DD & MIL's Issues

[seriousthistime]

Pat, I just googled "is a guardian responsible for medical bills" and found two websites that say no... but...

www.agingcare.com/Questions/if-legal-guardian-am-I-liable-for-future-medical-bills-162655.htm

www.caring.com/questions/is-guardian-financially-responsible

You should check with your attorney about this.  You may be about to step in a big mess if you don't know your legal rights and responsibilities as a guardian.  If the determining factor is whether you take her as a dependent on your taxes, maybe now is the time to stop doing that.

I would not rely on Google U for legal advice, but it sometimes points us in the right direction and can be a good quick overview.  

[CCL]

Jul 23, 2015 15:39:42 GMT -5 mmhmm said:

Jul 23, 2015 15:03:49 GMT -5 @patstab said:

I can tell you how bad the stress is, I'm losing my mind. I thought today was Friday, had her screaming at me all the way to the

next city, fed her again.

I am losing my hair, its awful and my stomach is killing me. 

I didn't realize till I was almost up there that today is Thursday not Friday, I had just driven a 100 miles for nothing. I had a

newspaper in the back seat and yes this is Thursday.

She was screaming that I wouldn't take her to Korea, etc. I finally told her I just wasn't going period and there was no way

she was forcing me by crying, screaming, and yelling to take her. Yes, I'm still going, if hubby will keep her, just not telling her

till the last minute that I'm going.

I told her when we got home, I hear her do that one more time today and I'm taking a belt to her, that shut her up. She knows

better, my MIL said she was nice the other day the 4 hours I was gone and the minute she saw me turn in she started in. She

jumped me when I came in the door over a doll or something. It's inexcusable. Today mad because she wants to go back to

her friends in Houston. She wants her real mom, she loves me and I won't listen, right after she says she hates me, and on and

on.  She wouldn't have anything to do with them, I tried everything to get her to go to BJ's down there, didn't like the

grouphome or anything so that is not going to fly believe me. 

You know I'm not so sure she can't control this, I think she is partly just mean and going to have her way or else.  I'm going to put

a stop to it one way or another.

By the way I tried the phone number given to me on the private email and all they do is put you in touch with another advocacy group.

They are an advocacy group giving out numbers to other groups.

I don't know your DD, so can't say for sure. It interests me, though, that you get the feeling some of this behavior may be purposeful. It's interesting to me that a couple of glucose tablets will cure her immediately. Temper tantrums aren't normally associated with low blood glucose. Anxiety and irritability are, but the individual usually feels dizzy and weak - too weak to throw a stomping, screaming tantrum. Now, I have no clue how her diagnosis might affect this but it seems an odd reaction to me. I'm wondering if she's not, perhaps, looking to be given a pill. You've said in the past she's fond of taking medication (like wanting the doctor to give her a shot). That's attention-seeking behavior which wouldn't be at all odd for a Williams Syndrome individual.  In other words, I don't think it's meanness as much as it is a control issue (that's if I'm right here). When she's tantruming, she's got you by the short hairs. What happens if you tell her to go to her room and not come into polite company until she's ready to be polite company?

I was thinking the same thing. Have you tried giving her a "pill" of some sort as a placebo to see how she reacts to it?

[mmhmm]

Jul 23, 2015 19:15:09 GMT -5 CCL said:

Jul 23, 2015 15:39:42 GMT -5 mmhmm said:

I don't know your DD, so can't say for sure. It interests me, though, that you get the feeling some of this behavior may be purposeful. It's interesting to me that a couple of glucose tablets will cure her immediately. Temper tantrums aren't normally associated with low blood glucose. Anxiety and irritability are, but the individual usually feels dizzy and weak - too weak to throw a stomping, screaming tantrum. Now, I have no clue how her diagnosis might affect this but it seems an odd reaction to me. I'm wondering if she's not, perhaps, looking to be given a pill. You've said in the past she's fond of taking medication (like wanting the doctor to give her a shot). That's attention-seeking behavior which wouldn't be at all odd for a Williams Syndrome individual.  In other words, I don't think it's meanness as much as it is a control issue (that's if I'm right here). When she's tantruming, she's got you by the short hairs. What happens if you tell her to go to her room and not come into polite company until she's ready to be polite company?

I was thinking the same thing. Have you tried giving her a "pill" of some sort as a placebo to see how she reacts to it?

That's probably not a bad idea, just as a test to see if this is being brought on by blood sugar changes, or if it just might be a control issue. I'd consider it worth a shot. I've heard some say they get very angry when their blood sugar drops but I've never witnessed it under controlled conditions (like the hospital). To be fair, those I've run into who said they went into rages when their blood sugar dropped almost inevitably had some other condition that could be seen to contribute to that. Considering the Williams Syndrome, that could be the case here. It sure would help, though, if Pat could test it with a placebo.

