She's in denial--what can I do?

prake · February 2013

prake · February 2013

I have a very close family member who is dealing with stage IV breast cancer. Other members of my family are currently taking care of her, but we are all increasingly sad and frustrated with what to do.

When she was first diagnosed and told that the cancer had spread to her bones, she would deny that it was any big problem and treatment wouldn't be an issue. She kept talking about how she would be returning to work soon, etc. She refuses to discuss things such as an advanced medical directive or access to her financial accounts (she is unmarried with no children). It seemed to be typical denial that something was wrong--pretty common at first in cancer patients, from what I understand.

However, things have reached a whole new level and the denial is continuing for months and months. And I have no idea if she's going to be okay for awhile or I'm going to lose her soon. We, frankly, have no idea what's going on. She refuses to sign HIPAA forms which would allow her sibling (who is caring for her) to have access to her medical information. My family members have witnessed what the doctors have said in some appointments, but then she tells us a completely different story. She never tells anyone (including close friends) that it's stage IV and spread all over her bones, she never tells us what the doctor says, and lies about having taken her medication when she didn't.

Here is what we know:

- The cancer has spread to her bones. The radiologist came out and told her she is "riddled with cancer from head to toe." We don't know if they have told her that the cancer has spread beyond her bones, or the tumors are spreading within her bones.

- There appear to be no initiative to deal with the tumor in her breast. There frankly seems to be a lack of urgency on all fronts.

- Her cancer doctor told her (in front of a family member) that she's "behind the 8 ball." Other doctors have said "I'm so sorry" to my family. We know she's in radiation to help with the pain but they don't plan on starting chemo any time soon. Is this because it's too late and they just want to manage the pain? We have no idea; she doesn't tell anyone anything.

- She is refusing to take her anti-nausea medicine (though she claims she is), so she can't keep any food down and is losing 5 pounds a week. She had disordered eating to begin with (she is in her mid-50s), and part of her seems happy that she's getting so thin, even though the doctors keep telling her she needs to eat to be well. But she won't take her meds and refuses to eat the various types of foods offered to her.

We love her very much, despite some of her personality issues, but unfortunately they are becoming a big issue now with her cancer. She always has to project things as "perfect," partly why she maybe didn't go to the doctor when she had a lump before.

I'm terrified I'm going to get a phone call that she passed and be completely shocked, because that's not the route I (originally) thought this was going, at least according to her.

I love her and want her to live. Can I do anything? Are our hands just tied as family? She has confided in nobody--NOBODY, not even lifelong friends--about being scared, about her fears, etc. She is almost living on a different planet to what is really going on, but sounds very sane and rational if you didn't know the full story. Never in a million years would she agree to go to counseling. I'm not sure if she has ever once in her life shared a doubt, insecurity, or "weakness" with anyone in her immediate family or with her close friends. (And we are pretty nice, sane, rational, sympathetic people, and there isn't any family drama that would prevent her from sharing.)

I feel helpless and want her to live. I want her to eat, gain weight, drink water (she is now dehydradted and has to be rehospitilized), but the more these things are suggested to her, she lies and claims she's been doing it or says it's nobody's business. Which she's right--it is her choice to live--but it just doesn't add up; is she in denial, or acceptance and just doesn't want to be bothered, thus the lying?

Any advice for how we can get through to her? And, based on the scarce clues we've gotten from overhearing the doctors, does it mean she doesn't have long? According to her, this is totally just a bump in the road and she'll be clear from cancer in no time. Based on the clues we've gotten from overhearing the doctors, this sounds like a terminal situation with not much time to live? I have no idea and I'm so anxious over the thought of losing her.

Thank you in advance.

thefuzzylemon · February 2013

Hello...my goodness. She Sounds like she's been a little stubborn all her life! LOL

Ok. Here's my thoughts. You should seek counseling. You can't, and shouldn't, try to make her do anything. A cancer psychologist would be able to help you. Please don't try to understand what she is going through...you simply can't. For the financial issues, what does she love? Maybe you could start a conversation by asking her where shed like her funds to go...American cancer society, humane society...women's shelter...something that she would want to talk about, support and donate to. Then get into how to arrange so its all taken care of.

