Denial.... and how to deal with it.

[warrior queen]

I am on the other side of the country, visiting my sister who is at the end-stage of adrenal cancer.
Sbe looks like a walking skeleton
She discharged herself from hospital and is now home - but is supported with home visits from a nurse and is on oxygen. She xecided to leave when she found out the Doctors had written a DNR order and palliative care only on her chart.

The illness, I can deal with. I knew what to expect before I came here.
What I am having trouble with is the fact that she and her hubby are in complete denial about just how ill she is. They both believe that she will recover from this and especially hubby... when he speaks about it at all, it's always with the expectation that there will be an 'after this is all over and T comes good, then we will......'

Unfortunately, there is no possibility that T will get better. None at all. One of the mestatised tumours has grown 8cm in a little more than 3 weeks The others have only responded minimally, as in they have stopped growing bigger for now under aggressive chemo and radiation (but were already quite large, and there are quite a few of them.)

It has been really difficult being in conversations with them where they are talking long-term recovery.... I have been really careful not to say anything that's negative in any way.
But it's very hard not to - I am afraid for G (her hubby) because he is so far in denial that it will completely devastate him when she actually passes away

T might make Xmas. But she will be all but in palliative care by then. She has rallied a little since walking out of hospital, but having seen this before I can see clearly that this is just a false bounce-back before it gets to the point of no return. She and I were always pretty similar in height/weight..... in less that 3 months since diagnosis, she is now around a third of my weight and has shrunk by nearly a head in height....

Have you ever dealt with someone who so completely denies the extent of their illness?
How did you handle it? What did you say when asked directly what you think?

 

[Noor]

I am on the other side of the country, visiting my sister who is at the end-stage of adrenal cancer.
Sbe looks like a walking skeleton
She discharged herself from hospital and is now home - but is supported with home visits from a nurse and is on oxygen. She xecided to leave when she found out the Doctors had written a DNR order and palliative care only on her chart.

The illness, I can deal with. I knew what to expect before I came here.
What I am having trouble with is the fact that she and her hubby are in complete denial about just how ill she is. They both believe that she will recover from this and especially hubby... when he speaks about it at all, it's always with the expectation that there will be an 'after this is all over and T comes good, then we will......'

Unfortunately, there is no possibility that T will get better. None at all. One of the mestatised tumours has grown 8cm in a little more than 3 weeks The others have only responded minimally, as in they have stopped growing bigger for now under aggressive chemo and radiation (but were already quite large, and there are quite a few of them.)

It has been really difficult being in conversations with them where they are talking long-term recovery.... I have been really careful not to say anything that's negative in any way.
But it's very hard not to - I am afraid for G (her hubby) because he is so far in denial that it will completely devastate him when she actually passes away

T might make Xmas. But she will be all but in palliative care by then. She has rallied a little since walking out of hospital, but having seen this before I can see clearly that this is just a false bounce-back before it gets to the point of no return. She and I were always pretty similar in height/weight..... in less that 3 months since diagnosis, she is now around a third of my weight and has shrunk by nearly a head in height....

Have you ever dealt with someone who so completely denies the extent of their illness?
How did you handle it? What did you say when asked directly what you think?

Wow, in this country only patients and families can decide DNRs and palliative only.

The thing about cancer is unpredictability. I have seen a person turn around from Grade 4 pancreatic cancer after stopping treatment, I have also seen it go so fast it goes from 1 to 4 to death in 10 days.

Another close friend is going on 14 years past her prognosis date, still has cancer in her body but it stopped spreading. She did then and still does look like a walking skeleton.

I have also seen the rallying before death, I always suspected it was a sign of a body shutting down and the brain releasing endorphins to deal with it. Sometimes the rallying is your body flushing out the chemo drugs.

In answer to your questions, yes I have dealt with someone who so completely denies the extent of their illness and unless there is something that could make them better, like antibotics with an infection, I go along with their wishes. Their well being is what is important in this situation, if it helps them to believe then I am fine with that.

When ask directly what I think, I may tell them some not all.
Nothing I think is going to change the situation or stop them from dying so my opinion is not really worth mentioning.

Her death is going to floor her husband regardless. His keeping her from falling into despair before she dies by his beliefs is not such a bad thing.

 

[ms_ann_thrope]

I am on the other side of the country, visiting my sister who is at the end-stage of adrenal cancer.
Sbe looks like a walking skeleton
She discharged herself from hospital and is now home - but is supported with home visits from a nurse and is on oxygen. She xecided to leave when she found out the Doctors had written a DNR order and palliative care only on her chart.

The illness, I can deal with. I knew what to expect before I came here.
What I am having trouble with is the fact that she and her hubby are in complete denial about just how ill she is. They both believe that she will recover from this and especially hubby... when he speaks about it at all, it's always with the expectation that there will be an 'after this is all over and T comes good, then we will......'

