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I do not like being a sandwich! Warning - pity party happening here
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<blockquote data-quote="rlsnights" data-source="post: 328172" data-attributes="member: 7948"><p>Thanks for all the support . Like I said, I know I'm not the only one dealing with this stuff, it just feels that way sometimes.</p><p></p><p>Right now I can't see any way for this to end short of my mom and sister hitting the wall, singly or together, at which point we will have to pick up lots of little pieces and put them back together again - if we can.</p><p></p><p>I happen to have an inside track as far as public programs in our state go and know there are none that my mom would qualify for due to her income. She does have LTC insurance but is "saving it" for when she really needs it. </p><p></p><p>The kind of things mom needs help with are not really covered by LTC. To some extent they're the kind of services provided in assisted living facilities. But mom will not go there voluntarily as long as my sister is living independently and my mom has even a shadow of independence left. And she will not move close to myself or my other sister in AZ because that would be "abandoning" my sister C.</p><p></p><p>My sister would qualify for in home support services except that my mom is claiming her as a dependent for tax purposes and she doesn't have MediCare part B. My sister is on SDI but refused to sign up for MediCare because she believes she will be unable to get the care she needs through that program. I don't know whether she would or wouldn't but it doesn't matter since SHE is convinced of her position. Without Part B she can't get IHSS in our state at this time, assuming she would be willing to apply for the services.</p><p></p><p>My sister would have to be literally on death's door to go into any kind of rehab hospital. Two reasons: she is an extremely high risk patient and is in danger of infection in any kind of group care setting like a hospital or rehab center; and she would just plain go crazy in that setting. </p><p></p><p>This is a woman who is ABD - all but dissertation - toward a doctorate in pediatric neuropsychology in a program that qualifies it's candidates for prescribing privileges. She is functionally a pediatric neuropsychologist with special expertise in the area of deaf/hard of hearing children. Can you imagine her in a rehab hospital without access to a computer of her own, work to do, library privileges?</p><p></p><p>Even when she is very, very sick, her mind is going a mile a minute. She has my mom read journals and textbooks to her when she's too sick to hold the books or can't see to read anymore. This weekend she dictated a 7 page case analysis "final" for one of her classes to a college student to type up for her. Besides the 7 page analysis (with footnotes) there was a 3 page list of references. C told the student what references to use and the student looked up the exact details to enter in the correct reference format. I think she would just turn her face to the wall and die if she was isolated from intellectual stimulation at this kind of level.</p><p></p><p>I won't go in to all the details but I have a lot of time in as a caregiver to people with serious health conditions and rehab hospitals are not healthy places for a patient with her issues. A small, highly specialized board and care might work but C. is unwilling to even talk about whether she might be at the point where she needs that level of help.</p><p></p><p>Another barrier to a board and care is payment for that service without a private source or MediCare funding. Even an assisted living center might work but again who's going to pay?</p><p></p><p>Guess what I need is to find an assisted living center that they can both move to so they can get the care they need while retaining as much independence as possible. Don't know about the $$$.</p><p></p><p>Maybe I could get each of them to agree for the sake of the other...</p><p></p><p>I think I need to conference with my sister in AZ and see what she thinks and knows. She's a smart cookie and has more experience with the assisted living stuff than I do cause of her mother in law. Sadly, I always seem to rub her the wrong way - maybe it's just the oldest:youngest stuff that's the issue. Dont' know cause she won't really talk about it, just avoids me as much as possible. Might also be the L word - she and her husband are devout churchgoers and I'm under the impression our family would not be welcome at their church. All I know is the harder I try to avoid mis-steps the more I seem to offend her.</p><p></p><p>Well it's going to be pretty hard to continue to avoid me if we have to start dealing with C and Mom's living placements in a united fashion. Oh goody.</p><p></p><p>I have to go to bed now. It's been helpful thinking out loud here.</p><p></p><p>And I have also gotten very clear that I have to make my own family here my priority. I need to be proactive with the situation with my mom and sister but not at the expense of my own family.</p></blockquote><p></p>
[QUOTE="rlsnights, post: 328172, member: 7948"] Thanks for all the support . Like I said, I know I'm not the only one dealing with this stuff, it just feels that way sometimes. Right now I can't see any way for this to end short of my mom and sister hitting the wall, singly or together, at which point we will have to pick up lots of little pieces and put them back together again - if we can. I happen to have an inside track as far as public programs in our state go and know there are none that my mom would qualify for due to her income. She does have LTC insurance but is "saving it" for when she really needs it. The kind of things mom needs help with are not really covered by LTC. To some extent they're the kind of services provided in assisted living facilities. But mom will not go there voluntarily as long as my sister is living independently and my mom has even a shadow of independence left. And she will not move close to myself or my other sister in AZ because that would be "abandoning" my sister C. My sister would qualify for in home support services except that my mom is claiming her as a dependent for tax purposes and she doesn't have MediCare part B. My sister is on SDI but refused to sign up for MediCare because she believes she will be unable to get the care she needs through that program. I don't know whether she would or wouldn't but it doesn't matter since SHE is convinced of her position. Without Part B she can't get IHSS in our state at this time, assuming she would be willing to apply for the services. My sister would have to be literally on death's door to go into any kind of rehab hospital. Two reasons: she is an extremely high risk patient and is in danger of infection in any kind of group care setting like a hospital or rehab center; and she would just plain go crazy in that setting. This is a woman who is ABD - all but dissertation - toward a doctorate in pediatric neuropsychology in a program that qualifies it's candidates for prescribing privileges. She is functionally a pediatric neuropsychologist with special expertise in the area of deaf/hard of hearing children. Can you imagine her in a rehab hospital without access to a computer of her own, work to do, library privileges? Even when she is very, very sick, her mind is going a mile a minute. She has my mom read journals and textbooks to her when she's too sick to hold the books or can't see to read anymore. This weekend she dictated a 7 page case analysis "final" for one of her classes to a college student to type up for her. Besides the 7 page analysis (with footnotes) there was a 3 page list of references. C told the student what references to use and the student looked up the exact details to enter in the correct reference format. I think she would just turn her face to the wall and die if she was isolated from intellectual stimulation at this kind of level. I won't go in to all the details but I have a lot of time in as a caregiver to people with serious health conditions and rehab hospitals are not healthy places for a patient with her issues. A small, highly specialized board and care might work but C. is unwilling to even talk about whether she might be at the point where she needs that level of help. Another barrier to a board and care is payment for that service without a private source or MediCare funding. Even an assisted living center might work but again who's going to pay? Guess what I need is to find an assisted living center that they can both move to so they can get the care they need while retaining as much independence as possible. Don't know about the $$$. Maybe I could get each of them to agree for the sake of the other... I think I need to conference with my sister in AZ and see what she thinks and knows. She's a smart cookie and has more experience with the assisted living stuff than I do cause of her mother in law. Sadly, I always seem to rub her the wrong way - maybe it's just the oldest:youngest stuff that's the issue. Dont' know cause she won't really talk about it, just avoids me as much as possible. Might also be the L word - she and her husband are devout churchgoers and I'm under the impression our family would not be welcome at their church. All I know is the harder I try to avoid mis-steps the more I seem to offend her. Well it's going to be pretty hard to continue to avoid me if we have to start dealing with C and Mom's living placements in a united fashion. Oh goody. I have to go to bed now. It's been helpful thinking out loud here. And I have also gotten very clear that I have to make my own family here my priority. I need to be proactive with the situation with my mom and sister but not at the expense of my own family. [/QUOTE]
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