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There's a possibility that he just doesn't care what happens to him and he's not interested in making his life better/extended/etc.
I understand the thought, but not in this case. He cares a lot. He lives in a dream world. Used to, God was going to heal him. Now he's onto other unrealistic dreams. In the now he's interested in others making his life better and easier. He feels it's his due. More than most people. I mean don't we all expect help during an illness/after an injury?
I needed a LOT with a torn ligament once. And I got it. Grocery shopping, cooking or bringing me prepared food, walking my dog for me, etc. We all expect help from family, friends, SO, etc. But usually people do what they can to make it easier on the helper, whoever they are. People who need excessive amounts of attention go the other way .....
I went to my PT. I did the exercises I was supposed to when official PT was over. I wanted that leg to work right again. He wants his legs to work again, but only if that is surgical or miracle from God or a medicine with no side effects. Not if he has to do anything himself.
And truly, it wouldn't be this bad now if he had followed instructions when he COULD walk. He should have gone on his cane and later his walker to bust his ass in PT, and follow all the other protocol. Nutrition, meds, etc.
But he wouldn't even use the GD cane or walker for a long time. Falling was more fun. In front of my mother especially, to manipulate her into never taking her eyes off him for the rest of her life. I could let a lot of hate come out, but I put that in a box and buried it with my mother. Can't help her now.
Hi. Just because I ended up doing some venting in the threads asking questions about leaving AMA and Medicare home health doesn't mean they were not legit questions.
I learned from those threads. This thread was certainly a legit question as well. The fact that conversations directly after making it made it moot, which I acknowledged, doesn't change that.
Someone pointed out after I said this thread is dumb that it isn't if it helped me realize the futility of it. Sorry you feel tricked or something.
I have been absent from this equation for a very long time. Many years ago I stopped speaking to my brother. I kept up with his health via my mother, but I kept my distance. Since she died I've had to pitch in and recently elevate my level of involvement.
I'm sorry my journey through this annoys you. As I stated, I felt inspired to try another approach. I don't think human beings should be given up on w/o trying as hard as one can. I feel badly that my parents or the school didn't see Asperger's or some other problem when he was young and get him help. Maybe it's too late now, but that is a sad conclusion to leap to quickly and toss a person aside. Leaving him in capable hands is one thing, which I did for many years. Now it has fallen into my hands. Pardon me for trying before I throw them up in defeat.
Sorry you missed my point.
YOU were the one who was fighting every suggestion since your OP about the AMA.
You were the one who told everyone "I'm really only asking about the insurance".
You were the one who supported your brother in REJECTING what they were trying to tell him about is inability to go home because he couldn't transfer or basically do anything.
You said "As long as he can go be put in his chair, everything will be fine; why are they being so difficult; everything was fine "before" when this happened."In doing so, you missed your window of opportunity with social services and other actions that may have helped. Just like a drug addict, you can't keep expecting a mentally ill person to "change" just because you want them to.
In fact, he reminds me of the famous brothers on "My 600 Pound Life" where Steven Assanti is actually a drug addict and keeps calling 911 to take him to the hospital so he can get his drug fix, since the state is obligated to do so. And the family just goes along with it because they don't know what else to do and won't let the social services people take over.
Are you sure the Fire Department isn't running some scam like THAT? HOW does his insurance even justify it. (rhetorical question) No wonder all our premiums are outrageous.
So yeah, you had to bang your head against the wall for months before you figured out what everyone (including me) was trying to tell you.
That's fine but don't get indignant when people point out we WERE trying to help and you weren't cooperating either.
NOBODY said "toss him aside" except the virtuous members who INSISTED it was his "right" to go home and rot. Even though he obviously is emotionally disturbed etc.
He belongs in a Skilled Nursing Facility but OBVIOUSLY, the FAMILY (and the Fire Department ) is not willing to make that happen so all hypothetical "questions" are moot.
Then again, I see where the home ownership is ALSO an issue. Right? You got indignant when I asked about that too.
Vents are perfectly legitimate here. But it goes both ways.
RWS, for the life of me I don't understand your accusatory tone in so many of your posts in this section of C-D. You have lots of good experience and some good insight into many areas of caregiving, but it seems like you enjoy being antagonistic and/or accusatory which makes it more difficult for people to get past your animosity and on to your often insightful advice.
What is your personal experience with long term caregiving for immediate family members? I ask because when love and emotions are part of the equation, which is often the case, it's often more challenging to establish healthy boundaries and there are lots of conflicting emotions that aren't present in a professional caregiver's interactions with the patient. So yes, that professional perspective is important for family member caregivers to hear and consider, but that insight doesn't negate or really even address the depth of emotions that come with providing long term care for a family member.
Many times, it's helpful to people to vent, to sort through their conflicting emotions via writing things out, to hear empathy and understanding from others who have dealt with or who are dealing with similar dynamics with family members. The very fact that people agonize over or ponder various ongoing issues for months or years is a testimony to their depth of emotion and caring and their commitment to the relationship in spite of the difficulties. I don't think that it's helpful to insult them.
