Today, on #FridayReflections, we have 10 minutes of free writing.
No editing.
Walking on the high wire.
Let me tell you about something that happened the other day. I was in the building where I work, and someone flagged me down.
"I saw you at the XYZ meeting. Are you doing the Front Door?"
I was taken aback a minute. But then I remembered what she was asking, after she told me "I was at that meeting, too. I was sitting in the back, and you were sitting (where I was sitting)." Funny how that jogged my memory. And then, I certainly did remember.
What that meeting was about was finding out something about a self determination program. It may well be that eventually, all people with disabilities in New York State will be funneled through that program. Instead of having others set up programs, the disabled person is basically given a budget and told to hire their own people. You need to keep track of hours. In fact, if you find out that the provider of services is not doing their job properly, and you don't immediately speak out, you (the disabled person, or the advocate) may be committing Medicaid fraud.
Anyway. She asked if I had signed "Bil", my developmentally disabled brother in law, up for that program. I said no.
This is what she told me. She has two children. One is not disabled. The other one has serious medical issues. And she's been having some trouble getting services. But she hasn't signed up yet, either.
Sometimes I think the pendulum has swung too far. At one time, disabled people were treated as second or third class citizens, or even as little children, even if their disability didn't affect their mental functioning. The "People First" movement has been a blessing to many of those people, who can now manage their affairs, with supports.
But then there are the other people. The medically fragile. The intellectually challenged. Under many of those programs, they still have to make the same decisions as those without cognitive disabilities. Or, they can be like Bil, in his late 50's, and never having had to take charge of his life before.
You just can't be thrown, if I can use an expression, into the deep end of the pool, with out having had swimming lessons. Good luck with that.
I fear for Bil in the coming years.
What if, one day, he ends up with no family to advocate for him? The two brothers in his life are both older than him.
One day, we may look back on these days.
And with that, I finally want to say that I still am not sure what direction I want to take this blog in. I may blog for the rest of October, although I am participating in several challenges with my main blog.
If I stop publishing, I will let you, my readers, know.
(end of 10 minute free write).
Join Sanch Vee and other bloggers at #FridayReflections.
Showing posts with label future planning. Show all posts
Showing posts with label future planning. Show all posts
Friday, September 29, 2017
Sunday, December 25, 2011
Merry Christmas With the Family
Today, we will be together with relatives of my husband's (including Bil) for Christmas.
Bil's MSC (Medicaid Service Coordinator) reports that everything is going well in his "other life" at the local ARC, where he participates in a sheltered workshop work environment. His last annual review, which my mother in law participated in by phone, went well.
We are waiting for the decision on if his Medicaid will be extended for another year. With the budget cuts, we can only hope that outcome is favorable.
Now we can only hope that government programs don't continue to be cut. AND that we (it may be "me" as all the siblings seem so afraid of bringing this up) can convince my mother in law that Bil needs to live away from home, and this needs to be done before she dies (which we hope isn't for a long time but one never knows.) SO frustrating!!!!
I think Bil enjoys these family gatherings a lot. And that doesn't have to end if he lives away from home!
But I will put my frustration aside for one day and enjoy the day.
Bil's MSC (Medicaid Service Coordinator) reports that everything is going well in his "other life" at the local ARC, where he participates in a sheltered workshop work environment. His last annual review, which my mother in law participated in by phone, went well.
We are waiting for the decision on if his Medicaid will be extended for another year. With the budget cuts, we can only hope that outcome is favorable.
Now we can only hope that government programs don't continue to be cut. AND that we (it may be "me" as all the siblings seem so afraid of bringing this up) can convince my mother in law that Bil needs to live away from home, and this needs to be done before she dies (which we hope isn't for a long time but one never knows.) SO frustrating!!!!
I think Bil enjoys these family gatherings a lot. And that doesn't have to end if he lives away from home!
But I will put my frustration aside for one day and enjoy the day.
Sunday, September 26, 2010
Here We Go Again Part 1,849
I know, I haven't posted in a while. Things have been a bit hectic in another part of my life, with some associated deadlines. But here I am again.
Our visit last week with Bil and Mil went OK. But in one way I'm still....not seething, but rather, seeking to find a way around this.
