Friday, July 21, 2017

Too Many Regrets #FridayReflections

In some ways, my mother in law's life could be called "the one that got away".  But, in her case, it was the sum of some decisions that, with hindsight, weren't all that good, along with some "no one can look into the future, can they?"

For example, choosing not to get a survivors benefit on her husband's pension so that he could draw more money when he was alive.  He died two weeks after retiring.  Who could have predicted?  Well, he wasn't in the best of health, and retired for that reason to begin with.  His downhill slide was apparent.  Why did he leave his wife with no survivor's benefit?

Redecorating her house instead of saving her money for the future.  When her future came, she found she had spent money on the wrong things, things buyers had no interest in. And, sad but true, no one wanted her belongings. (That is true for many seniors in our society here in the United States, by the way.)

While she had health and money, deciding she was going to stay in her house, no matter what.  She waited too long and had to move away from her friends and many of her family members.  Fortunately, we live in an area much cheaper to live in.

But, worst of all, she didn't take heed of the future of her autistic son.  She made no plans for his future.  She refused to have him move into supported housing (placements were offered several times).    She didn't even discuss her wishes for him with her other children.   She just "assumed."

Now, her son is at the mercy of budget cuts and the good will of his siblings.

Did she not realize that her other children were not mind readers?

No, it wasn't just one thing that got away.  It was many things.  Her health (which she did try to preserve).  Her mobility (and she was far from a lazy person).  And now, in the end, her quality of life has suffered.  Her children, including her autistic son, worry about her.


I'm sure this future was the last thing she wanted.  Her future was the person who haunted her, the one that got away.

Join Sanch and other bloggers in #FridayReflections.  The prompt for this week is “Then I wondered if everybody has that person that haunts them, the one that got away.” ― Marlon James, A Brief History of Seven Killings. You can use the entire quote in your post or else as a theme for your post.


Friday, July 14, 2017

The Worry Plate

Have you ever heard of the Worry Plate?

We've been caregivers for my elderly mother in law.  Family members do shopping, taking to appointments, help her with her banking, and provide a lot of other help.

But now, my mother in law has fallen once too often.  It appears her days of independent living are nearly at an end.  On top of this, "Bil", my brother in law with autism (who has lived with her all his life), is apparently near the top of a housing list.  When his name reaches the top, he must take the placement, or lose his opportunity all together.

Bil must leave, but it is obvious that he is worrying about his mother's ability to be alone.  He's been skipping going to his day program recently, and it has been noticed.

At a meeting earlier in the week regarding Bil's progress in a program he attends twice a week and in another program he participates in, we were introduced to the concept of the "worry plate". Bil expressed concerns about cuts proposed by the government that will affect him.  "You can worry about your Mom", the director said.  "It is OK for that to be on your worry plate.  And you can worry about what living in a supported apartment will be like.  It is OK for that to be on your worry plate.  But you should not worry about the budget cuts.  There are people whose jobs are to worry about that. Get that off your worry plate."

I love the concept of the worry plate.

My mother in law is very much on our worry plates, which, right now, seem to be overflowing.

We are trying to educate ourselves regarding how to get the care we need and how to pay for it.  I know that in some countries, an elderly parent just moves in with children but in the United States, it is more complex than that.  We do not have extended families to help us out, either.

We are about to embark on a new stage of caregiving.  It has its own vocabulary, its own experts, its own practices.  We are embarking on a steep learning curve.

We've taken the first few steps.  We feel like we are drowning in air with all the information, and all the research and document gathering we will have to do.

We are like fish out of water.

"Fish out of water" - today's prompt for #FridayReflections.

Today I am joining Sanch Vee and other bloggers in #FridayReflections.  I hope you will, too.

One final note:  For several months I have been keeping a "once a week, Fridays" blogging schedule.  Due to time being taken because of this new turn in our lives, I may suspend writing posts for this blog, or post on an irregular schedule.

Wish us luck.

Friday, July 7, 2017

Mom Have You Eaten? #FridayReflectons

For Bil, my autistic brother in law, his mother, and us, it has not been the best 10 days.

My mother in law, Bil's mother, fell and hit her side and then her head.  Bil pulled the emergency cord in her apartment for her, but she wouldn't let the paramedics take her to the ER.  She didn't want Bil left alone because thunderstorms were threatening.

We ended up taking her, and Bil was so bored because he could not control the TV in the waiting room.  And, finally, he decided he wanted to be home after all.

