I see it's been almost two years since I blogged last.
Since then, so much has changed. My mother in law's health continued to decline and she eventually lost her battle to stay with her Bil. She passed away in late 2018.
But before then, Bil had gone into what New York calls supportive housing. It is through an agency that provides other support services for him. He lives, not in what used to be called a group home (those facilities now are more like assisted living apartments, and the one we saw while looking for Bil's housing was occupied by frail, older disabled people) but an apartment he shares with another disabled man. Each of them have their own bedroom. They are required to cook for themselves, and clean. Bil still doesn't like to cook, and he refuses to clean, a story for another time.
He will never be independent. And I worry, about changing times which may cut the support that he now has.
There would have been so much to write about, if only I had the energy. I could wish I had an online diary for the last 18 months or so, but I don't.
Life is an unknown journey for all of us, be it Bil, or Bil's siblings, or me.
Now Bil is in his sixth decade. The world is changing, and because he loves to watch news programs, he knows it.
Will I continue his story?
Maybe.
I may even insert a little of my own story.
It will depend on how life goes.
Stay tuned.
Saturday, February 8, 2020
Friday, June 15, 2018
The Butt Dial
Tonight, my phone rang. It was in my purse, and by the time I fished it out, the phone had stopped ringing.
It was my mother in law's former next door neighbor, and best friend. She had butt-dialed us (she was playing with some of her grandchildren). But, while my husband was on the phone with her, we talked a little. She wanted to know how her friend was doing. She wanted to know how my autistic brother in law, Bil, was doing.
She will call my mother in law, who is 90 and has early dementia, and the next day my mother in law won't remember anything. But at least my neighbor still calls.
Enough people who once cared about her have seemed to have disappeared. Or maybe they call her, and she doesn't remember when my husband asks. She claims "no one called her".
We have been going through photos in her apartment. And there are so many people in those photos we don't know.
Others, we take an educated guess.
Are these people alive? Do they care? Or, knowing she is losing her memory, do they decide it is to painful to watch her decline?
I can identify. It's painful for us, and the friend who butt dialed. And maybe for Bil,but he interacts so little with her that we don't know. Like some with autism, he doesn't share his inner thoughts with us.
But I'm glad she butt-dialed. So glad.
It was my mother in law's former next door neighbor, and best friend. She had butt-dialed us (she was playing with some of her grandchildren). But, while my husband was on the phone with her, we talked a little. She wanted to know how her friend was doing. She wanted to know how my autistic brother in law, Bil, was doing.
She will call my mother in law, who is 90 and has early dementia, and the next day my mother in law won't remember anything. But at least my neighbor still calls.
Enough people who once cared about her have seemed to have disappeared. Or maybe they call her, and she doesn't remember when my husband asks. She claims "no one called her".
We have been going through photos in her apartment. And there are so many people in those photos we don't know.
Others, we take an educated guess.
Are these people alive? Do they care? Or, knowing she is losing her memory, do they decide it is to painful to watch her decline?
I can identify. It's painful for us, and the friend who butt dialed. And maybe for Bil,but he interacts so little with her that we don't know. Like some with autism, he doesn't share his inner thoughts with us.
But I'm glad she butt-dialed. So glad.
Monday, June 11, 2018
What Makes Us "Us"? #MondayMusings
On Saturday, my autistic brother in law, "Bil" visited his elderly mother, who is now in a long term care facility. My husband and I brought "Bil" there.
The visit started as it normally does. Bil comes into the room, looks at his Mom just long enough to establish she is there, and takes off to another part of the semi-private room. Normally, her roommate spends the entire day outside her room, so there is some privacy, and Bil heads for the recliner next to the roommate's bed.
This time, though, my mother in law wanted to talk.
"Come here, Bil" she instructed several times. He did, almost reluctantly, as we tried to get some idea of what he had done recently. More than anything, his mother just wanted to know that he is well, and happy.
But it's like pulling teeth (and, as a literal thinker, if I said that to Bil, he would run away, terrified that someone wanted to pull his teeth out) sometimes, to find out things from Bil. He's not much of a talker. Even when he talks about things he likes, he isn't a man of many words.
My mother in law loves her flowers. We brought her some. She asked, several times in succession, what they were. Patiently, I told her several times what they were.
Then she asked Bil about the Belmont Stakes race that was taking place later that afternoon. What channel was it on? And several minutes later ,what channel was it on? And Bil answered her each time.
It's impossible to know what Bil is thinking of, as he watches his Mom sink into dementia. She is in the early stages, and seemed to be pretty alert today. But so much of us is our memories - I can see it on days when she isn't quite there, and I know it will only get worse.
