How to get my parents to take my Mother's cancer diagnosis seriously?

Question

I'm a 35y/o male in Canada. My parents are in their mid-late 60s and live in the UK. I have two older brothers also in the UK.

My mother has been diagnosed with cancer, though the full diagnosis is not yet complete. She left it quite late to see a doctor - she was originally sick back in March but held off I think until August - my Mother has an intense fear of any kind of medical procedure.

At first, they didn't tell us about it. We believe it was only because my mother bumped into my brother's partner at hospital that they ended up telling us.

She had some tests initially and an MRI scan but the exact nature of the cancer is inconclusive. She was due to have some more scans (I think - the info I'm getting is patchy) and a biopsy but she now has a fluid build-up in her abdomen (ascites) which would make imaging difficult. It's also making her exhausted - she can't eat normal food, and she has some prescription nutrition shakes but she finds them difficult to drink as they are thick and unappetising - she is managing to take some but I'm not sure if it's as much as she needs.

Another affect is that the fluid build-up makes her uncomfortable and makes it difficult for her to get good sleep, so between the sleep issue and the lack of nutrition she is feeling very weak. She says that this makes her unable to go to a biopsy appointment. I and my brothers have tried to tell her and my father that she really needs to be moving forward with things, to start treatment, but she claims that she doesn't feel any worse than she did a couple of weeks ago. We've asked about treatments for the fluid build-up, but she says that they could drain it but it's an exhausting process and she can't cope with it. I've done some very basic research and found that this kind of fluid retention is normally treated with diuretics, which my brother and now myself have mentioned, but she dismisses it. She says that my Dad is "googling this stuff for 12 hours a day every day and is now an expert".

When I gently tried to press her and tell her that "time is of the essence" she first said "I don't feel any worse than I did a couple of weeks ago", I said "That's not the point though, is it?" and asked what the next steps were, she said "Ah well, I'm going to get the fluid drained soon, probably next week". I feel that although she has said this she is not taking it seriously. We have been told that she was going to be going to appointments previously, and then heard that she has cancelled them because she is "too tired". I don't doubt that she is tired, but she also refuses to take any sleeping pills, seems to refuse to talk about other solutions to the fluid build-up, and doesn't seem to be going to any appointments.

Overall, I worry that she and my Dad are not taking this anywhere near seriously enough - or that they understand the seriousness of it but that my mother is unwilling or unable to face her fear of medicine, even though it will kill her. The only other theory I have is that they have actively decided that she won't fight the cancer but they won't tell us.

I worry more generally about their information evaluation skills - they are both intelligent people, but a couple of years ago when myself and my wife were round for dinner, my mother said to us "You don't think the moon landings really happened, did you?" - to be very clear, she does not think they really happened, even though she was alive to see it when they did. That kind of thing makes me doubt whether they can accurately evaluate (or maybe whether they trust?) evidence-based information. Furthermore I think that my father may really regard himself as some kind of expert now and feel comfortable directing her care even though he is definitely not an expert - he has no medical background and again, I worry that his evaluation skills may be compromised.

I know that they have a charity, Macmillan Cancer Support involved and helping them out to some extent, but I believe they won't really interfere and push my parents into action - I think they really only operate when asked for help with specific matters rather than actually directing a patient's care.

My brothers have tried talking to her and to my father but they don't seem to have gotten anywhere.

What can I do? I worry that every day of delay makes my mother's prognosis worse. If she's decided she doesn't want to fight it, as an informed choice, then that's fine, but it doesn't feel like that's the case and she certainly hasn't said as much. My brother has flat-out asked my Dad if that's what's going on but he swears that this is not the case.

Answer 1

There's probably nothing you can do from so far away. I'm sorry. I know that is such a terrible thing to hear, but as long as your mother or father maintains autonomy over her medical treatment your only option really is to try and convince them of better options, like you asked about.

Unfortunately, convincing an irrational person to listen to rational logic is a historically unsolved problem. It is sometimes possible to manipulate them from within their own worldview bubble, but given the described condition of your mother it sounds like she'll be too tired to even entertain the possibility of changing her behavior.

