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February 16, 2010 11:54 AM   Subscribe

How do I tell my family I am dying?

I am in my mid thirties with a terminal illness and two to three years left to live. I have a wife of fifteen years and a seven year old son. They know that I am ill and in a great deal of physical pain (although thankfully still in good spirits) but do not yet know how seriously. My wife has been dreading this and suspects it but my son only knows that I am in pain and that it is getting more difficult for me to do things with him. We have a close and loving relationship and spend a lot of time together. I sold my business both because it was too difficult to keep working and so that I would have more time for him and my wife.

I am not afraid of dying and have had a wonderful and very full life, and all things considered I am in good spirits and happy, but I feel terrible about leaving them and most of all feel like I am letting down my son. I have very few memories from that age, so I also worry that he will have no memories of me at all. I have tried talking to my doctors about this but am having trouble relating to them on the emotional and social aspects (and to be honest I feel deeply betrayed and let down by the healthcare system in general for a variety of reasons that are at this time beyond being of consequence), and I don't like talking about it to begin with because it's so unpleasant.

How do I talk to them about it? How do I even bring it up? Should I spend the remaining time doing normal things or should I travel with my family and have some grand adventure and "live" as much as we can? When the pain and physical and mental degradation become unbearable I want to speed up the process to limit my suffering (and theirs), and it is on this issue that I feel the most guilt and fear as to how to explain this to others (but of course I want to hold on as long as I can). I want to emphasize again that I feel like I am personally at terms with this situation, and am a happy person and that I am not depressed. I just don't know how to help others come to terms with it.

Any advice or personal experiences good or bad to help me understand the things I need to think about are appreciated.
posted by anonymous to Health & Fitness (61 answers total) 60 users marked this as a favorite
I'm very sorry to hear about your circumstance. I don't know that anybody can give you definitive answers, but your concern for your family and your clear-headedness speaks well of you.

I would tell, although I know this must be the most aweful thing in the world. I would tell because it would give them time to prepare, and give them the chance to make the most of the time they have left. I would tell because I am not on this journey alone, and have chosen companions, and I would prefer they know the destination, and when it arrives.

As to what you should do with the time you have left -- well, that seems the most personal decision of all, and I could not even imagine what I would do in thos circumstances, much less dare to suggest to you what you might do.
posted by Astro Zombie at 12:01 PM on February 16, 2010 [4 favorites]

There is an amazing novel that I think you should read called Gilead. It is, essentially, a very very long letter that a dying father writes to his young son. He knows that he will not be around as his son grows and matures, but he wants to impart to him the wisdom and lessons he's accrued in his own life. Apart from being a wonderful read, perhaps it will inspire you to write a similar letter to your own son.

I am very sorry you have received this diagnosis. I wish you the best for you and your family, and hope that you will be able to fully and joyfully enjoy the time you have with them.
posted by (Arsenio) Hall and (Warren) Oates at 12:08 PM on February 16, 2010 [8 favorites]

My father had a terminal illness and never told my mother about the severity of it, though he was also grappling with some pretty terrible depression at the time, too, which might have been why. Please tell them, and please make it clear to your seven-year-old what this means (my father died away from home when I was 8, and for years I dreamed/fantasized/had nightmares about him showing up again, or going to live with another family). This gives you time to make all of these things clear to your son. It sounds like everything you've written here is a good start.

He'll have memories of you, promise, but you can help by recording videos of yourself, or taking pictures, or writing him letters to be read later.
posted by PhoBWanKenobi at 12:10 PM on February 16, 2010 [5 favorites]

I can only imagine how very difficult this must be. I don't know how you should tell your family, but as for what to do with the time you have left: have you created a bucket list? I think something like this could be valuable, not so much for you, but for your family. Give your son some memories of you to really cherish. What that looks like will be different for everyone, of course, so find something uniquely special you can give to those you love. The memories you share together are the most lasting symbols of your love, so make them count.
posted by The Winsome Parker Lewis at 12:11 PM on February 16, 2010 [1 favorite]

What terrible news. I'm so sorry.

Your wife will have her memories of your happy life together, but your little boy might not remember much about his dad considering how young he is. Would it be possible to make video messages for him, say a new one for each upcoming birthday or major milestone (starting high school, graduating, getting married, etc.)? Or you could write a journal about yourself and how much you love your family, something for him to read when he gets older? Leaving behind something tangible for him that he can come back to repeatedly will be a great comfort to him, I think.