I understand the thought, but not in this case. He cares a lot. He lives in a dream world. Used to, God was going to heal him. Now he's onto other unrealistic dreams. In the now he's interested in others making his life better and easier. He feels it's his due. More than most people. I mean don't we all expect help during an illness/after an injury?
I needed a LOT with a torn ligament once. And I got it. Grocery shopping, cooking or bringing me prepared food, walking my dog for me, etc. We all expect help from family, friends, SO, etc. But usually people do what they can to make it easier on the helper, whoever they are. People who need excessive amounts of attention go the other way .....
I went to my PT. I did the exercises I was supposed to when official PT was over. I wanted that leg to work right again. He wants his legs to work again, but only if that is surgical or miracle from God or a medicine with no side effects. Not if he has to do anything himself.
And truly, it wouldn't be this bad now if he had followed instructions when he COULD walk. He should have gone on his cane and later his walker to bust his ass in PT, and follow all the other protocol. Nutrition, meds, etc.
But he wouldn't even use the GD cane or walker for a long time. Falling was more fun. In front of my mother especially, to manipulate her into never taking her eyes off him for the rest of her life. I could let a lot of hate come out, but I put that in a box and buried it with my mother. Can't help her now.
OP -
Not everyone who has a debilitating illness, especially a long-term chronic one that destroys one's quality of life (like CP, MS, ALS, or a traumatic injury causing paralysis, etc..) wants to be a poster child for the special olympics.
Plenty of people get chips on their should about the unfairness of life that *NEVER* get resolved.
Your brother dealt with a devastating diagnosis by becoming a jerk and having unrealistic expectations of the world and his family members.
I'd suggest that since this has gone on for decades, it's unlikely to suddenly change.
Perhaps significant mental counseling in the beginning (when he was first diagnosed) could have led to a more health adaptation/mental outlook... but now?
No.
You seriously need to look at what you want to do for him, and say no to the rest.
As to your father, who I know you don't want to abandon to this... This is his *SON*. He likely feels guilt about this that none of us can imagine. The fact that his child became ill, the fact that his child never adapted succesfully to it, and the fact that his child basically won't be able to survive on his own once he is gone.
Parents of children who (for various reasons, including significant mental disabilities) have these types of illnesses are insanely worried about what happens "after I'm gone". For your dad, I'm sure that drives a lot of his behavior in enabling your brother now, while he's still here..
Which is to say, this isn't a situation that looks resolvable.
Your father will eventually be gone, your brother will still be incapable of living on his own. He'll either have to use home health aides through medicaid (to the extent that the state he lives in provides such) - or he'll end up in a facility of some kind...
You can certainly do things here and there for him to help him out, but short of giving up your entire life, I doubt they'd make much difference.
Not everyone who has a debilitating illness, especially a long-term chronic one that destroys one's quality of life (like CP, MS, ALS, or a traumatic injury causing paralysis, etc..) wants to be a poster child for the special olympics.
Plenty of people get chips on their should about the unfairness of life that *NEVER* get resolved.
Your brother dealt with a devastating diagnosis by becoming a jerk and having unrealistic expectations of the world and his family members.
I'd suggest that since this has gone on for decades, it's unlikely to suddenly change.
Perhaps significant mental counseling in the beginning (when he was first diagnosed) could have led to a more health adaptation/mental outlook... but now?
No.
You seriously need to look at what you want to do for him, and say no to the rest.
As to your father, who I know you don't want to abandon to this... This is his *SON*. He likely feels guilt about this that none of us can imagine. The fact that his child became ill, the fact that his child never adapted succesfully to it, and the fact that his child basically won't be able to survive on his own once he is gone.
Parents of children who (for various reasons, including significant mental disabilities) have these types of illnesses are insanely worried about what happens "after I'm gone". For your dad, I'm sure that drives a lot of his behavior in enabling your brother now, while he's still here..
Which is to say, this isn't a situation that looks resolvable.
Your father will eventually be gone, your brother will still be incapable of living on his own. He'll either have to use home health aides through medicaid (to the extent that the state he lives in provides such) - or he'll end up in a facility of some kind...
You can certainly do things here and there for him to help him out, but short of giving up your entire life, I doubt they'd make much difference.
good luck to your whole family.
Do they do that? He doesn't have Medicaid. We thought it would be nursing home they'd pay for after spending down. A person can go on Medicaid for home aids instead?
YOU were the one who was fighting every suggestion since your OP about the AMA.
You were the one who told everyone "I'm really only asking about the insurance".
You were the one who supported your brother in REJECTING what they were trying to tell him about is inability to go home because he couldn't transfer or basically do anything.
You said "As long as he can go be put in his chair, everything will be fine; why are they being so difficult; everything was fine "before" when this happened."In doing so, you missed your window of opportunity with social services and other actions that may have helped. Just like a drug addict, you can't keep expecting a mentally ill person to "change" just because you want them to.
In fact, he reminds me of the famous brothers on "My 600 Pound Life" where Steven Assanti is actually a drug addict and keeps calling 911 to take him to the hospital so he can get his drug fix, since the state is obligated to do so. And the family just goes along with it because they don't know what else to do and won't let the social services people take over.