Has anyone just sat with her and just spent time with her to spend time with her? Don't press her for info...just let it be. When she does talk, listen closely. Let go of what you want...this isn't about you. Once you do that, you will see her more clearly. BTW...if that felt a little sharp, its probably true...

As far as the time she has left...there's no answer for that. If she has such a strong faith that she feels she'll be fine...why does it have to ne called denial? Why is it such a problem that she doesn't want to show fear or weakness? It just feels like she surrounded by well meaning friends/relatives who want to stuff her into a typical near death experience so they can understand this a little better like they do on TV.

Ok...its really not suppose to sound so brutally mean...I wouldn't have posted anything if I didn't think you needed an honest opinion. If you'd rather have a light/Fluffy/supportive of your position, I apologize.

I know you love her. I know this sucks really bad. I hope you are able to find what You need to help her. Best wishes.

melmcbee · February 2013

Im so sorry for what you and your family are going through. I dont have an answer for you about treatments for stage IV breast cancer. Maybe you can go to that forum and ask. It sounds like to me she has just given up and doesnt want to fight. You might could talk to her doctors and ask them to explain to her that she needs to have someone as her healthcare advocate or whatever they are called. I just wanted you to know that I am sorry you are having to go thru this and I am sending prayers up for you and your family.

exbrnxgrl · February 2013

I have stage IV bc with a bone met. I second fuzzy lemon's advice. It is very hard and truly stinks but this is about her, not you or any other family members. I have no doubt that you all love her but she is an adult and she gets to make the medical decisions even if they are wildly different from what you would want or choose. I think, given how little info you have, it would be difficult to speculate on how far advanced her disease is, how long she might have or if there are any treatments that might help. I think the best thing you can do is offer her your unconditional love and support and hope that she let's you in to her world eventually. The most important thing is not to abandon her even when she makes it difficult. Wishing the best for all of you.

Cowgirl13 · February 2013

Until you have been diagnosed with cancer, you can't imagine what it feels like. I'm only stage II and if my family had pushed me at all, it would have been terrible. This is about your sister--please respect her journey and how she wants to handle it.

C-squared · February 2013

AMEN! to all of the advice given here.., especially the fuzzleymon's. prake, I am SO glad that you reached out but you have to know that you canNOT control this situation. Please attempt to provide support. Judgement will likely result in more resistance. Hang in there and do your best to respect her.

prake · February 2013

Thank you all so much for your honest replies. It's very helpful.

I should clarify I haven't been one of the family members in charge of her care. I'm going down to visit in a few weeks and have debated which approach to take. Rather than be a pressure, I will continue to be the way I have over the phone with her--talk about whatever she likes, say that I'm an ear to listen to, and not push on what she's doing.

She's been stubborn her whole life; why would we expect it to change now? And you're right, we can have no idea what she's going through. I just have to let go of the "control" and my desire to know what's going on, and hope for the best, but plan (mentally in my head) for the worst, just in case. But yeah, I do not want her to feel we've given up or are just waiting for her death. Letting go of not really knowing what's going on when I really care about her will be hard--but I need to.

That's a good idea about talking about which charities maybe she'd like to donate to...but right now, if anything, she is very concerned about her finances and doesn't want to spend any money on anything not directly related to her bills. And anything implying she may not be around for the next 30+ years she takes great offense to.

I've sent her a care package with some things I thought she'd like, we've talked on the phone, and I hope my visit is a good one. I've been having some health problems myself (nowhere near as serious), and she has been very interested in them and asking me how I'm doing. It makes me a bit uncomfortable, since it seems like it's silly for me to complain given her situation, but if it distracts her from herself, then I should just let her talk about whatever she wants, even if it's my health problems.

I have to accept that she's nothing like me in terms of how she approaches her health, and that I can't even imagine what she's going through.

Thank you again for your replies. I have never been through something like this and it's hard to know what to do for the "best," and getting perspectives from people in similar situations is incredibly helpful. I much prefer brutal honesty to anything sugar coated, so I do really appreciate it.

Outfield · February 2013

Prake, I come at this with different experience, having worked in healthcare for years, but I so much agree with the Lemon and C-squared. There's this structure put out there of how people are "supposed" to experience things, but it's just not a given. I have known some patients who continued in denial even when they were within days or hours of dying. If you push her and doing so drives her away, that's just more loss for both of you.

