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My sister mentioned being worried about her bag. I won't go. For a lot of reasons. When he momentarily was going to stay in the nursing home and said to start going through the house I was like nah. And if I did have to, I'd call pest control first. I am a bit of a ninny. There is no way I could deal with that many. At first turning on a light and a few scatter, ok, I could cope. But an infestation of ones so bold as to crawl on people? No.
We had a fight in the middle of the night about how all of this is on him now. He and he alone is in control of his destiny. He started off with messages telling me he's sorry he was mean to me when we were kids I said you are trying to draw me in. I am a lot of things, but not stupid. Other sister isn't meeting your needs and you are turning to me now.
Guess what? I have the same things to say as her. I understand why you think you only need leg exercises. That has worked well enough for you but that is over. Letting your core go was a huge mistake but you can turn it around if you choose to, if you find the WILL.
He screamed at my sister again over that today and she said do what you want, but core determines whether you can hold up your head, your ability to even BREATHE. I'm just telling you the consequences of your choices, but do what you want.
She has more to report but has a meeting. He's going home, supposedly. This place has no rehab, and once again come time to sign the medicaid papers and he balks. He's medicaid pending. IDK how long they will even let him stay on 'pending'. By not signing the papers they have no method of knowing they will ever get paid.
She said he's digging himself into a bad hole with the places. They won't keep taking Medicaid pending people who won't actually go onto Medicaid.
Medicare won't pay for anything for two more months. KA you are not lucky obviously all the caregiving you've had to do I will only say I envy that you could do for your mother what she needed instead of having to just stand by and watch dominoes fall.
There is a rollercoaster of feelings as you know and right now my adrenaline is pumping but later tonight I am going to get really sad.
I know what you mean about getting really sad sometimes - the other night I was sitting in the bathtub and literally crying (naked and crying - now that's pathetic) and praying to God out loud for Him to please, please just take my mother. Low point for sure.
And you're right about my mom and her options - money does give options. Good elder care is so expensive, but I get WHY it's so expensive.
You know, I think my mom is very depressed right now. I think she finally realizes that she cannot and will not ever live anywhere else, or ever live in her own home or in a private home for that matter again - not with me, not with my brothers, not with her sisters - I think she finally realizes the extent of her situation.
It's absolutely pathetic. She has lost everything - her home, her husband, her talents, her ability to keep herself occupied and entertained, her ability to read or watch TV or even really see, her intellect, her memories, her independence to even get dressed or go to the bathroom by herself, her looks, her pets, her mobility, her health, everything. All she does have, and it's great she has it but still...is the luxury, if you can call it that, of a safe and clean environment and three square meals a day.
But at some point that means very little. What I mean is that at some point, no amount of money makes that much difference. She's still laying in a hospital bed (because her bed didn't have rails and wasn't able to be moved up and down), in one room, with CNAs taking care of her, someone else dressing and feeding her, and in a wheelchair most of the day. I mean, I am grateful that her facility is clean and well staffed, and I have no complaints about her care, but at this point, the activities are meaningless (she can't and won't participate), she can't taste much of the food, and all wheelchairs feel about the same sitting in them.
But at least she's clean and someone is taking the time to feed her, bathe her, change her adult diapers, change her bedding, etc. which is better than a lot of options for those with less ability to pay for good care.
I know what you mean about getting really sad sometimes - the other night I was sitting in the bathtub and literally crying (naked and crying - now that's pathetic) and praying to God out loud for Him to please, please just take my mother. Low point for sure.
And you're right about my mom and her options - money does give options. Good elder care is so expensive, but I get WHY it's so expensive.
You know, I think my mom is very depressed right now. I think she finally realizes that she cannot and will not ever live anywhere else, or ever live in her own home or in a private home for that matter again - not with me, not with my brothers, not with her sisters - I think she finally realizes the extent of her situation.
It's absolutely pathetic. She has lost everything - her home, her husband, her talents, her ability to keep herself occupied and entertained, her ability to read or watch TV or even really see, her intellect, her memories, her independence to even get dressed or go to the bathroom by herself, her looks, her pets, her mobility, her health, everything. All she does have, and it's great she has it but still...is the luxury, if you can call it that, of a safe and clean environment and three square meals a day.
But at some point that means very little. What I mean is that at some point, no amount of money makes that much difference. She's still laying in a hospital bed (because her bed didn't have rails and wasn't able to be moved up and down), in one room, with CNAs taking care of her, someone else dressing and feeding her, and in a wheelchair most of the day. I mean, I am grateful that her facility is clean and well staffed, and I have no complaints about her care, but at this point, the activities are meaningless (she can't and won't participate), she can't taste much of the food, and all wheelchairs feel about the same sitting in them.
But at least she's clean and someone is taking the time to feed her, bathe her, change her adult diapers, change her bedding, etc. which is better than a lot of options for those with less ability to pay for good care.
