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That is true. The docs seem to want to go on testing and testing. A friend's husband had terminal cancer and I was staying with her at the time and we were going to the hospital daily. They shipped him over to another hospital for some tests a couple of times when I was there which left him on a stretcher in a draughty hallway for some time and very uncomfortable. She was commenting on it, and I told her they did not have to agree to the testing. She talked with the doc and there was no more. He died a few weeks later, but at least his last days were as comfortable as possible.
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Unfortunately, you have to be the one to put on the brakes with the doctors. Some will keep testing and treating without any logic or compassion. I even know of a situation where a mammogram was ordered for a woman in the final stages of ALZ! Imagine how upsetting and confusing these tests and procedures are for someone so cognitively compromised!
Some doctors won't even take no for an answer. Our relative's doctor went to his hospital room after visiting hours and had him sign off on a procedure that the doctor was explicitly told by the patient's medical POA that he was not permitted to do. He was clearly impaired, yet the doctor forged on ahead. It was like the hospital was trying to squeeze the last penny out of Medicare before he was transferred to hospice.
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Thanks for the comments and advice. I moved my parents from their home 4 years ago.They lived with me for 3 years and are now in Assisted Living. I thought the last 3 years were really difficult but I had no idea what was in store.
The ALF is helpful - but I am there all of the time and with the dementia - it is a challenge every day. I don't know why the doctors continue to suggest all the tests since they also say they would be unable to treat her. I think the idea of simple answers are the best and I like the idea of saying that we want to see how you are getting along before we make any decisions. It is heartbreaking to watch my mom who was a smart, funny and a fun loving person become a person that doesn't remember how to undress herself and is becoming more frail every day. I am trying to prepare myself for what is ahead but can't imagine how to do so. I am just taking one day at a time.
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My 86-year-old mother was recently diagnosed last fall with melanoma on her scalp, her worst fear of her life. Doctor just excised it in office (someone younger would have half their scalp removed), pulled me aside, told me he knew it was melanoma but best not to tell her, it would serve no purpose, and it would take 10 years to kill her. As her NPH dementia had been progressing at a very fast rate since summer, he said it was absolutely pointless to tell her. She now would not even know what cancer is and truly just wants to pass on.
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Always tell the truth BUT only when you are questioned.For example if she tells you her XYZ is hurting and the pain is getting worse and she asks if you think she has cancer. Then you need to explain to her the truth and the fact that there is no treatment. I think this is a good wake up call for everyone to get their paper work done while they are still young.
So my bottom line is don't tell unless you have to as it will be a needless worry
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Burnedout - if your parents are suffering from dementia and they get things very confused, then no, don't tell them. It isn't fair to them because they cannot process the information rationally.

I wouldn't, either, subject a lady of your mother's age to an endoscopy unless there was a realistic chance of finding something readily treatable. I'm surprised her doctors didn't come to that conclusion sooner - did the tests serve any useful purpose, in the end?

If your parents ask, then give them exact, simple answers that you judge will make sense to them. Such as "we don't want you to go through the tests. We will have to wait and see how you get on. We can do a lot to make sure you're comfortable." And if they ask specifically if your mother has cancer, you can truthfully tell them that you don't know, and that the tests would be too dangerous for her.

