Like many other states, New York finds itself in the position of having to cut the budget. Our new governor faces some hard decisions in the days ahead.
This is an interesting viewpoint from the view of the "disabled".
I have been remiss in following this developing story. Been somewhat distracted by the aftermath of my mother in law's fall. It could have been so much worse, and we were lucky relatives closer to her (geographically) than us leapt into action and helped out. We will be down this weekend (hopefully) to visit her and Bil. At some point (next month?), I hope we can meet with Bil's Medicaid Service coordinator and find out first hand about cuts in services. But for now, my mother in law will have to take precedence in our thoughts.
Tuesday, January 25, 2011
Sunday, January 23, 2011
The Pattern Continues
Another emergency.....another pattern continues. Like an afghan under construction, each occurrence makes its own pattern in the tapestry this story is weaving.
My mother in law starts her recovery from her latest fall. According to her doctor, the swelling will last perhaps another two weeks, and the pain another few weeks after that.
Bil helps. He helps under the instructions of my mother in law. She asks simple things (bring me this, Bil, hand me this, Bil.) He's helped, I understand, with setting the table with meals, with carrying things, with bringing things to her. However, I know it would be impossible for him to do a lot of things without a lot of training, something we don't have the luxury of time to do (living 150 miles away).
We are fortunate that relatives closer to her than us (mileagewise) have installed a toilet seat with handles, a better grab bar (we'll see more of what they did when we go down-hopefully next weekend, weather permitting) and other things we would not have thought of. These relatives have a lot more experience taking care of their parents (now all deceased) than we have.
The other fortunate thing is that the relatives in question have a good relationship with Bil. They praise him, they talk to him in terms of him showing his love for his Mom by now turning around and being her helper.
What I want to see, though, is that Bil is given all the opportunities to help that he can. My mother in law is fiercely independent and I don't know how she feels about their relationship changing, about the son needing to caretake. We neurotypicals struggle with that change in relationship; how will Mil and Bil deal with it?
And, we know he loves his Mom but how much can we expect of him? Only time will tell.
My mother in law starts her recovery from her latest fall. According to her doctor, the swelling will last perhaps another two weeks, and the pain another few weeks after that.
Bil helps. He helps under the instructions of my mother in law. She asks simple things (bring me this, Bil, hand me this, Bil.) He's helped, I understand, with setting the table with meals, with carrying things, with bringing things to her. However, I know it would be impossible for him to do a lot of things without a lot of training, something we don't have the luxury of time to do (living 150 miles away).
We are fortunate that relatives closer to her than us (mileagewise) have installed a toilet seat with handles, a better grab bar (we'll see more of what they did when we go down-hopefully next weekend, weather permitting) and other things we would not have thought of. These relatives have a lot more experience taking care of their parents (now all deceased) than we have.
The other fortunate thing is that the relatives in question have a good relationship with Bil. They praise him, they talk to him in terms of him showing his love for his Mom by now turning around and being her helper.
What I want to see, though, is that Bil is given all the opportunities to help that he can. My mother in law is fiercely independent and I don't know how she feels about their relationship changing, about the son needing to caretake. We neurotypicals struggle with that change in relationship; how will Mil and Bil deal with it?
And, we know he loves his Mom but how much can we expect of him? Only time will tell.
Tuesday, January 18, 2011
Can a Man With Autism Help His Elderly Parent?
The answer, to our delight, is "yes".
I had the opportunity to chat with a family member who spent a lot of yesterday with my injured mother in law.
When my mother in law had a dizzy spell and fell over the weekend, Bil was in the house. He heard her yelling (it did take him a while as his bedroom was two levels down from where she fell) but he then came and got the phone for her, and she called 911.
The family member also reported that Bil is helping her by fetching objects, and showing (to the extent he can) a degree of concern.
This gives my spouse hope that he would be able to teach Bil to check on his mother if he can make it part of Bil's routine.
Of course, I tend to be a little more pessimistic. Bil did not do any of this under his own volition. She wasn't wearing her medical alarm pendant, so if she had been knocked unconscious, or unable to speak, I still don't know if he would have called 911, or (this sounds harsh but this is how autism can be) if he would have waited until he was really hungry, or if his routine was otherwise somehow disrupted, before reacting.
My mother in law feels she doesn't have to wear her medical alarm if Bil is in the house. She has so much faith in him. I don't doubt they have a very special, almost symbiotic, relationship, But as to trusting that Bil could call 911 unassisted.....