[Pants]

Pat - please PLEASE get your DD a companion so you can have a rest. Yes, you will have to.pay someone, but you need some respite because you sound like you are about to lose it - whatnot healthy for any of you. Place an ad NOW and take time while your DH is home to do some interviews. 

[Blonde Granny]

When DH has a problem with low blood sugar, he starts to sweat and his hands start shaking, his legs also get weak.  It takes more than a little glucose tablet to get it from 50 or 60 back up to 100.  If it drops down into the 20s or 30s, he needs a full glass of 100% juice to get it back up.

I'm kind of with you and others, she's pulling your leg, found your buttons and she's going to use them.

[Works4me]

Jul 23, 2015 14:37:38 GMT -5 Ombud said:

Jul 23, 2015 6:36:54 GMT -5 @patstab said:

I may have to lose the Medicaid and take her to another state to get her in residential for awhile this is just awful. However  if she had medical issues that could bankrupt us as I'm sure as her guardian we would be responsible for, I can't realistically do that.

Works4me is that right? Would she be financially responsible or would they guilt her into believing so?

Entirely guilt manipulation. The trick is to keep funds entirely separate like they have been doing.

[busymom]

I'm so sorry the organization didn't help.

It'd be nice if you lived somewhere that your DD could go work for a few hours every day.  (I wonder if she had a little more structure to each day if that might help?)  We've got a few places around here that allow special needs adults to hold jobs, unfortunately, the best places to work at have waiting lists.  There just aren't enough services for adults with disabilities!

[msventoux]

I take it there's no private respite care centers anywhere in the area?  Here we have some privately run places that are a daycare of sorts for people with all sorts of disabilities.  The ones who are higher functioning have jobs there that they get paid for like emptying wastebaskets in the facility, sweeping the floor, filling copy machines and printers with paper, etc. 

[CCL]

I know you said you tried the placebo as a pain pill, but what about as a sugar pill when she is having a "tantrum"?

Maybe you could try a neighboring state for a short-term respite care facility? Even if you have to pay out-of-pocket it may be worth it to give yourself a break. If it's only a week or two at a time maybe that wouldn't jeopardize the Medicaid benefits?

I'm sorry you are going through all this. There's got to be an answer somewhere.

[Ombud]

@patstab, 2 yrs ago the SSD / SSI cut was going to be 20%. Now it's 19%. But the sad fact is that the fund is running dry. Maybe they should cut back on SSDI payout (not SSI) to what early retirement would be instead of full retirement but guarantee at least SSI rate

The best scenario is to open more placement facilities and increase the amount recepients can keep to keep pace with COLA

I know some will call that warehousing but how much longer will younger working adults shoulder that fiscal burden

[zibazinski]

What's sad is that with the miracles of modern medicine these people live longer but then what? If they outlive their parents who cares for them?

[cronewitch]

Can you look for another family who has a special needs adult to trade services with. If you watch their adult on Tuesday they can watch your DD on Thursday so even if you only do 4-5 hours a week it is a little break.

[zibazinski]

You're in an area, I believe, with no nonsense Amish women. I'd look for one of those. A big one. The kind you might see with a rolling pin and a grim expression. Children pulling nonsense usually behave after a session with one of those because they don't want another session. Not that I'm implying someone to abuse her but someone that looks like they might if she got out of line.

[Pants]

Jul 25, 2015 7:37:17 GMT -5 @patstab said:

Hubby said today he can retire in December if I want him to. But I'm afraid, if we have to start paying for her to go somewhere

then we need for him to keep working, he will do either. But that solves nothing for me, I still have no companionship, noone

to be with.   

Everything I find in this state you have to go through medicad for services, like I told him I haven't even found anything private.

It doesn't help me much to have him home, she is still here to be cared for, and that's what I need to get away from.  But also

she does not need to be here, she needs to be out in the community.

There is a place she used to go in Terre Haute, Happiness Bag Players, I don't know if they will still take people on a daily basis

its affiliated with the university I think. I'm going to look into it while hubby is home and see what they offer. She has refused to

go there, Williams kids don't feel they are mentally challenged like others and don't want to go places like that. The is another

Williams girl in the area and I talked to her mom at length one day. She refuses to go places, sits at home in her room and

eats, and get this she is adopted. Those poor people. They can't do anything with her either.

They seem so normal but they are not and can't do what other people do and it frustrates them to no end so they just can't

fit in anywhere. It's a big problem.