Also, don't forget to look after yourself. Don't forget that when you're focusing so hard on what to tell your parents you still need time to yourself to think about the information you're being given, and what you can do to prepare yourself and your parents in case your mother becomes gravely ill. I'm sorry for all you're going through.
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I am going through the same situation with my mom. She is 87 with vascular dementia, she is going blind and now the doctor indicates that she has liver
failure. She weighs 90 pounds and is very frail. The previous specialist felt that she was not a good candidate for any treatment and told her to go and lead her life. When I talked to her doctor, he said that she did not mention the specialist and said she had no knowledge of any issues with her liver. When we went through this a couple of years ago, we did all kinds of test and each one made her more ill. Her life became a series of blood tests, endoscopic tests and recovering from all of the tests. Once treatment was not possible, we stopped with all of the tests. Their current doctor says that I will have to make the decisions -his opinion they are incapable of making these type of decisions.
I don't want to start all of the tests again when there is very little hope of treatment. I have been thinking this through for about 2 weeks. Do I tell my parents who both have dementia and get things very confused? Do I start with all of the testing and doctors' appointments and make her life miserable without treatment options? Do I keep quiet and let them lead their lives without the worry and the stress of the outcome of the disease? I would agree that my parents know a lot about pain and sorrow. I believe that whatever doesn't kill us makes us stronger - but there are actually some things that can shorten our lives and not make us stronger. The worry and stress on top of the illness can be two of the things that can shorten lives especially when the people are 87 and 90 and very ill and confused.
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My mom was 84 and she was told she needed a mastectomy. She had the surgery and my sister and I were with her the entire time. A few years ago she needed her ovaries removed and was advised at that time that the surgery was needed.
She is now 92, living alone and doing well. I thank god every day for this and she has said that it was better that she was involved in all decisions.
As I am her main caretaker I see her 4 times a week and every time we are together we celebrate.
I count my blessings every day and hope that if I am diagnosed that someone will tell me.
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Hm, I'm not so sure about that. If you were facing death through the end stages of congestive heart failure you might be quite relieved to hear that cancer could intervene. Just as MND sufferers welcome flu-bearing visitors.

Cancer comes with pain relief. CHF ends in slow drowning. Which would bother her more, do you think?

I think we forget that older people who remain in possession of their faculties are also likely to be acutely aware of their mortality. Denying the reality of it means that they cannot be open with you about their thoughts, fears and wishes.

Grace it was brave of you to share the news about your own cancer with your mother, but given that she was going to know that something was wrong you did the right thing in telling her the truth - better than her imagining and being too frightened to ask. It must have been very hard on her: can any of us think of anything worse than our child being in danger? But still the right thing to do.

We cannot hope to protect our elders from the pain and sorrow and trouble of this world: they know more about these things than we do, having experienced more. They will, God willing, be free of them in the next world. Meanwhile, please don't treat them as if they are children or idiots.
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No...I would not tell her. As others have said, other things, will probably take her before the cancer. In addition, the "C word" is especially scarey to people of her age. IMO telling her could quite possibly dash her hope and spirit...thinking she's doomed so why bother to eat, walk, talk, participate in life.

To borrow from the doctor's creed...Do No Harm. It won't harm her to keep silent about the cancer...but IMO it could harm her if you tell her.
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Not knowing her mental issues or her age I agree with pstegman. No body knows you like your family. I was on the other side do I tell my mom I have cancer. After finding out I was going to loose my hair I thought It's better to prepare her and fortunately I was so blessed I was able to continue to care for her. It was hard on her just cause she couldn't take care of her baby girl. That being said whether you tell her or you don't know your that you made the right decision!
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I am not a fan of telling people things that will distress them and not be helpful.

That said, in this country the convention is to respect people's autonomy. Her doctors should tell her unless her care is already mainly being managed by someone else.

