I’m upset about this and I don’t understand the details

[Ginevra]

PLEASE DO NOT QUOTEThank you for all your help and commisseration. 

PLEASE DON’T QUOTE. I’m posting this in a fog of confusion and I’m upset. If anyone can answer my actual, practical questions, that would be great. But also just commiseration is fine. 

Edited February 1, 2019 by Quill

[mmasc]

I wish I could give you some awesome, concrete answers, but since I can’t, I just wanted to say ‘man, that sucks.’ Sorry for all the unnecessary confusion you’re dealing with. 😞 

[Selkie]

My dh's whole family is like that, not just about medical issues but about everything. It is stressful and infuriating. So yeah, I commiserate with you completely and am so sorry this is happening.

[prairiewindmomma]

I had a relative that also obscured medical information.  I don't want to go too deep into the situational details on a public board, but ultimately I came to the following conclusions:

1. They were protecting themselves in their own processing and grieving.  They were trying to come to terms with their own mortality and they didn't want to be pushed in the decisions they were making. They also didn't want to see some hard and stark information head on. They were deluding themselves as well.

2. They were misguidedly protecting me/rest of the family from "unnecessary" worry. Until things conclusively pointed in one direction or the other, they didn't want to share what was going on.

3. A certain amount of laissez faire brought peace to their life. They didn't want their medical misadventures to take over their life. They wanted to be focused on other things and just let things play out as they would.

I think we have similar personalities, Quill....a bit Type A, deep researchers, give me all the facts ma'am.... At the time, I was really upset but as life has played out around me, I've kind of come to respect their position even if it doesn't match my own preferences. It was a hard road to there, though, so I can really commiserate with you on this one....

[Pen]

Perhaps she would sign hippa type forms to allow you to get info directly.    ?

[Guest]

Quote

Is it possible your mom just doesn't have the ability to clearly communicate, vs choosing not to?

Not very likely, unless it’s age-related. She’s the one from whom I get my grammar nazi tendencies. She used to edit the school newsletters in disgust because there were always errors in usage, spelling or punctuation. “Look! This article from the English Department head says, ‘Each student must report to there homeroom...’! These are the people teaching my kids?” 

Your examples are funny, though. Don’t massacre those eyelashes! 

My dh is this way. I keep telling him “a big ordeal” is not the same thing as “a big deal.” He can’t remember. So then he says his mother's birthday party was “a big ordeal.” Sigh. 

[Guest]

@prairiewindmomma I think all of your points are good ones and probably are closest to the truth. And yes, I am very much “deal with the facts” about health. I want to know exactly what we’re dealing with, scientifically, quantitatively, and I don’t go in for all this maybe-just-in-case stuff. 

[Tap]

My mom is like this, but she will even flip stories that she has already told me around to have different focus.

One phone call she will tell me I need to have my daughters immune system looked at because there are so many in our family with immune system and genetic issues. I have a second cousin who had a medical paper written about her, another who has a very, very, very rare immune system issue (specialist flew in from out of state to see her), my nephew had mosaic diploid/triploid which is supposed be almost impossible. Almost every one of the 30+ grandkids in my generation has at least one run of the mill immune system issues RA, Thyroid issues, PCOS, sjogrens etc. My sister had a severe stroke in her 40s. My other sister is almost disabled due to pain. 

The next phone call, she is telling me how I need to make sure to save for retirement because our family is so healthy and everyone lives so long.  I should expect to live well over 90-100. I remind her that our family isn't healthy and that almost everyone of us has some major immune system based illness.  She tells me I am wrong, we are all healthy.  Once I start naming people and illnesses, she changes the subject.

 

It is laughable, but I think it has to do with which mood she is in. If she wants sympathy, she is more open about the truth. If she wants to pretend all is great with the world, she denies that the problems even exist.

[itsheresomewhere]

I have no idea on one side of the family history.  They don’t talk about it. The only way you find out stuff is when things slip.  Drives a few of us up a wall that no one really knows.  They don’t talk about it as they think no one needs to know.  Then when someone slips up, goodness’s knows if you will get the truth or the version they think you should know. 

Edited February 1, 2019 by itsheresomewhere

[Valley Girl]

I don't blame you for being upset.