The day Mil dies (or has a major stroke or other sudden event-and she's had one small stroke again) we are going to be in a lot of trouble. We do have HIPAA releases (my spouse does, anyway, which is all that matters) signed so Bil's primary care doctor can speak to us. But we don't have anything else. We can't help him with other medical matters, we have no releases to help him with checking, banking, paying bills or anything else. His MSC (Medicaid Service Coordinator) has been seriously ill, and we suspect she has missed visits, with no one else at the organization he is a client of taking up the slack. We have no guardianship papers on Bil, no representative payee and I am not even sure which way we should be going or who we should be asking. We don't want to spend more money on lawyers.
My Mil basically does what she wants. She's asked me to research things at times then does what she wants to do anyway. I feel like I am not going to research anything else for her.
But that day that Bil is alone in the world without her: THEN WHAT?
I don't know that guardianship is what he needs. But the latest thing that had me a bit upset is that she has a financial advisor and has given him almost everything Bil has, moneywise, to invest. The advisor is quite willing to speak to us, which is good. What it came down to is that there is no way to have us look at Bil's accounts online because my spouse is not a trustee of the trust. We are a bit gunshy about his investing because in a previous investment she received bad advise on (NOT from this advisor) Bil lost a bit of money. And then the next financial advisor rolled this bad investment into another bad investment. So he lost even more money.
She has his money in the stock market, for Pete's sakes, someone who works part time in a sheltered workshop. And she doesn't understand the stock market. That's what I am really concerned about. I don't know if she is getting bad advice AGAIN. And if that is serving Bil at all.
I wish we could convince her we are not "after" anything. She is quite willing, more and more, to ask our help on her own affairs. But mention Bil, and the Great Wall goes up.
Meantime, we'll have no legal ability to help him when "The Big One" hits.
How do you find this kind of stuff out? I should know but I am pulled in so many different directions right now, it is like my mind has turned to mush.
Our visit last week with Bil and Mil went OK. But in one way I'm still....not seething, but rather, seeking to find a way around this.
The day Mil dies (or has a major stroke or other sudden event-and she's had one small stroke again) we are going to be in a lot of trouble. We do have HIPAA releases (my spouse does, anyway, which is all that matters) signed so Bil's primary care doctor can speak to us. But we don't have anything else. We can't help him with other medical matters, we have no releases to help him with checking, banking, paying bills or anything else. His MSC (Medicaid Service Coordinator) has been seriously ill, and we suspect she has missed visits, with no one else at the organization he is a client of taking up the slack. We have no guardianship papers on Bil, no representative payee and I am not even sure which way we should be going or who we should be asking. We don't want to spend more money on lawyers.
My Mil basically does what she wants. She's asked me to research things at times then does what she wants to do anyway. I feel like I am not going to research anything else for her.
But that day that Bil is alone in the world without her: THEN WHAT?
I don't know that guardianship is what he needs. But the latest thing that had me a bit upset is that she has a financial advisor and has given him almost everything Bil has, moneywise, to invest. The advisor is quite willing to speak to us, which is good. What it came down to is that there is no way to have us look at Bil's accounts online because my spouse is not a trustee of the trust. We are a bit gunshy about his investing because in a previous investment she received bad advise on (NOT from this advisor) Bil lost a bit of money. And then the next financial advisor rolled this bad investment into another bad investment. So he lost even more money.
She has his money in the stock market, for Pete's sakes, someone who works part time in a sheltered workshop. And she doesn't understand the stock market. That's what I am really concerned about. I don't know if she is getting bad advice AGAIN. And if that is serving Bil at all.
I wish we could convince her we are not "after" anything. She is quite willing, more and more, to ask our help on her own affairs. But mention Bil, and the Great Wall goes up.
Meantime, we'll have no legal ability to help him when "The Big One" hits.
How do you find this kind of stuff out? I should know but I am pulled in so many different directions right now, it is like my mind has turned to mush.
Friday, August 27, 2010
Betwist and Between
I am "inbetween". Siblings have their support websites. Parents have their support websites. In laws have....well, we make it up as we go along. As our special needs charges sometimes slip through cracks in life and in "the system", well, the in laws do to.
Sometimes it doesn't seem fair. But then I read a story like this one.
I have to respect what my husband was...well he wasn't born into it because Bil is younger than him, but never the less he didn't "sign up". When I married, it was for love, and maybe an understanding because my father was disabled. But I doubt it, I think it was more youth marrying for love and not for what the future might bring.
For what it is worth, Bil will never be able (in my best judgment, and in the judgment of his Medicaid Service Coordinator) to be quite as independent as the author's brother.
Still, the man who wrote that article in the NY Times was able to "step up to the plate" when it was time. I know one day we will get that dreaded phone call, and it will be our time.