I think that is wrong, and could have a tragic result.
But I am very, very glad that he is helping out under her direction. We are 3 hours away, in the middle of winter, there was a snowstorm last night, and we might not be able to get down right away there if, heaven forbid, something bad happened. I hope she uses his help as much as he can give it. I've been injured in the same way as she has been, and it was no picnic. She needs, and deserves, his help.
I had the opportunity to chat with a family member who spent a lot of yesterday with my injured mother in law.
When my mother in law had a dizzy spell and fell over the weekend, Bil was in the house. He heard her yelling (it did take him a while as his bedroom was two levels down from where she fell) but he then came and got the phone for her, and she called 911.
The family member also reported that Bil is helping her by fetching objects, and showing (to the extent he can) a degree of concern.
This gives my spouse hope that he would be able to teach Bil to check on his mother if he can make it part of Bil's routine.
Of course, I tend to be a little more pessimistic. Bil did not do any of this under his own volition. She wasn't wearing her medical alarm pendant, so if she had been knocked unconscious, or unable to speak, I still don't know if he would have called 911, or (this sounds harsh but this is how autism can be) if he would have waited until he was really hungry, or if his routine was otherwise somehow disrupted, before reacting.
My mother in law feels she doesn't have to wear her medical alarm if Bil is in the house. She has so much faith in him. I don't doubt they have a very special, almost symbiotic, relationship, But as to trusting that Bil could call 911 unassisted.....
I think that is wrong, and could have a tragic result.
But I am very, very glad that he is helping out under her direction. We are 3 hours away, in the middle of winter, there was a snowstorm last night, and we might not be able to get down right away there if, heaven forbid, something bad happened. I hope she uses his help as much as he can give it. I've been injured in the same way as she has been, and it was no picnic. She needs, and deserves, his help.
Monday, January 17, 2011
The Latest Fall
My mother in law has fallen again. She had a dizzy spell in the bathroom, and ended up hurting her ankle. She was taken to the ER, treated, and released.
So now the worry can start again. My husband talked to two family members today. She had someone staying with her yesterday and today. Relatives from about 2 hours away visited her today, and told my "other" brother in law that her ankle was very swollen.
She still has resisted wearing her medical alert pendant. First, she wouldn't wear it at all. Then, after several falls, she claimed she would wear it if she was totally alone, i.e. if Bil was out of the house (at his sheltered workshop job). After this latest, don't know if she will finally come around and wear it, period.
One thing I don't know is if Bil was any help during this latest emergency, or if she called 911 on her own. I suspect the latter because she didn't tell spouse he had called for help. I am sure not sure he ever would although somehow she is convinced he would. Don't know if it is magical thinking or if she knows something we don't.
And I don't know how much Bil will be able to help her while she attempts to recover from this latest injury. Thankfully nothing was broken but I recently recovered from a bad sprain, I'm 25 years younger, I had help, and it was still very painful. For her, it may be impossible.
I don't know if we would be able to go down this weekend. Some of that would be weather dependent. Will have to see how she manages. My sister in law lives about 20 minutes away and for now she will have the major burden.
So now the worry can start again. My husband talked to two family members today. She had someone staying with her yesterday and today. Relatives from about 2 hours away visited her today, and told my "other" brother in law that her ankle was very swollen.
She still has resisted wearing her medical alert pendant. First, she wouldn't wear it at all. Then, after several falls, she claimed she would wear it if she was totally alone, i.e. if Bil was out of the house (at his sheltered workshop job). After this latest, don't know if she will finally come around and wear it, period.
One thing I don't know is if Bil was any help during this latest emergency, or if she called 911 on her own. I suspect the latter because she didn't tell spouse he had called for help. I am sure not sure he ever would although somehow she is convinced he would. Don't know if it is magical thinking or if she knows something we don't.
And I don't know how much Bil will be able to help her while she attempts to recover from this latest injury. Thankfully nothing was broken but I recently recovered from a bad sprain, I'm 25 years younger, I had help, and it was still very painful. For her, it may be impossible.
I don't know if we would be able to go down this weekend. Some of that would be weather dependent. Will have to see how she manages. My sister in law lives about 20 minutes away and for now she will have the major burden.
Saturday, January 15, 2011
Snowed In by an Uncaring Town-Time to Act?