If you think the information would really distress her without benefit, a few things you can do:
- have doctor ask her if she prefers for important information to be shared w family, and if ok for family to tell her what's most important. Many older people are ok w this, esp if they are from certain cultural backgrounds.
- Try to ask her: if you had a really serious diagnosis but there wasn't any surgery or chemo that would cure it, would you want to know? And then tell her doctor what she said.
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I have to say I think it depends on the person. If your Mom is alert and realizes you are not telling her something she will have difficulty trusting you. I had some experience with this years ago. My MIL had cancer she knew that however when my FIL was told she only had 6 wks to live he refused to tell her!!! I was SO hard, we had always been honest with each other and she needed to know the truth. My husband was her oldest son. It was just so difficult for ALL of us!!! Your Mom may know unconsciously if she is at all intuitive. take care, and God Bless!!!
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nope, I wouldn't. it will just give her more to worry about and it's not going to change anything.
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I think, as the different answers indicate, there are many factors to consider. As a family member, I would want to know her prognosis as regards each of the health issues she has, including the cancer. My grandmother had breast cancer, very slow growing, and wanted nothing done about it. She died from heart disease long before the cancer became a problem. The family knows the person best - whether she would be made more anxious, for example, knowing about it, or whether she would want to, or would rather not know about it. It is not an easy or clear cut situation. I would like to hear from the original poster what they have decided and why. A few years ago, if I was in this position, I would have said that my mother should be told - that she would want to be. Now, although she does not have dementia, she has increasing paranoia and some bizarre delusions and I think those would be made worse by knowing about a diagnosis like cancer, and her distress would increase, so I would be less likely to tell her, especially if no treatment was possible. If treatment were possible, that might have to be explained. However, she, at 101, in fact, is ready to die,. She has stated more than once that she wished she had died already. I suspect she would refuse treatment even if it were possible. Difficult decisions.
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I probably would not tell her and, frankly, I would be angry that they did the biopsy. I hope there was a very good reason for it other than just "finding out."
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If you do not inform the patient that they have cancer & someone lets her know, what will you say to the patient at that time?
Not that this is a reason to inform but it seems that somehow she may find out along the road by someone who thinks she has a right to know or because the teller does not realize she is not already informed. I don't know the patient or the mental status & how the info will be processed by them but I would not want to think she will find out & then lose trust in you for not letting her know. If I were that sick & you were my lifeline & that incident occured it would shake my lifeline which is all I had to hang onto.