Why does planning for that day seem like walking through gluey quicksand?
Sometimes it doesn't seem fair. But then I read a story like this one.
I have to respect what my husband was...well he wasn't born into it because Bil is younger than him, but never the less he didn't "sign up". When I married, it was for love, and maybe an understanding because my father was disabled. But I doubt it, I think it was more youth marrying for love and not for what the future might bring.
For what it is worth, Bil will never be able (in my best judgment, and in the judgment of his Medicaid Service Coordinator) to be quite as independent as the author's brother.
Still, the man who wrote that article in the NY Times was able to "step up to the plate" when it was time. I know one day we will get that dreaded phone call, and it will be our time.
Why does planning for that day seem like walking through gluey quicksand?
Sunday, August 22, 2010
Bil at the Lake
My mother in law, sister in law, Bil, other brother in law and his wife, and my husband spent the afternoon at the brother in law's lake house in Pennsylvania. A good time, I think, was had by all.
It's a lot of work, this lake house, for my brother in law and his wife, but she loves to entertain. She talked about possibly having my mother in law up again in September.
As I expected, Bil occupied himself at the lake by watching the Weather Channel. My other brother in law's wife, who is very sociable and outgoing, tried to engage Bil a couple of times without success. She didn't (to my surprise) ask Bil to help prepare dinner, which she has on other occasions. She really does a good job in trying to draw Bil into learning new skills.
My mother in law helped chop vegetables for a salad. She talked a bit about how lonely she was-her next door neighbor, (a widow who grew up about 20 years and a mile from where I grew up) who is also a good friend, occupies a lot of time with her family. This has always been the case but my mother in law is becoming more and more dependent on her-to help her drive places, and so forth. The shame is, once of her nieces lives only a couple of miles away but with 3 busy children, hardly even says "hello" to my mother in law.
And yet this niece's aunt- my mother in law's sister and, until she died a couple of years ago, this woman was taken care of by my mother in law. (there were three sons but two of the three hardly paid any attention to their mother. How sad.) My mother in law took her sister shopping, to almost all of her appointments, helped her with some light personal care and so forth. And now....nothing in return. It's really sad. I pray I don't suffer a similar fate.
At any rate my mother in law treated us to some cookies which, she admitted somewhat sheepishly, cost her $18 a pound. She doesn't have that kind of money! But she can't break the habit of all those years when her husband was alive and she (after a childhood of poverty) finally did have some money.
We ate dinner outside and Bil, after eating, went back to the TV as is his habit-but to my surprise came outside a few minutes later. He sat apart from us but he is always watching-it would be a little creepy, honestly, if you did not know him. Again, you never know what is in his thoughts.
The future planning thing has stalled out somewhat. We need to get back on track, but some immediate family issues in our family are hindering it. Ah, this juggling act. Ain't it wonderful.
It's a lot of work, this lake house, for my brother in law and his wife, but she loves to entertain. She talked about possibly having my mother in law up again in September.
As I expected, Bil occupied himself at the lake by watching the Weather Channel. My other brother in law's wife, who is very sociable and outgoing, tried to engage Bil a couple of times without success. She didn't (to my surprise) ask Bil to help prepare dinner, which she has on other occasions. She really does a good job in trying to draw Bil into learning new skills.
My mother in law helped chop vegetables for a salad. She talked a bit about how lonely she was-her next door neighbor, (a widow who grew up about 20 years and a mile from where I grew up) who is also a good friend, occupies a lot of time with her family. This has always been the case but my mother in law is becoming more and more dependent on her-to help her drive places, and so forth. The shame is, once of her nieces lives only a couple of miles away but with 3 busy children, hardly even says "hello" to my mother in law.
And yet this niece's aunt- my mother in law's sister and, until she died a couple of years ago, this woman was taken care of by my mother in law. (there were three sons but two of the three hardly paid any attention to their mother. How sad.) My mother in law took her sister shopping, to almost all of her appointments, helped her with some light personal care and so forth. And now....nothing in return. It's really sad. I pray I don't suffer a similar fate.
At any rate my mother in law treated us to some cookies which, she admitted somewhat sheepishly, cost her $18 a pound. She doesn't have that kind of money! But she can't break the habit of all those years when her husband was alive and she (after a childhood of poverty) finally did have some money.
We ate dinner outside and Bil, after eating, went back to the TV as is his habit-but to my surprise came outside a few minutes later. He sat apart from us but he is always watching-it would be a little creepy, honestly, if you did not know him. Again, you never know what is in his thoughts.