I would say, spend as much time as possible with your wife and son, and with the other people you care about. How you do this--travel, etc.--is up to you and your comfort/pain threshold.

Best of luck to you and your family through this time. And, of course, holler back at us if we can help with anything.
posted by orrnyereg at 12:13 PM on February 16, 2010 [3 favorites]

Your son is at a very important age. He is looking at the adults in his life for guidance on how he should be as an adult. He is looking for heros and role models. This is character building time. He needs a man of integrity and character right now.

Now that's not really advice on how you should walk this road, it's more just information for you to keep in mind when laying out your plans.
posted by Pollomacho at 12:15 PM on February 16, 2010

I'm so sorry about your diagnosis. I can't imagine how painful this must be for you.

I think that the most important thing you can do is to sit down with your wife and son (either separately or together) and tell them this: "I don't have much time left, but I want to spend it with the people I love most in the world, doing the things that make us happy." Tell them that you don't want to focus on your illness right now - you want them to have happy memories of your time together. And then make lists of the things that you want to do, experiences you want to share. Especially with your son - the memories that you can make with him now will last the rest of his life, and he will always be grateful that he grew up with memories of his father.

Make sure that you have your affairs in order - in terms of financial and estate work, this goes without saying. Do you have a living will? Your durable power of attorney? Make sure that your wishes are documented, and that the records are kept by more than one person. Talk to your doctor about what it means to you to die with dignity. Purchase, if you wish, a burial plan so that this isn't something your wife has to deal with when the time comes.

One final anecdote: I have a friend whose father passed away from ALS. He didn't have a lot of time to prepare, and very little time to spend with his family. His children were mostly grown at the time of his diagnosis, and he made every effort to live life to the fullest until he couldn't anymore. The last year of his illness was, as you can imagine, very hard on his family. His final gift to them was a surprise trip to Barbados, a couple of months after he passed away. They treated it as his final good-bye. The first evening they were there, they held a small memorial service and spread his ashes. They spent the rest of the week having fun together, and said that it was the best thing he could have done to help them move forward.
posted by honeybee413 at 12:19 PM on February 16, 2010 [2 favorites]

I just lost my father to a terminal illness last April. It's a terrible, awesome (in the Big sort of way) experience, and it's not one to avoid. You need to tell them. They need to know. This way your wife can do whatever she can do with your help NOW to prepare financially and somewhat emotionally for life without you. Also, this way you can enlist the help of a hospice, who can ensure your family has support as there are two grief cycles to go through - the one with you present, and the one after you have passed. They will know your wishes, be able to talk about what you want for funeral arrangements, because figuring that out for a loved one post-humously is a special kind of hell, and so they can get used to just talking about it.

Your children may surprise and amaze you. Kids under 12 can grasp concepts that adults just refuse to.
posted by medea42 at 12:21 PM on February 16, 2010 [3 favorites]

My condolances to you and your family.

I don't know a thing about your religious beliefs, but this is exactly the sort of thing that many people find religion to be best at: matters of life and death. So if you've got that in your background, now's probably the time to start looking there. I'd second Gilead as a fantastic engagement with this issue, but recognize that it's coming from an explicitly and self-consciously Christian perspective, which can be a good or bad thing depending on what you happen to think about that.

Either way, it sounds like you're going to be looking for some kind of palliative and/or hospice care in the immediate near future. These providers will not only have a lot of experience and resources for you, they'll also know who in your community handles these sorts of issues. There are a lot of non-profits in most even moderate sized communities that spring up around hospitals and cater to the needs of those with sick or dying loved ones. These groups can either be dedicated to your specific condition--cancer sufferers probably have the best luck there--or just more generally for any family experiencing this kind of loss. They exist to help you and your family deal not only with the emotional and psychological issues which go along with losing a member of the family but also to help them deal with the unpleasant but unavoidable logistical issues which no one really wants to think about.

I bring these groups up in particular because you said you've talked to your doctors about this, and they haven't been terribly helpful. Well, my father is a physician, and I grew up hearing about hospitals and the health care system every day, but I only learned about the existence of these organizations a few years ago, when my mother started working with one of them. Physicians don't always have the best connections there; you may find that nurses and staff assistants may be of more help.

