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Please help us in making the right decision, it really aches the heart ...


My uncle is about 60 and he has liver cancer and cirrohsis both late stages, and he is now been handed to hospice ..... he lives in the states, and his mom (my grandma) usually visits him in the states (she lives abroad) once a year and spends a couple of months with him ...


Given that he is her youngest, and I could say favorite, she sees him as the youngest and healthiest of her kids (he has elder sisters but all suffering from different illnesses but living with them) ... he is her pride, her backbone, her pet ... you name it ...


She hasn't seen him now for more than 2 years (the covid situation mainly was the factor) ... but since last year he was diagnosed with liver cancer, and he never told her because she would be devastated let alone pressure him in so many ways .... so to take the pressure away from both of them (that is what he believes) he never told her, and he told his sisters and nieces and nephews not to as well ..... during the course of a year, he kept deteriorating, and now he is in his last stages, doctors say he needs to prepare to die and nothing can be done, and they handed him to hospice, who are giving him the soothing care which is meant to let a person die in peace ...


The crazy thing is his mom does not even know he is sick, she thinks he is her healthy young son full of life, the one she always knew, ... she has been nagging for a year now to see him, and they keep giving her excuses so they don't send her to the states, they tell her its covid and its bad and she can't travel ... and she keeps longing to her son and saying she misses him ...


Tell me please, is it right not to tell her until now? .. her daughters say they are scared she will be devastated (which she will of course) .. they are scared something will happen to her (since her health has deteriorated lately, but mainly pscyhologically, she is having so much anxiety, panic attacks and depression) ...


Do you think it is fair to keep her in the dark? Because we believe she cannot handle it and that she will make a difficult situation worse?


Is it better she knows the news if he passes away? Or better to know it now and see him at his worst and be with him?


Please help us make the right decision for our family


Thank you

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This is your uncle's decision to make. If he instructs that the information is not to be shared with his mother, then nobody has the right to share it with her.

Of course, that doesn't mean that nobody *will* - cats tend to make their own way out of bags - but if you want the purist ethical line, there it is. Silence, everybody.

You or others (perhaps a pastor, or someone from the hospice team if he won't listen to family) can dispute this point with him. It will be a devastating blow to his mother to learn that her son took months to die and she was never given the opportunity to take her leave of him or adjust to the situation. But you can't know this: it may be that she will be glad she wasn't told. She may agree, ultimately, that she has been spared months of futile desperation or even false hope.

Another suggestion: ask him to write a letter to his mother that she can be given after his death. He doesn't have to explain himself or his decisions, or write about anything he doesn't want to. But he surely does owe it to his adoring mother to leave some record of farewell to her. All members of armed forces going into active areas are required to do this in case of mishap, and it is well established that last words and thoughts from the child a family has lost is of genuine comfort to the bereaved.
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Won't she be equally devastated when he finally "suddenly" passes? Or will this be kept a secret as well? And won't she be devastated when she finds out there was a family "conspiracy" to keep her ignorant? I would make these points to your uncle as I think she should be told, but it is HIS decision. At the very least if he continues to keep it from her, see if he'd be willing to do a video of himself speaking to her and giving a diplomatic explanation of why he didn't want her to suffer with the knowledge of his illness, and giving a loving farewell to her. If he can't/won't do this, then it is what it is.
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As a mother of 2 grown children, I have to say that regardless of what I had going on in my own life, that I would most certainly want to know if one of my children were sick and dying, as I would want to see them before they left this world, as I was with them when they came into this world. And I personally would be quite pissed off at those that chose to keep that information from me, regardless of their reasons why. But that's just me.
And the fact that your uncles mother lives abroad, she should be given the opportunity to come see him one last time, to say to him what she feel she needs to. It may be too late from what you're describing for her to make it here in time, but she should be given the choice herself. Perhaps you can at least let her facetime with him, before he dies.
No one wants to have any regrets in their life, and I'm afraid if you keep his mom out of the loop, that you all will have to live with that regret of not being honest with her for the rest of your lives. Something to think about for sure.
Praying for Gods peace in this situation.
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It is his decision if she knows or not, since it is his life.