The future planning thing has stalled out somewhat. We need to get back on track, but some immediate family issues in our family are hindering it. Ah, this juggling act. Ain't it wonderful.
Sunday, July 11, 2010
Support our Military-End Wait Lists
Support our military. Make it more than just empty words.
There is a wonderful video on You Tube about waiting lists.
Should you spend the 5 minutes to look at it? Yes. If, for no other reason than to support our military. I would bet that, disproportionally, they bear this burden more than the rest of us. But all families with disabled members (military or not) do.
I belonged, for several years, to a troop support organization (now disbanded). We sent monthly "care packages" to troops in both Iraq and Afghanistan. Our head person got to know a lot of the troops when they came home. She even went down to Alabama to visit some families (for whatever reason, at one point we were supplying several National Guard and other military units from Alabama.)
One of these families had a teenage son with severe disabilities.
The sad and sorry truth was that every time they had to move due to a duty station change he went down to the bottom of the new state's list. Again and again and again. And, he was at the mercy of each new state for educational services. Some may have been good. My guess was, a lot weren't. It was the luck of the draw.
Why should that be for military families whose members are risking their lives every day?
And better yet:
Why should it be for ANYONE?
There is a wonderful video on You Tube about waiting lists.
Should you spend the 5 minutes to look at it? Yes. If, for no other reason than to support our military. I would bet that, disproportionally, they bear this burden more than the rest of us. But all families with disabled members (military or not) do.
I belonged, for several years, to a troop support organization (now disbanded). We sent monthly "care packages" to troops in both Iraq and Afghanistan. Our head person got to know a lot of the troops when they came home. She even went down to Alabama to visit some families (for whatever reason, at one point we were supplying several National Guard and other military units from Alabama.)
One of these families had a teenage son with severe disabilities.
The sad and sorry truth was that every time they had to move due to a duty station change he went down to the bottom of the new state's list. Again and again and again. And, he was at the mercy of each new state for educational services. Some may have been good. My guess was, a lot weren't. It was the luck of the draw.
Why should that be for military families whose members are risking their lives every day?
And better yet:
Why should it be for ANYONE?
Tuesday, June 8, 2010
Questions with No Answers-So Where Do You Turn?
My recent visit, with husband, to Bil and my mother in law was most interesting.
Right now I have one question that I don't have an answer to.
Are there any financial advisors out there that truly want to help people? If there are, I would dearly love to find you.
I'll try to put this briefly. (that's hard, for me!)
Bil has worked for many years in a sheltered workshop environment, and saved his money.
Some years ago someone at a bank talked my mil into buying a variable annuity for him. He was only in his 40's when she made this purchase for him.
Then, several years later, a financial advisor talked her into exchanging that annuity for another variable annuity.
Now that person isn't in the business any more. Now, the present one wants her to surrender the annuity and put the proceeds into a brokerage acount. He says they will use only conservative investments.
It would seem this annuity has lost big in the stock market. Planner #3 says the annuity has limited funds, and there are heavy fees involved. It's no wonder. I know little about this product and my research reveals it is a complex product that may not have been a suitable investment for a man with autism. Instead, she trusted someone at her bank to tell her what was best. Like she trusted the second advisor, who left the field soon after selling her the second annuity (I believe she went to work for a radio station). And now planner #3, who has filled the void-well maybe he has Bil's best interests at heart.
Or maybe he just wants to make a buck too. Although one thing in his favor is, he says he is fee only - so I may have some confidence that this man isn't just trying to make another sale for the sake of commission.
My husband talked to him today over the phone, at the request of my mil.
So now this burden shifts to us...where in a way it should be. So....
How do we know what will be best for Bil? Where do you get information like this?
All I know is-he has lost money he will need to live from one day, and I don't know how to do what is best for him now.
Now what? I don't think the NY Insurance Department will be of any help. But where are all their laws they have to protect consumers? Where were they for Bil? For Bil, who has no idea what has happened with his money.
Right now I have one question that I don't have an answer to.
Are there any financial advisors out there that truly want to help people? If there are, I would dearly love to find you.
I'll try to put this briefly. (that's hard, for me!)
Bil has worked for many years in a sheltered workshop environment, and saved his money.
Some years ago someone at a bank talked my mil into buying a variable annuity for him. He was only in his 40's when she made this purchase for him.
Then, several years later, a financial advisor talked her into exchanging that annuity for another variable annuity.
