Telling our mother, who suffers from dementia, that she has cancer.

[Metaphilly]

My mother was recently diagnosed with pancreatic cancer, the doctors decided it was best to not check what stage the cancer was at or to treat mum e.g., chemotherapy. Moving back to her care home from the hospital mum became very agitated and delusional. She has not been eating or drinking well hence being in the hospital in the first place. Mum is now more settled and not delusional. Mum's dementia means more for short term things but also that she gets confused easily and does not like questions. However, mum recognises everyone and there are very much moments of clarity.

We are pretty sure that mum does not know she has cancer, though as I say she is very much still with us and there have been palliative care visits with coded conversations that would not take much to de-code.

Nevertheless it is the general opinion of the family to tell mum. So, impossible question I am sure but are there some general tips on how family approach family with news such as inoperable cancer, where we do not know the stage?

Many thanks.

 

[Jaded'n'faded]

I really wouldn't tell her! What purpose would it serve if it isn't going to be treated? 'Guess what mum - we've got some really bad news for you today - you've got pancreatic cancer and are likely to die in great pain!'

You've already said she doesn't understand much and gets confused easily - why add to her woes?

Please don't tell her.

 

[canary]

I wouldnt tell her
If you tell her she wont remember, but she will retain the emotional memory that something terrible is happening yo her, so she will either keep asking and every time you tell her will be like the first time she has been told, so she will keep reliving the shock. Or else, she will confabulate that terrible things are happening to her and she will be constantly fearful.
Much better to not tell her

 

[nitram]

I wouldnt tell her
If you tell her she wont remember, but she will retain the emotional memory that something terrible is happening yo her, so she will either keep asking and every time you tell her will be like the first time she has been told, so she will keep reliving the shock. Or else, she will confabulate that terrible things are happening to her and she will be constantly fearful.
Much better to not tell her

Agree with this.
For an analogy of the different ways facts and emotions are stored in the brain watch

 

[Jessbow]

I wouldnt either. Different if she was going to have treatment.
Why make the remaining time shehas left miserable?

 

[Jale]

I wouldn't tell her, even if she was able to initially understand what she was being told the chances are she won't remember. If the cancer was treatable I would think about telling her but I can't see anything to gain in telling her now.
Sorry that may not be what you want to hear,

 

[CAL Y]

I agree with the others. When my husband got cancer, I didn’t see the point as I knew he would forget so why keep putting him through it.
He was probably in mid stage dementia and was aware that there was something wrong with him but when he asked I told him there was a problem with his kidneys.
No need to say any more.

 

[Hazel 1944]

My mother was recently diagnosed with pancreatic cancer, the doctors decided it was best to not check what stage the cancer was at or to treat mum e.g., chemotherapy. Moving back to her care home from the hospital mum became very agitated and delusional. She has not been eating or drinking well hence being in the hospital in the first place. Mum is now more settled and not delusional. Mum's dementia means more for short term things but also that she gets confused easily and does not like questions. However, mum recognises everyone and there are very much moments of clarity.

We are pretty sure that mum does not know she has cancer, though as I say she is very much still with us and there have been palliative care visits with coded conversations that would not take much to de-code.

Nevertheless it is the general opinion of the family to tell mum. So, impossible question I am sure but are there some general tips on how family approach family with news such as inoperable cancer, where we do not know the stage?

Many thanks.

I would be prepared to answer honestly IF your mother asks very directly. You mention episodes of clarity. My husband has alzheimers and cancer and I listen in awe as he absorbs information and then forgets. You are best placed to make your own decision in your own way. Good thoughts to you as you work your way through.

 

[Palerider]

I don't know if this is of much use but pancreatic cancer is often discovered late sometimes known as painless jaundice and is one of the most untreatable at that stage. Telling someone they have advanced cancer who doesn't have dementia is difficult in itself and it takes a few conversations for the person to grasp what has been said to them and the family as well. My BIL was convinced my sister didn't have anything more than a liver cyst and it took weeks for it to sink in. A person with advancing dementia is not going to retain most of that information (if at all), more important is their relationship with those around them and the support they can give.

The best thing you can do @Metaphilly is ensure there is a plan in place for pain control / ongoing palliation and just be with your mum as much as you can be.

 

[Lemondrizzle]

Cannot agree more with the other posters here.

 

[nitram]

You could ask the GP if there should be any diet restrictions.

 

[northumbrian_k]

I agree that telling her would serve no practicable or good purpose. She might well forget completely (so why tell her?), grasp that there is something seriously wrong but not remember what, potentially get totally confused about what is wrong and think that it is one of any number of other conditions , or remember enough to keep asking what is wrong, what that means and so on. All of this could be incredibly distressing for her and everyone else too.

 

[Frank24]

Really wouldn’t tell her. Too heartbreaking and it’s unnecessary. At this point sadly it is you and the family that carry the burden of this knowledge.

 

[canary]

I would be prepared to answer honestly IF your mother asks very directly. You mention episodes of clarity. My husband has alzheimers and cancer and I listen in awe as he absorbs information and then forgets. You are best placed to make your own decision in your own way. Good thoughts to you as you work your way through.

I can understand why you might want to answer honestly, but I think I would not keep on answering honestly. If he kept on asking directly and getting distressed at the honest answer I would tell "love lies" to prevent him from further distress.