Respect his wishes no matter what he decides.
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Is the 86 year old mother competent? If she is competent, she should be told and allowed to prepare herself for his death, ideally by her son. You indicate he is saving himself from coping with his mother's dismay. Is she really so demanding a person he and others cannot cope?

My 63-year-old uncle died from complications of heart surgery unexpectedly 2 months after his father had died. My 81-year-old grandmother handled it quite well after the initial shock. By the time you have reached 86 years of age, you have coped with the loss of many people.
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Isthisrealyreal Sep 2021
Exactly, our elders are not as fragile as our young people. They have seen so very much.
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I think the time to ask this question sort of came and went a year ago when your uncle got the liver cancer diagnosis.

I think uncle is making a big mistake, and I'm sorry to say this, but I think the rest of you are going to bear the brunt of grandma's (justifiable) anger once uncle has passed. She is likely going to feel that she was "robbed" of time with him - and in essence, she kinda was - and if he is her favorite as you say he is, don't be surprised if she takes out her anger on the rest of you for not telling her (even though, yes, that responsibility really rested on uncle himself).

I'm so sorry you are going through this. I'm afraid there are no easy answers here. I can only say that if I were your grandma, I'd want to know as soon as possible, even if the news were to "destroy" me, because that's going to happen either way. It's just not natural to outlive your children, and there's really nothing anyone can do to lessen that blow.
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Isthisrealyreal Sep 2021
Exactly my thought when I 1st read.
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Bottom line -- it's his decision. (It's the wrong decision in my opinion, but I don't get one.)

My concern is that Grandma is already suffering from anxiety and depression. Would someone be around to support her once she does receive this devastating news regardless of whether it's before or after his death?
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"since her health has deteriorated lately, but mainly pscyhologically, she is having so much anxiety, panic attacks and depression"

For the above reason, she should not be told. COVID is a good reason for her to still stay where she is. We are now battling a different strain.

I am with your Uncle. Since Mom stays with him for months, then he knows his Mom. No one ever has to tell her about the circumstances surrounding his passing. Just that he peacefully died from Liver cancer which was discovered late.
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The best way to answer such a question is to ask it of yourself: would you want to know if your son was terminally ill and on hospice, getting ready to die within 6 months?

For me, I would be L I V I D if that information was withheld from me 'for my own good' by 'well meaning' family members who thought I was 'too fragile' to handle the information. Considering I gave birth to that child and raised him, is it not my right as a mother to be with him as he takes his last breath, as I was with him when he took his first? I certainly would not let the threat of a virus prevent me from visiting my son, either, especially if he was on hospice care! But that's me, telling you how I would feel, as a mother who has a son, and how I would feel/what I would do if faced with the situation (God forbid).

Let common sense guide you to 'do the right thing' for your grandmother and your uncle's mother. My condolences over the situation you're all facing with your loved one.
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notgoodenough Sep 2021
I agree, I would be livid too.

I think if I was the person who was terminally ill, and I decided to not tell people, I wouldn't tell anyone. That way, once I had passed, people could be angry at me, and it wouldn't potentially drive a wedge between the people I love, because of some people knowing and having to keep that information from the people I didn't want to know. That's not a fair burden to place on people.

My FIL tried that with me - I happened to be the first one to visit him in the hospital after he was told he was terminal. His words to me, after he told me what the doctor told him - "don't tell anyone." I told him in no uncertain terms I would NOT keep this information from my husband, and that while I understood my FIL's desire to not "upset" anyone, that is was patently unfair to ask me to keep a secret - especially a secret of that magnitude concerning HIS dad - from my husband.
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Ironic this thread is here in light of comedian Norm McDonald passing today from cancer which he had been battling for 9 years, and if I'm correct he kept secret.
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This is a challenging situation. If she had dementia, I would say no do not tell her, but as she does not, it is important that she is told.

BUT, the proper supports have to be put in place before she is told. If she belongs to a Faith community, can you contact her Faith Leader and ask them to help prepare her for the news?

Is there a family member who can be with her when the news is shared? What about an old friend?

Can you contact her doctor and any other people on her medical team to ask for help?

She could have a physical and or mental breakdown when she gets the news, she may rage with anger at not having the opportunity to say good bye. You need to be prepared for any response and have supports in place.
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There is another way to do it, and that is to tell her that ‘it was sudden’ after he dies. Perhaps he had ‘an accident’, or perhaps ‘it was just a week after he knew’ - giving time to write that final letter.