The problem in your specific case is that it leaves you with a couple questions you as family have to answer without her input. First, what does she want in the last bit of time when she is unable to make decisions? Second is her estate if she has no will.

The law will take care of the second problem, although it will be more of a mess than if she had a will. The first problem is probably in your laps. It's great for a person to have advance directives, but a lot of people don't. In that case, there's a hierarchy of who gets asked to make those decisions. The laws differ state to state, but in most places immediate family comes first. If her closest relatives are a group of siblings, it will be important for you all to be on the same page. It's horrible when the doctors don't know the patient's wishes, the patient can't communicate them, and the family is in disagreement. If there's nobody closer than you sibs, you all may want to consider getting together and just having this out in the open amongst you all, that you may come to a point where you will have to appoint a spokesperson or begin to think about how you will make decisions. If there's a way for someone to ask her without pressuring her which of you she would want to be a spokesperson for her wishes, that would be really important, but it sounds like it might not be.

Being stage IV doesn't mean she necessarily has a short time to live, but the other things you mention are bad prognostic factors - rapid weight loss, getting dehydrated.

Peace be with you.

pupmom · February 2013

Prake, in addition to all that fuzzylemon said, you might look into declaring her incapacitated. It is a tough step to take, but if you think it might save her life or finances, might be worth the inevitable stress. She will be mad and the court will appoint her an attorney, assuming she doesn't have one already, to defend her rights. But if she truly is cognitively impaired while dealing with terminal cancer, it might be in her best interests for family to pursue this.

thefuzzylemon · February 2013

Prake - I'm so thankful this helped you, your family and a sister to all of us here. My eyes filled up with tears knowing that you really heard the message from all of us here. Then you recognized the real opportunities and you're going to act on it. That shows how much You truly want to help her and I'm impressed. I'll Keep this thread in my favorites. If you need any more advice or suggestions, I'll be here for you. I take great pride in educating and speaking to the realness behind what this process has taught me and continues to teach me. You may just be the only person she has who has gone that extra step to support her as best as a person can. Kudos to you.

C-squared · February 2013

Yes! Fuzzylemon!!!

Outfield · February 2013

Yorkiemom,

"Decicisional capacity" and "competence" aren't quite the same thing. The first can change from hour to hour (nobody is decisionally capable under anesthesia) and is determined by medical/psychological professionals, and the second is a permanent legal determination made by the courts. What is most relevant in the situation of someone refusing medical care or not following recommendations is decisional capacity.

Having someone declared incapable of making medical decisions demands a high degree of dysfunction because it's a huge intrusion on personal liberty, which is legally valued very highly in this country. "Denial" isn't going to cut it, the person has to be unable to understand potential risks and benefits of decisions. Even people with moderate dementia who are unable to manage their own affairs often maintain medical decision making capacity. People have the legal right in this country to make decisions that are bad for them.

Prake, if you think she truly can't understand the repercussions of potential decisions, then do consult a lawyer but also talk with her doctor. But realize that this opens a huge and horrible can of worms. Subjecting someone to a medical treatment that he/she does not want is legally "battery" (same as hitting them) if the person is decisionally capable, and is psychologically not too different. So even if she doesn't understand her decisions, deciding to pursue treatments she does not want could be truly horrible. It would also be difficult to find medical treatment teams willing to proceed with active treatment of cancer in that situation.

Leah_S · February 2013

Prake, I'm going to offer another point of view. This might not be denial, but acceptance. She knows the cancer has spread through her bones even if she doesn't want to talk to the family about this. Quite frankly, it seems like she hasn't told anyone what's going on, and that's her right. From the little you do know, it seems she's getting standard of care for bone mets. She's getting radiation for pain and the other "medications" could be anti-cancer drugs called aromatase inhibitors. They're not chemo but they're powerful cancer fighters. Very often chemo is not the first line of treatment for BC mets, and leaving the tumor in her breast is also what is usually done in Stage IV BC. Since she doesn't want to tell anyone in the family the details of her treatments we can only assume that this is what's being done.

I find the eating disorder to be more worrisome. How has this been dealt with for her in the past?

So denial or acceptance, whichever one it is, could be her coping mechanism, and you might want to see if there's any way she'll let you help her with the eating problems.

