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...and I guess the response is, well, that's her right to do and her choice, right?
She was changed to a new, harsher chemo and it has taken her from independent and self-reliant to sitting in a chair nearly all the time and not eating enough, weakness, dizziness. She gets out about once a week now, as opposed to being very active.
She doesn't want them to make any changes and thinks her cancer can be cured, though she was told that's not the case up front. She thinks though that because a fungal infection was cured that the cancer can be.
I'm sure doctors encounter this a lot, and I think that I'm more worked up over it than she is, because what I see when I'm visiting and what she says during the week to me isn't matching with the "i'm a little tired" that she tells the doctor. I do have a message in to them, but I feel like at this point I just have to let it play out, I guess.
She was really angry with me earlier and said the doctors are only allowed to listen to what she says and nobody else.
The caregiving issues get more complex by the day. But now she has a medical alert, and I am out of state, and I feel like either I have to let this play out with her preferring to be in the dark (she does not want to know prognosis) or move there and be her full time caregiver (and I am not going to do that).
Anyone else have this? I also don't want to drive her doctors nuts but I feel like I do every so often need to tell them what the real story is...
If you are concerned about your loved one I would make sure that the doctors know the truth.
Someone on chemo needs to be very, very honest to their oncologist about every side effect so that the doctors can modify or change the medications, if appropriate.
Now, it is possible that she "knows" the likely prognosis but is just in denial. The doctors give you the statistics (5% chance of survival, 50% , 80%) but, of course for each patient it is all or nothing. You are 100% dead or 100% alive at any one time.
I personally know someone who was given less than a 5% chance of beating brain cancer and she has now been 15 years cancer free. OTOH, I had an acquaintance who was given more than a 95% chance of surviving that cancer and she was part of the less than 5% who did not make it.
If you are concerned about your loved one I would make sure that the doctors know the truth.
Someone on chemo needs to be very, very honest to their oncologist about every side effect so that the doctors can modify or change the medications, if appropriate.
Thanks Germaine. Yes that's what they told her when I was at the appointment last time - they're frustrated as she agrees to do that, but then doesn't.
It may be that she does beat it but it is spread pretty widely and the nature of this form of cancer is super aggressive. In this case I don't know that it's realistic to expect a more positive outcome but I also feel like I need to keep that to myself. She'll have another brain MRI next month and we'll know more then; recent PET scan confirmed metastases to bone, lungs, skin.
I guess what I'll do is try to keep her doctors informed about what I'm seeing when I'm there and what she tells me, but knowing that she's going to tell them different. My mother and I are such opposite personalities, especially about this stuff, that it is making me crazed (I want to know everything so I can research it to death, lol, and I want to fully inform so I am getting fully informed).
I feel like, if she wants to keep it up with rough chemo that is just knocking her out it's her right as an adult human to do that. But sometimes I wonder if the treatment harms more than it helps. I guess ultimately if the patient thinks it's helping, then it's helping, even if it's really not. I guess.
While it's totally understandable that you want her to be honest (or at least tell her doc something closer to the truth), so she can tolerate her treatment, her whole attitude about her illness and her future is hers. What you would do is not necessarily what she would do. If she chooses to be disallusioned and in denial, she can be. Many people don't believe chemo is "working" unless it makes them quite sick, so she's putting on the brave face. If the disease is so widespread and aggressive kind of begs the question why they went ahead with such a harsh regimen. Still, if that was a decision she and her doctor made, it was hers to make. It's possible she is not being honest about other things such as her belief in being cured. She may be resigning herself or letting go in subtle ways.
Would she be open to having someone check on her during the days or bring in a meal to make sure she's staying hydrated and eating? That and her call button may be all the "interference" she wants. That might ease your mind at least. I know how tough it is to watch someone sit back and take it, but it is still her decision.
Last edited by Parnassia; 05-29-2018 at 01:08 PM..
While it's totally understandable that you want her to be honest (or at least tell her doc something closer to the truth), so she can tolerate her treatment, her whole attitude about her illness and her future is hers. What you would do is not necessarily what she would do. .
Yup - absolutely. I know I need to back off about this. Some of it is my trying to figure out the caregiving needs and that's tough when she's lying to doctors...but I totally admit that's not all of it.
She was getting Meals on Wheels but has decided to cancel because she doesn't like most of the meals - fair. She has an idea to get prepared meals from Wegman's but won't call for delivery and can't go there most days. I'm learning that I just can't control a lot of this stuff when I'm not there, so I have to just let it go. So how will she get the meals? Well, not sure. I can have it delivered and she can yell at me and will. I dunno.