I'm so sorry. I didn't mean money, although that does help immensely, I meant the fact that she put you in a position to be able to manage her care and you don't have to beg APS who won't do anything and all that. And that doesn't take away any of the pain or any of that either, I only meant I was envious that you could DO what needed to be done instead of just watching her decline at home where there could not be proper care.
I shouldn't be typing right now in the middle of a panic attack, but the way I feel at this moment is I don't even care. I was told some things I can't type here and he is so much sicker in the head than people even want to acknowledge.
I'm not buying that the MS attacked his brain to cause all this madness. He's sharp enough to manipulate me and others. A counselor from a hotline just told me that and I said you know, I've been saying that and saying that but everyone always comes up with a way to mitigate it by saying that MS attacks the brain.
I don't buy it. As much as I care for my sister and want to help my Dad, when she said 'we' and 'us' I was like what does that mean. What is expected of me. Reinforcing what you say? He needs core blah blah? She was like yeah and maybe google stuff for me when I don't have time I was like that's fine, that is within my boundary, just making sure!
I decided he has infantilism or something. He asked her to put a Hoyer lift in the house. The counselor asked me who is supposed to operate it? You can't use it by yourself. I was like I don't know!
Maybe it's that we keep saying we can't lift him so we can't care for him at home and he figured out a way around that.
My sister things he's 'losing it' I'm like honey, he lost it a long time ago and I don't even know anymore what all his diagnosis are. She doesn't want to hear what he did to my Mom. I think she needs to to understand how long he's been this way but whatever.
The counselor reminded me of what I already know but never can totally wrap my head around. Everyone has to discover this for themselves. Whatever. I still think that is BS when you have a person who has been dealing with him so long and is screaming at the top of her lungs about it all.
I discovered a deep well of anger that I've not been believed. That no one gave a sht what he was doing to my Mom when she was alive and I sort of feel some hate over that. I love my Dad, I do, but even though she was his ex-wife he should have cared but he didn't because her doing everything meant he didn't have to do anything.
I understand his plate was full and whatever but it's still inexcusable to me. And he's still willing to 'sacrifice' me and my sister so he can step away again. He needs to nut up, and step away w/o us. He won't, but he should.
I shouldn't be typing right now in the middle of a panic attack, but the way I feel at this moment is I don't even care. I was told some things I can't type here and he is so much sicker in the head than people even want to acknowledge.
I'm not buying that the MS attacked his brain to cause all this madness. He's sharp enough to manipulate me and others. A counselor from a hotline just told me that and I said you know, I've been saying that and saying that but everyone always comes up with a way to mitigate it by saying that MS attacks the brain.
I don't buy it. As much as I care for my sister and want to help my Dad, when she said 'we' and 'us' I was like what does that mean. What is expected of me. Reinforcing what you say? He needs core blah blah? She was like yeah and maybe google stuff for me when I don't have time I was like that's fine, that is within my boundary, just making sure!
I decided he has infantilism or something. He asked her to put a Hoyer lift in the house. The counselor asked me who is supposed to operate it? You can't use it by yourself. I was like I don't know!
Maybe it's that we keep saying we can't lift him so we can't care for him at home and he figured out a way around that.
My sister things he's 'losing it' I'm like honey, he lost it a long time ago and I don't even know anymore what all his diagnosis are. She doesn't want to hear what he did to my Mom. I think she needs to to understand how long he's been this way but whatever.
The counselor reminded me of what I already know but never can totally wrap my head around. Everyone has to discover this for themselves. Whatever. I still think that is BS when you have a person who has been dealing with him so long and is screaming at the top of her lungs about it all.
I discovered a deep well of anger that I've not been believed. That no one gave a sht what he was doing to my Mom when she was alive and I sort of feel some hate over that. I love my Dad, I do, but even though she was his ex-wife he should have cared but he didn't because her doing everything meant he didn't have to do anything.
I understand his plate was full and whatever but it's still inexcusable to me. And he's still willing to 'sacrifice' me and my sister so he can step away again. He needs to nut up, and step away w/o us. He won't, but he should.
Thank you for the update. As others have said, I suspect that your brother has mental health disorders in addition to his MS, perhaps Narcissism. Having a mental health disorder like that would explain a lot of things that make him so very different from the loved ones that the rest of us are caregivers for.
My sister things he's 'losing it' I'm like honey, he lost it a long time ago and I don't even know anymore what all his diagnosis are. She doesn't want to hear what he did to my Mom. I think she needs to to understand how long he's been this way but whatever.
Since your sister is working in the capacity of healthcare, I think she should start the process of having him declared incompetent to make decisions. I'm serious. Letting roaches crawl on him? Making nonsensical decisions? She has the power (professionally) to raise a hand and say "this guy cannot manage his own life."
Quote:
Originally Posted by jencam
I discovered a deep well of anger that I've not been believed. That no one gave a sht what he was doing to my Mom when she was alive and I sort of feel some hate over that. I love my Dad, I do, but even though she was his ex-wife he should have cared but he didn't because her doing everything meant he didn't have to do anything.