I have to say I strongly disagree with the suggestion to look into having her declared incapacitated. She has the right to accept or refuse any treatment that's offered even if the people who love her disagree.

Please let us know how things are with her, and with you.

All the best.

Leah

learnin · February 2013

Prake - you may know this stuff already - if so, apologies - but some general info may help when you go visit.

Not dealing with the breast tumor is a normal option in stage IV. If her body is already "riddled with cancer", breast surgery is not going to change the outcome.

And yes, the outcome is eventual death. Stage IV breast cancer is incurable. Predictions about how long she has are a whole other issue, and there is no way to guess based on the info you have. However it is safe to say she does not have "30 years". And that her treatment decisions are not about "saving her life".

In stage IV, a common treatment is anti-hormonals, rather than chemo. Which would be a pill, and you would have no idea if she is taking it or not, unless she told you. So it is possible that she is following more medical advice than you would initially think.

Good luck in a difficult situation. Sounds like listening is the biggest gift you can offer - both to her, and other struggling family members.

Jelson · February 2013

Prake -

what struck me was your statement "I've been having some health problems myself (nowhere near as serious), and she has been very interested in them and asking me how I'm doing. It makes me a bit uncomfortable, since it seems like it's silly for me to complain given her situation, but if it distracts her from herself, then I should just let her talk about whatever she wants, even if it's my health problems."

By talking about your own, eventhough less serious health issues, you might cause her to reflect on her own. If you talked about your concerns about your own mortality, about your loved ones - how they are concerned and sometimes pushy, how your illness has made you think about getting your own financial affairs in order because you have learned how difficult it would be for relatives if you were to die without a will. The conversation CAN be all about you (but it won't really be).

You have really given me much to think about - there is much good advice on this thread. I am going to share snippets with my husband and his siblings who are grappling with caring for their incredibly stubborn 95 year old father who lives alone - an hour from his closest child, does not have a will or health care proxy, has throat cancer and can neither hear nor speak.

thefuzzylemon · February 2013

This topic has taught me several things too. I love these boards, the wealth of knowledge and sharing.

Something else has been on my mind Prake. The diagnosis and all the terminology and everything in between is complicated. Very complicated. She may not understand all of this herself. You're getting most of your information by third parties. I can tell you, this is a terrible way to make decisions on anything. People who decided to carry information forward on my situation had me 6 feet under...it was what they understood and very inaccurate.

You might consider showing her these boards...and more specifically this thread you started. There's some great info here and, again, this is a great testament to what you are willing to do to help. You've inspired others in the process too! Bonus kudos.

prake · February 2013

Thank you all so much for the further thoughtful replies.

I can't tell you how helpful it is to hear that it sounds like her treatment course is normal for someone in stage IV mets. We keep thinking the doctors aren't being aggressive enough. I've done some research but still feel quite clueless on what a standard course of treatment is for her specific situation (of which my knowlege is limited anyway), and she doesn't share what the doctors say. I do know that the type of breast cancer she has is the hormonal type (which can be good news?), so it would make sense if she is taking medication for that.

Yeah, there is no way anyone should try to declare her incapacitated at this point. She is a very intelligent woman, and even though she's evasive with us, if you put her in front of a judge I'm 100% sure she would be declared competent. She would be FURIOUS at us. She has no will, no advance directive, and keeps talking about moving back to her home and looking for a new job. I guess that's why I say she's in denial, because she talks like she just has the flu and will get back to her "normal" life soon. But yes, either way this is clearly her way of coping. And that's okay. And good point about my health issues maybe helping her recognize her own. I hadn't thought about that.

I love her dearly but I think she has had lifelong psychological issues. She had always been very self-centered (every conversation goes back to her--that's the best way I can describe it). I'm not sure I would say she had a full-blown eating disorder...but disordered eating. Even at her age, she has been obsessed with being attractive and thin, worked out nonstop (which is fine by itself), and would some days eat very little. It seems now she's almost proud of losing all this weight? I know it sounds strange but that's the impression I get.

We will find out in a day or so if she is going to be admitted to the hospital due to dehydration.

I have gotten more information and help from your replies than in my hours of research. I can't express my gratitude enough!

thefuzzylemon · February 2013

I've learned more from.these boards than any other source...including the doctors.