A CT scan of mil's head was negative.  A stroke of luck.  It could have been so much worse.

When they asked my mother in law if she had hurt anything else, she said only "I am old. I hurt everywhere."  It turns out, after a second trip to the ER after she couldn't stand the pain any more, that she had broken her tailbone.  There was nothing to be done, only pain management.

But our mother in law has two other sons besides Bil, and both are very much in her life.  Another stroke of luck.

The next day was the Fourth of July, and Bil wanted to be at our house, where we were entertaining several other family members.  The plan was to have a BBQ and bring the leftovers (we made sure there were plenty of leftovers) to my mother in law's house.

When we took Bil home, Bil's first words to his mother were "have you eaten?"

Many people believe autistic people don't care about others in their lives. They are wrong.  We are lucky in another aspect - Bil is verbal, and is a great help to his mother.  How lucky.

But this is only a small part of the story.  There's a lot more, but I will blog about it more next week.

Wish us luck.

Linking with Sanch Vee and #FridayReflections.  Today's prompt:  Lucky.

Friday, June 30, 2017

The Ultimate Conversation

We all will die one day.

There, I said it.

It's a truth we humans like to avoid  We use all kinds of euphemisms in describing it.  Passing on. Passing away.  Going to heaven.  Being promoted to glory.  Going to sleep in the arms of the Lord.  Taking a dirt nap.

Euphemisms don't work too well with people who are autistic.  Many of them take these euphemisms literally.

Yet, we were warned recently, we do have to talk to Bil about the upcoming death of his mother.  No, she isn't terminally ill.  But, she just fell again, earlier this week, and it's a matter of time.  That "matter of time" may be numbered in years.  Or months.  We just don't know.

But it's important to do it right.

For example, if you want to talk to him about his mother (who is elderly) dying one day, we were told you can't say to him "one day, your Mom will be gone".  That might well mean that she is going to walk out of their shared apartment one day and maybe she'll be back tomorrow, or the next day. 
No, it has to be in the sense that death is natural, and it is going to happen.

We need to prepare him for this most unpleasant event which will come one day.

One thing in our favor is that his father has died, so he is not a stranger to death.  But, after his father's death, little changed.

This time, everything will change.

So, the ultimate conversation will have to happen, and soon.

We just have to figure out how.

Friday, June 23, 2017

The Waiting Game #FridayReflections

Waiting.  It's the waiting game.

We have played it for years.

Waiting for decisions.  Will "Bil", my autistic brother in law, be accepted for Medicaid, a joint state/local medical program that is the gateway to various services that will help him?

The days pass.  

Uncertainty.

He's rejected.  We reapply.  Another wait.

Finally, good news.

Now that Bil's been accepted for Medicaid:  we apply for a program where Bil can be worked with one on one.  But there's nobody who wants to work with Bil.  These programs find it hard to find workers.  It pays so little, in the high cost of living area where Bil lives at the.

We wait, and wait, and they never find anyone.

Years pass.  More waiting.  More waiting lists.  Waiting lists for housing, a waiting list that is discontinued, and then there is no more waiting list.  And then, there is a list again.  Who knows what is going on?

Will my husband we named as guardian for Bil, who never has had a guardian until now? (yes, but that also put additional burdens on my husband, Bil's oldest brother.    It takes months to gather what is needed.  Finally, the lawyer puts in the application.  Another wait.  And what happens if something happens to Bil's elderly mother, in the meantime?

There is a hearing.  The application is accepted.  But then there is more to wait for.  There always is.

We wait and wait and wait, as the days of our lives tick away.

And now, the United States Senate considers legislation that will cut programs that benefit Bil, and others like him.  We can protest, but, more than that, we must wait, and wait still again.

 “Sometimes waiting is the hardest thing of all.” - Luanne Rice
 
 Blogging for #FridayReflections, 

Friday, June 16, 2017

A Total Eclipse

How many of you have seen a total eclipse of the sun in person?

Today's prompt, for #FridayReflections, is:  Write about a moment in your life you wish you could freeze and preserve.

I thought and I thought and I thought.  But at first, I couldn't think of one!

My memory is far from perfect.  And, as I age, it seems that my memory becomes balkier and balkier, as if my brain was a hard drive that was getting full.  There are a lot of happy moments in my life that I would love to freeze and preserve.


But then, it came to me.  This is my moment -  The total eclipse of the sun that I saw in March of 1970.  That's the moment I want.

