When Should a Parent Tell Their Offspring That Other Parent is Fatally Ill? (therapy, dating)

[jbgusa]

Exactly 45 years ago, on December 15, 1972 (also a Friday) I was a 15 year old high school sophomore. I came home from school that icy day, hoping that the Holiday concert I was due to perform in wasn't going to be snowed or iced out.

My father had had a rectal cancer resected in late August 1971. After a promising start he began developing pains in July 1972. He had a liver scan and his doctor flat-out lied to him about the results; they told him it was "clear." While he had his good days, many days were increasingly painful by October. My doctor said he told my mother the outlook and at some level I think he was telling me the truth. When he gave my mother a surprise party on November 7, 1972, her 40th birthday, I think she was pretty sure it was near the end, though he still went to work in NYC every day.

He had another liver scan on November 24, the day after Thanksgiving. His doctor told my mother that he was close to death, though that day he felt well enough we even talked about his returning to the ski slopes that winter. His last day of work was December 8; he was checked into New Rochelle Hospital on December 11, a Monday. One of the doctors there told my mother "don't you think it's time you told your son"?

When I came home she tried to be indirect. It didn't work, since I knew from my reading at the library what the real outlook for his disease was. I insisted on calling his doctor, since teh lack of candor seriously bothered me. He told me he had told her in October, but that he knew from before the 1971 operation my father was finished. I called my cousin in another state, who confirmed that I had read the literature correctly. That night, since my mother didn't feel up to driving, I took a cab to the High School to play at the concert. It was too icy to bike the six or so miles.

I wanted to tell my father what his fate was to be. My mother would not permit me to do that. my father died on January 5, 1973, exactly four weeks later.

The question I throw out there is, in that kind of situation, when should a son or daughter know what's going on? I did my own reading and came to my own conclusion. Thoughts?

[Parnassia]

OP your story was certainly a sad one, but consider that people's views about "give it to me straight Doc" have changed a LOT since the 70s. People didn't tend to share much about serious disease especially cancer. I suspect many MDs have stories about patients who don't want the whole story especially if there isn't much that could affect the outcome either way. Some people don't want to know the future because they prefer living in the present. They may wish to spare their kids a long drawn out sorrow.

Your mother may have discussed what to share and what not to with your dad. You don't necessarily know what they discussed in private. Supposedly they knew you well enough at that age to decide. Are you so certain he didn't know but kept it to himself in order to spare others? It was their difficult decision to make, not yours; it was not a betrayal.

As for when to tell kids about a parents' illness, there is no simple answer or one that is right for any or most families. The parent's situation may not be clear cut. Sometimes uncertainty is worse because of misguided hopes. Every family relationship situation is unique. How people take bad news is completely variable. I might be able to predict what my own family might do, but whether to tell, how much to tell and when would depend on who it was. One of my siblings would have gone into melodramatic mourning, doom and gloom, for months or years. Some aunt or cousin might disappear because they couldn't face their grief or worry. Another would have become an insufferable, controlling, know-it-all, demanding acceptance of every bizarre alternative treatment for whatever disease it happened to be. Another might not react in any outward way, just internalize, be kind and thoughtful, and hope for a miracle.

I certainly hope you haven't spent all these years second-guessing the decision your parents made more than 40 years ago.

[Mr. In-Between]

I just want to be clear here... are you saying that your mother not only lied to you, but also lied to your father about his condition? That's absolutely inexcusable and reprehensible behavior on her part, and frankly, if you also withheld the truth from him after you found out, it was the wrong decision. The question isn't when should you have been told, but when should he have been told - and the only answer to that is, "immediately." Neither of you had the right not to tell him.

[NoMansLands]

Originally Posted by Mr. In-Between

I just want to be clear here... are you saying that your mother not only lied to you, but also lied to your father about his condition? That's absolutely inexcusable and reprehensible behavior on her part, and frankly, if you also withheld the truth from him after you found out, it was the wrong decision. The question isn't when should you have been told, but when should he have been told - and the only answer to that is, "immediately." Neither of you had the right not to tell him.

Well in defense of the son, he was more than likely accepting that his mother was the authority here and he was not to usurp that. Children, even when they become adults, try to respect the authority their parents have, in that "mother or father knows best" belief, which is often very confusing to the adult child.

This would be a malpractice suit these days, to not tell a patient their condition, and absolutely rightly so. If I had cancer (or whatever ailment that was deadly) I would get a second opinion, and a third, and do my homework on google these days, his father didn't have that choice back then, and I would never let a doctor say to me "I want to talk to your spouse". Umm, I don't think so. I will be the first to know, and then I will decide who else knows and tell them myself, the doctor will have zero authority to do so. Any doctor that didn't tell me the truth would get their pants sued off as soon as I found out the truth. This is one of the big benefits of HIPPA.