As far as one type of diagnosis being "better" than another...I'm not sure how to confidently say one way or another. I don't trust cancer...I don't turn my back on it and I know its unpredictable and does not fight fair. I think being able to tolerate and have response to treatment is important.

Yeah...she really is going to be hurting herself if she doesn't stay hydrated and taking in calories. My sister is so self absorbed that way too. I can't wrap my head around that way of thinking but I know its like a gravitational force and she can't see past it. Sad, really.

prake · February 2013

Fuzzylemon I just saw your second reply--thank you so much for your insight. You sound like an incredibly well-informed and strong person!

That is a good idea. I'd be terrified if she saw this post , but I might gently mention the online community here. I've also thought about asking her "is there anything I can do for you that you didn't feel comfortable asking someone else? I won't tell anyone." Or just something so she feels free to ask me to help with something she's been stubborn about and doesn't want to hear "I told you so."

You are right the second-hand info thing is difficult. She has basically told us she doesn't like us talking about anything without her and wants to control information flow. This is all well and good but the news she tells us is incomplete at best, and lies at worst. So I am relying on other family members for updates...not ideal, but I don't know another solution. And I never tell her what I've "heard"--I try to treat everything she tells me like it's the first time I've heard it and that I believe all of it.

thefuzzylemon · February 2013

OMG...this is another thing some of us here are all too familiar with. I learned much more about the character of people I thought I knew...its an eye opener. They were "like that" all along, but I didn't pay attention to it.

She apparently likes you because you are you...pretty/thin/successful/caring...whatever it is so just be natural. Stay with whatever she knows of you...she likes it and it keeps You in a favorable position. I might ask her "what can I do? I don't know what to say, but I care about you and I want you to know you can lean on me." Then, without being asked, make lunch, get her mail, clean anything...just take care of anything you can without her having to ask...that's really hard for independent stubborn women to do - ask for help.

A Great other great resource sites are the American Cancer Society and LiveStrong. Dr Google is inaccurate so be careful with that one! LOL

Stormynyte · February 2013

I wasn't going to comment on this thread but I just can't stop thinking about it as it hit a personal note with me.

Please, respect her wishes. No matter what they are. No matter if you think she is crazy for doing or not doing whatever. Let her decide and back her up.

You said she is very private with her medical issues. She has every right to be. Don't try to get information out of her or use what little info you have to make her change the way she wants to go with her treatment.

I wanted to say something about treatment for stage IV, but I'm not really sure how to say it without sounding horrible. You say she is "riddled" with cancer. She may be past the point of "aggressive" treatment.. She may be past the point of any realistic treatment. This doesn't seem to be information she wants to share, so you really have no way of knowing if she is turning down treatment or doing just what her and her doctors decided was the best for her right now.

I am so very sorry you and your family have to deal with all of this, but it is so much harder for her to deal with. Let her do it how she chooses.

MelissaDallas · February 2013

You know, another thing is that sometimes when we are really sick we feel like we are losing our identity as anyone other than the sick person. Sometimes you just get tired of talking about it and just want to be treated like a normal old-self person. Odd as it sounds, it just gets to be a big boring snoozefest when that is all anyone wants to talk about.

prake · February 2013

Storm--totally agree with you. She usually volunteers the information. Now I only ask "how are you" and that's it. I hope that's okay to just ask that?

Other than that and offering to do something for her on the DL I will keep my visit as normal as I can. I've done well with this approach over the phone, so hopefully I can do it on person.

Stormynyte · February 2013

A normal "How are you?" is great! Normal conversation is something I've been lacking and missing lately. I get the "how are you", I say fine, then I get the "No, how are you really?" Ugh! Normal is good!

Alicethecat · February 2013

Hello Prake

It is to your credit that you have reached out to this forum and asked for opinions. I'm very sorry your relative, your family and yourself are going through this. It sucks. It really does.

That said - as someone who perhaps may share a similar personality to your relative - may I offer another perspective?

Breast cancer feels like everything is being taken away. From being an independent person with a busy schedule you suddenly become a patient. Instead of planning work days, meetings, holidays, nights out with friends, everything is put on hold.

