45 years yesterday, 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?
I was 10 when my mother died of cancer. I have 8 sibs, my oldest brother was 18. Her sister ( our aunt) told him about a month before she went into the hospital for the last time. The older kids visited her a bunch. No kids under 12 were allowed to visit. Her Dr. had Daddy sneak us in to see her the last time. I knew when I saw her she was dying. We had a lady that stayed with us while Daddy and the older sibs weren’t home. I rode with my Daddy to pick her up one day. I point blank asked him was Momma gonna die, he said some platitudes about how the doctors were trying new things and we could still hope. I was so happy. I told my younger sibs and my friend that everything was gonna be okay. Well, you guessed it, she died that same night. I was devastated. I was sure it was my fault she died. I had opened my big mouth, and it killed her. It was years before I could even begin to come to terms with it. I was able to talk about it with my Daddy and I understand why he did what he did about telling us. He was barely hanging on himself. The thought of him having to raise 8 kids alone must have been overwhelming. It was a different time.
^^^^I think, as in your situation, the remaining parent (and even doctors) are operating for their own benefit and not the remainder of the family, such as siblings or children. They rationalize it as “not wanting to upset them” but that upset is inevitable.The person is going to die.
I wasn’t a child when I lost either of my parents, although I was relatively young (30) when I lost my father. I lost my mother a few month ago, and I am 50 now.
When my father was dying, my mother was quite honest with me about his status. He had about three months left, and he would be deteriorating during that time. He died almost exactly three months later, and was in pretty bad shape the last two weeks or so. It had gotten to the point where I was no longer praying for healing, but for a swift end to his suffering.
My mother, on the other hand, was not honest with us about her own illness. When she had her first hospitalization, she let us think it was unrelated to her cancer diagnosis four years earlier (she’d had two rounds of chemo, and the results were so-so). When she had her second hospitalization, she was headed for hospice, but didn’t tell us until she was packing her bags. We had just seen her a few weeks earlier, and could see she didn’t look good, but she wouldn’t talk about it.
At no point when she was in hospice would she give us any hint about what her prognosis was. My brother and I were left to Google “average stay in hospice,” and take what scraps of information we could get from our stepfather.
I worried a lot more than I would have if I’d had more information. I jumped every time the phone rang. When I was at work, my mind wandered.
It would have been better to have factual information from my mother.
I guess she was blunt with us about my father, because he told her to be. Really it’s her MO to hide things, so I think my father must have been the one who wanted honesty. I’m glad for that.
My friend Bea was the first person in her family to attend HS. The summer we were 16 she got a temp job as a general clerk in our local courts; she found the work absolutely fascinating and decided she wanted to become a lawyer. Her grades were good, she was eligible for the highest level of fellowship from our local government and our school had said they’d look into getting a supplementary from their Order. Then her father got brain cancer when we were in 12th grade, and it was Bea who held the family together. Her brother… how to put this… nice guy and stuff but IQ on the need a sweater side; her mother was in denial and then some. The father eventually was declared cured but couldn’t work any more. Bea did get a law degree and become a politician at the local and regional level, but some 10 years later than originally intended.
In my father’s side of the family, cancer is so common that most people will announce it along the lines of “ok, I’ve just been to the doctor. sigh Guess” “hm… lung? liver? colon? how bad?” And yet, my brothers, who had the same information I did, managed to be surprised when Dad died (uhm… so, rivers, Egypt, right…).
What was common practice in 1971 is very different from common practice in 2017. Ditto in different countries and regions within countries and social / ethnic groups.
Within all that there are no great answers. There are lots of bad answers and some less-bad answers.
The OP brings up several very different questions/issues:
A) When should the patient get the straight info;
B) When should adult family members get the straight info;
C) When should younger family members get the straight info and how is that simplified (not sugar-coated) depending on the kids’ ages.
IMO …
Overall current US society does a too-good job of pretending nobody dies. And it’s almost always a crisis of discovery and of lost innocence as the pretending becomes increasingly untenable in any given case. As a result this stuff takes on a surreal tone, like debating when to tell a growing child that Santa isn’t real.
