Friday, April 20, 2018

The Pay Cut

"Bil" gets a service called Community Hab.  A community hab provider takes Bil out into the community to provide him opportunities for socialization.  They work on agreed on skills, such as money management.

A particular woman, let's call her "A", has worked with Bil for around two years now.

This woman has opened up Bil's world.  She hobbled around on a bad foot for months taking Bil places.  She's been dependable, and a support to Bil at certain stressful times in the past few months.

It's not an easy job.  I work with someone who works part time as a community hab provider.  She's had situations where her client has been tormented, for example, at the local mall, by young people calling her client names.  I don't know if this has happened to "A" or "Bil", but these providers are trained in how to react to such circumstances.  Or, if their client has a medical emergency while working with them.

Recently, "A" was rewarded for her hard work.

"A" received a $1.50 an hour pay cut for a job well done.

Yes, you read right.  A pay cut was her reward.

Well, the agency that employs her has lost funding.  They have to cut costs.  These people are not paid well as it is.

Yes, this is how we reward those who work with our most vulnerable populations.

Saturday, April 14, 2018

Sickness Strikes

My mother in law spent part of this week in the hospital, recovering from pneumonia.  And "Bil" ended up with bronchitis, which came close, really close, to developing into pneumonia, too.  Yesterday, she was moved to rehab in a facility that includes assisted living and skilled nursing.

The admitting doctor described her as "frail".

Today, we visited her with "Bil". "Bil" spent about 30 seconds interacting with her, after which his entire attention was trained on the room TV.  It was enough for him to see her.  Interaction wasn't necessary.

Family members are starting to wonder about her dementia.  The pneumonia hospitalization was a good time to tell them (since a couple of them were thinking about traveling here to see her, a journey of over 100 miles).  One asked me, point blank, if she had dementia.  Another said "I had suspected".

Yesterday, when my husband asked her what clothes she wanted him to bring to the facility, she just looked at him blankly. 

This morning, my mother in law didn't remember what she had for dinner last night (we wanted to know because she had trouble cutting her food for lunch - fish).  She didn't know if anyone had called her (there are a lot of people who care about her, and I had informed various family and friends of where she was and her phone number).

"Bil" wanted to know how long his Mom would be in the facility.  Everything, in his world, needs to have an exact time frame.  But there is no time frame.  He did announce to his Mom how long he thought she would be there.

And then, he asked us to take us to the apartment he once shared with his Mom, to get more clothes to wear.

It's good that he considers the supportive apartment he lives in now as "home", because we don't know if his mother will ever be returning to her home or not.

Sometimes, I wonder if her mental decline is, in some ways, a good thing for her.

And then I feel terrible for feeling that way.

Friday, March 30, 2018

Caregiving Bumps in the Road

It's ironic - now that I have so much to write about, I'm not writing about it anymore.

My autistic brother in law has receded into the background while we try to deal with issues surrounding my elderly mother in law, who is in the early stages of dementia.

Several evenings a week, we ('we' meaning family members in our area) have arranged for an agency to provide a home health aide to make supper for my mother in law, make sure she takes her meds (she can't manage them on her own anymore) and make sure she goes to bed with her oxygen on (on her own, she claims she doesn't need oxyge.  She does).

If a family member visits, she tends not to remember the next day.


We found out one aide wasn't doing her job, after a friend came over to visit and found some interesting things.  That aide lasted three weeks.  The current aide is good, but had car trouble - came one night via taxi (which probably ate up most of her pay for the night) and the next night, wasn't able to come - and the agency couldn't find a replacement.

So we and the friend all pitched in.  My spouse made dinner.  He had already visited his Mom earlier, after doing shopping.  He also did some of her financial affairs.

It never ends...until one day when it will end.

Meanwhile, "Bil" isn't feeling well, and, although he is supposed to come to his Mom's today for a weekend visit, we aren't sure what will happen.  When he left to go to his apartment this past Monday, she couldn't remember, a half hour later, when he was going to return.  She has become unmoored from time.

And, earlier this week, she couldn't remember her son's phone number, a number he has had for 31 years.

Ah, the joys of caregiving.

Saturday, March 24, 2018

Coming Up for Air #NoAtoZChallenge

It has been such a roller coaster ride, these last two months.

My mother in law has developed signs of dementia.  She goes to the doctor one day and forgets the next.  We found out the hard way, when she had not taken her medications in a couple of days.

It was a game changer, especially when a housing opportunity finally opened for Bil. We had to get (with family help) a lot of things together in a brief amount of time, but we all did it.