Deaths can indeed be sudden. Our next-door-but-one neighbor, much liked, was killed coming home from work a month ago. It’s a bad shock, but for mother it would cut out the anger of ‘why did they keep me in the dark’.
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I spoke to my ex today; his stage 4 prostate cancer is no longer in remission and his oncologists are now concentrating on extending his life expectancy 5 more years at the outside. He had to tell this devestating news to his wife, our three kids and his brothers.

He is insistent that no one tell his 91 year old mom who will just obsess about the health of her firstborn. He hopes to outlive her.

If your grandmother is suffering from mental health issues like depression and anxiety, please get her seen by a qualified psychiatrist who can treat these conditions. And yes, encourage your uncle to write his mom a final letter.
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JoAnn29 Sep 2021
Mom lives in another Country.
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His mother will be devastated if he dies and she had no idea and no contact. Please tell her the truth. Let her know that he is going to die soon. Arrange telephone meetings between your uncle and his mom so they can spend time together. Help make arrangements for her to visit in person - if that is what they both desire.
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It's your uncle's decision, even though I believe it to be a wrong decision. If grandmother has her facilities, she has a right to know and prepare for his death. Try and see if uncle will change his mind and let your grandmother be told. How devastated will she be when one of the family has to tell her her son died of a disease he had for a couple of years? She has been given no opportunity to say good-bye to her son.
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hug!

the mother should absolutely be told. and she absolutely has a right to mentally prepare; and to speak to him, say all she wants to say.

he should not suddenly die, and she never had a chance to say all the love/things she wanted to say.

telling her, means admitting many excuses were given to her as to why she can’t fly.

but it’s much better she knows/not more time passing.

hug!
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Mom, grandma needs to be told and the sooner the better.
She is going to be devastated no matter when she is told but telling her as soon as possible will give her time to arrange a visit if that is possible but it will also help her begin the grief process.
I can imagine how angry, upset and blindsided she will feel if everyone in the family is aware of the illness and she is excluded from this information.
And there is always someone that can not keep a secret and will tell her.
Please find a time when she can be told. If possible by a family member that can do it in person.
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I would let her see him that's her son and not seeing him might make things worse for the family. I think the family has to be strong and help with anything that might happen when she see him. Does she still have her mind working? if so then tell her the truth she is owed that about her child.
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JoAnn29 Sep 2021
Woman lives in another country and is 86 with health issues.
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It is not for you or your siblings to tell her. Your brother who is sick has to be the one to do it if he wants her to know. It's his choice to tell her or have her come visit and see him. The rest of the family has to respect that. It's his choice and if he doesn't want her to know, don't tell her. As heart-breaking and tragic as your story is, it's not about your mother. It's about your brother and honoring what his wishes are.
If your brother passes away without your mom ever knowing about his illness, yourself and the family should tell her that none of you knew. I think at 86 it's okay for you and the rest of the family to lie to her. What good will come of her finding out all of you knew but didn't tell her? That will only cause fighting and hard feelings and strife in the family. That can be and should be avoided at your mom's time of life.
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Hopeforhelp22 Sep 2021
BurntCaregiver - wow, your response was so eloquent and thoughtful and compassionate and sensitive - and such valuable advise. I heartfully agree.
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What bothers me is the Uncles wishes are being overlooked. That to me is important. Mom is 86 years old with declining health. She suffers from anxiety and should not be traveling during a pandemic. You tell her now and the anxiety and panic attacks may get worse. Is that fair to her? She cannot do a thing where she is in another country. Its his decision to tell his Mom, no one elses.
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NancyInSc Sep 2021
I agree. It is the son's choice. I recently found out I am terminal. Have been settling my parents' estates. I spend a long 14 years as their caretaker. Instead of planning what I will do for the next 20-25 years, I have had to change my path to 2-3 years. I have chosen to not tell most of my relatives about my health, especially my sister. I do not want to deal will her and her drama. I may tell her when I go into hospice. My death, my choice.
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My brother, for reasons I don’t know, distanced himself from our parents for several years. After Dad's death he rarely visited Mom. She started to think he had died and we were hiding the fact from her. I would call him and leave messages but he seldom responded to me either.

