Sitting in the Cold Dark

This isn't strictly a story about my brother in law with autism.  This is more about eldercare issues.

We live some 150 miles from my mother in law, who is in her early 80's, and lives with my brother in law.  A couple of times a year they will have winter storms that knock her power (hence her heat) out.  This past storm that hit the Northeast United States was one of those storms.

My husband and I were coming home from work last night when she called our house on her cell phone and spoke to my son.  Of course, being a teenager, he didn't exactly tell us the moment we arrived home.  Well, he finally "remembered" (a couple of hours later!) that his grandma had called , and said she didn't have power, her heat was off and the trees around her house were quite bent to the ground under the load of all that gloppy, wet snow.

And we are 150 miles away.  Speaking of being helpless.  We're recovering from our storm too.

First, time to make phone calls.   She has internet phone, so of course it is off.  That tells us she is still without power.   Her cell phone gives us an unavailability message.  Finally, my husband calls one of her nieces (30 miles from her) who calls Mom's neighbor.  She's home, and without power too, but says Mom is OK.  Finally he was able to reach his sister who lives about 20 miles from Mom.  She said that she had gotten hold of Mom, and that she was huddled under a bunch of blankets and OK.  As my husband is talking to his sister, the call waiting announces his Mom is on the line.  So he ended up speaking with her but she said her cell phone was ready to die so they talked quickly.  And here we were.

All this technology. 

Every time there are one of these storms, it is more and more worrysome.  She suffered a small stroke some 2 years ago.  Her mobility isn't what it used to be.  She falls.  She refuses to wear her "I've fallen" alarm.  She is fiercely independent and wants to be able to have bil continue to lives with her.  And, how much can bil help her?  Could he call for help if something happened?  What will he do if the power stays off?  (one time, before my father in law died, it stayed off for three days.)  Oh, and did I mention that she drives one of those recalled Toyotas?

Aaaarggghh.

I hope this posting is around somewhere when I am old enough to drive my son crazy.

My Brother in Law, Computers, and the Virtual Weather Channel

Several years ago, I tried showing my brother in law the Weather Channel website, and some other things online.  He didn't seem to be that interested, but nothing says I can't try again one day.

I have to find some way to help broaden his horizons, so he can learn more about life and be able to make informed choices for himself.

My mother in law does use a computer but she has never owned a really good one - and her most current one needs to be replaced. So my brother in law has not had much exposure to them.

I found today a virtual Weather Channel HD studio tour.

One day I'd like to see if I can interest my brother in law in this.  But then I think about him using sites like Facebook and I shudder a little.  Introducing him to computers would be one complicated thing.

But maybe one day.

I may write about this topic of computers again sometime in the future.

The Weather Channel Comes to Binghamton - But Can Brother in Law Go to the Weather Channel

Mike Seidel of the Weather Channel was broadcasting details of our snowstorm live from Binghamton earlier today.

Wonder how my brother in law feels.  I'm sure he has been watching.  The storm wasn't that bad during the day but an hour or so ago the wind really started to pick up.  It is pretty nasty outside right now.  Bil wouldn't want to be out there but I'm sure he is following the storm on TV.

The weather is my brother in law's true love.  It's funny too, that his two neurotypical brothers are very interested in the weather, too.  In fact, my husband, had the local colleges offered a major in meterology, probably would have taken it up.  But there wasn't the money to send him to a college that offered that. 

But back to my brother in law....it would have been something if the Weather Channel gave tours, but they do not.  And, it would be a very daunting challenge to get him down to Atlanta.  Still, I may blog more about this one day.

Winter Storm-Brother in Law Style

My brother in law loves to follow the weather - on TV, that is.  He is scared to death of thunderstorms "in person".  He is anxious whenever the forecast is for snow, either at home or where his brothers live.

Yet, he has had the most sustained conversations he is capable of when talking about the weather.

Bil must be really anxious and excited now.  We are under a winter weather warning, here in the Binghamton area.  We are supposed to get 8 to 14 inches.  It will be the really heavy stuff.  Let's hope we don't lose our power.

Bil is probably giving my mother in law frequent updates about the situation.

Weather is a wonderful "special interest".

I wish I could take him on a tour of the Weather Channel.  Wouldn't that be awesome if he could see it in person and not just on TV?  Somehow, the key to bil may be in the weather-if only we knew how to unlock that door.

Future Planning Part 1-Cautionery Tale

 Planning for the future.   Most of us are guilty of slacking off on this. We were no exception.

Over the years, we asked a number of times "what about bil"?  And my father in law responded "everything is taken care of".   He really didn't want to discuss it.  He didn't tell....and we didn't pursue the asking part.  Shame on us.