Families are only as sick as their secrets. To keep secrets, a family is dysfunctional and neurotic. I will never support the hushed approach some families use, it's mental illness in itself.

Look at McCain. You think he doesn't know the probability of him surviving past one year is almost nil? He most certainly does, and he has made his choices on how to spend that last year, the way he wants to.

[ClaraC]

I think there's a lot here that you don't know, jb. You don't know whether your father asked to be shielded from the truth. I agree with Allison, that was a different time. It's unthinkable now that a doctor would purposely deceive a patient but tell the wife the truth. But that was done back then, as a "kindness".

Your mother may not have accepted the truth - she may have been in complete denial.

Your father must have known. He must have. The conversation of saying goodbye to a teenage son is just more than some people can handle. He just couldn't handle it. And neither could your mom.

[bus man]

Originally Posted by jbgusa

I wanted to tell my father what his fate was to be. My mother would not permit me to do that. my father died on January 5, 1973, exactly four weeks later.

The question I throw out there is, in that kind of situation, when should a son or daughter know what's going on? I did my own reading and came to my own conclusion. Thoughts?

I would have to agree with your mother in this case. Unless you are a medical doctor (which, at age 15, you weren't) it's not your place to give your father a medical diagnosis. His doctor should have done so, as forthrightly as possible. Of course, as has been noted, it was a different time. Some people didn't want to be told. It's entirely possible that the doctor tried to tell your father the news, but he refused to hear it. We just don't know.

As to your question, my opinion is that the kids should be brought into it as soon as the diagnosis has been made and confirmed. I believe that the kids have the right to have the information so that they can process it in the manner that works for them. I also believe that they should be able to maximize their remaining time with their dying parent.

The only exception I can think of off-hand is that the parent might want to wait if there is some big event coming up, and they don't want to spoil it with depressing news. If one's adult child is going to be getting married next month, for example, I would hold off on revealing the news until after the newlyweds have returned from their honeymoon, so that they can enjoy the wedding period without being weighed down by bad news.

[jbgusa]

Originally Posted by AllisonHB

OP your story was certainly a sad one, but consider that people's views about "give it to me straight Doc" have changed a LOT since the 70s. People didn't tend to share much about serious disease especially cancer. I suspect many MDs have stories about patients who don't want the whole story especially if there isn't much that could affect the outcome either way. Some people don't want to know the future because they prefer living in the present. They may wish to spare their kids a long drawn out sorrow.

Originally Posted by Mr. In-Between

I just want to be clear here... are you saying that your mother not only lied to you, but also lied to your father about his condition? That's absolutely inexcusable and reprehensible behavior on her part, and frankly, if you also withheld the truth from him after you found out, it was the wrong decision. The question isn't when should you have been told, but when should he have been told - and the only answer to that is, "immediately." Neither of you had the right not to tell him.

Originally Posted by NoMansLands

Well in defense of the son, he was more than likely accepting that his mother was the authority here and he was not to usurp that. Children, even when they become adults, try to respect the authority their parents have, in that "mother or father knows best" belief, which is often very confusing to the adult child.

The problem with telling my father was that I was 15 and didn't drive. On my three or four hospital visits before he lost consciousness I was never alone with my father. My mother drove me there and paid pretty close attention to what I was doing. And remember, he was going to be dead soon. I had no "court of appeals," i.e. the other parent if my mother didn't agree with me. And Mr. In-Between, I agree that the "ethics" of those days descended to a "reprehensible" standard. The fact is that both with the doctors and among the family of the sick person, bald-faced lies were common.

In February 1972, about six months before he became obviously sick, we were on vacation with my family in Barbados. I went to the night club myself to listen to calypso music. I struck up a conversation with a doctor who explained the likely, or inevitable course of the disease. He said, in simple English, there was no way of "getting it all" in an operation for that kind of cancer and the main hope was that recurrence occurred later rather than sooner.

Originally Posted by AllisonHB

Your mother may have discussed what to share and what not to with your dad. You don't necessarily know what they discussed in private. Supposedly they knew you well enough at that age to decide. Are you so certain he didn't know but kept it to himself in order to spare others? It was their difficult decision to make, not yours; it was not a betrayal.

My mother shared absolutely nothing with my father.