Where my mother in law and Bil live, has been hard hit by snow this winter. They got a foot earlier in the week, 18 inches in the day-after-Christmas storm (the one where we left to go home just as the first flakes started to swirl around) and I think there was a 13 inch storm thrown in there somewhere inbetween. In other words, there is a lot of snow on the ground.
The thing I worry about is them losing power. It happens enough in their area that I've thought about getting them a small generator (although I'm not sure Bil could ever learn to run it.) Before we left that morning after Christmas (knowing we had to run out of there so we could go back to work, 150 miles away, the next morning), we made sure Mom's cell phone was charged. Her medical alarm device, which she refuses to wear, has a battery and we would be called if it runs low. (that has already happened twice.)
The company that cuts her lawn in the summer will tend her walk and her driveway (for a price, of course). Her road is another story. Her house is almost 40 years old and so is the little cul de sac that she lives on. It is on an incline and mil is right at the bottom. The condition of this road is not good. Water comes to the bottom, right in front of her driveway, and freezes into what becomes a pond almost suitable for ice skating. Certainly not suitable for an 83 year old woman and her developmentally disabled son to drive on, so she tries not to go out too much. How the town of Carmel (yes, I am naming you, for shame) lets this go on year after year despite her entreaties....well, they are nice to her on the phone and then nothing much happens.
Guess it's not in their budget.
If she lived a mile away, over the county boarder into Westchester County and the town of Yorktown, I suspect things would be quite different. Both sides of this border are inhabited by what were rural villages when mil moved up there in the 60's but are now NYC bedroom communities - pricey ones, at that. But Westchester and Putnam Counties are quite different, apparently, in how they want to spend their money.
The least they could do, there in Putnam, is pay attention to the plight of....shall I say it? a widow with a developmentally disabled son. So, if mil wants, I will get involved.
If she does, wish me luck.
The thing I worry about is them losing power. It happens enough in their area that I've thought about getting them a small generator (although I'm not sure Bil could ever learn to run it.) Before we left that morning after Christmas (knowing we had to run out of there so we could go back to work, 150 miles away, the next morning), we made sure Mom's cell phone was charged. Her medical alarm device, which she refuses to wear, has a battery and we would be called if it runs low. (that has already happened twice.)
The company that cuts her lawn in the summer will tend her walk and her driveway (for a price, of course). Her road is another story. Her house is almost 40 years old and so is the little cul de sac that she lives on. It is on an incline and mil is right at the bottom. The condition of this road is not good. Water comes to the bottom, right in front of her driveway, and freezes into what becomes a pond almost suitable for ice skating. Certainly not suitable for an 83 year old woman and her developmentally disabled son to drive on, so she tries not to go out too much. How the town of Carmel (yes, I am naming you, for shame) lets this go on year after year despite her entreaties....well, they are nice to her on the phone and then nothing much happens.
Guess it's not in their budget.
If she lived a mile away, over the county boarder into Westchester County and the town of Yorktown, I suspect things would be quite different. Both sides of this border are inhabited by what were rural villages when mil moved up there in the 60's but are now NYC bedroom communities - pricey ones, at that. But Westchester and Putnam Counties are quite different, apparently, in how they want to spend their money.
The least they could do, there in Putnam, is pay attention to the plight of....shall I say it? a widow with a developmentally disabled son. So, if mil wants, I will get involved.
If she does, wish me luck.
Sunday, January 9, 2011
A Lost Chance in February?
We thought that my mother in law might be taking a trip and that we would have an opportunity to have Bil up here to spend some time with.
Now it looks like the trip won't happen.
Last year, my mother in law was able to accompany a niece and her husband, visiting their daughter and her husband in Florida. It was great that she had the company. Both relatives were experienced travelers and arranged for a wheelchair and other accomondations for my mother in law, including early boarding. Bil stayed behind, lived with my brother in law, and we and he and his wife took turns being with Bil. Because of my husband's work hours, Bil never had to spend more than a few hours by himself.
It looked like those same relatives were going to fly out to California in February, to see their son. And, a friend of my mother in laws has been staying with her ailing daughter for several months, only about a 10 minute ride away from the son. It would have been a nice trip for mother-in-law.
What we were hoping for is that Bil could stay with us part of the time. One difficulty would be that we only have one TV, and one cable connection. Bil is used to having his own TV. But he also does a lot of reading and I think we could have worked around this.
But now, it doesn't' look like the trip is going to happen.