What will happen when she doesn't remember who any of us are? What are we without our memories?
What happens to us when our memories are lost? When we are surrounded by strangers who are really our loved ones?
What makes "us" us? And, since "Bil" is younger than my husband and his other brother, will he go through this again and again, as his two male sibs age
Join Corinne and other bloggers for #MondayMusings.
The visit started as it normally does. Bil comes into the room, looks at his Mom just long enough to establish she is there, and takes off to another part of the semi-private room. Normally, her roommate spends the entire day outside her room, so there is some privacy, and Bil heads for the recliner next to the roommate's bed.
This time, though, my mother in law wanted to talk.
"Come here, Bil" she instructed several times. He did, almost reluctantly, as we tried to get some idea of what he had done recently. More than anything, his mother just wanted to know that he is well, and happy.
But it's like pulling teeth (and, as a literal thinker, if I said that to Bil, he would run away, terrified that someone wanted to pull his teeth out) sometimes, to find out things from Bil. He's not much of a talker. Even when he talks about things he likes, he isn't a man of many words.
My mother in law loves her flowers. We brought her some. She asked, several times in succession, what they were. Patiently, I told her several times what they were.
Then she asked Bil about the Belmont Stakes race that was taking place later that afternoon. What channel was it on? And several minutes later ,what channel was it on? And Bil answered her each time.
It's impossible to know what Bil is thinking of, as he watches his Mom sink into dementia. She is in the early stages, and seemed to be pretty alert today. But so much of us is our memories - I can see it on days when she isn't quite there, and I know it will only get worse.
What will happen when she doesn't remember who any of us are? What are we without our memories?
What happens to us when our memories are lost? When we are surrounded by strangers who are really our loved ones?
What makes "us" us? And, since "Bil" is younger than my husband and his other brother, will he go through this again and again, as his two male sibs age
Friday, May 25, 2018
The Sheltered Life #FridayReflections
My autistic brother in law, Bil, spent much of the years of his adult life, sheltered, in either a sheltered workshop (where he made less than the minimum wage) or, in his bedroom.
That has changed in the past two and a half years, after his two brothers moved him (and his elderly mother, now ailing) up to be near us.
We had better programs here - no reflection at all on his mother, who did what she could raising him in an age where there were few services for people with autism.
Sheltered workshops no longer exist - and as a result, my brother in law no longer works. One adjustment.
Sometimes, I am in awe of my brother in law. He has had to make so many adjustments in so little time.
There is another one coming, as his mother will be transitioning from rehab into skilled nursing in the near future. She needs 24 hour care for an ailment and won't be able to return home after three hospitalizations in a month's time. And now, we have a month to clean out her apartment, including the room that was once his shelter. Three moves in less than three years.
"Bil", earlier this year, moved into what is called supportive housing, and now is experiencing life on his own (with a roommate, and support, but still on his own). How daring can that be, in your late 50's?
He has the chance for independence, finally, and I hope he has the daring to take full advantage of it. So far he is taking baby steps - and what else would one expect, when the door to independence of a sheltered life opens?
But, sooner or later, there will be still another leaving from his sheltered life, when the mother who cared for him for almost 60 years takes her ultimate journey.
What will happen then?
Today, on #FridayReflections,I am writing from the prompt "A sheltered life can be a daring life as well. For all serious daring starts from within. - Eudora Welty" Join Shalini and Corinne at Everyday Gyaan, and contribute your own #FridayReflections.
That has changed in the past two and a half years, after his two brothers moved him (and his elderly mother, now ailing) up to be near us.
We had better programs here - no reflection at all on his mother, who did what she could raising him in an age where there were few services for people with autism.
Sheltered workshops no longer exist - and as a result, my brother in law no longer works. One adjustment.
Sometimes, I am in awe of my brother in law. He has had to make so many adjustments in so little time.
There is another one coming, as his mother will be transitioning from rehab into skilled nursing in the near future. She needs 24 hour care for an ailment and won't be able to return home after three hospitalizations in a month's time. And now, we have a month to clean out her apartment, including the room that was once his shelter. Three moves in less than three years.
"Bil", earlier this year, moved into what is called supportive housing, and now is experiencing life on his own (with a roommate, and support, but still on his own). How daring can that be, in your late 50's?
He has the chance for independence, finally, and I hope he has the daring to take full advantage of it. So far he is taking baby steps - and what else would one expect, when the door to independence of a sheltered life opens?
But, sooner or later, there will be still another leaving from his sheltered life, when the mother who cared for him for almost 60 years takes her ultimate journey.
What will happen then?