Now that person isn't in the business any more. Now, the present one wants her to surrender the annuity and put the proceeds into a brokerage acount. He says they will use only conservative investments.
It would seem this annuity has lost big in the stock market. Planner #3 says the annuity has limited funds, and there are heavy fees involved. It's no wonder. I know little about this product and my research reveals it is a complex product that may not have been a suitable investment for a man with autism. Instead, she trusted someone at her bank to tell her what was best. Like she trusted the second advisor, who left the field soon after selling her the second annuity (I believe she went to work for a radio station). And now planner #3, who has filled the void-well maybe he has Bil's best interests at heart.
Or maybe he just wants to make a buck too. Although one thing in his favor is, he says he is fee only - so I may have some confidence that this man isn't just trying to make another sale for the sake of commission.
My husband talked to him today over the phone, at the request of my mil.
So now this burden shifts to us...where in a way it should be. So....
How do we know what will be best for Bil? Where do you get information like this?
All I know is-he has lost money he will need to live from one day, and I don't know how to do what is best for him now.
Now what? I don't think the NY Insurance Department will be of any help. But where are all their laws they have to protect consumers? Where were they for Bil? For Bil, who has no idea what has happened with his money.
Thursday, May 13, 2010
The Saga of the Cell Phone
We knew my mother in law had a cell phone. We knew her only daughter also had a phone on the same account, on a family plan.
We had no idea she was paying over $135. a month for these two phones, until we visited a couple of weeks ago.
When we came, we saw an "overnight mail" box from AT&T. My mother in law explained her two year contract was renewing and AT&T told her she was "eligible for an upgrade". The phone store she had gotten her last phone from had gone out of business. The "helpful customer service rep" she called told her she could handle the "upgrade", said they would overnight a phone to her (which they did).
Well, just before we were supposed to leave, the rest of the story came out. Just like a person visiting a doctor who leaves the real problem for just as he is leaving, so did my mother in law hit us with the "rest of the story" as she brought out her bill. The $135. bill. And, oh by the way, announced "she was running out of money." How she had told "the helpful rep, who was so nice to me" that she couldn't afford the plan, and the rep took "$100 off her first bill."
Did she have her renewal letter anymore? My husband wanted to see it. Well no, she had thrown it out.
I got on the phone with AT&T. We use TracFone so aren't familiar with cell phone plans but I knew there were usually very high cancellation fees. Still it was worth a shot to call, in case AT&T had Sunday customer service.
They had and I listened to a voicemail menu, choosing a department for cancelling service. I figured that rep would have authority to do something to lower her bill. If we couldn't, we would cancel.
The rep I got on the phone said because they had sent a phone out to my mother in law, well, the 2 year plan was renewed and it would be $175. to cancel. The rep offered some options, including a prepaid phone. They could keep their phones but not the numbers. While I was on hold I recommended she take the cancellation and run-it would be less than 2 months of bills. Both her and my sister in law balked. My sister in law wanted to keep her number.
I asked my mother in law how much she used the phone-only for emergencies, she replied. So back to the rep. After a very long conversation the rep agreed they both were using the phones for about 20-25 minutes a month and then after even more being put on hold agreed to rewrite the plan to a 50 minute a month plan, for a lot less money. However, she couldn't tell me exactly how much "because each state has different fees". True, but I think that was bogus, too.
Wonderful how cell phone companies (among others) take advantage of seniors. I wonder where in the fine print it announced that sending out the new phone (even without activating it) meant the new contract started.
While I was on hold another time (this rep kept "running back to her manager", which I think was bogus-but whatever) my mother in law puts her oil bill in front of me and asks me to look at that!
Well, I won't go into the sad and sorry details but the cell phone story isn't over. And, it still isn't activated.
And, there is still the oil bill. That will have to wait for our next visit.
We have to get a handle on this, and soon. She has to open up to us instead of springing last minute surprises. But we are now forewarned, and prepared for our next visit later this month. Will she allow us to help her? Or will she keep sliding into I don't know what and expect us to bail her out when it is too late.
I hope she will allow us to help her.
We had no idea she was paying over $135. a month for these two phones, until we visited a couple of weeks ago.
When we came, we saw an "overnight mail" box from AT&T. My mother in law explained her two year contract was renewing and AT&T told her she was "eligible for an upgrade". The phone store she had gotten her last phone from had gone out of business. The "helpful customer service rep" she called told her she could handle the "upgrade", said they would overnight a phone to her (which they did).