Of course, you could ask, why doesn't Bil come up here anyway and give my mother in law some time by herself? I think the reason is, she does not want to be alone. Having Bil there is better than being alone-maybe marginally, but Bil will help her in certain ways: if she asks.
I'm not sure what we would have tried to "work on" with Bil while he was up here, but it would have been a good opportunity for.....something. And at the very least he could have spent time with his two brothers.
Now it looks like the trip won't happen.
Last year, my mother in law was able to accompany a niece and her husband, visiting their daughter and her husband in Florida. It was great that she had the company. Both relatives were experienced travelers and arranged for a wheelchair and other accomondations for my mother in law, including early boarding. Bil stayed behind, lived with my brother in law, and we and he and his wife took turns being with Bil. Because of my husband's work hours, Bil never had to spend more than a few hours by himself.
It looked like those same relatives were going to fly out to California in February, to see their son. And, a friend of my mother in laws has been staying with her ailing daughter for several months, only about a 10 minute ride away from the son. It would have been a nice trip for mother-in-law.
What we were hoping for is that Bil could stay with us part of the time. One difficulty would be that we only have one TV, and one cable connection. Bil is used to having his own TV. But he also does a lot of reading and I think we could have worked around this.
But now, it doesn't' look like the trip is going to happen.
Of course, you could ask, why doesn't Bil come up here anyway and give my mother in law some time by herself? I think the reason is, she does not want to be alone. Having Bil there is better than being alone-maybe marginally, but Bil will help her in certain ways: if she asks.
I'm not sure what we would have tried to "work on" with Bil while he was up here, but it would have been a good opportunity for.....something. And at the very least he could have spent time with his two brothers.
Tuesday, January 4, 2011
Colonoscopy and Colon Hydrotherapy for those with Autism?
I had my colonoscopy today. All went well, and I had only minor side effects (knock on wood). I am still a bit groggy from the sedation and probably am still a little thinking-impaired....what a wonderful time to write one more post on the subject of trying to help a 50-something man through the prep and events I just underwent.
I still think it is going to be a big problem getting Bil "prepped" (i.e. "cleaned out") . From the time I took the noontime pill then started the "vile liquid prep" (I tolerate it OK, but I've never had a problem in gulping mass quantities of liquid at one time) it was about 10 hours total, and, not to be too indelicate here, the later bit of the process is a bit....explosive. (the humor writer Dave Barry has explored this topic in a very funny way-I could never equal him and won't try to.) I did find Pull-Ups wipes (flushable) to be a good alternative to toilet paper, for what it is worth.
By the way, my mother in law has never discussed Bil's digestion with us. We are well aware many people with autism suffer from digestive problems. It does seem to me that Bil seems to have a lot of stomachaches but Mil has never sat down with us - I fear this will be another "surprise" once we are responsible for taking care of his needs. But back to the discussion at hand:
I want to make it clear here that the colonoscopy Bil's doctor has suggested is for screening purposes, not due to any medical condition. But at the same time, a former neighbor of mine was diagnosed with colon cancer when in her mid 30's, she is in remission but let's put it this way: if someone has to choose between colon cancer and a colonoscopy, the choice is clear.
So the thought of denying Bil this valuable screening test because we dread trying to walk him through it is pretty selfish. Still, it doesn't seem there is any material on this subject online and I truly wish there was someone I could talk to who had been through it and had some suggestions on how to prepare Bil for it.
My mother in law hasn't mentioned the colonoscopy recently. But Bil's next physical should be in late March and - I'm sure the doctor will mention it again. So, there really has to be some "better way" to prep him. In thinking of stuff today (having time to think!) I remembered something I had read some months ago about Colon Hydrotherapy. Something "jiggled" in my mind and I remembered something about this service being offered in Scranton, which is about an hour from where we live and maybe 2 hours from where Bil lives at this practice.
This isn't an enema but is a complete cleaning out of the colon using warm and cool water, lasting about 45 minutes to an hour. Of course, I'd probably have to undergo this myself first to be able to prep him for it.
I don't know if my mother in law would even consider something like that (assuming there is something closer to her home, and I have to believe that, as close to NYC as she lives, that there is.) I hope I can remember this if and when the subject comes up again.
