What Beth said. And Bob. Too many children--including teenagers, who are not really children as, say, an 8-year-old is--are left alone with the knowledge that they themselves, or a loved one, is dying because the adults couldn't bring themselves to tell the truth. It is a bad business to lie to children--and anyway, they certainly know that something evil is coming and are trying to protect those same adults.
We are in the process of deciding what to tell our children, who are 10 and 12, about my husband's rare illness, which has a life expectancy of 5 years. So far, we're waiting--telling them about the illness, but not the life expectancy, because it's not close yet. But I worry that they pick up on the level of worry in the home, even when it's "hidden" (or so we think). Still, once you think your dad is dying, it's hard to un-think it.
If the disease runs its typical course, there will be a lack of speaking and swallowing and movement first, with a side of optional dementia. So far, our only plan to is tell them things as they ask but not sooner--and to live hard and play hard while we have the time.
1
@Anonymous Today. I had to tell my kids Similiar news when they were 7 and 11. My husband had an expectancy of about 3-5 years. The eldest asked and was relieved to hear it was years not months. It’s a long time when your a kid. My husband tells them there will be a period of decline before he dies so there will be time to prepare. We’re almost 3 years in to diagnoses and now on permanent chemo. The kids are adjusted well. We talk openly and frankly (sometimes with very dark humour) nothing is off limits. The eldest identified it makes him feel safe to know all the facts so he doesn’t have to guess what’s going on. The youngest is starting to see it as normal for us. Talk frankly with your husband too. Funeral arrangements etc. whilst it’s tricky to bring it all up. It takes away a lot of worry and means you can put things in place now for the future. We still talk about the future but mention “depending on what’s happening with Dad”. It’s a hard journeynyour on, sending you strength and laughter. Try and look for the gifts.
4
Q. "How will I get through the ceiling when I go to heaven."
A. "When a beam of light comes all the way from the Sun and arrives at a hard glass window, I suppose it could either stop or break the glass. I would never imagine that it just slips right through. Somethings are amazing, don't you think?"
6
A resource especially for mothers facing a terminal diagnosis: momalways.org has been featured in NYT.com parenting
3
My father got his diagnosis in 1966. No one said "cancer"--it was taboo in those days, so there certainly was no telling us, ages 10, 14, 16. His prognosis was 6 mos to 2 yrs but thankfully he lived 6 more yrs. Sadly, my parents were still in "don't tell" mode even as he began to disintegrate before our very eyes, and they couldn't extricate themselves from it. Eventually, my mother blurted it out but the damage was done. Then, when he died, my siblings were there but I, 16 and the youngest, wasn't asked if I wanted to be there. For decades, I had a recurring dream that he was still alive but suffering from an illness and in a self-imposed exile. In the dream, I'd awaken at night to find him home and talking to my mother. When I asked, "Where are you living? What illness do you have? Why aren't you with us?", he'd say, "I can't be home with you and don't tell your brother and sister that you saw me." Then he'd disappear again. The same torturing dream for 40 years. The fear and confusion caused by the unknown are far worse than anything you can tell your children. Secrecy is relentlessly cruel. Children need and deserve information. It helps them make sense of what is happening. And just when you think they have it straight, they mature and need more discussion. Teach children how to prepare for and manage sadness and loss, don't pretend they don't exist. Use resources including counseling and books. ASK THEM what they want to know, when they want to be told and by whom.
10
In 2015 I got diagnosed with an extremely rare lung disease called LYMPHANGIOLEIOMYOMATOSIS
LAM disease... there’s no treatment ... in July 2017 I started having collapsed lungs(14) that continued till January 2018. I’m 50 I have 2 children now 13 and 9. This past year I’ve been healing from chest tubes and pleurodesis procedures.