I understand his plate was full and whatever but it's still inexcusable to me. And he's still willing to 'sacrifice' me and my sister so he can step away again. He needs to nut up, and step away w/o us. He won't, but he should.
You tend to want to canonize your Mom, but 1) she allowed your brother to mistreat her (If I ever "did stuff" to my Dad he would have let me have it and I would have been afraid to ever do it again) and 2) she also created expectations that others would cater to his every whim.
And then to top it off she made you feel responsible for him after she died.
I'm not the one who made the rep comment about the will of the house -- but it seems whoever did recognizes your Mom's role in all this.
You have a right to be angry that you aren't being believed, but then again you don't seem to want to stand up for yourself so maybe that's why.
But really, push your sister to file whatever paperwork is needed to get him declared mentally incompetent so he can be placed somewhere where he will be cared for.
Since your sister is working in the capacity of healthcare, I think she should start the process of having him declared incompetent to make decisions. I'm serious. Letting roaches crawl on him? Making nonsensical decisions? She has the power (professionally) to raise a hand and say "this guy cannot manage his own life."
You tend to want to canonize your Mom, but 1) she allowed your brother to mistreat her (If I ever "did stuff" to my Dad he would have let me have it and I would have been afraid to ever do it again) and 2) she also created expectations that others would cater to his every whim.
And then to top it off she made you feel responsible for him after she died.
I'm not the one who made the rep comment about the will of the house -- but it seems whoever did recognizes your Mom's role in all this.
You have a right to be angry that you aren't being believed, but then again you don't seem to want to stand up for yourself so maybe that's why.
But really, push your sister to file whatever paperwork is needed to get him declared mentally incompetent so he can be placed somewhere where he will be cared for.
Agreed. He is beyond being able to make rational decisions, but then again, no one is making rational decisions.
This fixation over core muscles is beyond belief. Not very muscle will respond to exercise, that is why MS patients become incapacitated no matter how much rehab they get. He is a bed bound MS patient with cognitive issues who cannot be managed at home. PERIOD. All the core exercises in the world won't change that fact.
This is why family members shouldn't manage cases....they are too emotionally involved because it is people they love. It clouds your judgement and you lose your objectivity.
Agreed. He is beyond being able to make rational decisions, but then again, no one is making rational decisions.
This fixation over core muscles is beyond belief. Not very muscle will respond to exercise, that is why MS patients become incapacitated no matter how much rehab they get. He is a bed bound MS patient with cognitive issues who cannot be managed at home. PERIOD. All the core exercises in the world won't change that fact.
This is why family members shouldn't manage cases....they are too emotionally involved because it is people they love. It clouds your judgement and you lose your objectivity.
Agree 100%.
Jencam I really feel for you. I totally understand that you are in a position of powerlessness here yet you are really being sucked in and you have no authority to do anything - not surprised at all you are having a panic attack.
The core muscles thing is bizarre, I agree, since he has MS. It's not like he will suddenly be mentally healthy if he were to get six pack abs.
You have no control over your sister and she shouldn't be his health authority, it's a total conflict that she's the one at the agency. But do not take him home if asked. She should refuse as well. He is not competent.
Jencam I really feel for you. I totally understand that you are in a position of powerlessness here yet you are really being sucked in and you have no authority to do anything - not surprised at all you are having a panic attack.
The core muscles thing is bizarre, I agree, since he has MS. It's not like he will suddenly be mentally healthy if he were to get six pack abs.
You have no control over your sister and she shouldn't be his health authority, it's a total conflict that she's the one at the agency. But do not take him home if asked. She should refuse as well. He is not competent.
Oh my gosh, if he thinks he can get six pack abs he will REALLY dig his heels into the fantasy of a Russian bride.
Core wasn't her idea. She is not a PT. That is what the PT's say he needs to do. All she is doing is repeating what they said. I asked her to ask them if there is any hope for his core and they said yes. Not like he's going to ever walk again, but he wants to at least transfer and thinking he is going to work his legs only isn't right.
I don't care if he does core or not. Last week I thought we agreed we don't want him getting stronger anyway. Not out of meanness, but because this back and forth home is dangerous. If he gets stronger later, fine. Tool around in the nursing home. I guess she has a professional duty to repeat what the PTs said or something. As a sister she can think one thing but as a nurse have to do another?
Maybe we are pinging on each other when we get to talking and are confused now about goals?
I have no idea. She told me some things I didn't know and now that I know, he needs to be locked up. I can't tell yet if that is speaking from emotion or not but that is how I feel.
I am going to send her a message and ask her to ask herself if dealing with him is healthy for her. I don't think it is. It isn't for me. Luckily he isn't calling or messaging me much.
We 'owe' Dad but we don't owe him this. That counselor really helped me.
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