I can't win
Apologies if this doesn't make sense. I'm kind of out of it today and things are jumbled.
One day things are OK, we're managing like we always do and the next our whole world has completely exploded. Mom had a seizure last Wednesday which needless to say scared the ever living fuck out of my dad and I. She's had sensory seizures before but none where she physically shakes. The worst part being the past month has been really, really difficult and right before the seizure we were both trying to get her into bed and I was using my angry Kiley-parent voice to get her to move and then - BAM - she goes unresponsive and starts seizing. And for a moment I thought we had lost her. All I could think about was my bunny who had this massive seizure in my arms and died. That's all I could remember as I tried to find my breath to be able to speak to the 911 operator.
The past month has been awful because her myiopathy (muscle deterioration) in her legs has really gotten bad. Some days are good, some days are bad. Many days she just doesn't want to get up and move regardless of what the agenda is that day, so I have to give her tough love to get anything done. And she's really hurtful now, very angry and she takes it all out on me. Suffice it to say that the ones you love the most are the ones who get the brunt of your emotion. It's really, really hard to deal with your mother looking like someone else completely, telling you to go to hell, g** d**** you, fuck you, and you're going to die soon. She admitted, when pushed, that she wanted to hurt me because hurting me helped her hate me. I don't know why she wants to hate me, she doesn't even know why. You can chalk this all up to the effects of radiation and the inane amounts of drugs she's on but it doesn't make it that much easier to bear. Particularly when you know some of the time she's in control of her mind and just wants to hurt you because she doesn't know how to deal with whatever she's feeling.
That I can deal with. It's the messes I can't handle. I shouldn't have to clean my mother up like a baby. And she won't get up to go to the bathroom, it's irrational fear. She won't listen when you help her realize how she's walking so wrong that she could fall. She won't even let you help her really. A lot of it is in her head and some of it is, we know now, her being incapable of moving. When she's only 8" from the commode and you need to get to work in five minutes and she's been sitting in a filthy bed, how do you think you'd feel? When she could stand up, pivot, and use the toilet and keep you from this mess?
So needless to say the aggression and incontinence have taken a huge toll on us and especially on our relationship. To those of you who don't know, my mom and I are BFFs. I unfortunately have a lot of shitty people in my family. My brother is a drug addict who is extremely hurtful, my dad is also an addict but he abused alcohol and doesn't any longer due to health reasons. He's still an asshole most of the time though; he basically verbally abused my family and particularly my mother for all my life. Basically, we don't get along. Rarely if at all. My mom's sister is also an addict (wow this is a running theme) and also kind of an opinionated bitch. Sometimes she can be nice and others she's a right cunt. What it all boils down to is all I have is my mother. She is my sole source of love, guidance, comfort, praise, friendship.... She is my everything. I've gone through a lot of shit in my life and my mom and my astounding coping skills are the only reasons I survived. I mean, for chrissakes, she literally pulled me from the house when it was on fire and saved my life. That says it all.
About two weeks ago they gave my mom Gamma Knife radiation which is basically super-charged super-pinpointed radiation on two tumors in her brain. All this time we have been doing chemo and all this time we had been told nothing new had grown. A few had gotten minutely bigger, just a smidge, which is why they wanted Gamma. But otherwise things were always OK and STABLE. And then she has a seizure. And she's admitted into the hospital because she can't move well and her blood sugar is high due to the steroids. And we're trying to get her into acute rehab or find someone to come watch her while we work. And then all of a sudden we talk to her oncologist and they're not going to continue with chemo treatment anymore. What?
Did you read that right? Just the other week she was well enough, her tumors were SMALL ENOUGH, to manage Gamma Knife radiation. And now suddenly between that time (with no new MRI taken) we're told this is it? How? When? HOW?
It's just inconceivable. I don't believe it. I don't believe we have fought this hard this long, we have come this far and done so much to be told out of the blue, that's it. How can a week ago we went through that treatment, she was well enough for it, to hear a week later it was a lie? Why weren't we told the truth? Why is it every time we ask how things are we keep hearing different answers?