My kids are aware of this disease and the effects on our everyday life. Last year (2nd grade) my daughter had a lot of school problems that ended up with ADHD meds. Before my collapses I moved my father in law in our home to care for him due to his Alzheimer’s... he passes in June, in July my problems stared .... I want to help my daughter without medication. I’m starting counseling for her in hopes over summer she can have more understanding and peace with all thats been thrown at her. My goal is no drugs...
what type of counseling am I looking for??? For a family that loves a lot but doesn’t really “talk” .... sometimes saying nothing says everything.... not in this case. I try to discuss health but get afraid of putting wrong ideas in their minds. How honest do u be with a 9 yr old. I could be here 10 yrs or 10 days .... to relieve fear is my goal... she heard us talking about my pregnancies progressing LAM in my lungs ( estrogen related) in no way to I want my children thinking they are why I have this.... I can’t find the words for fear of them being the wrong ones ....
1
@Christina My friend has LAM disease. Columbia University in NYC is doing lots of research and there is some sort of drug that helps, a bit. Look into it.
1
A children’s cancer ward is where you find angels and lose any gods you had. You take your beautiful son for an MRI scan. He’s one those children looks like how Michelangelo’s David must have looked at age seven. Yes, and he plays the violin and speaks two languages already. How many times did you carry him on your shoulders, feeling thankful as St. Christopher carrying the Infant? But he gets these severe headaches. It’s nothing, the doctor said. Probably nothing. Could be an allergy. Three months later the projectile vomiting starts. You take a taxi home from the hospital, and there’s an ambulance outside your apartment. Because it’s not nothing. Fast growing pituitary adenomas are not nothing. There’s time to grab his pajamas and phone his mother to meet you at the hospital. Twenty-four hours later he’s wheeled past you into surgery and that’s the last time you see him. From then on people look at you with pity or accusingly. You're never sure. Three months? He waited too long. What was the boy's name? How old would he be? He’s wheeled past, and you don’t tell him how much you love him. You didn’t say, I’ll be here waiting. Only stood there crying. But you haven’t cried since. Not even when his mother died. Twenty years on, you read something in a newspaper and realize you're still waiting. God takes the angels to his cancer ward and gives you the symptoms of PTSD. But you’re not disordered. You just leave the room when people talk about their kids always causing trouble.
16
@johnyjoe I am so sorry, sending you lots of love. I hope you find some comfort in this lifetime.
9
@johnyjoe
I am so so sorry for your losses
4
@johnyjoe
I am so sorry for all that you’ve been through. Your words were so eloquent, and moved me deeply.
4
This is very helpful. I have metastatic breast cancer--at the moment under control--and my husband has a rare lung disease that has no treatment. Though the doctors have told us little, my fear is that he has only a few months to live. Our children--ages 20, almost 17 and 14 have been kept informed. All wanted to be told exactly what was happening. It hasn't been easy, but a psychiatrist friend pointed out that children often follow the mother's mood: if I can be calm when I tell them a piece of bad news, it's easier for them to remain calm.
http://www.thecriticalmom.blogspot.com
6
My children are young adults - 21 and 23 - and my ex-husband, who is only 57, has been diagnosed with a terminal cancer that (as of this past week) will apparently be terminal within 6 to 9 months. The kids know he is sick, and that it is bad, but they don't know how bad it is. I am anguished over how this will impact them - they are very close to their dad. It's out of my hands - I need to leave it to him to talk to them. I can't imagine if they were still children.
3
Paula Rauch, M.D., and Anna Muriel, M.D., authored Raising an Emotionally Healthy Child When a Parent is Sick in 2005. The book, written for the public, is based on a Massachusetts General Hospital program run through the department of Child Psychiatry. While in training at MGH, I had the opportunity to work with Drs. Rauch and Muriel, who are incredibly compassionate and pragmatic clinicians who walked hundreds of families through the difficult conversations regarding a parent’s terminal illness. I highly recommend this book for families who are going through this unenviable experience.
12
'Children around 5 to 7 often feel very responsible when bad things happen'
yes I would pay attention to that - young kids ego-centric view of the world - assuming it's their fault when bad things happen.
my mother was diagnosed with terminal cancer when I was 12 and wasn't expected to live beyond 3 months - but she lived another 3 years - so when she did die it was a shock to me as I had gotten used to her just being sick.