Originally Posted by AllisonHB

As for when to tell kids about a parents' illness, there is no simple answer or one that is right for any or most families. The parent's situation may not be clear cut. Sometimes uncertainty is worse because of misguided hopes. Every family relationship situation is unique. How people take bad news is completely variable. I might be able to predict what my own family might do, but whether to tell, how much to tell and when would depend on who it was. One of my siblings would have gone into melodramatic mourning, doom and gloom, for months or years. Some aunt or cousin might disappear because they couldn't face their grief or worry. Another would have become an insufferable, controlling, know-it-all, demanding acceptance of every bizarre alternative treatment for whatever disease it happened to be. Another might not react in any outward way, just internalize, be kind and thoughtful, and hope for a miracle.

Originally Posted by NoMansLands

This would be a malpractice suit these days, to not tell a patient their condition, and absolutely rightly so. If I had cancer (or whatever ailment that was deadly) I would get a second opinion, and a third, and do my homework on google these days, his father didn't have that choice back then, and I would never let a doctor say to me "I want to talk to your spouse". Umm, I don't think so. I will be the first to know, and then I will decide who else knows and tell them myself, the doctor will have zero authority to do so. Any doctor that didn't tell me the truth would get their pants sued off as soon as I found out the truth. This is one of the big benefits of HIPPA.

[quote=NoMansLands;50405932] Families are only as sick as their secrets. To keep secrets, a family is dysfunctional and neurotic. I will never support the hushed approach some families use, it's mental illness in itself. /quote]My mother had her issues, no question about that. Not letting me know was definitely one of them. My motto in life is that I'm not smart enough to keep two stories straight. When my mother started dating my stepfather on Valentines Day 1973 and married him in June 1974, I definitely preferred my stepfather over my mother. I delivered both eulogies, in 2013 for my stepfather and 2014 for my mother. I tried to keep my mixed feelings about my mother out of that eulogy.

Originally Posted by NoMansLands

Look at McCain. You think he doesn't know the probability of him surviving past one year is almost nil? He most certainly does, and he has made his choices on how to spend that last year, the way he wants to.

If I were in that situation, I would probably opt for palliative treatment only and even that to a minimum. I would want as much "good time" as possible, not the living hell of most chemotherapy. I played tennis with my father as late as early October. If he had been receiving likely futile treatment that would have been impossible.

Originally Posted by ClaraC

Your father must have known. He must have. The conversation of saying goodbye to a teenage son is just more than some people can handle. He just couldn't handle it. And neither could your mom.

On the night of my mother's surprise party, they had dinner with another couple at the 21 Club in Manhattan. While they were waiting for the car to come from the garage, my father told his male counterpart, who happened to be a doctor, "I'm fading fast." When I represented that doctor 14 years later he told me that he thought my father "knew" though he didn't tell my father he agreed with him. As for my mother being in denial, she may have been in denial that past summer but by then she certainly wasn't. She surreptitiously returned most of the birthday gifts in order to accumulate funds.

Originally Posted by AllisonHB

I certainly hope you haven't spent all these years second-guessing the decision your parents made more than 40 years ago.

It was 45 years ago and no. But certain things have a way of searing into memory. I am a successful lawyer, have been married 26 1/2 years, have two college-age children and am active in my synagogue. Does that sound active enough for you?

[NoMansLands]

McCain would live only about 3 months without the tumor removing surgery he had, and radiation and chemo he is getting now, along with who knows what else--I'm sure he has the best of the best, and may be getting other treatments that are not made public.
I don't know how he could do any better than he is. He's fighting death until he won't be able to anymore. I'm sure he's trying to be the 3% that last 3 years, although that is usually only for people under 50. The prognosis is beyond grim. What can any of us do, each day we are alive, other than try to cheat death? Live while we can, nobody gets out of here alive.

Sounds like you have a good life, OP, congrats on your successes.

[Spuggy]

Originally Posted by jbgusa

Exactly 45 years ago, on December 15, 1972 (also a Friday) I was a 15 year old high school sophomore. I came home from school that icy day, hoping that the Holiday concert I was due to perform in wasn't going to be snowed or iced out.

My father had had a rectal cancer resected in late August 1971. After a promising start he began developing pains in July 1972. He had a liver scan and his doctor flat-out lied to him about the results; they told him it was "clear." While he had his good days, many days were increasingly painful by October. My doctor said he told my mother the outlook and at some level I think he was telling me the truth. When he gave my mother a surprise party on November 7, 1972, her 40th birthday, I think she was pretty sure it was near the end, though he still went to work in NYC every day.

He had another liver scan on November 24, the day after Thanksgiving. His doctor told my mother that he was close to death, though that day he felt well enough we even talked about his returning to the ski slopes that winter. His last day of work was December 8; he was checked into New Rochelle Hospital on December 11, a Monday. One of the doctors there told my mother "don't you think it's time you told your son"?