You find yourself dancing to someone else's tune. Suddenly, you're in a world of doctors' appointments and quite possibly surgery (or not), chemo, rads and hormone treatments. You have to fit in with someone else's schedule - and you may or may not have much of a say regarding your treatment. In the early stages, you probably don't even know that there are options for treatment if you don't have a good oncologist.

It's all a nightmare. There is so much to learn and yet quite often there's not much time to take things in. You can go from being diagnosed in month one to having the op in month two and starting chemo in month three.

Can you imagine thinking you're a well person overall to finding out you have a potentially life-threatening illness in a matter of weeks?

Do you know that in hospital the nurses even lock away your medication - even though it's medication you might have taken for years such as an asthma inhaler - so that you have to ask them to unlock the cupboard. Can you imagine how that feels?

Very quickly there's very little in your life that you can control. For an independent person, that's a particularly painful loss.

When I was diagnosed with breast cancer in January 2012, I did not tell my parents or sister until I had had the mastectomy in February and was just about to start the chemo in March.

Sometimes you just need space in your own head to come to terms with what's happening, what the diagnosis is, what the treatment is and what steps you can personally take to help your chances.

There are things that you can control - who to tell, what to tell them and diet/lifestyle choices - and that gives you strength. You think, 'Wow. I am still a person. I have my own mind and I can make choices'.

If you feel that everything else has been taken away - including possibly your boob/s, hair, sense of well-being, it becomes incredibly important to still feel that you have choices.

A few months ago, my oncologist thought I might have bone mets. Fortunately, it did not turn out to be the case but he said that even if it had been the case, the docs can keep people going for many years in some cases - so please don't write her off yet!

And may I make a special plea - if there is any way you can encourage others to avoid using emotive phrases such as 'riddled with cancer' I would do it. Cancer is scary enough without such colourful terms!

I agree with the other posters that the food/dehydration challenges could be a problem. Why not start a conversation and ask her what her docs think about how she is eating and drinking?

As someone with a somewhat feisty nature myself, I hope my post will help to explain why some people prefer how and when to share information and ask for feedback!

With best wishes

Alice

prake · February 2013

Alice, Melissa, everyone else...what you have said has really been an eye-opener. I think we've all been selfishly thinking how we are affected, wondering why she doesn't do things differently, and that is not the right perspective at all. You've really helped me make a perspective shift and try to see things from her point of view. I'm going to print off/copy these replies and send them to some of my family members.

Alicethecat · February 2013

Hello Prake

Thank you so much for your comments. It was really nice of you to reply.

You sound like a very compassionate and open-minded person and I am keeping everything crossed for all of you!

Best wishes

Alice

PaulAndSandy · March 2013

I'm going to have to disagree with the statement of "until you have been diagnosed with cancer, you don't understand" and other similar comments about being pushed by family and that making it harder on the patient. I think what a lot of people fail to realize and/or accept is that YOUR cancer diagnosis affects more than just YOU when you have a family and when you live in denial, lie about your diagnosis, lie about taking your meds, refuse to hydrate and eat, and in the same breath say things like "I plan on living another 20 years." You're making it EXTREMELY difficult on your family by sending mixed messages and adding to an already stressful situation.

That said, I would have no problem whatsoever if a family member came to me and said, "I have cancer, I'm not going to tell you what kind and I don't want your help or suggestions throughout my treatment." That is perfectly 100% fine with me and I would respect that choice. But what is not acceptable is living in denial, dragging your family into it, talking about living another 20 years, and then doing things that lead to your demise.

If you want to die, fine, say it. If you want to live in denial and have family leave you alone, fine, say it. But it is horrible to drag your family into your cancer battle, tell them one thing, do another, and then complain about it.

As you may be able to guess, this hits a very personal note with me as this has been my experience as well with my mother's cancer battle. It has been horrible since we found out the truth about her cancer, trying to help her while she refuses the help she just asked for.

I wish you the best with your family member. I've learned to not let it get to me anymore... I help my mother as much as I can and encourage her as much as I can but I stop short of being annoying about taking meds, drinking, eating, and so on. I've told her, if she continues to act the way she does, the doctors may suggest not continuing treatment as it's obviously affecting her quality of life. So far that hasn't phased her, and neither has the multiple emergency room visits and week long hospital stays for dehydration, malnutrition, etc.

She's in denial--what can I do?

Comments

Categories