Well, just before we were supposed to leave, the rest of the story came out. Just like a person visiting a doctor who leaves the real problem for just as he is leaving, so did my mother in law hit us with the "rest of the story" as she brought out her bill. The $135. bill. And, oh by the way, announced "she was running out of money." How she had told "the helpful rep, who was so nice to me" that she couldn't afford the plan, and the rep took "$100 off her first bill."
Did she have her renewal letter anymore? My husband wanted to see it. Well no, she had thrown it out.
I got on the phone with AT&T. We use TracFone so aren't familiar with cell phone plans but I knew there were usually very high cancellation fees. Still it was worth a shot to call, in case AT&T had Sunday customer service.
They had and I listened to a voicemail menu, choosing a department for cancelling service. I figured that rep would have authority to do something to lower her bill. If we couldn't, we would cancel.
The rep I got on the phone said because they had sent a phone out to my mother in law, well, the 2 year plan was renewed and it would be $175. to cancel. The rep offered some options, including a prepaid phone. They could keep their phones but not the numbers. While I was on hold I recommended she take the cancellation and run-it would be less than 2 months of bills. Both her and my sister in law balked. My sister in law wanted to keep her number.
I asked my mother in law how much she used the phone-only for emergencies, she replied. So back to the rep. After a very long conversation the rep agreed they both were using the phones for about 20-25 minutes a month and then after even more being put on hold agreed to rewrite the plan to a 50 minute a month plan, for a lot less money. However, she couldn't tell me exactly how much "because each state has different fees". True, but I think that was bogus, too.
Wonderful how cell phone companies (among others) take advantage of seniors. I wonder where in the fine print it announced that sending out the new phone (even without activating it) meant the new contract started.
While I was on hold another time (this rep kept "running back to her manager", which I think was bogus-but whatever) my mother in law puts her oil bill in front of me and asks me to look at that!
Well, I won't go into the sad and sorry details but the cell phone story isn't over. And, it still isn't activated.
And, there is still the oil bill. That will have to wait for our next visit.
We have to get a handle on this, and soon. She has to open up to us instead of springing last minute surprises. But we are now forewarned, and prepared for our next visit later this month. Will she allow us to help her? Or will she keep sliding into I don't know what and expect us to bail her out when it is too late.
I hope she will allow us to help her.
Wednesday, May 12, 2010
The Rough Days Ahead
My mother in law is having more medical tests tomorrow to try to scope out why she is having mobility problems, from her latest fall.
Bil....well, how can you get him to realize his mother is no longer a well oiled machine that exists to serve his needs? Harsh? I think he sees her in that way. He knows she goes to the hospital to get a biopsy (a week ago) and all he cares about is that he gets to go out to lunch.
Another time recently she was very tired and in a lot of obvious (to us) pain and Bil wanted someone to take him out for ice cream. My husband told him "no". (we were very tired also). He has to know that sometimes the answer is "no."
And now, to top it off, it is time for the elephant in the room to trumpet. I fear that she is running out of money (from a couple of comments she made right before we left on our last visit.) That's something she's never wanted to talk about, so I fear if she has suddenly mentioned it, it's worse than we think.
Housekeeper...snow removal...lawncare...none of that is cheap where she lives.
We have to make some effort to convince her her family should review some of her finances (meaning my husband and his two non-disabled siblings.) It isn't a matter of her pride. If she truly values the future of her disabled son she has to allow us to see her expenses, and figure out what can be done. (I am going to try to write more on this in my next post-if I remember).
It is going to be an unpleasant process to try to convince her that this has to be done. She may end up as a cautionery tale of what happens when a spouse (hers) dies without adequate life insurance. Plus, while she called some of us cheap, we were watching budgets...something she perhaps should have been doing more of. She is a naturally generous person but you just can't be as generous on a widow's pension.
But finger pointing won't solve anything. I just hope she will open up to us so we can see what her financial situation is. And, in so doing, how we can safeguard Bil's future.
Bil....well, how can you get him to realize his mother is no longer a well oiled machine that exists to serve his needs? Harsh? I think he sees her in that way. He knows she goes to the hospital to get a biopsy (a week ago) and all he cares about is that he gets to go out to lunch.
Another time recently she was very tired and in a lot of obvious (to us) pain and Bil wanted someone to take him out for ice cream. My husband told him "no". (we were very tired also). He has to know that sometimes the answer is "no."
And now, to top it off, it is time for the elephant in the room to trumpet. I fear that she is running out of money (from a couple of comments she made right before we left on our last visit.) That's something she's never wanted to talk about, so I fear if she has suddenly mentioned it, it's worse than we think.