A)
In 2017 there is now zero excuse for being less than fully candid with the patient. Which includes discussing the worst case, the best case, and the rough probabilities of each. From my reading it seems some practices embrace this model and others are still struggling to pitch any idea other than “The game ain’t over yet, let’s keep trying ever more drastic measures like Custer’s last stand. We’re in it to win it!!”
IMO this latter is a gross disservice to the patient and often bespeaks abject cowardice on the part of medical staff. No, the truth isn’t easy. But it’s what the patient is paying you to deliver.
Further thought…My Daddy had to be Father and Mother to all us kids. We were 8 sibs age 2 to 18 years. Somehow were modestly successful. We all went to college and graduated. All were married, not all perfect. We all had children, not all perfect. No serial killers or bank robbers. 3 teachers, 1 social worker, 2 musicians, 1 artist (me), 1 cosmetologist/writer. When Daddy died in 2015, I thought I would die. It was like losing 2 parents at once. It brought up all the guilt of my Moms death, allover again. I struggled with the knowledge that somehow I was the reason they died. It didnt help that I was the only sib left in Arkansas, with close proximity to my Daddy. I saw him every weekend. He was closer to my kids than any of the rest of his grandchildren. My sibs resented it, I suspect. So the ugly head of guilt rose up with a vengeance. It has taken these 2 years to work through this, I am still working on it. I miss that man everyday. Holidays are the worst. But I have got through another one without imploding. Thank God it’s over. On to brighter days.
To answer the question: as soon as possible. It’s cruel to keep that information from kids, and they’re tougher than one thinks.
My wife was eleven when her father died of pancreatic cancer. Her mother didn’t tell her he was terminally ill and his death, on her fucking birthday, was a trauma that affects her to this day. She didn’t speak to her mother for many years, but was finally able to reconcile.
I agree. Earliest possible moment. When it becomes apparent that the parent will not survive the illness. Of course then there are the accidental deaths, that is a whole other issue, with its own set of problems.
Things have changed a lot over 45 years. When my grandfather had prostate cancer, no one would tell him him he had had cancer, although he underwent radical (especially for those days) surgery in which they removed prostate, bladder and maybe some other items. He died four years later but of a heart attack, not the cancer.
When my oldest child was 6 weeks old, my FIL died and they didn’t want to tell my wife because she was nursing. My mother thought this was wrong and called to tell me. We got on a plane to get to the funeral. The sad part is that, although he had seen pictures of his granddaughter, he never actually saw her. That was over 50 years ago; I don’t think it would happen today.
Fashions in this certainly change. And mostly IMO for the better.
When my mother was 4 her father died. This was in the mid 1930s. She attended his funeral not having been told what the ceremony was about. And saw him laid out in the coffin, still not having been told he was ill, much less dead. :eek:
To say that left lasting scars would be the understatement of her entire life. What a hideously cruel thing to do to a child. And yet they thought they were doing the right thing.
This is a lot like my experience as well. My mother fell at home (not the first time) and was taken to the hospital, and a few days later, rather than sending her home they admitted her to a convalescent hospital. I assumed that was for intensive rehab and such, and she would be sent home some time later, after she had recovered some strength in her legs. Little did I know.
One day during her stay there, I asked the nurse in charge of the wing she was in to give it to me straight, since my father was avoiding tough conversations. I asked the nurse, “…like what happens here - do people eventually recover and get sent home?” She was blunt and honest - “No. Not usually”. I then learned that once she stopped trying to help herself and would enter her dying phase, her care would change to hospice care, so I had to learn what that was as well. My kids were fairly young but my wife and I decided to let them pay a visit to that place on a day my mom was doing OK. I don’t remember how I told them she was gone, some time later.
When my dad died 3 years later, I came home and sat my kids down on the couch while I sat on the coffee table facing them. They had a casual relationship with him, and they were about 10 and 13 years old. They knew that people died, but it was the first time it was someone they knew. They were not close to my mother. I just came out and told them he died that day. Only in the prior weeks while I was helping him get to and from his Dr appointments did I learn the full extent of his health problems.