My father in law died 2 weeks after retiring.   He left a handwritten will and a small amount of life insurance.  (what did he do for a living?  Well, he was in the insurance industry.  So never "assume".)  He had a company pension.  But he had not taken the pension option that would have given my mother in law a survivor benefit because he wanted the higher pension while he was alive.  Too bad he didn't live to see it.

But worse:  He had never made any attempt to get bil on Medicaid.  Why?  Because he didn't believe in big government.   (As an aside, you the reader may be asking why it was so important that bil had gotten on Medicaid.  Well, he would have become eligible for quite a number of services here in our home state of NY where being on Medicaid was a requirement for eligibility.  This situation may exist in other states too, but I only know about NY.)

When we met with the local ARC, where bil had been at a sheltered workshop all those years, we found out that he was the only client at that job that wasn't on Medicaid. 

It would have helped my mother in law too, because by that time she was struggling to pay for her medications, and for his.  She and Dad had worked hard all their lives. They didn't turn down Social Security or Medicare, why was this different?

We finally got bil on Medicaid, but it took years.  And he isn't out of the woods, with all the NY budget cuts. Who know what the future will bring-because of lack of planning, and us not being assertive enough about our concerns.

What Do Siblings owe Their Siblings with Special Needs? Part 3

Dear Mother in Law - my "letter" continues.

We did care, but perhaps it would have helped if you had discussed your expectations with us.  Siblings do care, and should care.  But, and this is the important life-we also have the right to our own lives.

I remember, as an adult, the time my husband took bil for a walk.  And you got so upset, because it may have triggered an asthma attack.  In the meantime, we felt that bil's horizons had to be expanded, that he needed to be exposed to different things so he could make an "informed decision" about his goals for his life.

In the meantime, we did one day find out your expectations for your other children.  I remember how hard it was for us to have that talk but we did have it.  You had "assumed" that one of bil's siblings would step forward and take care of him.  That we would eventually move him into one of our homes.  You didn't, however, account for our health problems, for one sibling living in a one room basement apartmentor, really for that matter, a lot of other things.  Like the fact that 2 of the 3 other siblings are older than bil, and bil might just outlive us all.  We've been blessed, he is in relative good health.

You just assumed. As it turned out, all of us had different expectations.

We will be "there" for bil.  We've always assured you of that.  But no sibling should ever be expected to sacrifice their entire lives"just because."    We all need to work together to make sure that bil has the best life possible because he can't fully advocate for himself.  And what becomes of bil may not be what you expect-but it will be good.

Meantime....what does bil expect?  What are his hopes and dreams?  It is so hard to find out but one day I will write about what we do know.

Love,
Your daughter in law

What Do Siblings Owe Their Siblings with Special Needs? Part 2

I want to talk a bit about the relationships between "typical" siblings and their sibs with autism and also the expectations of their parents.

If I was writing an open letter to my mother in law (see previous post for what set this off) I would say something like this:

Dear Mother in Law:  (and you are a good person, so I say this with respect)

Being a mother, I know it is hard when you are trying to raise 4 children.  It was much harder for you back in the 1950's and 1960's when there was no support for what you were going through.

But do you truly feel that you were supposed to get that support from your own children?  Sometimes it just isn't possible.   Or you do get support, but it disagrees with what you feel would have been best.

You've said more than once that you wish your children had spent more time (especially my husband, who is the oldest) with your child who had autism.  You wanted your other children to help you with this and yes I am going to use this word, burden.

But when it comes down to it, should (for example) a 10 year old boy be responsible for his 4 year old sib?  And if so, how?   Should a young boy have to sacrifice his friends, his interests, just because he has a disabled brother?  And if so, WHY?  How about at other ages?  We've been lucky but other siblings have had parents not show up at sporting events they participated in, at concerts they played in, at school graduations, etal. because of the disabled sibling.  There could be quite legitimate reasons but all of this is a form of sacrifice. 

Many siblings have even sacrificed their careers, or at least been made to feel perpetually guilty for daring to have their own lives.

At an early age my husband was already getting up early and making breakfast for the family.  My husband also started working at the age of 12, first as a paper boy, and then as he grew older taking on other jobs such as lawn mowing and golf caddying.   Pretty much as a teenager he bought his own clothes and had his own spending money.  He bought his own first car, which was old and lucky to pass inspection.  He paid for his own college.   In college (a low cost one), he worked 3 jobs one summer and also worked nights during the school year.  Didn't that take a burden off of you? 

You never discussed with us your expectations, your hopes and dreams for bil.  More on that later.


To be continued....