Again if she has said I don't want to know anything else that is wrong with me then that is different or if dementia means she would sink into depression again that is different but I would want to know if it were me & I think there must be ways to tell them that lessen the impact.
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Caregiving was difficult because at the time I lived 700 miles away from my parents. My brother and sister assisted Mom when I was not there. It was difficult for Mom when she had to move so far from all she knew to move in with me 4 years after my father's death. I know this blog is a beautiful away for caregivers to discuss opinions, but I want to take this moment to applaud you for all you are doing or for what you did for your loved one. They may not have known you in their mind but they knew you in their heart. My father did not know in his mind for the last 5 years of his life who my Mom or anyone was but I know in his heart he know her, that was all she needed.
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I agree with Gigi11 and Countrymouse Give a Hug.. Its hard to think of and discuss every possible situation. I can only say what I will discuss with my 91 years old Mom tomorrow. Mom's body is failing her because she can not walk for more the 20 feet without sitting down. Mom has lived with me for the last 4 years. Her dementia has progressed to the point that Mom is not able to explain why she did or did not do something, but most times we can discuss news headlines. Tomorrow I will be posing the question as if "I have a friend who is in this situation" to try to get her opinion on the subject. I would feel more comfortable which way to go. We have discussed every situation we can think of and ALL family members are well aware of her Living Will wishes. I was made Power of Attorney for all end of life decisions. I do discuss choices with my siblings but in the end it is me who signs the forms. When my father started having the 1st symptom's of Alzheimer's my parents went straight to an attorney and had Wills and Power of Attorney's for both which spelled out their end of life choices so our family would not be torn apart like they had experienced with their parents. It has been a heavy responsibility and even with those documents in place, feelings were hurt when I had to make some very difficult decisions. Mom could no longer take care of my father. Mom, with my help, had to put my father in a nursing home. He passed away 6 months later due to someone did not set his emergency break on the wheelchair and when he stood up the chair moved backwards and when he sat down he landed on the floor. He had surgery, got pneumonia and passed away within 5 days. My sister has not forgiven me. So even when the person has let you know what they want it can still blow up.
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Continued my mother lived for 6 months , I watched her get weaker and weaker and she had discomfort which I didn't hesitate to medicate her my siblings where never available when I needed them. I was happy my mother didn't die from end stage dementia. That would of been awful to watch. She was never told about the cancer. Because of the dementia. She wouldn't remember or it could of made her very agitated. The night before she died. I got into bed with my mother and just held her hand. My sister and I took turns giving morphine every hour. We got a couple of hrs of sleep. At 2p I gave her the last dose of morphine. I saw her change and at 2:20 pm she died very quietly. I took a stethoscope and listened for heart sounds there was none. My sister and I made sure she clean as could be. We made her funeral arrangements. My two sisters and I agreed on everything. We had white flowers surrounding her. She had an old Irish funeral. I never regretted one day in 12 year. If I had to do it over again. I would do it the same way. I often go to the cemetery and talk to both my parents. It is tough to lose a mother. She is the glue of the family.
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I agree with the family members and not telling their mother has cancer. She doesn't have any dementia. But, I would have Hospice come in for a visit to get to know her while she is pretty stable. You mother doesn't need to know who they are. They are nurses doing a follow up on her recent hospitalizations. Hospice come back the last 6 months of life. If you decide to keep her home or have her placed in a NH. My mother had dementia for 12 years and MDS a form of blood cancer. I worked in a Geriatric facility on the units and spent the last 15 years in geriatric research. My sister lived with my mother for the first four years. Mom was still pretty much independent. My sister wanted to buy her own home. My sister was her POA and I was her Health Care Proxy. We made sure my mother made her will and choose her POA and I was my mother's Health Care Proxy. I was geared to healthcare and my sister paid the bills and took care of my mother's home. I knew after working in healthcare. I was the type of person who could not live with institutional living. The old saying is take them home if you can't tolerate institutional living. Decisions where made early. It took me 2 years to get my sibling to the table with my mother's Physician. The doctor basically talked about my mother's dementia. She basically told them if her heart was to stop and CPR was started. My mother would never be the same as before. That was enough for all of us to agree on my mother's advance directives. She was made a DNR and DNI and DNH no feeding tube. Comfort Care only. I took care of my mother for a total of 12 years and lived with her for the last 8 years. The last 6 months the cancer was making her weaker and weaker. She took a bad fall down the stairs. Even though she was a DNR. She had split her head open in two places and needed staples and sutures. She was kept on the trauma unit for 5 days. When my mother arrived at the hospital she was given 2 transfusions with out my consent. I would of refused. I decided to bring her home with hospice. We took some of the furniture out of the living room and took down the dining room table. The living room was in the dining room. Hospice set the living room up. Hospital bed, table and oxygen etc. I bought a bed to be right next to her. The nurse came with the box of medication that she needed.
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Jeannegibbs, great story, why tell them. If you had told your dad and he died 3 days later you may have thought he gave up .I say keep them comfortable and keep them happy, end of story!!! No one wants more doom and gloom and cancer to most people means "death." Why put anyone through that unnecessarily.
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But, Countrymouse, my mother made it clear that she did not want to know if she did have cancer. That was no surprise to me. Let us say that the result of the first tests had determined that she had cancer. If her geriatrician had told me that and asked if Mom should be told, I would have said "No" UNLESS there were viable treatment options at her age and general health. In that case telling her would give her information she could make a decision about. But if the doctor said there was nothing that could be done and asked if she should be told anyway, I would have said No.

My father was in the hospital for minor elective surgery and while there a chest xray revealed lung cancer. The specialist told the family that it was located where it could not be radiated and there was really nothing to be done. He advised us to place him in a nursing home or take him home to die. We were all shocked. We did not tell Dad of this diagnosis. What would have been the point? His geriatrician joked with him and never let on he had a fatal condition. Dad died three days later, without ever being released from the hospital. Of course, he would have died whether he was told or not. I liked his geriatrician's upbeat approach, which probably prevented Dad's last days from being filled with only anxiety.
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My 75 yr old father died on October 7 2014 of Liver Cancer. 4 yrs before that he suffered 2 strokes and then developed Parkinson's Disease. The strokes left him without the use of his right side. I cared for him in my home for most of that time. Sometimes he was in a nh for different reasons but it was only short term. I had to assist him with everything. he received a diagnosis of cancer 2 yrs before his death. Then he was hospitalized with something else and the hospital told me he did not have cancer. Almost 2 yrs later the same hospital informed me that he did indeed have cancer. By this time my dad had grown frail and the ammonia levels from the cancer were affecting his behavior and his general health. Hospice was called and dad stayed there for 11 days until he died. The hospice nurse asked me if he knew he had cancer and I said No. My dad had been through so much at the end of his life that I was not going to tell him one more bad thing about his health. It would not have changed the outcome and he had had enough. I don't regret my decision and would do it again.
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Jeanne, your mother's doctor gave her the information and offered her the choice. That's the thing. I'm with your mother absolutely: there are plenty of tests I'd decline, and even more treatment options. But I'd be beyond furious if other people shared information and kept it from me.