Both of my parents were less than transparent about the health problems they were facing near the end. My in-laws are the same way now (altho my FIL goes on and on about his experiences with various drugs and doctors). I think they do that because they think they are protecting us from concerning news. I don’t think they realized the lack of info can, in some ways, be more injuring and surprising.
This isn’t about a parent, but a grandparent. My daughter was 8 when my FIL passed away. He had been admitted to the hospital for something minor. At one point he was joking with a nurse. She turned around and that quickly he had a major stroke. My husband and the rest of his siblings made their way to the hospital. He called me later in tears that it was just a matter of time. I had our daughter get dressed and we headed out to the hospital, I had no one to stay with her. At one point on the drive she asked, was he going to die. I told her yes, and explained as easily as I could what had happened and how sorry I was and that daddy was very sad. I told her it may not be that day, but that he was going to die soon. He died within a few days. I’m glad I told her upfront but I still think she was too young to process it. From my perspective, death is too important of a subject to bullshit about, and also even if she couldn’t fully grasp the idea of death itself, I wanted her to understand as best as she could what was going on.
Father died at age 68 we kind of danced around it. (cancer) until the minister came to visit him one day and said are you prepared to die? That was the best thing he could have done we could talk openly and he discussed what he wanted and it just was so much better for everyone. My kids were little but they knew what was going on. my mother passed this last year at 93 and I had to handle that differently she had multiple things wrong and in the last few weeks they found cancer the dr talked to me about it and as it was untreatable we felt that there was no reason to tell her. I do not know how all drs do it but It seems that the ones i have had dealings with have been very honest and do not try and lie about your condition they may not always know but they do not tell you stuff just to ease your mind.
Although hardly in the same league as the OP, when I was 29 my parents did not say anything about my grandmother (my last remaining grandparent) dying until after the funeral. She was 86 and had spent the last three years or so in a nursing home so it was hardly shocking, but I was extremely irked.
Their excuse was they knew I would want to attend the funeral and thought I could not afford it (Santa Barbara from San Jose). If I had the life seasoning I have now back then, I would have called them out on denying my agency.
On New Years Eve, 45 years ago we visited my father in the hospital. While he had a “good day” the day before, he was semi-conscious, his legs waving in the air and the rest of him tied securely to the bed. The providers had unhooked the feeding tube, telling us that he (involuntarily) struggled too much. We understood it to mean that they knew the end was near and there was no point.
His sister and her significant other showed up after a New Years Eve engagement. My mother was told by the nurse that she was in party gear and wreaked of alcohol. She ordered the tubes reconnected, so they tied my father more securely (the way you would tie a cord of lumber) and put him back on. When I came back to the hospital I was livid. My mother said to just “let it be.”
I went back to school the next day at the end of the holiday break. With a few dimes in my pocket to keep my tabs on what was going on. He died Thursday night/Friday morning.
That is hard. I worked about two miles from my grandmother’s nursing home and was told only the day before. I rushed over to say my goodbyes. My office disturbed them.
I think in those situations the nursing home decides to “pull the plug” when the bed is needed for a new patient that was going to be paying privately. Perhaps your family wasn’t privy to their machinations.
I was 10 when my paternal grandfather died - the first death in the family that I dealt with. He’d had strokes a couple of times and I knew he had health issues. I don’t recall my parents trying to hide any of it from us, tho they didn’t go into clinical detail.
I remember the funeral, and I remember my grandmother crying, which was probably the first time I saw an adult cry. On and off over the years, I had dreams about him in his casket, but they weren’t nightmares, just odd dreams.
My daughter has had 4 great grandparents and one grandfather die. We never tried to hide any of them from her, but when she was really young, I’m pretty sure she didn’t understand. I don’t think lies serve anyone - death will happen and everyone deserves the truth. OK, I’ll make an exception for someone with dementia or a serious mental illness, but a reasoning person is entitled to the truth, explained in an age-appropriate manner.