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.
Friday, June 15, 2018
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.
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.
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.
Well....
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.
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.
Well....
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.
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.
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.
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.
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.
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