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

[Lawson58]

...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

Thank you so much for your perspective, so clearly stated and with such insight into just not what matters but how it matters.

My husband doesn’t have cancer but he has severe heart failure. He knows he is unwell but he doesn’t want to know how really sick he is. His GP and I both know that he could die suddenly at any time. I have gently broached the subject side on to see if he will open up about it and he just avoids it at any cost. He simply doesn’t want to know so now I would not dream of telling him.

If he asks me, I would answer only the question asked and see where it takes me. He is getting quite foggy and struggles to understand what is being said.

If the doctors decided not to stage mum’s cancer, then I would assume that they see no value in subjecting her to that stressful procedures (which can be very debilitating) then surely they have decided to let your mum have whatever time is left without the impact of chemotherapy.

Apart from having rights, your mum deserves kindness and comfort and love and that should be the focus at the moment. I don’t understand when your mum is quite confused, agitated and delusional that you would want to aggravate that more. She may well be very anxious and telling her that she has terminal cancer isn’t going to help that in any way.

I understand that you believe that she has an undeniable right to know. I wonder if she also has a right to pass away peacefully without pain surrounded by loved ones and without fear.

 

[Sarasa]

Hi @Metaphilly, I wonder if any of the threads here might help you with your decision and your on-going care of your mother.

Caring for a person with dementia and cancer

A place for people who are caring for someone who has both dementia and cancer. This space will provide a support network and a place to seek practical and emotional support, tailored information and Q&A events.

forum.alzheimers.org.uk

 

[SherwoodSue]

I suspect that when you were younger you would never have dreamed of ’going behind your mother’s back.‘ I imagine that being honest and truthful were values much prised in your family. Your love for your mother hasn’t altered and so it’s temping to think that keeping everything the same is the way to go.

I approached mums dementia in the same way. I felt I was her advocate and I should carry out her wishes. Promoting independence and autonomy was the way to go. I do shopping for my mum and once suggested we add birthday cards to this list for younger brother’s family ( Yes, we don’t see much of him at all)
No, said mum. None for him! So I didn’t shop. I did try several times to elicit a change of view. Mum wasn’t budging.

The OT who led on mums formal diagnosis suggested that I would need to take more onto myself and keep faith with the woman mum used to be (Very fair to all her children) even if this meant taking autonomy away from mum.
My love hadn’t changed but the way I should relate to mum would need to.
it took a while to get my head around this.

Mum relies on me to keep her story straight.
I write down medical appointments and a rough outline on what was said I will now be economical with the truth. Not lies just not volunteering upsetting info.
mum reads these notes over and over. That how we do it.
I dont think anyone here is saying PWD and to be treated as lesser beings in terms of human rights, but that rights and protection from distress have to be balanced out.