The "I don't want to know" parent

lapcat Member Posts: 4
edited May 2018 in Caregivers #1

I posted more about this on "emotional support", maybe that was the wrong board.  My mother is 89 years old.  She was in the hospital for a gallstone and told me today that she has pancreatic cancer and doesn't think she wants to treat it. (which would give her a life expectancy of perhaps four months).  I am her only surviving relative, and I'm willing to move 2000 miles to be her caretaker or share caregiving.  I spent the morning dealing with the shock and sorrow, as well as trying to figure out how to handle the practical details and make her end stage terminal months as good as possible. 

She was diagnosed with colon cancer last year, and then broke her hip, and while the caregiving experience was basically positive, her lack of lucidity and basic disorganization during that period made life beyond the illness a total mess.  I'm not the only person giving her emotional support by far, but I am the only one with legal authority - or skin in the game - as far as making financial or life choices for her.

Anyway, I called back on the never-ending-search for an actual diagnosing doctor or information about her prognosis, and was told by the nurse that they only suspect it *might* be pancreatic cancer.  So basically, in not so many words she told me she is actively dying, when in fact she might have another fifteen years.

Now ... she's not given to spouting nonsense just to get my attention, so it's not like I thought "oh here we go again".  The thing is, she doesn't want to be tested.  So Maybe she is dying and I need to drop my life and actively care for her, protect her and make the essential decisions with/for her.  Then again, maybe she just has a gallstone. And if she's not going to be tested, I'm not going to know which it is until I get a chaos call at 3 am saying "come now!"

I'm trying not to be selfish or totally cold and pragmatic about this, but I'm just about tapped out. I know, she's terrified of dying.  She's specifically terrified of dying of pancreatic cancer because a friend of hers died badly of that. I don't want to take out my anger and frustration on her, and after 55 years of letting her get her way, I don't want to draw a line and push her, making her even more dismissive of me. But being put in this limbo is just about literally killing me.

Any advice?  I think that I can cope with her having a fatal cancer, she has not been well for a few years now, and she is very old, I know that death is inevitable.  What I'm not sure I can cope with is being pushed away when I am the only person left.  I'm so angry. I used to be hurt about it, but right now I'm mostly just pissed, that I'm offering to help and being told there's nothing I can do (which is what she always says, with great handwringing, in any situation from death to overcooked minute rice, as if I were six years old and mentally challenged to boot).  I can't keep her alive, but I can make her life easier.  Her life/death could be peaceful and worry free and instead, she's acting like I'm no more relevant to her "real" life than her hairdresser, and like she is no more relevant to my life than a neighbor I used to have.

What would you do?


  • k2oly
    k2oly Member Posts: 13
    the pain of living in limbo

    lapcat - thanks for posting. i'm interested in hearing about what others have to say, also.

    you wrote "after 55 years of letting her get her way, I don't want to draw a line and push her, making her even more dismissive of me." oh boy do i hear ya! when i read that, i remembered something an oncology social worker said to me about my micromanaging, control-freak, lovable person with cancer. this social worker reminded me that this patient finds it extremely difficult to have so little control over something so important/vital like life and death. so it's likely she'll cling even more fiercely to ANY amount of control she has over ANYthing. if she sees anything i do as an attempt to "take" control from her, she's likely to get really upset. (ex: it used be that me asking something caring like "i'm going to the store, can i pick up anything for you while i'm there" was taken as a kind gesture. but now, she takes it as an insult and implication that she's incapable of running her own errands.) this oncologist said that the most generous and most loving thing i can do for her right now is to listen without responding so she doesn’t think i'm trying to “take over”. to be clear, i have NO interest in taking over. i hate making decisions for MYself so i sure as hell don't want to influence other people's decisions. i hesitate to do that even if i'm explicitly asked!

    but it helps to remember her "i need control" perspective when she talks with me. it helps me to remember to keep my gob shut and ask NO questions at all. that's not my nature, so it's still a struggle. but i do my best to just respond to what she says by sorta joining her conversations as if i'm watching a movie. things she says/thinks might seem strange or uncomfortable to me, but i'm finding that the relationship is easier when i leave my input at innocuous things like "that sounds frustrating" or "it sounds like you're relieved about that" and etc.

    as for "being put in this limbo is just about literally killing me" - i feel that way too! every day i feel overwhelmed. i have too many "i don't think that i can take this anymore" break-downs. being left in the dark is torture for me. intellectually, i know that it is HER decision to choose what info SHE wants from doctors and that SHE wants to share with me. intellectually, i know that MY role/situation here is to process my feelings about my position (being in the dark); my role/situation is *not* to go around her in an attempt to gather more info about her situation. and sometimes i'm able to settle into knowing that's my role/situation. sometimes i'm able to accept it by saying "this is the info i'm working with and i wish i had more info and the not-knowing stinks". but just as often, i cry aloud about how much easier it would be if only i had more info to go on. sometimes it's almost unbearable to be intentionally left in the dark. sometimes i think it would be easier if the "not knowing" was the fault of diagnostics not being able to provide it rather than my person intentionally leaving the information out of reach.

    i crave hearing from others about how they handle the information vacuum.

  • GingerMay
    GingerMay Member Posts: 134
    Making it easier

    The comment about not being able to keep someone alive but being able to make things easier for them I think is key.  I have a husband and now also elderly parents going through health issues.  As much as I want to save them, I can't.  I'm at a point where I believe they need to do things in their own way even if it isn't my way or I think I have a better plan.

    As long as an elderly parent isn't being mistreated medically or by other caregivers, I think I need to honor the decisions they make.  There's a lot you can do to support remotely.  Keep an eye on things and step in if something is going sideways.  Perhaps your mom will change her mind on the diagnostic test after she gets her mind around it a bit more and your role will become more clear.