When I came home she tried to be indirect. It didn't work, since I knew from my reading at the library what the real outlook for his disease was. I insisted on calling his doctor, since teh lack of candor seriously bothered me. He told me he had told her in October, but that he knew from before the 1971 operation my father was finished. I called my cousin in another state, who confirmed that I had read the literature correctly. That night, since my mother didn't feel up to driving, I took a cab to the High School to play at the concert. It was too icy to bike the six or so miles.

I wanted to tell my father what his fate was to be. My mother would not permit me to do that. my father died on January 5, 1973, exactly four weeks later.

The question I throw out there is, in that kind of situation, when should a son or daughter know what's going on? I did my own reading and came to my own conclusion. Thoughts?

Things were different back then and it wasn't unheard of that some patients were NOT told how serious their illness was ( I didn't agree then or now). Parents also tried to shield their children as much as they could from the truth so as to not worry them or burden them. Fast forward: WHen I was going through the process of determining if I had breast cancer the last thing I wanted to do was worry my dear son. Once diagnosed though I felt he needed to know and he needed the right to do what any loving person wants to do for someone they love, offer support. I think your mother denied you that. 15 is a terrible age to lose a parent and is one of those defining moments in life that can alter it and determine the future relationships.

[jbgusa]

Originally Posted by Spuggy

Once diagnosed though I felt he needed to know and he needed the right to do what any loving person wants to do for someone they love, offer support. I think your mother denied you that. 15 is a terrible age to lose a parent and is one of those defining moments in life that can alter it and determine the future relationships.

The gold (not silver) lining in all this was her meeting of and marriage to my stepfather, Ed. A bit of an explanation is necessary.

His younger daughter, Janet, went to grade school, Junior High School (as it was then called) and part of high school with me. Ed's late wife, Barbara (she died April 25, 1972) and my mother went to the beauty salon together. Janet was at my Bar Mitzvah. The next day, May 3, 1970 Janet and Ed, her father (my eventual stepfather) came by to pick up a news article about Janet's brother that my mother mentioned to Barbara, Janet's mother. I remembered their dog, a striking Royal Standard Poodle, who was in the car.

In fact, I was told early in April to "be a little nice" to Janet because Barbara "looked terrible" the last time my mother saw her at the beauty salon and probably wouldn't last long. On November 11 or 12, 1972 while my father was still alive I ran across Ed, my eventual stepfather, while biking to a roller hockey game. We talked about the difficulties Janet was having in school.

My mother met Ed at the bank on a Monday night in February 1973. They went out on their first date that Saturday. By April Ed was the one teaching me to drive, since I turned 16 and got my permit early that month. Janet, Bill (his son) and I, and I understand his other daughter Debbie as well pretty much demanded that they marry. After some back-and-forthing, in October they were engaged, and married in June 1974.

While I had a pretty good relationship with my mother, I did not want her as my only parent for any length of time. Specifically, I preferred my own bicycle as transportation to her car and we sparred over that constantly.

Originally Posted by bus man

I would have to agree with your mother in this case. Unless you are a medical doctor (which, at age 15, you weren't) it's not your place to give your father a medical diagnosis. His doctor should have done so, as forthrightly as possible.

You misunderstood. I wanted the diagnosis from my doctor to be shared when he had the information. He was part of the lie in July 1972 about the scan being clear. He blamed the pains in the fall of 1972 on an "embolism scar" from complications from the past year's surgery. He referred to the liver can results of November 24, 1972 as an "inflamed liver" when making a good prescription for a more effective pain killer.

Why was this lying consequential? 1) He could have sold his interior architecture business for at least some money to a competitor, and used his remaining time to transition the clients to a new firm; and 2) Aspirin was extremely effective as pain relief. He didn't get permission to take the pills more often or increase the dose until just before he went in the hospital. He could have used the inexpensive and safe pain relief.

Originally Posted by bus man

Of course, as has been noted, it was a different time. Some people didn't want to be told. It's entirely possible that the doctor tried to tell your father the news, but he refused to hear it. We just don't know.

Absolutely not. My father told me that flat-out asked "are you telling me everything" after the "clear" liver scan and repeatedly during the fall.

Originally Posted by bus man

As to your question, my opinion is that the kids should be brought into it as soon as the diagnosis has been made and confirmed. I believe that the kids have the right to have the information so that they can process it in the manner that works for them. I also believe that they should be able to maximize their remaining time with their dying parent.

The only exception I can think of off-hand is that the parent might want to wait if there is some big event coming up, and they don't want to spoil it with depressing news. If one's adult child is going to be getting married next month, for example, I would hold off on revealing the news until after the newlyweds have returned from their honeymoon, so that they can enjoy the wedding period without being weighed down by bad news.

I am not sure I agree with the exception. I'd have to think about that. Perhaps I'll post more later on.