 

[Metaphilly]

Thanks for responses. It was a GP that had recently lost her mother to cancer that also had Alzheimer who said we should tell mum. Importantly here is that mum isn’t just confused and isn’t lost to Alzheimer. She has the same rights as anyone else even if her mental capacity is diminishing. We can all be guilty of catastrophizing at very emotionally difficult times like this. Keeping mum at the centre of it has also giving me strength to do what is right for her, not what I think is right for her.



As much as a I appreciate the other comments, I was just wondering is there anyone out there that has advice on how to approach the subject of cancer to someone with Alzheimer? We’re obviously not just going to say it as proposed by some of these threads. I believe the conversation can be staged, or come at it from different angles, indeed try to understand when mum is thinking more clearly what she already understands, etc.

 

[Louise7]

Hello @Metaphilly and welcome, although sorry to hear about your mother's diagnosis. This is an emotive subject and such a decision will depend entirely on the person involved. It's not clear from your first post whether the doctors who made the cancer diagnosis informed your mother themselves of this at the time? If not, was there a reason they didn't inform her but chose to inform the family instead? If your mother has already been informed of the diagnosis by a doctor then I'd personally probably not go over the same things again unless asked but perhaps the GP who has said that you should inform your mother might have suggestions about how best to approach this?

You might find this article interesting as, although it looks at informing someone with dementia about a diagnosis from a doctors' viewpoint, the conclusions about treating everyone as an individual and respecting their choices - such as asking do they know what is wrong, do they want to know the details, and if so would they prefer to be told by a doctor or family members etc? - might be helpful:

On telling the truth to patients with dementia

Objectives To discover what dementia sufferers think is wrong with them, what they have been told and by whom, and what they wish to know about their illness. Background Ethical guidelines regarding telling truth appear to be equivocal. Declarations of ...

www.ncbi.nlm.nih.gov

 

[Dunroamin]

Keeping mum at the centre of it has also giving me strength to do what is right for her, not what I think is right for her.

...but from an ethical perspective there are positive and negative rights. I feel this case hinges on a negative right ( and from the person with dementia's perspective) means the right not to be treated in a way that may cause harm or distress.

Diminishing cognition and understanding is a usually at the core of this cruel disease. To understand and internalise the concept of a terminal diagnosis such as Ca. pancreas is difficult for those with full cognition and mental capacity never mind someone with decreasing mental agility. Whilst it is possible that understanding in this case may on occasion appear to occur, this often causes confusion at other times ,along with distress.

Rights are bound together with respect for the person and I personally feel in this case an approach of tender loving care, support, accessing pain relief and hospice services would be far more beneficial to your loved one than the confusion that may occur following disclosure.

There are many on these forums whose wise words and opinions come from years of experience. My own words also come from life experience and unfortunately from the unenviable position of a diagnosis of Alzheimer's

 

[Violet Jane]

Perhaps you could ask the GP whose mother had Cancer and Alzheimer's how she approached the subject with her mother.

I understand what you are saying about the rights of people with dementia but sometimes it is kinder not to burden someone with distressing information that they struggle to / can't process.

It's a not dissimilar situation with a dementia diagnosis. I support an elderly friend and had to break the news of her dementia diagnosis to her. I have never mentioned it since and, fortunately, she has never brought it up. Her care package, which has progressed to live-in care, is needed not only because of her dementia but also because she has had many falls.

Rightly or wrongly, it's not uncommon for families to keep diagnoses and prognoses from their loved ones *without* dementia.

 

[canary]

Thatis a very interesting article @Louise7 , although I am surprised that anosognosia is not not even mentioned, let alone discussed. This very common symptom (the inability to understand that you have something wrong with you) makes it actually very difficult to discuss problems with a person with dementia who has it.

My mum was told quite clearly at the memory clinic that she had Alzheimers, but forgot this and although she would admit to "memory problems", suggesting to her that she had Alzheimers would send her into a rage. I very quickly learned not to suggest that she had anything wrong with her and to just sympathise with her about her "poor memory"

My OH also has anosognosia. He can ace the MMSE and appears very lucid. He will admit to memory problems, being "wobbly on his feet" and having hearing problems, but bizarrely does not think that this has changed anything for him and that he is still capable of doing everything, when in reality he is capable of almost nothing, has carers come in to help him wash and dress and spends most of his time sat on the sofa. Fairly recently his neurologist sent a letter to his GP outlining all his limitations in a very candid and extremely honest fashion. OH was, of course, sent a copy of this letter and read it. He was outraged and accused the neurologist of lying about him, making up stories and suggesting that he was "lazy", whereas to me it was all too true. I have now started being "economical with the truth" over his health issues and only telling him the things that will not upset him.

It is this misperception of reality, combined with memory loss, that causes most of the problems. Yes, it would be far, far better to be able to explain to our people with dementia what is wrong with them and to be able to plan with them what to do, but in most cases - particularly as the dementia progresses - it is simply not possible without causing a great deal of distress.

 

[SAP]

Sometimes “family” want a loved one to be kept informed of life events because they don’t really understand the impact of the dementia and how that news will affect the PWD. Emotional memory lasts longer than other forms of memory and this news could upset your mum for a while but she may not know why or remember why. At this point I would not tell her and keep things a pleasant and as light hearted as possible to make her time less stressful for all concerned.