6
Dr. Brenda Kelly delivered our boy/girl twins during our time in Oxford. She has a spiritual depth that I have rarely seen in a human being let alone a physician. Our daughter was born at an extremely fragile 1 pound 4 ounces; I would run into Dr Kelly in the NICU for weeks after the birth. She would look in on Margot after her shifts to see how she was doing. She gave me--a frightened, tearful father--a restorative and healing hug and words of encouragement. The incredibly small and skillfully woven scars of her c-sections are legendary among parents in Oxford. It is not surprising me that she undergo a powerful and hopeful process to sharing such challenging news with her own family. Dr Kelly, it seems that we are still learning from you.
16
I have never forgotten a 9 year old child from my early days as a child protective worker - she was living with her grandparents after a young life filled with abuse and neglect. She was dying of AIDS she got from a blood transfusion at birth and her grandparents wanted to protect her from that terrible news. When we were alone, she asked me if her grandparents would be upset if she went to heaven before them. My heart broke a million times over that she understood everything and was bearing it all alone because the reality was none of us adults could face the truth. Children need to hear as much truth as they can developmentally handle and adults need much more support to have these conversations. The young girl died a few months later but she taught me to be a better social worker.
28
I was 13 when my mother was brought home from a prolonged hospital stay I didn’t understand. I was shuttled off to spend the night at a friends “so my mother could have a quiet first night at home”. The next morning my friend’s mother approached me and before she said a word, I immediately thought “Oh God, mommy died”. I went into a shock that had me numb for several years. I was furious at my family for not telling me she had terminal liver cancer, was released from the hospital to spend her last night(s) at home and giving me a chance to say goodbye (this was a time before hospices). As an adult, I asked relatives how they could do that to me. They told me they were all distressed and confused and followed a doctor’s advice to keep me naive and never talk about it. Not before and not after. As an adult, I have forgiven my family (and that doctor) for not knowing any better, but that disregard for me as a person had severe negative psychological impact for many years. I hope this leads to doctors and families treating children of dying parents with more sensitivity and respect.
31
The youngest in our family was about 10 when our father died. Afterwards he said that if he had known that Dad was dying he would have been nicer to him.
9
@w h mc Gee
Your comment breaks my heart.
5
"Her 9-year-old daughter told her, “Mom, you have to trust me with the information.” Her daughter also asked her not to hide things."
Truer words were never spoken.
I think the fear and pain parents feel is projected onto what they assume their child will feel. In the end, kids are often times underrated and underestimated when it comes to them handling the truth and being strong in the face of fear.
My dad refused to believe anything was wrong with my mom when she got sick and he refused to talk about it. My mother was too sick to have any conversations. I finally biked to her doctor's office on a Saturday morning and waited until his last patient left at 1 p.m. At first he did not want to tell me what was going on with my mother. I finally convinced him that I could handle the truth but could not handle the unknown. He believed me and told me everything. He immediately realized he had done the right thing.
Often times a child needs to hurt from the truth before they can ever begin to heal. Trust is crucial. If a child feels they have been lied to, even "out of love and not wanting to hurt them" it is difficult to trust down the road.
My mother used to always say, 'It's not what you say, but how you say something that really matters." The bottom line for me was to learn the truth so I could move forward rather than linger in a fantasy world that only existed in my head. I knew in my heart my mother was sick. My head just didn't know at the same time.
23
I am not 40, yet when my mother was diagnosed with ovarian cancer (she was in her early 30s, and I was in grade school at the time), no one told me or my siblings what was going on. No one seemed to take the time to explain what treatment would be like to my mother, either - she survived, but had a psychotic break while recovering from surgery and has never really gone back to what she was like before. Maybe, if everyone had been honest (at an age-appropriate level), we all would have weathered her recovery better.
16
My husband took unexpectedly ill in January and died six days later. The situation veered from clear to confusing and back again. Some hospital staff were honest, others were euphemistic or stated outright falsehood rather than be straight with me. This made it difficult to adequately prepare myself and our three children. I felt whipsawed. But at no time did I misrepresent the situation - as I understood it - to the three of them (in middle and high school). I had to express the gravity and the uncertainty, too; it was obvious how serious his condition was, as close friends and relatives arrived to spend time with him, and I was extremely upset.