"Bil", my autistic brother in law, is now living in a supportive apartment about a five minute drive from where my husband and I live.  He lives there four days a week and spends the other three days with his mother. 

Her needs have exceeded what we can all provide and she now has a part time home health care aide.  She will run out of money in less than a year, though, and we don't know what we will do then.

It's all so exciting, I haven't had time to blog, and I will not be participating this year in the Blogging from A to Z challenge.

If you are one of my readers, and you do intend to A2Z, let me know, and I will be visiting your blog from time to time.

That's a promise.

Friday, January 12, 2018

Taking A Break

I've decided to put this blog on hold for a hiatus while I think about the direction I want to take it in.

I had thought about blogging a book based on my experiences with my autistic brother in law, "Bil", but I never got very far with it.

I am facing my mother in law's declining health, and other issues.

She was hospitalized earlier in December with a lung issue and put on oxygen.  We had additional difficulties with her this week.

I have to admit that watching her decline has stirred emotions in me - strong emotions - that I could barely believe I was experiencing.  I had a couple of day that were emotionally rocky for me.

I have a handful of of steady readers, and I am so grateful to them for sticking with me.  Thank you thank you thank you. 

If you have read my blog, thank you so much. I will be back.  I just don't know when. 
Farewell for now.

Friday, January 5, 2018

Our Own Independence

Welcome to the wonderful world of having a disabled sibling or in law. It's a journey that you either get or you don't get.

Next week, we are going to be attending an annual planning meeting where the Individual Service Plan for my autistic brother in law, "Bil", will be developed.

And, I have to face some uncomfortable truths.

The world for people with autism has changed dramatically since he was born almost 60 years ago.  And, Bil is finding it difficult to keep up.

He's gone from a world where people with disabilities were expected not to speak with their voice, and, instead, go along passively with decisions made by others.

He's gone from a world where people "like him" sometimes ended up in institutions with little hope and worse living conditions, to a world where people want him to be independent.

That word - independence.  People working with him are saying, that for Bil's long term good, he needs to live in an apartment where he would be expected to do most everything for himself.  He would need to provide his own transportation (his feet) or learn to use mass transit.

Other people with disabilities do that, but Bil has been waited on hand and foot by his mother for almost all of his life.  And he still expects things to be done for him by her, or by us (his siblings and in laws). He's never expressed a desire to learn mass transit, for example, and under the "People First" philosophy they can't give him that training unless he asks for it.

No, instead, he waits around until he knows someone is going to visit, and then he wants someone to take him somewhere.

Bil does need help.  But, at the same time, we deserve our own lives and our own freedom, when it comes to things Bil is capable of.

Bill is capable of walking - he has no physical disabilities.

He's capable of learning a lot, given the right training.  We've already seen glimmers of this in a day program he goes to twice a week (although, early this year, he will have to be removed from it, because of his "improvement".

But he has to ask to be trained for the skills of independence. We could say the system is stacked against him, and we can feel sorry for ourselves and yield to it.

We had a family meeting last weekend, and we aren't yielding.  To either the system or to Bil.

We may have to find our way differently.

Friday, December 29, 2017

Looking Back on 2017 #FridayReflections

2017 has come and gone in the blink of an eye.  That is what happens when you age - the years spin by faster and faster, like an unraveling roll of toilet paper.

Right now, I feel about as strong as toilet paper.

On this, the last Friday of 2017, I look back on a year that, for my autistic brother in law, has been one step forward and one step back.  And we look ahead to 2018 with some trepidation.

Kind of a cha-cha-cha dance for people with disabilities, including my brother in law, "Bil".

On the bright side:
Bil has made progress in his day program.
Bil is (apparently) at the top of the housing list, although that is because of the declining health of his mother.

On the not so bright side:
He is being pressured to take a housing placement that may not be suitable for him - a somewhat independent situation, for someone who is almost 60 and has never lived on his own for a day of his life.  For much of that life, his mother waited on him "hand and foot" as we say. Funny I should use idiomatic speech as it is something Bil has a lot of trouble understanding.

We are being pressured to accept something called "self determination", which could have some benefits, but would a lot more of our time and effort - I work full time, and all of Bil's siblings have health or physical problems.  And two of them are senior citizens, older than Bil.  I am a senior citizen too.

And, as I mentioned, his mother's health fails, something not unexpected in this, her 90th year.

In a way, I dread what is coming next.

I wonder how Bil feels?

A look back at 2017, for the last #Friday Reflections.

Yes, I dread the new year.