Housekeeper...snow removal...lawncare...none of that is cheap where she lives.
We have to make some effort to convince her her family should review some of her finances (meaning my husband and his two non-disabled siblings.) It isn't a matter of her pride. If she truly values the future of her disabled son she has to allow us to see her expenses, and figure out what can be done. (I am going to try to write more on this in my next post-if I remember).
It is going to be an unpleasant process to try to convince her that this has to be done. She may end up as a cautionery tale of what happens when a spouse (hers) dies without adequate life insurance. Plus, while she called some of us cheap, we were watching budgets...something she perhaps should have been doing more of. She is a naturally generous person but you just can't be as generous on a widow's pension.
But finger pointing won't solve anything. I just hope she will open up to us so we can see what her financial situation is. And, in so doing, how we can safeguard Bil's future.
Tuesday, April 13, 2010
Retirement with a Brother in Law with Autism?
Rant time.
Let's say we retired to....well, somewhere else. Let's say in North Carolina. Or Georgia. Or Florida. Or even if we could afford to be snowbirds. Which we probably could not afford.
Disclsaimer: I am far from ready to retire. And, I don't know if I would want to move Bil if we did move elsewhere.
It's bad enough, though, thinking that we may never be able to truly retire, because of choices my mother in law made. Without ever consulting us.
My mother in law made the choice to have Bil live with her. a couple of years ago his name came up on something called the NYS Cares List and she refused to move him.
I am not sure she is starting to regret it, but the last two times we have visited, she has mentioned a relative who says "you aren't alone, you have Bil" and she wonders that this relative thinks that Bil is true company for her.
But more than that, I resent that she never had any conversation with her chhildren about her expectations...or wishes, concerning us.
It's one thing making a decision for yourself but another for making decisions for your adult children.
When my husband thinks about having "that discussion" with her, the words stick in his throat.
We know Bil has a Special Needs Trust, with money saved over the years. But I have no way of knowing it is enough.
Bil works in a sheltered workshop, so it isn't like he's going to be able to chip in that much.
We don't know what kind of housing situation will exist via NYS Cares or other NY programs when he finally needs it. Again, those words stick in the throat.
We don't know what the pending budget cuts will mean for him. Or what hoops we'd have to jump through to get him benefits in a new state. So right now I'll just worry about where he is now.
It is hard to have any kind of conversation with his Medicaid Service Coordinator. If we call she runs right to my mother in law and gets her upset. It's like playing a game of "telephone" (the one where a group of children stand in a line. One whispers a message to the next, and on down the road, and guaranteed the person at the end has heard something totally different than the person who started the message intended.
One time we said we wanted to talk about budget cuts and the next thing you know my mother in law is calling, wondering why we called the Medicaid Service Coordinator about Bil's finances.
Why does the MSC run to her? Isn't Bil her client? My mother in law isn't even his guardian. And that's another thing. What legal hoops will we have to jump through to help Bil pay bills, to get medical care for him?
At least now we have met his doctor, and we signed HIPAA releases while he was at his appointment. My mother in law said "Bil will sign the releases" and he actually did so. Good thing, because if it was in his mind to resist, it would have been an uphill struggle.
One thing is for sure-we've been distracted with things in our own lives (health concerns, etc.) that we haven't kept on top of things the way we should have. I'm afraid the only thing that will focus us is the day we get "that" phone call. You know, the one that will force us to think about Bil.
Can't let things drift. Can't.....if we ever hope to retire. We have to take charge here, somehow.
Let's say we retired to....well, somewhere else. Let's say in North Carolina. Or Georgia. Or Florida. Or even if we could afford to be snowbirds. Which we probably could not afford.
Disclsaimer: I am far from ready to retire. And, I don't know if I would want to move Bil if we did move elsewhere.
It's bad enough, though, thinking that we may never be able to truly retire, because of choices my mother in law made. Without ever consulting us.
My mother in law made the choice to have Bil live with her. a couple of years ago his name came up on something called the NYS Cares List and she refused to move him.
I am not sure she is starting to regret it, but the last two times we have visited, she has mentioned a relative who says "you aren't alone, you have Bil" and she wonders that this relative thinks that Bil is true company for her.
But more than that, I resent that she never had any conversation with her chhildren about her expectations...or wishes, concerning us.
It's one thing making a decision for yourself but another for making decisions for your adult children.
When my husband thinks about having "that discussion" with her, the words stick in his throat.