Are you sure the Fire Department isn't running some scam like THAT? HOW does his insurance even justify it. (rhetorical question) No wonder all our premiums are outrageous.
So yeah, you had to bang your head against the wall for months before you figured out what everyone (including me) was trying to tell you.
That's fine but don't get indignant when people point out we WERE trying to help and you weren't cooperating either.
NOBODY said "toss him aside" except the virtuous members who INSISTED it was his "right" to go home and rot. Even though he obviously is emotionally disturbed etc.
He belongs in a Skilled Nursing Facility but OBVIOUSLY, the FAMILY (and the Fire Department ) is not willing to make that happen so all hypothetical "questions" are moot.
Then again, I see where the home ownership is ALSO an issue. Right? You got indignant when I asked about that too.
Vents are perfectly legitimate here. But it goes both ways.
I understand where you are coming from. There was no opportunity though. My Aunt already tried. The firemen have also called APS. The nursing home called them too. They won't do anything.
Do they do that? He doesn't have Medicaid. We thought it would be nursing home they'd pay for after spending down. A person can go on Medicaid for home aids instead?
I do not know if Medicaid pays for home health aides like your brother would need.
In my state they would pay for an aide to get someone out of bed, toilet them, dress them & feed them and get them to a van for an adult day care center and maybe do the reverse at the end of the day. But, if a disabled person needs round the clock care, or care on the weekends, it has to be provided through a nursing home. Usually this program works with people with Alzheimers or dementia or elderly people with serious health issues or people who are developmentally delayed that live at home but their full time caregivers need a break.
They also have a program, connected to Medicaid, where the disabled person is in charge of finding and hiring their own aides. I believe that the hours per week can vary from 10 hours to perhaps as many as 30 or 40 hours a week, maybe more. The state pays the aides but only about $10 or $11 an hour so, I believe, that it is often difficult to find people to accept those jobs. From what I have seen someone like your brother may qualify for something like that (sometimes the people have physical challenges but are normal cognitively).
Your state may be completely different. It would not hurt to do more checking on what is available in your state. It is possible that he may be able to get help that would allow him to stay in his own home. Good luck.
Last edited by germaine2626; 06-12-2017 at 06:06 PM..
I do not know if Medicaid pays for home health aides like your brother would need.
In my state they would pay for an aide to get someone out of bed, toilet them, dress them & feed them and get them to a van for an adult day care center and maybe do the reverse at the end of the day. But, if a disabled person needs round the clock care, or care on the weekends, it has to be provided through a nursing home. Usually this program works with people with Alzheimers or dementia or elderly people with serious health issues or people who are developmentally delayed that live at home but their full time caregivers need a break.
They also have a program, connected to Medicaid, where the disabled person is in charge of finding and hiring their own aides. I believe that the hours per week can vary from 10 hours to perhaps as many as 30 or 40 hours a week, maybe more. The state pays the aides but only about $10 or $11 an hour so, I believe, that it is often difficult to find people to accept those jobs.
Your state may be completely different. It would not hurt to do more checking on what is available in your state. Good luck.
Thanks I will certainly look into it but my first thought is this is for people who already have Medicaid.
He makes too much for medicaid. I did find out this week that Humana will not give a home health aide. Straight Medicare would, I learned in the thread about that, but not his plan through Humana. He could have PT&OT but he doesn't want it.
I am not fighting anymore. I felt I had to try. I was inspired by reading about Aspie's in another thread and thought 'maybe I shouldn't be so hard on him'. 'Maybe there is a different approach I could take.' I don't think there is.
He won't allow a disability trust. He won't allow his half of the home to be legally shielded from Medicaid. He is in denial he will ever need it.
OP, unfortunately, sometimes you can't fix things for people no matter how badly you want to. All you can do is step away & take care of your own stuff. Even if they ask for help - because they only want you to do it for them.
OP, unfortunately, sometimes you can't fix things for people no matter how badly you want to. All you can do is step away & take care of your own stuff. Even if they ask for help - because they only want you to do it for them.
We can't when he doesn't let us. I find today insane. Just now heard from Dad. He went over there with my typed thing for the Dr and my brother wouldn't let him in his Van. He shook his head and gestured to follow or leave, my Dad took it as follow and he tried but Brother drove too fast. Dad had planned on riding with him so didn't have the address. Had put the typed thing on the passenger seat of the Van in case he lost him, but I am sure my brother didn't give it to Dr.
That means I have no permissions still, the Dr. didn't get an accurate history, and I won't find out what he said accurately. I suppose I could be surprised and brother did hand it to him, but I am feeling doubtful. I'll know tomorrow or the next day when I call that office, I guess.
Maybe that is my fault. I had sort of pushed him by saying why can't you talk to dr on the ipap? and then realizing I was getting ahead of myself. We need to get permissions and communication set up with Drs before letting him go alone.
But right after I said 'Dad is riding with you in your Van'! And twice he said ok to that. Sheesh.
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) is not willing to make that happen so all hypothetical "questions" are moot. 