If we bought or rented a house for her and hired someone to live in that's a lot of money. As hubby says no one is going to

have sympathy on that accord because we do have savings but it can sure be spent fast in a situation like that. And we are

not talking a week or month, we are talking years and years. And the amish may be good for caregiving but that's not going

to get her out and about with her peers, that in my opinon is what she needs.

Medicaid is supposed to have her approved for respite after 45 days and its now going on 60.  I'm calling again Monday, I

bet she doesn't get approved.  

I am going to look in Illinois, I thought I found something there, maybe she could go like 3 weeks at a time so she doesn't lose

her Medicaid here.  I just don't know what to do at this point.  As DH said you are going to have to find someplace he can't

well I apparently can't either.

Pat - we know what she needs. What you aren't seeing is what YOU need. You need to get someone in NOW to give you a break while you figure out long-term options. Having someone come hang out with her, take her to movies, etc., isn't a long term plan, but it will help you take care of you so that you can take care of her. Hell, if I were closer I would come do it just to give you a break!!

[sarcasticgirl]

My oldest step brothers has prader willi syndrome and has been in group homes for over 20 years. He is 45 now.
My mom nearly had a mental breakdown trying to take care of him along with the other 4 of us.
For a while he bounced around in state care and private homes. My parents hated the state care. He has been in a few private homes over the years, and has a much more fulfilling life. Not to say they are not without issues. When I was visiting my parents in May, they got a call from a hospital that he had been found and had his stomach pumped. He had run away and somehow got food and had eaten so much it made him ill.
I know you split time between indiana and Texas... My parents live in the burbs of Houston. I can get you some contacts that might help or at least point you in the right direction if you'd like... But again, they'd be based in Texas.

Sent from my HTC One_M8 using proboards

[NastyWoman]

Jul 25, 2015 13:32:24 GMT -5 @patstab said:

She is still on me about going to Korea, I could see that. 

Forgetting about your DD for a moment @patstab, how is your grandson doing? I hope your son is sending you loads of pictures. Do you use skype with them or facetime so you get to see the little guy even while he is so far away?

you can't change DD but don't allow that to interfere with your joy about your DGS! 

[NastyWoman]

Aren't grand babies the best, even if you can't get over to see them whenever you like? 

[Deleted]

*G'kids are wonderful!!* Glad you're getting lots of adorable pics!

www.in-mentor.com/standard/page.aspx?guid=e3429e6d-5d9f-4e08-b554-b7176ea28b9d

Pat, have no idea if this would be of help in finding resources for you, but just thought I'd pass it along...don't know what county you're in so limited in researching.

Glad you're taking a tougher approach w/DD, I think she's completely aware of her negative behavior (proof? the fact she's fine with others) ie; bad tantrums with you. Afterall you're the one who's always with her. Do you give her pills every time she gets out of control? Pavlov's law? As in-trained response?

 I agree with you that she needs activity, whether that be helping you clean and run your household, grocery shopping, putting groceries away, laundry, yard work, walking on a regular basis, I'd start w/around those 4 acres! Physical activities would help her a lot at this point, I believe.

The fact that she's lazy (as you've mentioned) is irrelevant at this point, just don't expect your level of cleanliness to be the bar....whether that means you'll have to re-do things doesn't matter one whit...Just keep her moving. She's obsessing (talking to herself; ranting;etc) may be a trait of her Williams, but also plain boredom from lack of physical/intellectual stimulation. I know you take her to movies and things, but try to develop somewhat of a schedule 5 days/wk. or whenever the two of you are @ home/on property. If you have to go to rent house and sweep/mop/whatever.......take her and put her to work. Yeah, she'll whine/throw fits, etc. but she does that now anyway......at least she'd be getting physically stimulated this way....she'll probably be so tired after a week, she'll be conking out as soon as she hits her bed!

Anyway, just my thoughts...keeping you in my prayers..

Enjoy your DH while he's home with you...

[busymom]

I get it. When you have to be strong for other people for too long, often your own needs come dead last.   I'm glad your DH is home, if only for awhile.

I love your list!  SO true!  As my own DS gets bigger, I'm finding out who my REAL friends & family are.  It's amazing and frankly, sad, how many people "bow out".  The friends who last the longest are the ones who have serious problems of their own at home, whether it's a child with a disability, or one with a mental illness.  Friends who "get it" are solid gold!

Get yourself some well-deserved rest tonight.  For myself, life always seems the worst late at night.  It's easier to be an optimist early in the morning. 

[mollyanna58]

A day at a hotel sleeping sounds wonderful. Maybe there is a place closer to Happiness Bag Players so you don't have to drive all the way home and then back.