We know Bil has a Special Needs Trust, with money saved over the years. But I have no way of knowing it is enough.
Bil works in a sheltered workshop, so it isn't like he's going to be able to chip in that much.
We don't know what kind of housing situation will exist via NYS Cares or other NY programs when he finally needs it. Again, those words stick in the throat.
We don't know what the pending budget cuts will mean for him. Or what hoops we'd have to jump through to get him benefits in a new state. So right now I'll just worry about where he is now.
It is hard to have any kind of conversation with his Medicaid Service Coordinator. If we call she runs right to my mother in law and gets her upset. It's like playing a game of "telephone" (the one where a group of children stand in a line. One whispers a message to the next, and on down the road, and guaranteed the person at the end has heard something totally different than the person who started the message intended.
One time we said we wanted to talk about budget cuts and the next thing you know my mother in law is calling, wondering why we called the Medicaid Service Coordinator about Bil's finances.
Why does the MSC run to her? Isn't Bil her client? My mother in law isn't even his guardian. And that's another thing. What legal hoops will we have to jump through to help Bil pay bills, to get medical care for him?
At least now we have met his doctor, and we signed HIPAA releases while he was at his appointment. My mother in law said "Bil will sign the releases" and he actually did so. Good thing, because if it was in his mind to resist, it would have been an uphill struggle.
One thing is for sure-we've been distracted with things in our own lives (health concerns, etc.) that we haven't kept on top of things the way we should have. I'm afraid the only thing that will focus us is the day we get "that" phone call. You know, the one that will force us to think about Bil.
Can't let things drift. Can't.....if we ever hope to retire. We have to take charge here, somehow.
Wednesday, February 24, 2010
Future Planning Part 1-Cautionery Tale
Planning for the future. Most of us are guilty of slacking off on this. We were no exception.
Over the years, we asked a number of times "what about bil"? And my father in law responded "everything is taken care of". He really didn't want to discuss it. He didn't tell....and we didn't pursue the asking part. Shame on us.
My father in law died 2 weeks after retiring. He left a handwritten will and a small amount of life insurance. (what did he do for a living? Well, he was in the insurance industry. So never "assume".) He had a company pension. But he had not taken the pension option that would have given my mother in law a survivor benefit because he wanted the higher pension while he was alive. Too bad he didn't live to see it.
But worse: He had never made any attempt to get bil on Medicaid. Why? Because he didn't believe in big government. (As an aside, you the reader may be asking why it was so important that bil had gotten on Medicaid. Well, he would have become eligible for quite a number of services here in our home state of NY where being on Medicaid was a requirement for eligibility. This situation may exist in other states too, but I only know about NY.)
When we met with the local ARC, where bil had been at a sheltered workshop all those years, we found out that he was the only client at that job that wasn't on Medicaid.
It would have helped my mother in law too, because by that time she was struggling to pay for her medications, and for his. She and Dad had worked hard all their lives. They didn't turn down Social Security or Medicare, why was this different?
We finally got bil on Medicaid, but it took years. And he isn't out of the woods, with all the NY budget cuts. Who know what the future will bring-because of lack of planning, and us not being assertive enough about our concerns.
Over the years, we asked a number of times "what about bil"? And my father in law responded "everything is taken care of". He really didn't want to discuss it. He didn't tell....and we didn't pursue the asking part. Shame on us.
My father in law died 2 weeks after retiring. He left a handwritten will and a small amount of life insurance. (what did he do for a living? Well, he was in the insurance industry. So never "assume".) He had a company pension. But he had not taken the pension option that would have given my mother in law a survivor benefit because he wanted the higher pension while he was alive. Too bad he didn't live to see it.
But worse: He had never made any attempt to get bil on Medicaid. Why? Because he didn't believe in big government. (As an aside, you the reader may be asking why it was so important that bil had gotten on Medicaid. Well, he would have become eligible for quite a number of services here in our home state of NY where being on Medicaid was a requirement for eligibility. This situation may exist in other states too, but I only know about NY.)
When we met with the local ARC, where bil had been at a sheltered workshop all those years, we found out that he was the only client at that job that wasn't on Medicaid.
It would have helped my mother in law too, because by that time she was struggling to pay for her medications, and for his. She and Dad had worked hard all their lives. They didn't turn down Social Security or Medicare, why was this different?
We finally got bil on Medicaid, but it took years. And he isn't out of the woods, with all the NY budget cuts. Who know what the future will bring-because of lack of planning, and us not being assertive enough about our concerns.
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