Actually, the eclipse was the climax of a trip I took with members of my high school class (a specialized high school for those talented in the sciences) and others, several hundred miles, to see a total eclipse of the sun in North Carolina.  It was wonderful being away from home overnight.

And more wonderful to see a total eclipse, on a sunny day.

It's hard for me to describe an eclipse, because the moments before, during, and after totality are such an experience that words fail me.  I'm not the only one who feels that way, either.  

I am not a spiritual person, but in those moments, I felt something I have never felt before or after.  Don't be fooled by magazine articles that treat it as three minutes of "gee whiz, we can see a corona".  You have no idea what you are in for.

As the eclipse progresses, nature begins to realize something is not right.

Birds fall silent.  A wind springs up out of nowhere.  Even the people you are with stop talking  The air temperature drops and you shiver.  And then there is a wall.  You literally see the shadow of the moon sweeping along the ground (we were on a field in the stadium of a college.) 

The sun is obscured, a bright ring around it transfixes you, and you want to fall to your knees in absolute wonder.  Time stands still. You are chilled.  It isn't just the air temperature.

Dusk fell in the middle of the day, as scientists around me made their measurements and did their calculations.  They couldn't look up to see the beauty of what they were measuring. 

But I could.  I did.  And I wish that moment of totality, instead of lasting around three minutes, could have lasted forever.

This August, I hope to experience it again.  My husband and I will have to travel hundreds of miles from our home, but we are ready to.  This time, I will have my cell phone, but something tells me I won't be using it in those moments.

My autistic brother in law Bil loves science, and loves to see science documentaries and read science books.  How, I wonder, would he view an eclipse.  What would he think?  I could wish the eclipse was here where I live.

Perhaps we could have watched it together.

Maybe one day.

Join Sanch Vee and other bloggers for #FridayReflections.

Friday, June 9, 2017

Mistakes - #FridayReflections

You haven't lived if you haven't made mistakes.  Mistakes are how we learn, and how we live.

I have made my share of mistakes.  In fact, I can think of a number of mistakes my husband and I have made, when it comes to his autistic brother, "Bil". These include:

1.  Not getting involved in his life soon enough - when his father kept saying (when we tried to bring up Bil's future) "everything is taken care of"....well, it wasn't.  Actually, nothing was taken care of.  Surprise. 

2.  Not applying on his behalf for Medicaid, soon enough, because his mother didn't want us to.  We waited until his widowed mother was struggling, trying to pay for his medications (see #1 above)  that she had to say "yes".  Erroneously, she thought that applying for Medicaid was something that "decent" people didn't do.  But many people don't know that the major beneficiaries of Medicaid, a joint state/federal program, are the elderly, and the disabled.

 By the time she allowed us to go forward, the government had tightened up the requirements.  It took over a year, and a first rejection, to get him the benefits that could pay for his medications, and make other services possible.

3.  Exercise.  Bil never exercised.  When not at his sheltered workshop, he mostly stayed in his room.  Food became a recreation for him.  He loves to eat out.  With his mother, he did plenty of it.

We took him walking in the mall once, and his mother ws upset because he may have had an asthma attack.  We never tried again.

Yes, he has asthma.  But it has also been well controlled for years.

So, why would we want Bil to exercise more, something he doesn't seek out on his own?  For starters, he is overweight bordering on obesity. He does get a little exercise now, at his day program, the program he goes to twice a week (they have exercise videos he enjoys).

But last week, I saw something worrisome.

In our back yard, there is an Adirondack chair.

At a Memorial Day BBQ, Bil ended up sitting in one of our two Adirondack chairs.  The problem?

He couldn't get out of this chair without help.

Bil is in his late 50's.  If you can't get out of a chair in your late 50's, you have a problem.    I've received some education in fall prevention, and I know that your ability to get out of a chair ( a simple sounding thing if you are young)  can predict much about your life as a senior. You need that muscle strength.  Without muscle strength and balance, you become susceptible to falls.

Bil is starting to show signs of vulnerability to falling.  And now I know another mistake - we never paid attention to his physical fitness.  His mother has a long history of falls.  Falls are deadly for seniors.

And now -what do we do, in a way that he will accept?  That is our latest challenge.  Right now, I don't have an answer.  If you have a suggestion, I welcome it.

Join Sanch and Corinne for #FridayReflections.

Today's prompt - "Write a post about making mistakes"