Unfortunately, there is no possibility that T will get better. None at all. One of the mestatised tumours has grown 8cm in a little more than 3 weeks The others have only responded minimally, as in they have stopped growing bigger for now under aggressive chemo and radiation (but were already quite large, and there are quite a few of them.)

It has been really difficult being in conversations with them where they are talking long-term recovery.... I have been really careful not to say anything that's negative in any way.
But it's very hard not to - I am afraid for G (her hubby) because he is so far in denial that it will completely devastate him when she actually passes away

T might make Xmas. But she will be all but in palliative care by then. She has rallied a little since walking out of hospital, but having seen this before I can see clearly that this is just a false bounce-back before it gets to the point of no return. She and I were always pretty similar in height/weight..... in less that 3 months since diagnosis, she is now around a third of my weight and has shrunk by nearly a head in height....

Have you ever dealt with someone who so completely denies the extent of their illness?
How did you handle it? What did you say when asked directly what you think?

After she dies are you going to tap the hubby?

 

[allateup]

Have you ever dealt with someone who so completely denies the extent of their illness?

I have a miserable enough time simply reading your pitiful "illness", wanker.

 

[ishtat]

Denial is their way of dealing with it. Butt out.

 

[pink]

I don't think there is anything you can do.

 

[ms_ann_thrope]

I thought it was all about drinking tequila?

 

[Wings]

Perhaps that's how he's had to talk about it with her, pretend that she will be getting better. That may be the only way he gets out of bed and it's not for you to change. Perhaps she's insisted that the only way they can discuss the future is if he says there is one with her. Perhaps they both know full well what's happening but have chosen this way to get through it.

It is not for you, or us, to judge how they are grieving (which it reads like you know that) but for you to support and even discuss what sorts of sights you'll see when she improves, and what sorts of meals you'll enjoy when she can go out on the town again. That may be the best comfort that you can offer right now.

 

[allateup]

Cool...

Reads like the "darkie" support line is now open.

 

[Noor]

Warrior Queen- when you got melanoma, in the beginning you were definitely in denial about the seriousness of it.
When some of us tried to point it out, but you weren't having it even though it was stuff you could have easily googled yourself.
I figured that is just where you needed to be in order to deal with it at that point.
So we supported you without trying to change your thinking, accepted how you felt about it and just went with it.
You may not see it, but you need to do the same thing here.

 

[lovetoread]

Avoid making it about yourself. This goes hand-in-hand with the one-upmanship. We live in a time where people want to make grand gestures of support, and that's great. But before you sign up for ribbon walks and shave your head in solidarity and start crowdfunding campaigns, make sure that they will actually benefit your loved one. A lot of people seem to actually be doing all of these things for the positive attention that “supporting the fight against cancer” gives them, and it does very little for a sick and exhausted friend. Actually, sometimes the obligation to constantly show gratitude for this sort of behavior does more harm than good. Many of these cancer “benefits” give little to no money to cancer research or prevention at all. Case in point: October's “pinkwashing.” It's become a marketing strategy more than anything.

http://www.slate.com/blogs/quora/20...ay_to_someone_who_s_very_ill_or_grieving.html

 

[snugglestruggle]

WQ I think you need to be real with her but at the same time side step the whole "are you daft?, the end is near". Sometimes it's best not to say what your thinking.

Try to keep your mindset, discussions in the present ,like what's going on today. If you don't talk about tomorrow, then the whole denial thing never enters in your mind.

 

[Smoottg103]

da one in denial is the rat face in yo av that shit could gag a magot.

 

[allateup]

Uh oh...

...daddy's little girl is being naughty, consorting with a "darkie" hater.

None of your standard "cunt" or "retard", seaniepoo?

 

[Debbie]

Denial is normal when you are faced with the prognosis of a terminal diagnosis.

From an outsiders pov it might seem like they are pretending it isnt going to happen and hope is what they hang onto because they dont want to accept that they or their loved one is going to die.


I dont like saying to people you should do this you should do that. Human beings are emotional and everyone reacts differently.

My suggestion is you continue to be supportive. It is her life and sadly her end of life and all loved ones can do is be there in the moment. Listen to them. Love them.



Have you ever dealt with someone who so completely denies the extent of their illness?

Yes. Several times with loved ones and while working as a palliative care person.


How did you handle it?

At first I didnt know what to do What to say.

What did you say when asked directly what you think?

That if they needed more information, a second opinion, to talk to their dr again, to talk to someone from the cancer society, a counselor etc I would help them in anyway I could.

No one knows how they are going to react/cope when they or a loved one gets this sort of news.

 

[parodyluvr75]

It's her journey, you should be thinking about how she wants to take it.

I had a friend was terminally ill, who fought it and held onto hope until to the last minute of his life, because he didn't want to die. I can't imagine as bad as he got before he died that he didn't know he was coming to his end.

