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.

Join Sanch and other bloggers.

Friday, January 27, 2017

Housing for Bil Part 2

In Part 1, I started to blog about Bil, one day, having to live apart from his elderly mother.

We had a coming attraction about his ability to live on his own when his mother became sick a bit more than a year ago, and had to be hospitalized.  The hospitalization was followed by rehab.  At her age, lying in a hospital bed causes rapid physical deterioration.

Bil did not want to live with one of his brothers.  He didn't mind being by himself.  I'm sure that is because he was in control of his environment.  He could keep the lights dimmed, the TV on as he chose, and do what he wanted.

There were just a few problems.

He would not take out the garbage unless prompted.  And, with everything connected with his mother's hospitalization, we didn't realize for a couple of days, that no one had taken the garbage out.  Normally, taking the garbage out is Bil's task- but he does it under his Mom's direction.

There was no direction now.  He didn't take the garbage out.

We walked into the house, some two days after my mother in law was admitted to the hospital, and - it stank.  Stank as in bad food scraps, and more.

Bil seemed oblivious to the smell. So we had to tel him to take the garbage out.

He never did learn to take the garbage out without prompting.  I would have thought that, after a while, it would have become a part of his routine, but it never did.  So this was just one of a number of experiences we had, being fully responsible for Bil for the first time.

It won't be the last time.

To Be Continued.

Friday, January 20, 2017

Housing for Bil Part 1

"Bil" had his annual review recently, and the topic of housing for Bil, once my mother in law can no longer care for him, came up.

Let me backtrack a little  Bil lives with his mother.  He always has, for the almost 60 years of his life.  For almost all of them, he lived in the same house.  In 2015, he and his mother moved up here to be closer to two of her other children, and they moved into an apartment in a senior complex.

Once his Mom can no longer stay in the apartment due to physical or health issues, the State of New York will not let him stay there by himself (which would not be a good idea, anyway), because Bil has a developmental disability called autism.  At this point in his life, he can not live independently.  He doesn't have the skills.

We had a coming attraction about his ability to live on his own when his mother became sick a bit more than a year ago, and had to be hospitalized.  The hospitalization was followed by rehab.  At her age, lying in a hospital bed causes rapid physical deterioration.

Bil did not want to live with one of his nearby siblings.  He didn't mind being by himself.  I'm sure that is because he was in control of his environment.  He could keep the lights dimmed, the TV on as he chose, and do what he wanted.  No wild parties - just being on his own.

We knew he needed our support, and we did live in the area.  We would check in on him, make sure things were OK, bring food, and take him out when needed. 

There were just a few problems, and they became apparent quickly.

To Be Continued.

Saturday, January 14, 2017

Time To Take Supports Away #WYHO

Yesterday, my husband, who is the guardian of his younger brother "Bil", who has autism, went to Bil's annual review at the program he attends three days a week.  Accompanying him were two other family members.

It wasn't what we expected, but we have learned to expect the unexpected.

We were told that Bil was about to lose eligibility in the day program.

You see, in the United States, programs for those with disabilities work something like this:

The family or other advocate works to get the person into a program that will benefit him.  Finally, at some point, you may be successful in getting the individual (let's call that person a "consumer") into the program.

The program gives the consumer (Bil) supports.  The program works with the individual.  The individual improves.  And so, the program (the support) is taken away.

Does this make sense?  Let me give an example.  You have a person who is sight impaired.   So you give the person a white cane (aka a long cane, or a probing cane) and teach him/her to use it.  With the support of the cane, the individual can sense obstacles, walk and get out into the community, sensing what is around and gaining confidence.

So now, would you take the cane away? 

What had made "Bil" eligible for his program was his lack of social skills, something that is part of the definition of "autism".  Within the program, using cues and other strategies, Bil did improve his social skills - within the program.  So now, time to take the supports away.  Well, he still has the disability.  Without the program, he will sit in his room and watch TV all day, instead of exercising his body and his mind, and interacting with other people.  He will backslide.  It's similar to what happens to grown children with autism who turn 21 and age out of their school supports.  They lose the gains they made.

Bil will lose what he worked hard to achieve, without those supports.  Not only that, but the people who run the program love having Bil.  They are genuinely distressed.  Bil loves coming to the program because it's a positive part of his life.  He knows the people there want him. So, as the expression goes, let's pull the rug from under him.

People with autism need positive experiences and encouragement.  Does that end now?  A support does not remove a disability.  It enables the individual to achieve despite the disability.

Today's cue in Write Your Heart Out was "This I promise you.". 

Bil, this I promise you.  We are trying our best to keep you in this program that you love.

Saturday, January 7, 2017

A New Year, A New Me?

The driving force of your life 
Three things I’d do differently this year

I've never attempted to address two writing prompts to the same post, but 2017 is going to be a year of challenge for all of us.  A President will be taking office on January 20 who is determined to make a lot of changes, and some of these changes may not be good ones for our family.

So today, I am participating in two linkies.

As my readers know, my husband and I are responsible for "Bil", a man in his late 50's who has autism.  Up to now, Bil has followed the courses that society has set out for a man with a developmental disability.  For many years, Bil worked in a sheltered workshop in the county where he grew up in downstate New York.

But, when my mother in law, who is in her late 80's, needed to be closer to family, Bil ended up living several miles from us in a small city in upstate New York.

Now, it is time to seek new directions for him in this new year.

Right now, the driving force in my life is an attempt to find some balance between working full time (as I approach retirement age, I have no interest in retiring), blogging, and helping my husband with the need to help increasingly with both Bil and his mother.  I can not be totally swallowed up by this, and I can't let my husband be swallowed up, either.  I am determined to do what is necessary but remain my own person.  It won't, obviously, be easy.

With sheltered workshops being phased out, Bil hasn't worked since mid 2015, and it now appears that he never may work again.  But, at the same time, new opportunities may be opening for him.  He has been participating in a day program two or three days a week, where he engages in various physical and mental activities.  You can see him starting to question things.  In the last Presidential election, in fact, he voted the opposite of his mother (something she wasn't happy about, I could add.)

So these are my three things I will do differently this year.
1.  For myself, I will educate myself more in how we can find help for Bil in finding increased independence for himself.

2.  I will take better care of myself.  I allowed myself to gain 10 pounds, and am on the verge of becoming overweight once more.  For the sake of my health, this must be reversed.

3.  I am going to reevaluate what I want from this blog.  Do I want to try to use it to blog a book?  I only have limited readership, so increasing the readership may have to become a goal.  I may find myself joining the Blogging from A to Z Challenge - more on that in the coming

Starting today I will join with Corinne at Everyday Gyaan in writing my heart out.  I won't do the entire Challenge but will participate in the weekly feature if I can. There is a lot more to the Write Your Heart Out event and I invite you to go to Corinne's blog to get the full details:

Write Your Heart Out #wyho is weekly feature that appears every Thursday with a linky that will be open from Thursday to Sunday.
  1. Write a new post in which you free write.
  2. You’re also welcome to write on the prompts offered in current post and/or add links from your posts from the week.
  3. Visit and comment on at least two posts before yours.
  4. Use the hashtag #WYHO to share posts and you’re welcome to grab the badge too.
Linking with #WYHO and #FridayReflections.