It seems a different era in the hospital system. We faced no constraints in seeing him - no "visiting hours", no age restrictions. This helped immensely since I was able over those six days to bring each of the children to the hospital to offer my husband what comfort we could and for the children to participate in this difficult journey with the rest of us. When the end came, we spent two hours alone with my husband to accompany him.
I have worked with the school and the hospital to get grief counseling for the children, there is very little of this available and it's astonishing how misinformed or banal many of the comments made to my children have been, including by teachers and school officials. (This is my experience, maybe others have had better.)
34
@cathy, as someone who lost my husband to illness-but have no children-I can well imagine the comments and cluelessness your kids received in school, and I'm sure your experience isn't unusual. My heart sincerely goes out to you. Your intelligence and honesty will go a long, long way for your family's wellbeing.
12
I was diagnosed with Glioblastoma in July 2018 and will likely die from it this year, 2020 if I am lucky. I have been a full-time practicing psychiatrist for 25 years and am the full-time single mother to my two daughters. At the time of my diagnosis, my older daughter was in the process of moving out of state with her fiancé for work. My younger daughter has disabilities and the plan was for me to remain her care-taker indefinitely and finding an Independent living facility for her to go to after that. My older daughter has been fully aware of the severity of my diagnosis and my terminal prognosis from the beginning (although she doesn’t like to talk about it) but I did not tell my younger daughter right away. She had seen me get treated and survive a serious case of breast cancer 7 years prior and assumed I would get better from this too. When she came in my room one night to see if I knew John McCain had died, I knew I needed to tell her that I had the same thing. Since then, she has gone from being surly and difficult to being concerned and helpful while continuing daily life. My main worry is about the huge change in circumstances which awaits her—moving out of state to live with her dad and his family, leaving her life here, losing me. My tumor can progress quickly at any time so her life is likely to change in the same way. Having been honest with her has been so good for us— now we can talk about her fears, her sadness, our past together and her future.
78
@Joanrb,
Your comments deeply touched me. I will be thinking of you and your daughters for a very long time.
8
It's what I've been teaching young doctors (and preaching to older doctors) for decades: never (and I mean never), ever, lie to a patient or family (and especially not a child)!
Whatever sort of information you have should, and can, be delivered with tact, diplomacy, professionalism, and courtesy.
Hiding, or not telling, the truth always comes back to bite you.
36
When the mother was out of the room, the child asked the doctor, “How will I get through the ceiling when I go up to heaven?”
-------------------------------------------------------------------------------
I wish the article had told how the doctor answered that question.
25
@Ed that squeezed out a little sob from me as well.
8
I once stood alone at the hospital bedside of a man in his 60s who was dying of the same (recently diagnosed) cancer his beloved first wife had died of three years before.
His current wife and all their friends and relatives warned me sternly before my visit: "Do NOT tell him what he has. That would scare him. Just tell him he'll be fine!"
As I stood there, the man begged me: "Tell me what I've got! I know they're lying--please, don't you lie to me too!"
I was only 20 years old. I couldn't bring myself to go against so many older people, who surely knew what was best. My heart was screaming, "Tell him!" while my voice said, "I really don't know. I'm so sorry--if I knew anything I'd tell you. Everyone says you'll be fine."
That was in the days when few dared speak of cancer, even as the "The Big C." I really hope things will change very soon. My experience happened in 1968.
15
@MLChadwick yes there was still a huge terrible conspiracy of silence. I became a RN in 1980, when hospice was just starting in California, and thankfully much HAS changed.
6
@MLChadwick
How horrible for both of you. I’m guessing you learned and from then on you’ve honestly talked with your patients. If so, you’ve honored this patients memory.
1968 is later than I would have thought for this, thought the MD insistence on secrecy was ending in 50s. But very hard when the family is insisting and not honoring the loved one.
Thanks for sharing.
@MLChadwick
My 13 year old brother died in 1968 of a childhood cancer. Fifty-one years ago today.
He said to me ( then 17 years old) during one of his last days, “ I know I’m going to die”. I told him he would get better , not knowing of course, what to say.