Are you and your sibs local to each other? Can you sit down together, all of you, with your mom and tell her you're all confused and ask that she explain everything to you at the same time? Or can you take turns (if your mom is willing) going to appointments with her? Or get her to allow one of you to talk directly to the doctor so you "can be most helpful to her as she recovers"?

It's so frustrating to have people getting small--and conflicting--pieces of the puzzle.

[Guest]

6 minutes ago, Valley Girl said:

I don't blame you for being upset.

Are you and your sibs local to each other? Can you sit down together, all of you, with your mom and tell her you're all confused and ask that she explain everything to you at the same time? Or can you take turns (if your mom is willing) going to appointments with her? Or get her to allow one of you to talk directly to the doctor so you "can be most helpful to her as she recovers"?

It's so frustrating to have people getting small--and conflicting--pieces of the puzzle.

Sibs are local. Cant really do all sit down and get crystal-clear...I cant really explain why not, it’s just family culture and lifelong ways of being. There’s not much “being real” with my mom. I have been to more appointments than my sisters; one has little kids and its hard for her to do doctors appts; the other claims to be too squeamish. When she went through BC in 2013, I was the most involved and inteacted with her doctors a lot. But thats not so much the case right now because ive been doing my own health thing. 

[trulycrabby]

Could be age related; my MIL has mild dementia and functions reasonably well in her daily routine; but put her in a stressful or unfamiliar environment and her cognitive function just disappears. 

If she normally does not forget details or give inaccurate or untrue information, then I would likely attribute her behavior to age, stress, and illness. 

[Garga]

3 hours ago, prairiewindmomma said:

I had a relative that also obscured medical information.  I don't want to go too deep into the situational details on a public board, but ultimately I came to the following conclusions:

1. They were protecting themselves in their own processing and grieving.  They were trying to come to terms with their own mortality and they didn't want to be pushed in the decisions they were making. They also didn't want to see some hard and stark information head on. They were deluding themselves as well.

2. They were misguidedly protecting me/rest of the family from "unnecessary" worry. Until things conclusively pointed in one direction or the other, they didn't want to share what was going on.

3. A certain amount of laissez faire brought peace to their life. They didn't want their medical misadventures to take over their life. They wanted to be focused on other things and just let things play out as they would.

I think we have similar personalities, Quill....a bit Type A, deep researchers, give me all the facts ma'am.... At the time, I was really upset but as life has played out around me, I've kind of come to respect their position even if it doesn't match my own preferences. It was a hard road to there, though, so I can really commiserate with you on this one....

 

My mother is like #2 and #3 above.

For #2: She hates the idea of worrying other people and of them fussing over her.  She had a mother who was a hypochondriac and she can't stand it when people talk about medical stuff to each other because she hated listening to her mom talk about her medical issues when she was growing up. (Then again, my mother is not a reliable narrator, so for all I know her mother wasn't a hypochondriac at all, but was just a normal person with serious asthma that needed to be constantly tended to.  I didn't know my grandmother.)

For #3: My mom will lightheartedly say, "This world just isn't for me.  I don't belong here."  She's been saying that for years, and I think she's kinda just hanging around waiting to die.  I mean, she still gets out with people and constantly putters around her house, but she doesn't really care if she dies one day, because overall she doesn't feel like she fits in in this world. She doesn't bother worrying about her health, because she isn't strongly attached to this world. Is your mother that way?  Doesn't really want to focus on the illness because she is tired of this old world anyway?

I can 100% see my mother lying about her true condition.  She doesn't bother to go to doctors and do things to take care of herself unless it's just sleeping and eating some veggies at dinner.  My mother hates doctors and gets a mischievous look in her eye when she doesn't follow their orders, as if she's somehow foiling their silly doctor plots to keep her healthy. 

At the extreme end, she woke up one night vomiting blood all over the bed and the (white) carpet.  My father woke up and got very alarmed and tried to call an ambulance and my mother got very angry at him for "overreacting".  He was like, "SUE. You are vomiting blood all over the floor! It's like a murder scene in here!"  He ended up driving her himself to the hospital.  The doctors were very upset that he had driven her himself and told her that if it ever happened again, she was to call an ambulance immediately.  Afterward, she told me in a joking tone about how "your dad has PTSD or something from when I was sick." (It was ulcers) She indicated that it was just so silly of him.  *She* wasn't upset about vomiting blood everywhere, but he was.  How silly!  It's not like he was the one with the ulcers!  How could *he* possibly be upset!   She really couldn't understand why it would be severely upsetting for her husband to wake up to his wife covered in blood. But...my mother is also the one who said she has never grieved when any human has died (her parents, friends, her siblings), so I don't think she understands how her health can make other people feel.  

