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.
Friday, March 30, 2018
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.
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.
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.
Friday, December 22, 2017
Dear Santa #FridayReflections
Dear Santa:
Oh, if only you were real. I would have so much to ask you for.
I would ask that we humans treat each other fairly and with dignity.
I would ask that our health system be fixed. Last week, I saw firsthand how dysfunctional it can be.
I would ask for housing suitable for my autistic brother in law. I would ask for a system helping those with disabilities that was easy to manuver and really did do right by the people who depend on that system.
And, Santa, while you are at it, how about peace and plenty for us all?
I don't ask for too much, do I?
If only I had the time and energy to write about the events of the last week, Santa. But for now, I am setting it aside, and getting a good night's sleep.
Join Sanch Vee and others for #FridayReflections, and see what we are asking Santa for.
Oh, if only you were real. I would have so much to ask you for.
I would ask that we humans treat each other fairly and with dignity.
I would ask that our health system be fixed. Last week, I saw firsthand how dysfunctional it can be.
I would ask for housing suitable for my autistic brother in law. I would ask for a system helping those with disabilities that was easy to manuver and really did do right by the people who depend on that system.
And, Santa, while you are at it, how about peace and plenty for us all?
I don't ask for too much, do I?
If only I had the time and energy to write about the events of the last week, Santa. But for now, I am setting it aside, and getting a good night's sleep.
Join Sanch Vee and others for #FridayReflections, and see what we are asking Santa for.
Friday, December 15, 2017
Expecting the Unexpected Once Again
My mother in law was taken to the ER yesterday, and hospitalized.
So the day that my brother in law, "Bil", may face living without his mother gets closer and closer.
For right now, the doctors have several mysteries to solve, and we are awaiting the results of tests, so I will keep this brief, and blog more later.
So the day that my brother in law, "Bil", may face living without his mother gets closer and closer.
For right now, the doctors have several mysteries to solve, and we are awaiting the results of tests, so I will keep this brief, and blog more later.
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