Today, on #FridayReflections,I am writing from the prompt "A sheltered life can be a daring life as well. For all serious daring starts from within. - Eudora Welty" Join Shalini and Corinne at Everyday Gyaan, and contribute your own #FridayReflections.
Friday, May 18, 2018
A World Without Books #FridayReflections
“I have always imagined that paradise will be some kind of library.” — Jorge Luis Borges
I have loved books since I was a little girl. I loved how they felt. I loved how they smelled. I loved going to the small branch public library that was located in the housing project where I grew up and taking books out.
Soon after I started school, that branch library closed, and in its place we started to get a bookmobile. It would park at my housing project each Thursday, except during the summer. I dreamed of working in a bookmobile (a mobile library) when I grew up.
There was another branch library in walking distance, about a mile away. They would close each June (and reopen in September) but they would allow users to take out an unlimited number of books right before they closed. I filled my room with summer reading material.
So, when my husband and I became responsible for my autistic brother in law, one of the very first things we did for him was getting him a library card. Strangely, he won't take the books out. He wants to read in the library only. He does have his favorites - science and horror.
In his own way, he loves books, too. And the library.
In books, we both find our own types of paradise.
If heaven does not have libraries, it will not be heaven.
And, on this day when students and a teacher in a high school art classroom lost their lives in Santa Fe, Texas, all I can do is share a picture of a quilt displayed at our local library during the summer of 2014. May they rest in peace.
Join Corinne at Everyday Gyaan, Shalini/Kohl Eyed Me at #FridayReflections and share your love of books!
I have loved books since I was a little girl. I loved how they felt. I loved how they smelled. I loved going to the small branch public library that was located in the housing project where I grew up and taking books out.
Soon after I started school, that branch library closed, and in its place we started to get a bookmobile. It would park at my housing project each Thursday, except during the summer. I dreamed of working in a bookmobile (a mobile library) when I grew up.
There was another branch library in walking distance, about a mile away. They would close each June (and reopen in September) but they would allow users to take out an unlimited number of books right before they closed. I filled my room with summer reading material.
So, when my husband and I became responsible for my autistic brother in law, one of the very first things we did for him was getting him a library card. Strangely, he won't take the books out. He wants to read in the library only. He does have his favorites - science and horror.
In his own way, he loves books, too. And the library.
In books, we both find our own types of paradise.
If heaven does not have libraries, it will not be heaven.
Join Corinne at Everyday Gyaan, Shalini/Kohl Eyed Me at #FridayReflections and share your love of books!
Friday, May 11, 2018
The Last Spring
I fear this will be my mother in law's last spring.
Next week, we will have to tell my brother in law, who is autistic, that his mother will not be coming home from her recent hospitalizations and stints in rehab. Instead, she is going to be admitted into skilled nursing.
Three Emergency Department visits in five weeks. A good reason why I have not been posting.
Today, she couldn't even remember that she had rehab. All she could remember is that she was exhausted because "they kept taking me out of bed".
I don't know how my brother in law will react, but I have a feeling he's already figured it out in his mind. Us telling him will only make it official.
We've been told we have to be direct with him - not to use any euphemisms, as they would only confuse him.
Hoping I will have enough energy to report how the "big reveal" went.
Watching my mother in law fade away from congestive heart failure and early onset dementia has been an emotional experience. I never dreamed how hard it would be. My parents, and my one grandparent who lived into my adult years, all died suddenly.
I've had friends die but nothing could have prepared me for this.
I just hope my brother in law will cope with it OK, because I just don't know how to support him, and I barely have enough strength to support myself.
Next week, we will have to tell my brother in law, who is autistic, that his mother will not be coming home from her recent hospitalizations and stints in rehab. Instead, she is going to be admitted into skilled nursing.
Three Emergency Department visits in five weeks. A good reason why I have not been posting.
Today, she couldn't even remember that she had rehab. All she could remember is that she was exhausted because "they kept taking me out of bed".
I don't know how my brother in law will react, but I have a feeling he's already figured it out in his mind. Us telling him will only make it official.
We've been told we have to be direct with him - not to use any euphemisms, as they would only confuse him.
Hoping I will have enough energy to report how the "big reveal" went.
Watching my mother in law fade away from congestive heart failure and early onset dementia has been an emotional experience. I never dreamed how hard it would be. My parents, and my one grandparent who lived into my adult years, all died suddenly.
I've had friends die but nothing could have prepared me for this.
I just hope my brother in law will cope with it OK, because I just don't know how to support him, and I barely have enough strength to support myself.
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.
Why?
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.
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.
Why?
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.
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