However, with that said, she has at the very least claimed in conversation to have a willingness to adhere to a treatment plan. If we take her at her word, treatment has fallen through due to a lack of energy/commitment. Therefore, if she had the presence of a physical caretaker who was willing to take responsibility for ensuring that she went to all of her necessary appointments, and ensured that she took whatever medication or nutrition that she required, I believe it would be possible to leverage her ambivalence into action.

It would be a lot of work, since it requires more-or-less constant babysitting, but you could try talking to your brothers about taking that responsibility on, or you could try to fly to the UK and handle it yourself. Either way it's a very expensive option, since it is essentially another full-time job for someone.

Before I follow through on genuinely suggesting that, though, you need to talk to your mother directly, heart-to-heart, about whether she wants to fight this. Be absolutely clear with her that it will not be easy for her, and you will understand her choice either way, but you want to know what she really wants. You need to make it clear that you aren't trying to control her, you're just trying to understand her.

If she does actually just want to quietly live out the rest of her time without fighting, you'll need to let her. When it comes to deciding whether or not she wants to fight her cancer, she is adequately informed whether she 'believes' in science or not. It's a behavioral choice. So if she decides she doesn't want your help, just love her like you always have for the rest of her time.

On the other hand, if she chooses to fight instead, fight with her. Sometimes it's hard to fight. So, so hard. So she'll need you and your brothers to force her back to her feet and keep fighting. But if she made the choice to fight, that's what she wanted. And hopefully, with treatment, she'll beat it.

As a touching sort of testimony to this approach, bta left an anecdotal comment that seems quite positive. :)

"It made a world of difference once my mother starting going with my grandmother to her oncologist appointments. Aside from getting key information first-hand, an outsider often has the clarity to ask questions that the patient doesn't. It was a time commitment, but her quality of life definitely improved. I highly recommend that OP talks to their brothers about one of them taking point on this if possible. Even if Covid prevents their physical presence, they can likely attend appointments virtually" -bta

Answer 2

To clarify the analytical evaluation presented in this answer, I will introduce a summary of the main points, followed by my answer, to show that you can help by respecting your parents' intelligence; you present no indication of age-related mental decline.

1. You appear to believe, based on your mother's denial of the moon-landing in 1969, that your parents do not have the mental skills to evaluate information. However, you do not indicate that your parents have been diagnosed with Alzheimer's or dementia, or that they present symptoms of such. You list your father's lack of medical background as a reason not to trust his ability to understand what he reads on Google. But, as evidenced in the telling of your story, you do not have any medical background yourself. This raises the question as to why you doubt his father's understanding of the situation. It is your father who lives with your mother; you live far away in Canada and admit to having only patchy information.

2. You believes that Dad is not taking Mom's illness seriously, yet according to the story Dad is obsessed with understanding it, spending twelve hours a day Googling it. If he were not taking it seriously, he would not be doing this. That is human nature and we are all familiar with it.

3. As an adult son living in a faraway country with only patchy information, you ask, "What can I do?" You clearly do not trust your parents' ability to think clearly, but you provide no evidence that they are not thinking clearly. A solid piece of evidence regarding your own mentality and method of handling life is the way you handled the incident of the moon-landing in this present conversation.

OP and Moon-Landing Incident As evidenced in my answer, after reading my answer you changed your account without informing me. Consequently, my answer appeared to subsequent readers like a misinterpretation of your account (see the comments and other answers), by all appearances proving your claims that people of your parents' age lacked mental skills to correctly evaluate information.

To me, this speaks of a lack of respect for the intelligence of others, especially people your parents' age. You fail to consider that many people are mentally competent into old age, meaning into their mid-nineties and beyond if they live that long. Mid-sixties is not old age.

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MY ANSWER

My dear friend, one thing is obvious and that is that you don't trust your parents to make the right decision. Another thing that stands out bright and clear like the noonday sun is your reluctance to let your mother go if she wants to. But before we take this any further, let me tell a bit about myself. At the university I took the undergraduate program for clinical social work and in grad school I took a number of additional courses in family counselling. In addition, I am the age of your parents and have laid to rest both my parents and all four of my grandparents, many aunts and uncles, and some cousins and friends of my own generation. What follows is based on my professional training and personal experience.

Something puzzles me. I'm not sure why you bring up the moon landing of 1969 and use it to question your parents' ability to evaluate information.