I still think it is going to be a big problem getting Bil "prepped" (i.e. "cleaned out") . From the time I took the noontime pill then started the "vile liquid prep" (I tolerate it OK, but I've never had a problem in gulping mass quantities of liquid at one time) it was about 10 hours total, and, not to be too indelicate here, the later bit of the process is a bit....explosive. (the humor writer Dave Barry has explored this topic in a very funny way-I could never equal him and won't try to.) I did find Pull-Ups wipes (flushable) to be a good alternative to toilet paper, for what it is worth.
By the way, my mother in law has never discussed Bil's digestion with us. We are well aware many people with autism suffer from digestive problems. It does seem to me that Bil seems to have a lot of stomachaches but Mil has never sat down with us - I fear this will be another "surprise" once we are responsible for taking care of his needs. But back to the discussion at hand:
I want to make it clear here that the colonoscopy Bil's doctor has suggested is for screening purposes, not due to any medical condition. But at the same time, a former neighbor of mine was diagnosed with colon cancer when in her mid 30's, she is in remission but let's put it this way: if someone has to choose between colon cancer and a colonoscopy, the choice is clear.
So the thought of denying Bil this valuable screening test because we dread trying to walk him through it is pretty selfish. Still, it doesn't seem there is any material on this subject online and I truly wish there was someone I could talk to who had been through it and had some suggestions on how to prepare Bil for it.
My mother in law hasn't mentioned the colonoscopy recently. But Bil's next physical should be in late March and - I'm sure the doctor will mention it again. So, there really has to be some "better way" to prep him. In thinking of stuff today (having time to think!) I remembered something I had read some months ago about Colon Hydrotherapy. Something "jiggled" in my mind and I remembered something about this service being offered in Scranton, which is about an hour from where we live and maybe 2 hours from where Bil lives at this practice.
This isn't an enema but is a complete cleaning out of the colon using warm and cool water, lasting about 45 minutes to an hour. Of course, I'd probably have to undergo this myself first to be able to prep him for it.
I don't know if my mother in law would even consider something like that (assuming there is something closer to her home, and I have to believe that, as close to NYC as she lives, that there is.) I hope I can remember this if and when the subject comes up again.
Monday, January 3, 2011
More on a Possible Colonoscopy
I have started the "chemical" part of my prep - while I wait for it to "kick in" its giving me a chance to think about this vs. Bil.
As anyone who has undergone one of these (it's my second) knows,there are several steps. Some of this was different from the first time.
The early part, the food prep, I think Bil could handle. The way my doctor is doing it, two days before (meaning yesterday) I could not have any fruits or vegetables. I could have meat (surprisingly, he didn't say white meat), bread and rice, pasta. Bil would not have a problem with that. He only eats fruits or vegetables if they are put in front of him. His preferred meat is chicken, so he wouldn't miss red meat.
The "day before" prep is going to be a real problem.
First, there is the "no solid food" rule. But we could probably explain that one. The harder thing will be trying to prepare Bil for the chemical part: the cramping, the uncertainty of when it will kick in, and so forth. And most of all, the vile nature of the liquid you have to drink.
It's going to be a big challenge.
I've read about virtual colonscopies and I don't think they would be the answer-even though I've read that new types are going to be rolled out later this year that Medicare may pay for. The patient still has to undergo the prep, and the sedation (which the new virtual type will avoid) is actually something that Bil would probably need no matter how the exam is done.
So the question becomes: do we try to do this? Or do we deny Bil this valuable exam?
As anyone who has undergone one of these (it's my second) knows,there are several steps. Some of this was different from the first time.
The early part, the food prep, I think Bil could handle. The way my doctor is doing it, two days before (meaning yesterday) I could not have any fruits or vegetables. I could have meat (surprisingly, he didn't say white meat), bread and rice, pasta. Bil would not have a problem with that. He only eats fruits or vegetables if they are put in front of him. His preferred meat is chicken, so he wouldn't miss red meat.
The "day before" prep is going to be a real problem.
First, there is the "no solid food" rule. But we could probably explain that one. The harder thing will be trying to prepare Bil for the chemical part: the cramping, the uncertainty of when it will kick in, and so forth. And most of all, the vile nature of the liquid you have to drink.
It's going to be a big challenge.
I've read about virtual colonscopies and I don't think they would be the answer-even though I've read that new types are going to be rolled out later this year that Medicare may pay for. The patient still has to undergo the prep, and the sedation (which the new virtual type will avoid) is actually something that Bil would probably need no matter how the exam is done.
So the question becomes: do we try to do this? Or do we deny Bil this valuable exam?
Subscribe to:
Posts (Atom)