So...this doesn't shed much light on why your mother is the way she is, but I do get it about a family member who will not tell you what's really going on and doesn't seem to understand how upsetting that can be.

3 hours ago, Quill said:

My dh is this way. I keep telling him “a big ordeal” is not the same thing as “a big deal.” He can’t remember. So then he says his mother's birthday party was “a big ordeal.” Sigh. 

 I know it's a serious thread, but I actually giggled aloud when I read about your DH telling you his mother's birthday party was a big ordeal when he meant to say big deal.  That must have been a confusing conversation until you figured it out.

Edited February 1, 2019 by Garga

[MercyA]

I wish I had some helpful advice, but all I can do is commiserate and offer hugs. ❤️

[prairiewindmomma]

Hey, Quill, I went digging into some studies (to occupy my brain while I'm listening to a conference....). It appears that Faslodex works as an estrogen blocker. That is a similar action to Arimedex. Since the studies are so strong to support long-term use of Arimedex (10+ years) as a preventative after certain types of cancer, I wonder if they are using Faslodex in a preventative way as well to block estrogen reception given her higher markers. 

[Guest]

Quote

For #3: My mom will lightheartedly say, "This world just isn't for me.  I don't belong here."  She's been saying that for years, and I think she's kinda just hanging around waiting to die.  I mean, she still gets out with people and constantly putters around her house, but she doesn't really care if she dies one day, because overall she doesn't feel like she fits in in this world. She doesn't bother worrying about her health, because she isn't strongly attached to this world. Is your mother that way?  Doesn't really want to focus on the illness because she is tired of this old world anyway?

I know we’ve talked about this before but, YES; it’s like we have the same mom. She is focused on her “reward in heaven” and often talks this same way. My dad does this, too, and they think it is quite a ball of hilarious fun to “insist” to each other they must die first so they don’t have to live without the other. (The Winnie-the-Pooh argument.) She does go about her life in relative cheer, so it’s not like she mopes around looking for ways to end it all, but she does say her life has been good and she wants to be alleviated of the troubles of this world. 

[Guest]

@Seasider too, she has complained of pain quite a lot, but it’s hard to know why there is pain in any given instance because of her other degenerative illness. She would definitely decline more aggressive chemo. When she was first diagnosed with bc, she behaved as though she was going to do nothing and just wait around while cancer took over. But her bc was highly treatable and she went through a roughly similar treatment plan as mine. 

[Guest]

5 hours ago, prairiewindmomma said:

Hey, Quill, I went digging into some studies (to occupy my brain while I'm listening to a conference....). It appears that Faslodex works as an estrogen blocker. That is a similar action to Arimedex. Since the studies are so strong to support long-term use of Arimedex (10+ years) as a preventative after certain types of cancer, I wonder if they are using Faslodex in a preventative way as well to block estrogen reception given her higher markers. 

That could be. Thanks for finding that out! 

Her bc was the same as mine and was ER+

[Lizzie in Ma]

My MIL just finished treatment for breast cancer and now they found a tumor in her lung and have biopsied it and it is also cancer.  She NEVER remembers what the doctor says to her or the names of anything and won't let anyone go with her or write it down.  It is maddening.  All we know is she will be having more treatment and no freaking details.

[Pawz4me]

As far as treatment for metastatic cancer "just in case" -- Yes. Based on what I've learned since DH's diagnosis in July 2017 I think that's entirely possible and probably not uncommon at all. Even with all of our modern surgical and imaging techniques it's still sometimes quite difficult to impossible to definitively say "cancer" or "not cancer." Taking the patient history into account, rising tumor markers and an inconclusive biopsy--it doesn't surprise me at all that an oncologist would recommend treatment just in case. The choice to start or not, of course, would have been hers to make.