You say:

I worry more generally about their information evaluation skills - they are both intelligent people, but a couple of years ago when myself and my wife were round for dinner, my mother said to us "You don't think the moon landings really happened, did you?" - to be very clear, she does not think they really happened, even though she was alive to see it when they did. That kind of thing makes me doubt whether they can accurately evaluate (or maybe whether they trust?) evidence-based information.

The important thing is that your parents understand the gravity of your mother's illness and I have no reason to doubt that, given what you report in your story.

My answer as follows is built on the premise of professional ethics, that is, medical personnel is responsible to respect the wishes expressed by the patient and caregivers. In this case, according to your story, your father appears to be the caregiver. Because of your repeated concerns regarding the mental competence of your parents, I will address these questions and concerns. You also express emotional frustration that your parents do not comply with your and your brothers' insights and urging to move forward quickly with treatment. All this appears to be based on the belief that Mom has not decided to let nature take its course. All I have is the story as you tell it, plus my own experience and expertise in the field.

You say:

If she's decided she doesn't want to fight it, as an informed choice, then that's fine, but it doesn't feel like that's the case and she certainly hasn't said as much.

Yes, I think she has said so very clearly but as her children you are unable to hear it. It is normal for you and your brothers to want your mother to be well and alive many more years. Mid-sixties is not old these days. I myself plan to live for twenty or thirty more years at least, but I'm healthy and feel good. On the other hand, your mother is feeling so tired, not eating or sleeping well. She knows the only way back to any semblance of good health is through very invasive and prolonged medical procedures.

You say:

my Mother has an intense fear of any kind of medical procedure

We need to respect this. Now is not the time for her to battle her phobias; if she was going to overcome them, she would have done so long ago. As an older mother, she is very familiar with the cycle of life and death, having brought children into the world and most likely buried both her parents and possibly also her in-laws. She is obviously more frightened of the necessary medical procedures than the natural procedures of terminal illness.

I see a clash of values between adult children and their parents:

I and my brothers have tried to tell her and my father that she really needs to be moving forward with things, to start treatment,

This is your very serious reluctance to let her go shining through. It's normal. You're only 35 and expected to have your parents many more years.

but she claims that she doesn't feel any worse than she did a couple of weeks ago.

That statement is a clear indication to me that she is aware that she is not well and that she is content with this knowledge. However, she also knows very well that her sons disagree strongly with her wishes. Saying she doesn't feel any worse is her way of trying to put you off, getting you to back off and let her be. Why doesn't she just come right out and say that she knows she's dying and wants her children to let her be? Is it because she knows the severe resistance her sons would put up?

she says that they could drain it but it's an exhausting process and she can't cope with it.

She can't be clearer than this that she doesn't want to do it.

I've done some very basic research and found that this kind of fluid retention is normally treated with diuretics, which my brother and now myself have mentioned

............

My brothers have tried talking to her and to my father but they don't seem to have gotten anywhere.

...I worry that every day of delay makes my mother's prognosis worse.

This fear of losing your mother is normal. Her prognosis is getting worse and she knows it. She is fine with it, at least resigned to it. It must be difficult to know her children are adamant to keep her alive, with or without her consent. I have read of people who knew they were dying but they could not speak to their families about it; when finally they could speak openly, they felt so relieved and at peace.

A big issue for you is your father's ability to make informed decisions and evaluate your mother's care based on his age and on his background. However, you say:

I've done some very basic research

I take it you don't work in the medical field, that you yourself have no medical training of any kind beyond what any of us lay people do. Is that correct?

She says that my Dad is "googling this stuff for 12 hours a day every day and is now an expert".

.............

I think that my father may really regard himself as some kind of expert now and feel comfortable directing her care even though he is definitely not an expert - he has no medical background and again, I worry that his evaluation skills may be compromised.

Your story does not give me any reason to believe your father's evaluation skills have been compromised or that he is not taking your mother's condition very seriously. I hope that is helpful. With regards to medical background, according to your story the two of you--you and your father--are equal. If anything, he has the edge over you because he has been studying this so intensely. This man does not want his wife to die.