I realize now how lonely he must have been, dying alone with the truth.
8
My nine month-old daughter died from cancer in October 2017, when my son was 2.5 years old. He'll be 4 next week. Knowing he would have to bear the pain of this kind of loss so early in his life was almost as devastating as anticipating my daughter's death.
In line with these recommendations, there are a number of guidelines that have helpfully informed how we talk to him about his sister's death: 1. Pediatric doses of the truth. We never lie, but what we tell him has and will change as he grows. He asks new questions all the time about her death, reflecting a deeper understanding and a need for more information. 2. Answer the question that is asked. There is no need to provide extra information, but we try to be as straight forward as possible. And 3. this is in an inoculation against inevitable future losses for him. If he can have this experience and know that he will not be alone with the sadness, anger, grief, and confusion, if he can rely on an internalized sense of being comforted and understood and not alone, then he will carry that with him for the rest of his life.
61
@Lysie
Your experience is tragic, but everything your say rings true. "Answer the question that is asked" is such great guidance for parents or others helping a child through losses. We tend to get wound up in our own feelings and fears and make things so complicated -- but the child may have a specific question that is not at all what we anticipate.
15
Kids read us very well. When I was diagnosed with cancer it took a couple of weeks for me to figure out how I felt and what we should tell our 8 year old daughter. She understood the possibility that I might die and was upset, but saw that we were calm (enough) about it. She looked at my bald head and said "At least you don't have any hair to lose."
28
@NIttles
Your daughter’s response made me smile. My mom had advanced stage breast cancer when I was 8 years old in the 1960s. No one ever told me why she had to go to the hospital, what her condition was or the effects of the radiation. It was the first time I had ever been separated from her, as well as from my dad and older brother. They thought it was a good idea to send me to relatives for her 2 week hospital stay.
The constant fear that I knew something was very wrong, but I didn’t know what it was, has scarred me. How I wish someone could have told me the truth. I felt so alone with my anxiety.
I wish you, your daughter and wife all the best
1
It was in October 1994 when my mother was diagnosed with liver cancer in its end stage. Chemo and radiation would have been nothing less than a few months of extreme pain with nothing but the end of life to show for it. She opted, instead, for pain management to ease herself to the end.
Before the diagnosis, I had flown out to Los Angeles from Connecticut to be with her not knowing what was ahead for both of us.
The oncologist arranged with Visiting Nurses Association to provide a hospice care nurse to our home. She was a God-send in those last two weeks as I struggled with losing my mother who was loved by me and all who knew her.
Then, one evening, a friend I have known since we were toddlers dropped by to visit her. I could hear them chatting and rejoicing in their walk on Memory Lane. All of a sudden there a burst of laughter followed by a crash followed by more raucus laughter from the two of them. I rushed to the bedroom where my friend was on the floor with a broken chair while the bedside table was overturned. Her medication was scattered everywhere.
And that was the last I heard of her lovely voice and it was my dear friend who gave me that great gift of hearing her laugh before she slipped into a coma overnight.
To this day, the grieving is tempered by the fact that the last thing I heard from my mother was her laughter. Now that is a gift that keeps on giving.
88
I had just turned 9 when my Nana died. Her bedroom was next to mine. She lay in a coma for quite a while before her death. It was confusing that she was delusional before her death. Perhaps I understood better since my mother's Seeing Eye dog died when I was 4. Madchen had been ill for some time. Her heart was failing. She was like a family member. "Why is Madchen's harness hanging in the cellar stairway?". My mother explained to me she could die if she became excited by hearing the harness buckles.. I understood my mother's grief...Madchen had guided her through the streets of New York City.
15
Madchen's remains lie buried in the woods in my blanket I offered.