As far as "speeding things up," there are a number of options, not all of which may be legal in your jurisdiction. This is definitely something you want to talk to your doctors and family about. It could be something as simple as choosing not to go for that next round of treatment, or signing a DNR order, or refusing intubation, any number of different things. Most physicians and health care providers are completely on board with these measures and can explain how they work to you and your family. It's probably as simple as setting up an appointment to talk about it. But actively hastening death may not be something you'll find much support for, and you'll want to broach that subject carefully, if at all.
posted by valkyryn at 12:22 PM on February 16, 2010 [1 favorite]

How do I talk to them about it?

You should tell your wife first and your son soon after. Your wife may want to help choose how to tell your son, or you could decide that yourself.

Go somewhere you and your wife can be alone, a walk by the river maybe. Sit down, with her, then tell her. Mid-morning would be a good time, an hour or two after eating brunch perhaps. Take plenty of something to dry tears.

I had to break similar news last month, and it's very hard. When she hears, your wife will need time to cry, and probably won't want to eat or be with people for a while, so choose a time and place where she won't need to do those things.

Before telling your wife, make plans for some cool things to do together as a family in the immediate future, so there's something else for your wife and son to think about besides your death. Preferably plan several things to do over the next few months.

I wish the best for you and your family.
posted by anadem at 12:23 PM on February 16, 2010 [6 favorites]

Best of happiness every day to you. Tell them soon, knowing that such a revelation is seldom a one-time event. Some who have revealed their final exit plans have been thwarted, something to keep in mind before making further public statements.

My friend who had a few months between diagnosis and death taught me telling friends and family then living as one can after us good. Not working a great choice. Less time online always a good choice. You're doing fine.
posted by eccnineten at 12:25 PM on February 16, 2010 [2 favorites]

Some of my positive memories of my parents have been when they shared their own interests with me. If you've some skill or hobby you can share with your son, he'll hopefully end up with memories as well as skills or knowledge of his own which will be a living legacy. Even if he doesn't end up sharing your enthusiasm for the particular topic, it will be something of you he can keep. Especially if you also leave him your related tools or books or paraphenalia.
posted by emilyw at 12:30 PM on February 16, 2010 [1 favorite]

this is exactly the sort of thing that many people find religion to be best at: matters of life and death

That's essentially what I was going to say. You might consider approaching some local congregations—a priest, a rabbi, etc. I'm not suggesting this because of the "religious" component. You can have a purely secular conversation with these people. But you mentioned that you have had trouble turning to your doctors for advice on this subject, and it occurs to me that priests, rabbis, etc. might be an option worth trying—again, not for "religion," but just because they might have some very good ideas about how to talk with your family about this.
posted by cribcage at 12:30 PM on February 16, 2010

What a difficult thing.
If my husband was in your situation, I think I would want to know as soon as possible. Would it work to have your son spend a couple days with family, spend time alone with your wife (special weekend) to tell her and process it together, then work out a way to tell your son a little later?
Making videos or writing letters for your son would probably be so appreciated when he's older.
It sounds like you're very levelheaded and considerate, and I bet that will help your family a lot. Best of luck to you.
posted by pseudostrabismus at 12:33 PM on February 16, 2010

most of all feel like I am letting down my son. I have very few memories from that age, so I also worry that he will have no memories of me at all.

Every child is different, every childhood is different. I have very vivid, fond memories of time spent with my father (still alive) from ages 4-7. Even if I don't remember many specific days or anecdotes, I remember the feelings from them: love, laughter, happiness. These are the years when you can plant the seeds of love (wince, but you know what I mean) that will last his entire life. He's going to be fine.
posted by availablelight at 12:33 PM on February 16, 2010

Also, I'm pretty sure your son will remember you! I remember age 7 with very sharp clarity- even down to clothing I wore and conversations I had with my parents. And you still have years ahead of you to form even more memories.
posted by pseudostrabismus at 12:35 PM on February 16, 2010 [2 favorites]

I am so very sorry about this. You should tell them, and in a way that your son will really understand. My mom lost her 7 year long battle with cancer when I was 9 years old, and no one had told me that she was going to die and the fact that I never knew it was coming when it was apparently very obvious to everyone else is something that bothers and haunts me to this day. I get so angry whenever people mention how they knew it was going to be her last Christmas/Thanksgiving/etc. I mean, maybe I wouldn't have understood, but I never had the chance.

Your family knows you don't want to leave them.

Your son WILL have memories of you, but like with all memories, over time they become less clear and less frequent. You, like my mother, have a wonderful opportunity to do things with your son and for your son that will help him remember and have tokens on the times you spent together.