Then he died in his sleep at age 62. The hardest thing I have ever had to do was tell Mom her favorite child was dead. She was 91 and I didn’t know how she would react. Mom surprised us all by being a rock and moving on. Maybe her decline into dementia was a blessing.

I don’t really have any advice here other than you, as a family, need to decide which will be the bigger shock: telling her he is dying and letting her be prepared and saying goodbye, or not telling her and dealing with the sudden shock when he does die and she finds out you have been hiding his illness from her.
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Candyapple Sep 2021
fantastic. great minds think alike. it will be a shock either way. the family is not thinking clearly. u never know it could help them both. who knows it could have possibly helped him live a little longer u know. ur right it could help her be stronger and live life for him. u just never know. if it were me i would say something facetime or what have u. i agree with ur response.
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She should have been told right at the beginning, you had no right to keep it from her , now it’s far worse and will probably destroy her , he told you all not to tell her , that was the wrong thing to do
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The trouble with this question is that the headline asks the wrong question. The right question is: is it right to disclose confidential medical information without the patient's consent?

The patient - i.e. the OP's uncle - has made it clear he does not want his mother to be told about his terminal illness and approaching end-of-life. The OP further explains that he has his reasons, which include not only that he does not want to think of his mother's reaction but also - and more importantly - that he doesn't want to have to deal with her grief while he is in the process of dying.

We may think he is wrong, and that it may be (it isn't necessarily) cruel to keep this information from her. But this isn't about her rights, it's about his rights, and he is the one who decides what happens with his information.

He can be encouraged to think again; and he can be encouraged and helped to make some kind of provision for when his mother does have to be told what has happened. But to disclose the information now, without his consent, would be totally unethical and would possibly, probably, make everything much worse and much more painful for both of them.
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JoAnn29 Sep 2021
Very good CM.
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Wow..this really is the ill persons news to tell. BUT In our family my brothers wife {65] got ill went in the hospital and my brother chose to not tell mom and I . He thought she would get better , go home and then he would tell us she had been sick..She DIED 6 days after being admitted! He endured her dying process alone. We were a close family and devastated.. we had no closure. They lived 800 miles away. As a family we then decided no more secrets. 86 is the number of years you have lived. It does not make you unable to handle grief or sadness. I think we do a disservice to assume a person can not handle bad news. This truth will come out in time. Sometimes there are things left to be said before a death.
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She absolutely should be able to see him.

The shock of his illness would be less emotionally painful than being deprived of the opportunity to see him through deceit.

Many of us have lost family members to accidents and other sudden deaths. She will be able to cope.

I understand why he didn’t want to hurt and disappoint her with news that he was struggling to accept.

If, however, she is afforded the chance to see him, (if he is consciously aware) he will be comforted by her presence.
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She is going to notice when he is no longer there to visit or communicate with. Unless she has severe dementia, please tell her. She has a right to know.
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Is she still in her right state of mind if she is tell her that he hasn't been feeling good and he won't be able to come and visit her then get a picture of him and set it close to her bed so she can still see him all the time. And when he does pass away tell her that he went to visit Jesus and he will see her when she comes to visit Jesus. That's what I tell my mom all the time and she smiles and tells me Thank you. I was told by the Dr you should never tell them straight out that someone died because it could get them very upset. You can talk to her Dr and ask them what they think you should do about it . I will keep you guys in my prayers.
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With all due respect, it’s your Uncle’s decision. His mind is intact, and the communication channel is open. After HE decides, perhaps you can ask him if he’d like you or someone else in the family to help deliver the sad message of the reality. But it’s up to him. Especially if he is still in touch with his own mother, via phone or FaceTime or Skype, etc. It’s his choice, imho. Prayers are up for your family, as this choice is not theirs, but his alone.
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if the mom is of sound mind. i would try convince the son to tell his mom.so she has a chance to say goodbye. if she has dementia/Alzheimers i would use white lies to distract and deflect when the topic of the son comes up.
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Since it was HIS wish not to tell her … leave it alone. When he passes , if she has dementia she may not even be aware. If he passes and she does not have dementia then you can tell her he passed. Why pile that anxiety on her when she can’t see him now due to Covid anyway? Let her enjoy remembering him healthy and strong 💜
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