Posted by alexandra_k on August 20, 2021, at 17:10:49
so, mother has mantle cell lymphoma, apparently. she has several translocations. she is over 80. last few times i've seen her (months ago before diagnosis now) i remember thinking that she was looking a bit... frail.
cathexis? maybe.
anyway...
she doesn't have renal problems or diabetes. she is not obese. she is pretty active. but she is over 80 and last few times i've seen her (months before diagnosis now) i remember that she was looking a bit... frail.
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i have to be very careful with myself around her. i need to be careful to look after myself i mean to say. she likes dramas. she likes to get a rise out of people. she likes to upset people. to wind them up. so she's quite... provocative. intentionally. emotion dysregulation. she likes to inspire that in others. magnify it. etc.
when i am in a good place i can see what she is doing and regulate. and when she is an a good place she will be... honest? in presenting the things she is having trouble processing herself.
but sometimes... there's something... a bit more... malicious? malevolent? in her just wanting to cause or create upset. and she isn't interested in seeing people handle things she's sort of destructive only.
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anyway...
she tells me various things... her side or part of the story or whatever.
and the thing...
well... i guess it's the same as dad.
they have given up. accepted they are going to die relatively shortly or whatever. don't seem to have any regrets or whatever. don't seem to have any last wishes. don't want to have a heart to heart. don't want to have a get together...
right.
maybe i'm supposed to fight for them? i don't know. i don't know what i am supposed to do. maybe i am. supposed to show them how much i care about them. i don't know.
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latest is that she won't be getting a vaccine because her immune system is not working so there would be no point.
she's on a cancer drug. one that is not fda approved for her condition. it is fda approved for her condition as a second line treatement to be employed only after first line treatments have failed.
she was offered no first line treatment. she is paying out of pocket (a few thousand dollars a month or whatever -- which is a lot for her given how stingey she usually is about anything)... she is paying out of pocket for this treatment that is not government funded at all. but this treatment is not government funded as a first line treatment because it isn't even approved as a first line treatment by the fda.
it seems to be killing her blood cells. all of them. she is going in and getting units of blood. to keep her going.
she doesn't want to see me. i've offered to go down with kim but she says she feels cared for by the people in the hospital etc etc.
she doesn't think i care for her i suppose.
i really don't think that she cared for me. so. there's that.
i don't suppose we do personality wise...
but there have been moments? times? she isn't interested in those... guess not...
anyway i offered. it is her choice. her decision.
she gets pissy about that too. she doesn't want it to be her choice. her decision. she wants other people to do it for her. make decisions for her etc. i can't do that... she never empowered me. if that's what she wanted me to be able to do... so...
i don't suppose she makes a great deal of sense, really.
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it's hard for me to talk to her because every conversation is just...
i have to go numb and turn my brain off i guess.
'yeah, you won't get a vaccine because your immune system isn't working so there's no point' sure. seems legit. seems plausible.
they say you should wear a mask in the hospital but you don't mjuch want to. you realise that it's for your own protection?
oh yeah but you don't much want to. okay. you do you.
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anyway... that's that. i guess.
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what am i supposed to say? i've spent so very much of my life wishing she was dead.
i feel bad about that. feels like a horrible thing to say.
but it isn't so terribly hard to remember how horrible my life was under her control. so...
she'll likely leave her money to hospice or the lovely people who are so lovely to her in her end days...
i suppose that's the point of that.
teaching me a lesson in how people don't want informed consent. don't want to make those kinds of decisions. etc. some don't... i understand that. they don't get medical treatment. medical care. they get 'there there feel better'. and i do understand that it's not a case of 'either or'. ideally... it is both and.
but nzl seems determined to exclude me on the grounds that it must never be about informed consent at all... and it can't possibly be about both.
therefore i must be incapable of the care portion or aspect.
but the thing of it is that the care portion or aspect...
professionalism.
it isn't something you can provide to your family and friends.
professionalism.
because of conflict of interests.
indeed.
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i suppose it is good that she is telling me that she is okay and doing okay and she doesn't need anything from me.
since i don't have anything to give.
i guess there is that.
poster:alexandra_k
thread:1116526
URL: http://www.dr-bob.org/babble/social/20210526/msgs/1116526.html