Then there are other people deal with it differently, they accept it.

In the end it's about them, not you or what you'd do. If she wants her last days positive and full of hope, then support her unconditionally.

It's her journey, help her make it whatever she needs.

 

[warrior queen]

I was kinda looking for conversation pointers as to how I can be part of the conversation WITHOUT being negative, but still being real.
But never mind..... I've worked it out for myself during today. Thankyou to those who replied with advice

As for my trolls - merry fucking christmas to you too

 

[La damnee elle la licorne]

 

[BabblingBrooke]

Having lost several relatives and friends to terminal illnesses, I was shocked to read that the doctors would sign a DNR or palliative care only. That just floored me. I don't even believe they would suggest it here in the states as its a very personal decision.

But, it doesn't appear that they can or would in Australia, either.

It is the same here in Australia.

Did she misunderstand? Did she want them to decide so she doesn't have to? Have you misunderstood, Warrior Queen?

 

[warrior queen]

Having lost several relatives and friends to terminal illnesses, I was shocked to read that the doctors would sign a DNR or palliative care only. That just floored me. I don't even believe they would suggest it here in the states as its a very personal decision.

But, it doesn't appear that they can or would in Australia, either.


Did she misunderstand? Did she want them to decide so she doesn't have to? Have you misunderstood?

No, it was not a mistake.
Her primary care oncologist had noted on her chart that she was palliative care only and there is a DNR order that she does not remember signing. Both her husband and her mother were in the room when the nurse read it out. (They believe she was asked about the DNR while under the effects of strong painkilling medication, and was not 'of sound mind'. But the 'palliative care only' order was done by the doctor.)
That's why she's home - between the 3 of them, they decided to sign her out of the ICU against medical advice when they were informed she was to be moved to a hospice.

 

[BabblingBrooke]

No, it was not a mistake.
Her primary care oncologist had noted on her chart that she was palliative care only and there is a DNR order that she does not remember signing. Both her husband and her mother were in the room when the nurse read it out. (They believe she was asked about the DNR while under the effects of strong painkilling medication, and was not 'of sound mind'. But the 'palliative care only' order was done by the doctor.)
That's why she's home - between the 3 of them, they decided to sign her out of the ICU against medical advice when they were informed she was to be moved to a hospice.

She can reject the DNR. Her husband can, too, I believe. There is no point in her being relegated to one if that is not her wish. Convincing her to sign one when she's drugged would be malpractice.

In the states, even palliative care only is something elected by the patient. Someone needs to speak to the hospital if these are not her wishes.

They were ordering her moved to a Hospice? That's just as odd. I will say, though, our Hospice experiences have been really quite positive. That is a good place to be in an end-of-life situation.

All the best to your friend (and her friends and loved ones)

 

[NOIRTRASH]

I cant address WQ's family but it seems to me denial is a useful coping action because so much of our lives is nonsense.

 

[ishtat]

No, it was not a mistake.
Her primary care oncologist had noted on her chart that she was palliative care only and there is a DNR order that she does not remember signing. Both her husband and her mother were in the room when the nurse read it out. (They believe she was asked about the DNR while under the effects of strong painkilling medication, and was not 'of sound mind'. But the 'palliative care only' order was done by the doctor.)
That's why she's home - between the 3 of them, they decided to sign her out of the ICU against medical advice when they were informed she was to be moved to a hospice.

All that information is second hand from the very people you previously said are in denial. How can their recollection be relied upon. Be careful what you believe.

 

[Aella_]

1.Gosh, terrible situation for all three of you.

As far as I've seen in 1-2 friends of mine, initial denial is often good and adaptive for those who receive such shocking news. Acts as a shield against the initial despair and eventually people get over it.

But given that in their case, it's a matter of weeks or days as opposed to months, and she'll be rapidly deteriorating… I think that you're right: it might end up with disastruous consequences once they will inevitably be shocked into reality without due preparation.


2.I personally have no idea how I'd react to that, other than perhaps approaching the nurse who is doing the home visits -she must have heaps of experience with such cases.
After you tell your sister's husband first and obtain his consent for that, and with him present. to the conversation-.

I'd reassure them first that I'm Not asking the nurse to breach any confidentiality issues and discuss your sister's situation, given that you don't have your sister's consent. But I'd ask her if she could give you some helpful online resources or the contact nomber of a professional (who's not involved in your sister's care) who could 'educate' you in such matters. A bit on the cusp of ethical matters, but I believe that they might all be more receptive to that.

 

[warrior queen]

All that information is second hand from the very people you previously said are in denial. How can their recollection be relied upon. Be careful what you believe.

There is absolutely no way they would have signed her out against advice unless something like this happened.
She was on intraveinous pain medication, and now her pain control is much less effective.

And they are searching for a new doctor as a result.

No-one does that without a bloody good reason! Not at this stage of illness