I'm sorry your mom is having all of these communication difficulties. I realized from the time I first met DH's family decades ago that clear communication was not their strong suit, but . . .OMG throw in a serious medical diagnosis and heightened emotions and dealing with their mis-communications (on top of a major lack of clear understanding of medical terms/conditions/diagnoses that I thought were fairly common knowledge), and his mom trying to fill in the missing blanks with wishful thinking--it just about drives me batty.

[PrincessMommy]

my mom was stubbornly non-compliant and vague about her medical issues.  Except her transplant - she was obsessive about taking her transplant meds to the point where they probably had a year's worth of meds in the house when she died - go figure.

I think part of it is for older people their health is the last bit of autonomy they have.  Everything is slowly slipping away from their control but they can still control information AND what/when they do stuff for their health.   

Is there any way one of the sisters can have her put on the list of people allowed to talk with the doctor/nurses?   Is there any way you can talk her into that?  Otherwise, I have no advice.  It is SO frustrating.

[Guest]

Quote

Is there any way one of the sisters can have her put on the list of people allowed to talk with the doctor/nurses?   Is there any way you can talk her into that?  Otherwise, I have no advice.  It is SO frustrating.

Probably not as long as my dad is still alive. I think if it were her alone, she would conceed to one of us “meddling” more and would probably give over health POA.  But as long as my dad is alive they can be two happily-in-denial fact avoiders. Pffffth. 

[Monica_in_Switzerland]

(I'm laughing at the birthday party being a big deal vs big ordeal.  Maybe your DH knows *exactly* what he's saying.  😄  )

 

 

[HS Mom in NC]

My step-dad uses prostate for prostrate and phantom for fathom.

When we did our estate planning last week I had all my children legally granted the privilege of being able to discuss my medical issues with the doctor if I'm incapacitated.  I know in general people tend to calm down when they can speak with the doctor directly and ask all their questions.  Some people ask more than others.

As a Christian I'm not bothered by people looking forward to eternity with Jesus and saying so.  I think Americans in general are weirdly avoidant of issues related to their mortality and the mortality of their loved ones (read Being Mortal and Smoke Gets in Your Eyes for more on that,) and for some reason get upset when other people aren't. My death is inevitable.  I have convictions about the afterlife.  Why would someone be upset about me talking about those?  Isn't that avoiding facts?  For an elderly person with a history of cancer to sound reconciled with death is good thing if you ask me.  And as much as I share Quill's tendencies for a just the facts ma'am, take the bull by the horns approach to medical issues, how I would feel about that in my elder years could change, and I know not everyone is like me and there's no reason for me to try to get them to be like me.  I'm giving up trying to control or manage other people because I hate it when people try that with me.

My step-dad is not a deal with it straight on, know the details kind of guy about his own medical issues. He's a grown man who is mentally competent to choose how to handle his care and it drives my mother nuts, so when he's been hospitalized I'm the buffer between them. I take her down to the cafeteria and let her ask her same questions of me about what the doctor said over and over and over again so step-dad doesn't have to.  She ruminates over the details out loud, so I stand in for him and ruminate with her away in his place so he can have some peace.   He doesn't want to think about it and he doesn't want to ask tons of questions.  He wants the doctor to tell him what the doctor recommends and then he just does it.  He doesn't want to know the details of the procedure beforehand. Mom wants to rehash the details of the procedure over and over until it happens.  I want my care my way, she wants her care her way, and he wants his care his way.  While I wouldn't make the same choices he does, I respect his choice and let him do it his way because I would be absolutely LIVID if my spouse or child interfered with me getting my care my way for my own body while I was competent to choose.  Seriously, there would be hell to pay.

Quill, I suggest making peace with the idea that this is the end of the last chapter of your mom's life and while she's competent to choose she will choose exactly the opposite of what you would choose. Focus on being OK with that.  She is going to die, maybe sooner, maybe later.  If it's sooner, better to be psychologically prepared for it, and if it's later, it's a bonus.  Keep in mind that she is getting medical treatment from a specialist in the field, so someone capable of evaluating the situation and treating the problems according to science is on it. She's not being neglected. Take this time to focus on what makes the end of her life happiest for her.  Make sure you've explicitly stated your wishes to your kids about what you want at the end of yours and make sure your legal estate planning is up to date with your wishes.

[Janeway]

I never saw the original post, but wanted to say I am sorry for all you are going through, whatever it is. (((hugs)))