaned for him, took him to family gatherings.  Until the last two years, she was his transportation, as Bil has never been able to learn to drive, and has never been taught to use public transportation.  She helped to order his life. Someone, once, observing them, mentioned they sat together like an old married couple.

It's a relationship we can understand intellectually, but not emotionally.
When his father died, he didn't seem to be affected that much.  In fact, his reaction was somewhat puzzling.

He blamed his father's death on the family cat.

He didn't try to harm the cat, no.  But he insisted that the cat had killed his father.  I think the cat also realized that he wasn't all that welcome.  Eventually, he went to live with a neighbor, one who owned a cat.  The neighbor welcomed the cat and fed him when he showed up.  One day, the family cat never returned, deciding he would rather live with the nieghbor.

To this day, we don't understand "Bil"'s  logic, and why Bil felt that the cat had killed his father.

But, we know, when his mother (who is nearly 90) passes, it will be different.

We do know his father in law didn't participate that much in his day to day care.  It was always his mother who took care of him.  His father was in the background.

We don't know how Bil will react.  Will he listen to us?  Will he show temper and refuse to be reasoned with?  It scares me.  The thought of my husband's death, or my death, doesn't scare me nearly as much.

What we do know is that the state will not let him stay in the apartment he shares with his mother.  And we are not sure how much he understands how much his life will change.

Can any of us truly understand what her death will mean to all of us?

We will have a meeting later this month with a social service agency, and learn more about his future, and what we can do to make sure that Bil's wishes are honored.

Today, I am blogging from a prompt "What scares you most about dying?" at Living My Imperfect Life.

Friday, February 10, 2017

Why Scare Myself?

Why am I trying to scare myself?

Today I am following a prompt on #FridayReflections:  “Do one thing every day that scares you” – Eleanor Roosevelt. Use this quote in your post or as an inspiration for one.

I grew up considering Eleanor Roosevelt, the wife of United States President Franklin Roosevelt, as one of my early childhood heroines.  In case you are not familiar with the U.S. Presidents, Franklin Roosevelt was the President from 1933 to his death in 1945.  From the time he was first in the public eye, he kept a secret - his legs did not work. In a time when the disabled faced major discrimination, he hid the fact that polio had taken his mobility.

Eleanor, of course, kept his secret.  But she accomplished so much more apart from her role as First Lady.  She was a writer, humanitarian, and diplomat. She had a newspaper column for many years.   She wrote many books, including her autobiography.  She grew up in a time where women were raised to stay silent, and refused to.

It's sobering to realize she didn't even have the right to vote for the first part of her life.

Meantime, I am about as introverted a person as a person can get.  I've rarely spoken out about my political views.  But now, in the present United States climate, I feel I must speak out.

I find myself starting to write somewhat political blog posts.  I have contacted the offices both my United States senators to voice concerns about treatment of the disabled (even doing it by email took courage for me). 

I am thinking of other ways to exit my shell.  It's hard.  But living in a country whose direction is changing to one that frightens me is also hard. 

Additionally, I am seriously thinking of joining the Blogging from A to Z Challenge, which will require 30 posts in 30 days, based on (in order) a letter of the alphabet.  April 1 - A.  And so forth.  I have never done daily posts on this blog and that challenge would really stretch me.  And, yes, scare me.

I even think I might I go all out and try to use these posts to blog a book. I'll be scared for even longer.

But it is necessary to do what scares me, if my brother in law "Bil" is to retain the quality of life he now enjoys.

A daily scare?  Not quite yet.  But, Eleanor, I'll give it serious thought.

Friday, February 3, 2017

Budget Cuts in a New Age

I am not a happy person today.

I had another post planned for today, but something on Facebook caught my eye.  "Katie Beckett waivers in danger" it read.  Although these programs are not called Katie Beckett waivers in New York State, where we live, they work much the same way.

A waiver called the Home and Community based waiver allows my brother in law, who is developmentally disabled, to live outside an institution, and to obtain services paid for by a program called Medicaid.  Without these programs, he would probably sit in his room all day and watch TV, unless my husband (who works) or his other brother, are available to take him places.

He lives with his mother, who is close to 90, and no longer drives.  Her mobility is limited, too. We don't know how much longer she will be able to take care of him.  (I need to add that she wants her disabled son living with him.  In many ways, he is her life).

Changes are coming for "Bil" and they are not good. 

Our new President reminds me of a practice that used to take place in World War II, in the days when radar was new.  Fighter pilots, if they knew they were being tracked, would release material (pieces of aluminum foil, I think) that would scatter the radar and the people tracking them would be totally confused.  Back in those days, they called it "tin foil".

This is what is happening now.  Our new President throws up lots of things into the air.  The media, and the citizens, don't know what to believe and what not to believe.

Yesterday, for instance, in a prayer breakfast, our President criticized the new host of the TV show he had to give up because he was President.  The new host isn't getting the same ratings as our President did.  Give him his due - Trump is a master showman.  But the new host is not a slouch, either - he used to be a governor of California.


Under the radar, my brother in law may be losing a waiver that allows him to get some benefits.  One of these is a day program I have blogged about before.  He has made great strides in this program.  Last month, we found out he might have made enough strides that he would no longer be eligible for the program.  The program director fought to keep him in the program, and succeeded, at least for now.  She was 100% certain that, without the supports of the program, my brother in law would quickly backslide.

He has been in this program a little over a year and the changes in his behavior are obvious..

Now, changes being proposed by Trump and his advisors are going to change the way the federal government helps to pay for Medicaid.  There will be a lot less money available.

And, oh yes. My mother in law voted for Trump.  ("Bil" did not.)

She thought, oh, the government would never do anything to hurt Bil.

How could she be so naive?

It's been a long time since I've ranted on this blog, but my feelings are pretty raw right now.  My husband and I had to fight just to get him on Medicaid.  My father in law had always brushed off our attempts to make sure Bil was taken care of, saying "everything is taken care of."  When he died, nearly 20 years ago, we found that wasn't the case at all.

Neither he nor his mother ever went to court to become official guardians of Bil.  So that fell to my husband, who is Bil's oldest sibling.

My mother in law's aging is the elephant in the room, an expression we like to use in the United States to talk about something obvious that no one wants to talk about.  The issue sits in the room while everyone pretends it doesn't exist.

From time to time, Bil becomes the elephant in the room, too.

And we are coming closer to the time when his Mom will no longer be able to care for him.  And we, we are getting older ourselves, as are Bil's two other siblings.  We are older than Bil.  We won't be around forever, either.

But with the Medicaid cuts we are now expecting thanks to the Trump administration, we may not have much help with Bil's housing needs, either.

He has already expressed that he wishes to live alone. But he won't be able to do that without support.

A LOT of support.

Support that costs money.

The irony of this all is that there have been rumors that Trump's youngest son (who is 10) has autism.  I don't know if that's true, and I don't speculate about it.  It is only the business of President Trump and his wife.  He has no duty to make his private life public, and I will not speculate about this.  But, if there was any truth to this, it would really be...


The rich get richer, and the rest of us get hurt.

That is our new world here in the United States, and I can't help but be upset over this.

This has been a 20 minute free writing exercise for #FridayReflections. All I did was correct several typos due to the speed at which I had to type and add a link so you could learn more about Katie Beckett Waivers.

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