7
My father was diagnosed with cancer when I was seven, and died when I was eight. That was a long time ago, when it was widely felt that children 'didn't understand' and should be 'protected' from the knowledge of bad things. So: I was not told that my father was dying, though obviously I knew he was very sick, since he spent months in hospital; I was not allowed to go to his funeral; and I certainly knew I shouldn't ask any questions -- or even talk about my father -- since that would only make my mother cry. I spent years thinking I'd 'caused' my father's death, because -- of all things -- he'd taken me skating and had fallen and bruised himself. Much worse: for years a small part of me thought he was still alive, and I'd see him someday, walking down the street. And worst of all, because I had been lied to by my family, I have ever since had the uneasy feeling that I couldn't totally trust reality. I don't fault my family -- they acted according to received opinion at the time. But I fervently hope that a changing view of children's interior lives will prevent a lot of turmoil.
99
@susan
You are a very sensitive and generous woman, Susan. I was moved on so many levels by your comment and also understanding certain aspects of your turmoil personally.
Both my parents are alive and my Dad is 93 in good health, my Mom is 86 and not doing well (emotionally). You forgive things that happened; the lies, secrets, manipulation, and worse because at some point you outgrow your parents fully and that some of these events were do to their own confusion and turmoil and just not knowing how damaging their actions were and are. I didn't then but now I see all these things as blessings to embrace and learn from. I raised both my kids totally different than they did and they are well adjusted and happy adults who strive to make the best lives that they can.
Just one example: our housekeeper got pregnant. I adored her. She was with us until the baby was born. I was 12 and I saw her stomach growing. I asked about it and was told she was getting "fat". I knew I wasn't being told the truth. It leads to loss of trust in others and in your own ability to judge correctly. This causes me a lot of pain but through it all I became a much better human being.
You thought you would see your father because they never let you say good-bye and grieve or speak about your feelings. You don't fault your family. You're too good. They listened to advice--not their own hearts and you paid for it in the end. He's gone a long time but somewhere inside he's fully alive--in you!
15
My 1st rule of parenting: don't lie to your kids, and don't hide information from them. This doesn't mean oversharing -- it means giving truthful information at a level that your children can understand and process and answering all their questions. Not knowing what's happening and knowing that people don't want to discuss it with you is the most anxiety-producing thing.
50
@klr
Well said, and correct.
4
@klr I totally agree. I also believe that one doesn't share information with a child if the outcome is unknown. A young child will understand that their father is sick and may look poorly but that is due to the treatment. When death is imminent or the child has directly asked if that parent is going to die, then it must be addressed.
I know someone who is very ill right now - Stage IV lung cancer. She's been unhealthy with other issues for years, so it's not odd to her children (grade school age) that she is ill. She is waiting to tell them that she is going to die until her doctors tell her that her time is very limited. I agree - no need for them to spend that last time with her while worrying about her. Sometimes, normalcy is very much needed. It's a very fine line...
6
@India My ex was told by his doctors a couple of weeks ago that his cancer treatment has not been working (post-surgery and chemo, the cancer has come back). We agreed that he would not say something right away since my daughter was in the middle of her college midterms.
4
Explaining the reality of death to a child also means explaining disease. The subjects of stigma and confidentiality are relevant. AIDS is not over. That people still die is rarely in the news. Even doctors still list other direct causes of death which can tend to make counting numbers bogus. Getting into care is easier said than done. Staying there is even more difficult. Some people have allergic responses to such antiretrovirals as Abacavir which can cause death all by itself. Extreme poverty also still exists.
Poor children see more death than most. They may become intimately acquainted with moral issues like the way we see sex work, addiction, and mental health. I deal with adolescents we call the Hard To Reach. They are hard to reach because there is often nothing left to reach for. We have talking sessions where disease, the process of dying, stigma, and the failure of public health (where they go to clinics) also gets discussed.
And grief.
Kids with significant grief issues often slide into a deep depression.
But one issue that dominates everything is pain.
Pain associated with HIV remains a medically controversial subject. Most doctors will tell you that HIV does not cause pain. If an HIV positive teenager articulates that they are in pain, the typical reaction is to assume they are lying. Especially if the adolescent is not white. It is an established scientific fact that adolescents of color receive less focus on pain.
"Will I die in pain."
Probably.