I hope that gives you some peace of mind. Your father is "all there" and he loves his wife like his own life or better. It's the only reason he spends all his waking hours (that he's not caring for her) studying this, obsessing over it. He respects her wishes but at the same time cannot help but read and reread all he can find.

You ask: What can I do?

I'm sorry, but you will have to somehow find the strength to accept the inevitable. Being so far away must eat at your insides. I'm in Canada, too, and I know we have some good counselling services for people struggling with issues like this. It is normal to feel the feelings you are feeling. It is also decent to seek out help at a time like this.

You mentioned Macmillan Cancer Support. I looked them up and you're right; they don't direct anyone's care. They support cancer patients and their families financially and emotionally. It would be inappropriate for them to direct a person's care; the care should be left to the doctor of each patient and if a patient has chosen not to accept treatment, in consultation with their doctor, then the doctor has to respect that decision. Those are the laws and ethics of medical practise as I understand them. Based on your story, I feel confident that your mother has been in deep and serious consultation with her various specialist doctors. I also am of the impression that your father was right there at her side holding her hand, absorbing each word, fearing for himself if he respected her wishes.

What you and your brothers can do is likewise respect her wishes. She has made it clear that she wishes to rest and let nature take its course. Very powerful pain relievers are an option to make her reasonably comfortable so long as she lives. These will most likely be applied as needed. Your father needs the emotional support of his sons at this time. So does your mother.

Answer 3

When your mother says she is tired, she doesn't mean how most people use the word after a day's work. She means something like showering and getting dressed will wipe her out for the rest of the day. She is probably making a lot more effort than you realize in making her appointments. Also, you should realize that doctors don't always move as fast as you would expect, and they factor patient exhaustion into the equation. This might be a normal pace of treatment, not the result of your mother's stonewalling.

I know you mean well, but being badgered about medical decisions only adds to that exhaustion. If you want to help her, think of ways to help her rest and recuperate. Arrange for meals or grocery delivery or house cleaning. Listen when she tells you things she is worried about not being able to do, even if it sounds ridiculous. Now is the time to make every effort to take things off her plate, not add "comfort my son" to her plate. All the comfort should be directed inward toward her and your father. If you need comfort, get it from your spouse or your brothers.

In other words, if taking care of herself is the only thing on her agenda, she's a lot more likely to have the energy to do it. And if she is not long for this earth, you don't want to spend her remaining time arguing about it.

Answer 4

Several things here:

I am sincerely sorry for you and your mother. It exists supports groups you may want to make contact with them.

A patient that is well informed and has all his/her cognitive abilities is the only one to judge if he/she wants to follow a treatment and how. This is actually the Law.

Secondly, you appear to believe that her disease may be curable if she takes immediate action. Maybe it is not. Understandably, you are in stress, but you should take a step back and try to gather information on her specific cancer. I may not recommend that depending on your stress level but you may want to go on PubMed and read several scientific reviews on her specific cancers.

(Pubmed is a browser that allows looking for relevant scientific publication. This is an opposable source of knowledge.)

• it is cancer that is cured most of the time and or that treatment expands survival and the life quality by a great margin. You now have proof that if she follows a treatment, her health will likely improve and she will live longer. Again is up to her to choose, but it is a kind of appealing argument.
• It is cancer that may be cured if treated. Cancer that is rarely cured. The treatment adds a relative "short" survival time. Then it is up to her to decide if she wants to do it. Cancer therapies are often aggressive, dangerous and painful.

I understand that you would prefer her to take all her chance. But in this situation, whatever her choice is, you should be supportive. It is a far from an easy situation from her too and maybe she in denials, maybe she don't feel the strength to go further. You, you should always be supportive of her decision, letting her know that you will help her, love her whatever she decides. Sure, you can point out. In your opinion, she may do that. But ultimately is her choice and that you, despite understanding it, support it.

The moon landing incident may be understandably concerning for you. You may want to be sure your parents are not under the influence of pseudo-medical healer and have access to all pieces of information required to make an informed choice.

EDIT to answers your comment.: I understand that in your point of view it may be better. That her decision is painful for you. But you shouldn't try to compare to other people story because every cancers are different.

There are several articles from a reliable source that discuss the subject of people refusing treatment like american cancer society. It may help you to understand her view better and it is certainly better phrased than this answer.