[WholeLottaNothin]

Jul 25, 2015 10:37:09 GMT -5 sarcasticgirl said:

My oldest step brothers has prader willi syndrome and has been in group homes for over 20 years. He is 45 now.
My mom nearly had a mental breakdown trying to take care of him along with the other 4 of us.
For a while he bounced around in state care and private homes. My parents hated the state care. He has been in a few private homes over the years, and has a much more fulfilling life. Not to say they are not without issues. When I was visiting my parents in May, they got a call from a hospital that he had been found and had his stomach pumped. He had run away and somehow got food and had eaten so much it made him ill.
I know you split time between indiana and Texas... My parents live in the burbs of Houston. I can get you some contacts that might help or at least point you in the right direction if you'd like... But again, they'd be based in Texas.

Sent from my HTC One_M8 using proboards

My uncle had prader willi syndrome too. He passed away in 2011. He lived in a group home for the last 20 years or so of his life and really blossomed. Pat, I really wish my grandma was still alive to give advice and empathy. He lived at home until he was about 40 and it took a toll on her and the whole family. I know she fought for years for a group home for people with the same syndrome and finally got one but not until a year after my grandfather died. It was a bittersweet victory since they ended up not getting any time together without that stress.

[Deleted]

Yes Pat, I imagine you have tried motivating her incessantly as the years have come and gone...I was more suggesting physical activity to wear her out so she might have less energy to behave negatively...but alas, I now know that you've most likely tried that for decades as well to no avail. That probably only exacerbates the problems, too. I have no answers, except to keep trying to find a place for her as it's time..

Glad you released pent up frustration/anxiety/depression with a good cry, and are feeling better. Also glad Dh is willing to do whatever it is you want him to.

Mmmmm, for ice cream!! (I eat it a lot!) And having it be a pleasant outing...durn right in assuming DD heard your frustration, comprehended it and is acting accordingly...sure sounds as if she is well aware of not only knowing when her father is home, but also when you're at your breaking point. I'm sure it will be calmer waters for the next little while, hoping so anyway..

Enjoy every moment your Dh is home...

[Deleted]

.......oh and here's some flowers I picked for you. tee-hee-hee...

 

[Deleted]

Yeah, I used to cry regularly when lots of hormones were runnin' through my body..not so much anymore, cuz I be an old lady now..>snort<

Who knows maybe dd will finally mellow out on the antics.....certainly it can't be ALL because of her disability. Some has to be that she has learned certain behaviors. At any rate, glad you told her to stop and go to her room. I'm sure you've talked to her about what is acceptable dialogue with you and what isn't......maybe she'll see (if you continue to disengage her) that she has no choice but to act respectfully if she wants your attention/love. There's always hope, I say...

Honestly, I don't know how you've survived the long separations you have from your Dh, I couldn't have done it for 15 yrs. like you have, but I certainly understand why, I do....heck, we're plannin' on my dh to retire in 4 yrs. @ 55 and once in a while it's scary to think about.....for both of us. We try and prepare for every possible scenario and have a plan, but when it comes down to it all you can do is do your best in deciding when to pull the plug and just do it. I think everyone is similar, in feeling a little hesitant to quit the paychecks..

Whatever you two decide, it'll work out you'll see...

Tomorrow's my DD's (my baby...hahahaha) 30th Bday...wow, where did the time go Her older brother's is in less than 3 mos....turning 34...seriously now that the raising of them is all done and has been for years, I sometimes wonder where on Earth has so much time gone to make us all so much older? Well, strike that.......how did I become so much older They're still smack dab in the middle of their prime!!!

Got back from the cottage an hour and a half ago, painted some floor to ceiling shelves dh made me in master closet and organized/filled them this weekend. Last two weekends have gotten much done, feels good....took a shower and here I am surfin' the .

Have a good night. I'm back to stayin' up super late and wakin' up late.....hate that! Workin' on it...

[Wisconsin Beth]

I'm glad you had your DH around for a breakdown Pat.  Not only so he could comfort you but so that he could see and hear the toll this is taking on you.  I know you talk with him but being in the same room when someone is breaking down makes it so much more personal and makes a more lasting impression. 

[lund]

Glad to hear that you get some support and care! You certainly have, and have had, a lot on your plate for a long time!

[NastyWoman]

 So happy for you! I know it is not yet a given but still...

[Blonde Granny]

As I said once before, just keep waving your ability to self pay for awhile and you'll likely be surprised how quickly it can move then.

[vonna]

I hope this works out for you and your DD!!

[Deleted]

I don't mean to be mean in any way by what I ask/state, but do they keep asking if you are her guardian because you being her guardian means you are still legally responsible for her? I mean, if you were to 'abandon' her to the system, would they have to pay for it? But then if that happens you would give up all choice in ip where she goes I guess.  

i just hate hate the idea your husband having to work another five years...