In fact - kids, if you're eavesdropping: do that and I will HAUNT you.
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there is no right or wrong answer to the question.. it is completely different for anyone asking or answering.. there is no text book or pre posted answer.. there is a million answers.. and none.. just a thought
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In her late 80s my mother in a tcu for rehab (broken arm) had some tests that revealed a growth in her pelvic area. When she got out of rehab and met with her own geriatrician the doctor mentioned what was found and asked if she should set up further testing. My mother (at that time still mentally competent) replied, "No. I don't want tests. If it is cancer I will refuse treatment, so what is the point of worrying about it?" The doctor said many of her patients had that attitude and she respected it, but it was her duty to explain that if it were cancer there are treatments available. Mother said, "I have lived a good long life. I am going to die from something. If this is it, so be it." The doctor looked at me to see how I was doing with this. I shrugged. "It is my mother's decision. It is consistent with what I know of her attitudes and beliefs." And mother did not have the tests.

Mother's primary coping device all of her adult life has been denial. Why should we insist she give that up now?

I don't agree that one of the factors in the decision is what you would want. This isn't about you. There is no doubt in my mind that I would want to know if I were in my mother's situation. But that is no justification for trying to force my preferences on my mother. I know her, as do her other 6 kids. To the extent that we have any say in the matter, we should consider HER wishes, not what we would want for ourselves.

Now that mother has dementia there is even less reason to tell her if she were discovered to have cancer. But in her case, it wouldn't have been appropriate to tell her even before her cognitive decline.

There has been lots of good input on this topic, We each come at it from a different perspective and different experiences. That makes for good discussion.
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SerenityPrayerGiveaHug is right,,. However I am speaking from the daughters point of view with/the parents, Dad is 90, still has drivers lics, and pays bills and speaks to his banker and lawyer once a week even with all necessary papers in order and found out a month ago he has a brain tumor, he gave some pretty compelling answers to this question,,. a lot does have to do with mental capacity , a lot also has to do with other generation's, thinking, wanting, predicting, and or punishing in pursuits of self, awareness, indulgence, acceptance and sometimes gratification... and or guilt in their own lives that they try to find forgiveness' or acknowledgment by becoming the advocate child to dismiss their own mental and or emotional issues that for what ever reason they want to claim as not their fault,,.. by de-fault..
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If you have sibs, get together with Mom to discuss importance of everyone over 60yoa meet with a lawyer to prepare all docs necessary for end of life issues. I took Mom to a lawyer who had been a nursing professor. She spent an hour interviewing and then drew up living will, DNR,healthcare proxy,POA and will. This professional was able to assess Mom's ability to make these decisions and cover all probable medical issues. Lawyers are available with Nursing or Medical educations and experience. Your Mom need not know her current dx if tx will not result in cure.Hospice can also be arranged in advance to make sure she does not suffer..and also assure this support is available for family.
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to each their own conclusions.. weather 90 or 190.. if they are still the mentally competent senior and giver to the family.. should we not respect their independent's of choice and life decisions, as we would of/have earlier in years..?? MPOA is different from DPOA for anyone wondering.. their age does not determine peace of mind if you determine what their mind thinks for them. They trust when they sign certain papers that their independence and knowledge of themselves and what they want will be first and foremost, under your care..
just another thought
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