21
When my husband was diagnosed with terminal cancer our kids were still very young. The resource center at his hospital had an entire section devoted to parents in our situation. Paula Rauch's book "Raising an Emotionally Healthy Child when a Parent is Seriously Sick" was the best single resource there. I highly recomnend it. It, too, recommends openness, and goes further to explain what that can mean at different developmental stages.
We lost my husband, but the kids are emotionally healthy young adults now.
30
I was diagnosed with a life-threatening cancer when my kids were young adults, ages 25 and 22. Their father had died two years earlier. We all pretended that I would be fine, and eventually (miraculously) I was, but they must have known that I was facing long odds. Should I ask them now whether it would have been easier on them if I had presented a less optimistic picture to them? They're in their 30s now.
@cancerissofunny
15
@Ranger Yes. It's likely you will all learn something, and all of you will be the stronger for it.
8
My two sisters and I were all in our teens when our father was diagnosed with late stage cancer. One of the most difficult things about this time was everything that was left unspoken. Our parents never verbalized to us that this was most likely a terminal diagnosis. Even when our dad was getting sicker and sicker, the inevitable outcome was never discussed. There was so much anxiety that went along with this secrecy and false hope. I think back and wonder if it would have been easier to handle if we had been open and honest about the outlook from the get-go.
I have a lot of sympathy for my parents' situation during that time. How do you tell your children something so awful is in the horizon? As horrible as it may be, I believe that an honest and open approach can help kids to process grief, take advantage of living in the moment with loved ones, and begin healing.
26
Finally. Where was this awareness and sensitivity when my father was diagnosed with ALS 50 years ago (and died two years later)? Not being informed, not being included in planning for the changes our family would inevitably face caused serious damage to all of us siblings. It comes too late for me now, but I hope others will take heed and be more honest with their family members, b/c it's so very, very important in order to avoid compounding the damage caused by trauma and grief.
22
@rmeadMore than fifty years ago, when my father died and I was a kid, the doctor had told my mother to lie to my father about his diagnosis, and that involved concealing it from us too. The arrogant physician inferred from my father's anxiety about his condition that he could not take the truth, but what caused him and us real suffering was the set of lies. It was tragic for everyone involved. It seems that a very different concept of what was appropriate doctor communication prevailed then. My father was rightly anxious, because he was aware he was on the edge of death, with young children, and he was being actively deceived, by doctor's orders.
22
Even though we were all children once, we vastly underestimate children and their ability to handle tough information. It is harder on kids to try to navigate lies and secrets than it is to just know the truth. For children who are going to lose a parent, it is important to explain to them how they will be cared for after the parent is gone. They may harbor fears, like fear of abandonment, that grownups are unaware of. Be honest and answer their questions.
50
The eldest son of a family of four children whom I babysat (in my teens) in the 1960’s developed acute leukemia. Although his parents did not tell the children about the severity of his illness, he seems to have known. He asked me how he could let his parent know how much he appreciated their love and support — the way he asked seemed to me an indication that he knew he was dying.
36
As hackneyed as it sounds, bad things really do happen to good people. As Dr. Kelly has so poignantly explained, we all seem hardwired to find some "explanation" for horrific circumstances, and with children, one of the few ways they may explain this to themselves is to think that they are somehow at fault -- although this is the absolute furthest from the truth.
I am extremely lucky in that my family hasn't received such a dire diagnosis, at least yet. But my child did suffer from a chronic illness that kept her out of school for weeks at a time every year, and kept her in the hospital for more time than most people stay in their lifetimes. I don't pretend to understand Dr. Kelly's situation, or that of parents whose children suffer from a terminal illness.
But one lesson I did have to teach my child when she was younger was that she was not "at fault" for her illness, and she didn't do anything "to bring it on herself", or that her friends were better kids because they weren't ill.
Many of these messages seem so obvious to us as adults. But for children, especially those under ten, they aren't. They need reassurance that their illness just happened, and that they didn't do anything to cause it. Once the child understands that they and their illness are two different things, they can then join Mom and Dad as a partner in battling their condition.
Hoping for all the best for Dr. Kelly.
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If you don’t tell children honestly they are likely to think something they did was bad and it’s all their fault. You don’t want that.
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