The worst of it is we talked to a social worker there to ask about an aide coming in to watch her while dad and I are gone. And they're talking hospice and palliative care and WE HAVE GIVEN UP LET'S JUST MAKE YOU COMFORTABLE AND GIVE UP care. No one said ANYTHING about giving up. And all the docs and social workers keep saying, hospice isn't the end, it's just about comfort and help but they really mean IT'S THE END WE JUST DON'T HAVE THE BALLS TO TELL YOU, INSTEAD WE'D LIKE TO MILK YOUR INSURANCE FOR SOME TIME LONGER. And the bitch puts her hand on my arm and says, "It's not easy to discuss this when it's your mom." No I don't think you understand. We're NOT giving up. I'm NOT going to put her in some home and let what happens happen. Don't you dare try to make this decision for me or make this decision for her...don't decide on her life. That's what pisses me off. You don't even know her or her case or her anything, how are you going to come to me when I'm asking you about a hospital aide and tell me it's the end? How do YOU know it's the end? I'm pretty sure G-d is the only one who knows the answer to that.
I'm just flabbergasted. I keep thinking that I can cope and I can handle this. I can do this because I have amazing coping skills just like that therapist told me in Paris and it magically fixed me. But the situation just keeps getting worse and worse and I just want to scream to the heavens, "Enough already! When is enough, enough? I'm not Job, how much more testing can you possibly do?"
And the ashamed selfish person in me is terrified of the future. My mother is my rock. I do not have this support outside of her. I have Lauren who is helpful beyond words but she's not my mom. She's not obligated to pick me up when I fall. I don't have anyone. I don't have another family, I don't have a significant other, I don't have my own children. And I'm terrified I will be without love for a very long time without her. And I want to set up contingency plans because if she's gone I'm going to need help, I'm going to need someone. I'm not saying I'm going to be completely nothing without her and that this person will have to hold me up by themselves but I'm going to need a hand. And I don't know anyone or have anyone who will take that on. I don't blame them, it's a daunting and serious task.
I'm still that little girl on the first day of school, crying in the corner because her mother left, terrified of being alone. I can deal with everything else, everything else being taken from me. From my house, to friends, to pets, to...whatever loss I come across. All because I had her.
I should be grateful I have the opportunity to spend time with her. That she isn't just gone, it would be worse. I have the opportunity to say things, we have the opportunity to make great memories. I'm lucky. I am very lucky. I'm just scared. Very, very scared.
One day things are OK, we're managing like we always do and the next our whole world has completely exploded. Mom had a seizure last Wednesday which needless to say scared the ever living fuck out of my dad and I. She's had sensory seizures before but none where she physically shakes. The worst part being the past month has been really, really difficult and right before the seizure we were both trying to get her into bed and I was using my angry Kiley-parent voice to get her to move and then - BAM - she goes unresponsive and starts seizing. And for a moment I thought we had lost her. All I could think about was my bunny who had this massive seizure in my arms and died. That's all I could remember as I tried to find my breath to be able to speak to the 911 operator.
The past month has been awful because her myiopathy (muscle deterioration) in her legs has really gotten bad. Some days are good, some days are bad. Many days she just doesn't want to get up and move regardless of what the agenda is that day, so I have to give her tough love to get anything done. And she's really hurtful now, very angry and she takes it all out on me. Suffice it to say that the ones you love the most are the ones who get the brunt of your emotion. It's really, really hard to deal with your mother looking like someone else completely, telling you to go to hell, g** d**** you, fuck you, and you're going to die soon. She admitted, when pushed, that she wanted to hurt me because hurting me helped her hate me. I don't know why she wants to hate me, she doesn't even know why. You can chalk this all up to the effects of radiation and the inane amounts of drugs she's on but it doesn't make it that much easier to bear. Particularly when you know some of the time she's in control of her mind and just wants to hurt you because she doesn't know how to deal with whatever she's feeling.
That I can deal with. It's the messes I can't handle. I shouldn't have to clean my mother up like a baby. And she won't get up to go to the bathroom, it's irrational fear. She won't listen when you help her realize how she's walking so wrong that she could fall. She won't even let you help her really. A lot of it is in her head and some of it is, we know now, her being incapable of moving. When she's only 8" from the commode and you need to get to work in five minutes and she's been sitting in a filthy bed, how do you think you'd feel? When she could stand up, pivot, and use the toilet and keep you from this mess?