She has someone coming in once every two weeks but really needs more. She's not willing to go for more, though.
It's a huge relief that she has the medical alert bracelet now. But will she press the button? I dunno.
Next time I'm there I'll buy a bunch of meals. Last time I was there and wanted to do that she screamed and threw things across the room at the wall.
She's allowed as an adult human to remain a narcissist, now a narcissist with cancer - nothing I can do about that, sadly.
Rejecting a suggestion or help is done just BECAUSE it wasn't their idea. It's seen as meddling, insulting, chipping away at what was their independence. After all, they have lived decades as a self sufficient adult, not a child, and the fact that THEIR child is now attempting to direct what they do is even worse. My dad did this all the time. Once in a while I'd discover that he would end up doing something I suggested after all, but I also learned never to bring it up. I learned to mention ideas casually, almost in passing and drop it. Sort of like a salesman leaving pamphlets on the table but not talking about the contents. Telling a story about some other person (who conveniently happened to be going through a similar health issue) and mentioning things that seemed to help. Again, being somewhat devious....exposing the mind to an idea and letting it trickle it's way into the brain on it's own.
The way my sister and I dealt with my dad during his decline was night and day. She would browbeat him, lecture him, interfere with his medical care and providers, take on every crisis as personal, and frankly, made things worse much of the time. She made herself and everyone else miserable. All this was under the guise of being a caring resourceful daughter but it actually was her attempts to be the heroine and in control of others. She was the martyr, the ultimate sacrificial soul who must be pitied. My dad detested it. They fought constantly and in the end he would not trust her with any of his final decisions or wishes.
I lived a lot farther away so in a way was a bit more isolated from the day to day trouble. However, I tried to give him the benefit of the doubt and let him choose what he wanted for himself even though it might not be the best decision. It wasn't turning a blind eye, it was waiting until asked. We talked endlessly through all this time so even though he realized I wasn't thrilled with his behavior, he still felt safe exposing his thoughts to me. I feel people have to make their own decisions for their own reasons. If they trust you, you'll get the real story and can probably help exactly when it's most needed. I feel the relationship is most important, not the daily details. That "pick your battles" approach. I know it's hard when all the battles seem critical. In the end, when he was really vulnerable and out of "fight" guess who he leaned on and gave in to? Me, not the martyr. In the end, I think my sister remembers my dad with a lot of anxiety, frustration, resentment, and fruitless anger because they never resolved their differences. I feel very very fortunate to remember a different person; flawed, selfish, narrow minded, but a worthy human.
Last edited by Parnassia; 05-29-2018 at 01:52 PM..
Thanks. Yup, that makes sense. This is only a bit different in that my mother's mental health issues that are pre-existing are amplified right now, but regardless of that, what you say still is true particularly with regards to her independence being the issue. Which I know and recognize completely. So there are things I don't even bother to deal with. But for life and death things - someone should know.
I do disagree about the relationship being more important over the daily details when it comes to this specific thing with this person. And honestly in this case the relationship really isn't that important. It's more about survival needs. That may sound awful to you, and I understand why, but I wasn't joking about the narcissism. She's at great risk if her doctors don't know what's going on and proceed with treatment as if she's tolerating it better. But she is also entitled to risk her life if she chooses.
I have no intention of browbeating however she is asking me to be the person she goes to. I am also the one she fights with, though. What can ya do? I don't know your sister's side, of course, and everyone's different. In this specific case, my choice is how much to be involved at all. I don't particularly have a need for her to lean on me; it's not about my relationship with her, and it's not about me. I'm just trying to figure out how to get her needs met. I don't need the validation from her, if that makes sense.
I'm just trying to figure out how to get her needs met. I don't need the validation from her, if that makes sense.
Of course. And that's the hard part....everyone's relationship and situation is unique. Good luck whatever you decide to do! People forget that being the patient isn't necessarily the hard part.
Too, give the doctor some credit for his experience -- of course, this means he is well versed in his field. Yes, the patient's report should be as accurate as possible to help herself, but there are at least 2 people in this treatment plan.
I say this as a stage 3 ovarian cancer patient with a disease with no hope of cure.
Whenever I've forgotten something or hedged a report, sometimes out of fear, and not being a complainer by nature, my onc doctor has an insightful question.
Of course, my mental health was not impaired with age, and I still work as a financial analyst in a public corporation. But again, the professionals have usually dealt with all types of people. Hope this helps.
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