So needless to say the aggression and incontinence have taken a huge toll on us and especially on our relationship. To those of you who don't know, my mom and I are BFFs. I unfortunately have a lot of shitty people in my family. My brother is a drug addict who is extremely hurtful, my dad is also an addict but he abused alcohol and doesn't any longer due to health reasons. He's still an asshole most of the time though; he basically verbally abused my family and particularly my mother for all my life. Basically, we don't get along. Rarely if at all. My mom's sister is also an addict (wow this is a running theme) and also kind of an opinionated bitch. Sometimes she can be nice and others she's a right cunt. What it all boils down to is all I have is my mother. She is my sole source of love, guidance, comfort, praise, friendship.... She is my everything. I've gone through a lot of shit in my life and my mom and my astounding coping skills are the only reasons I survived. I mean, for chrissakes, she literally pulled me from the house when it was on fire and saved my life. That says it all.
About two weeks ago they gave my mom Gamma Knife radiation which is basically super-charged super-pinpointed radiation on two tumors in her brain. All this time we have been doing chemo and all this time we had been told nothing new had grown. A few had gotten minutely bigger, just a smidge, which is why they wanted Gamma. But otherwise things were always OK and STABLE. And then she has a seizure. And she's admitted into the hospital because she can't move well and her blood sugar is high due to the steroids. And we're trying to get her into acute rehab or find someone to come watch her while we work. And then all of a sudden we talk to her oncologist and they're not going to continue with chemo treatment anymore. What?
Did you read that right? Just the other week she was well enough, her tumors were SMALL ENOUGH, to manage Gamma Knife radiation. And now suddenly between that time (with no new MRI taken) we're told this is it? How? When? HOW?
It's just inconceivable. I don't believe it. I don't believe we have fought this hard this long, we have come this far and done so much to be told out of the blue, that's it. How can a week ago we went through that treatment, she was well enough for it, to hear a week later it was a lie? Why weren't we told the truth? Why is it every time we ask how things are we keep hearing different answers?
The worst of it is we talked to a social worker there to ask about an aide coming in to watch her while dad and I are gone. And they're talking hospice and palliative care and WE HAVE GIVEN UP LET'S JUST MAKE YOU COMFORTABLE AND GIVE UP care. No one said ANYTHING about giving up. And all the docs and social workers keep saying, hospice isn't the end, it's just about comfort and help but they really mean IT'S THE END WE JUST DON'T HAVE THE BALLS TO TELL YOU, INSTEAD WE'D LIKE TO MILK YOUR INSURANCE FOR SOME TIME LONGER. And the bitch puts her hand on my arm and says, "It's not easy to discuss this when it's your mom." No I don't think you understand. We're NOT giving up. I'm NOT going to put her in some home and let what happens happen. Don't you dare try to make this decision for me or make this decision for her...don't decide on her life. That's what pisses me off. You don't even know her or her case or her anything, how are you going to come to me when I'm asking you about a hospital aide and tell me it's the end? How do YOU know it's the end? I'm pretty sure G-d is the only one who knows the answer to that.
I'm just flabbergasted. I keep thinking that I can cope and I can handle this. I can do this because I have amazing coping skills just like that therapist told me in Paris and it magically fixed me. But the situation just keeps getting worse and worse and I just want to scream to the heavens, "Enough already! When is enough, enough? I'm not Job, how much more testing can you possibly do?"
And the ashamed selfish person in me is terrified of the future. My mother is my rock. I do not have this support outside of her. I have Lauren who is helpful beyond words but she's not my mom. She's not obligated to pick me up when I fall. I don't have anyone. I don't have another family, I don't have a significant other, I don't have my own children. And I'm terrified I will be without love for a very long time without her. And I want to set up contingency plans because if she's gone I'm going to need help, I'm going to need someone. I'm not saying I'm going to be completely nothing without her and that this person will have to hold me up by themselves but I'm going to need a hand. And I don't know anyone or have anyone who will take that on. I don't blame them, it's a daunting and serious task.
I'm still that little girl on the first day of school, crying in the corner because her mother left, terrified of being alone. I can deal with everything else, everything else being taken from me. From my house, to friends, to pets, to...whatever loss I come across. All because I had her.
I should be grateful I have the opportunity to spend time with her. That she isn't just gone, it would be worse. I have the opportunity to say things, we have the opportunity to make great memories. I'm lucky. I am very lucky. I'm just scared. Very, very scared.