What my mom did, which I cherish to this day, was to leave me audio recordings of the stories she used to tell me of her life growing up. I always loved hearing her tell me about when she used to live in Hawaii or of just silly, fun things that happened to her in her life. And she left me her diaries and scrapbooks and writing projects and travel journals. And personal letters to me, that she had apparently written before each surgery in case she didn't make it out.

Throughout my life, especially as a teenager, I treasured these letters and mementos and just really knowing how much my mom had wanted to continue to be there for me. And, I guess I really wish I had somehow known that at the time in some way, so I could really have said goodbye.

So, I'm probably rambling a little, but just share as much as you can with your son -- stories of good times and your life, your favorite books and movies for when he's older to appreciate them, and leave recordings or letters if you can do so.
posted by tastybrains at 12:39 PM on February 16, 2010 [23 favorites]

Your doctor or a local funeral home should be able to direct you to a good grief counsellor. That person should be able to help you find the words to talk to your family. As far as your son goes, keep a diary for him of your day to day interactions with him, your thoughts and and feelings about him, the minutae of your life together. This will be a keepsake for him and will help him fix his memories in place, and give him a sense of who his father was and what your relationship was like. And how much you loved him.
posted by ThatCanadianGirl at 12:48 PM on February 16, 2010 [1 favorite]

I'm really sorry to hear this. Best wishes to you and your family.

My grandfather died of ALS when I was eight years old. My fondest memories of him are, honestly, him teaching me how to play different card games, even when he was unable to do much out of bed. You don't have to make a lot of grand gestures to give your family wonderful memories.
posted by roomthreeseventeen at 12:52 PM on February 16, 2010 [1 favorite]

i'm so so so sorry to hear this. you sound like a good person, one that a son shouldn't have to grow up without.

randy paush's last lecture book really struck me to the core. it's a book that changed my life. he had a similar attitude towards his diagnosis that you do with yours. he wrote it for his children after learning he didn't have much time left. if i ever found out i had little time left i'd do something similar for my children with as many videos, audio recordings, etc as possible for all those moments i'd want to be there for- birthdays, rites of passage, etc.

please, please, PLEASE let your wife, son, and family know. my mother didn't know her brother's lung cancer was terminal or that he had as little time left as he did. she remains haunted by it to this day.
posted by raw sugar at 12:58 PM on February 16, 2010 [2 favorites]

I can't really imagine how complex this must be to try to think through, although it sounds like you're actually doing pretty well at it. I agree with all those here who have said that the quality of your interactions with you son, to date and in the future, will likely leave him with good memories of you.

I don't have specific advice for how to tell her, but I don't think you should try to answer the question about how to tell your son before talking to her in depth about it. She will want to know this (even if she, obviously, doesn't want to hear this), and she will be able to help you formulate your family plan for dealing with the news.

Best of luck.
posted by OmieWise at 12:59 PM on February 16, 2010

I'm so sorry. My parents were killed instantly in a shelling in the middle of a war. The one thing I wish for more than anything else is that I would have known in advance (though that would have been impossible), if for no other reason than to be able to ask them some questions. So I'm for telling your family as soon as possible, so that you can help both of them prepare and so that they can better appreciate the time you have together. Not that they don't now . . . but as people we do tend to lose sight of the bigger picture in light of day-to-day living.

Also, please also document "yourself" for your little boy. I was a teenager when my parents were killed and never much considered who they'd been before they were my parents. I wish I'd known about their courtship and their childhood, their dreams and the things that interested them more - books, movies, music. My father told many jokes; now I can only remember a few. It would have been so nice to have his sense of humor on video, because now I only have a couple of weak memories of that. I'll never be able to cook some of my favorite foods, because my mother isn't around to show me how. Most people will lose their parents at some point, but most people will have had a decent chance to gather all the family "lore" as adults. I feel cheated that I couldn't do this; more than anything it's what causes me pain.
posted by Dee Xtrovert at 1:00 PM on February 16, 2010 [23 favorites]

The Hospice organization in my area has a campaign right now that says, "It's never too early for hospice." They can help you get your affairs in order at whatever speed you like, and they should have some good resources for you and your family.

The video messages are great, but in addition to telling stories about yourself and your life, remember to tell stories about the things other people have told you. What did your parents and grandparents teach you, and how did they do it? How did you react to some of the major people and events in history?

Maybe you could start a journal or blog to write in whenever something strikes you. I really love Roger Ebert's posts (as linked, to some degree, on the blue today), and I imagine (sadly) that he is on a similar timetable. You'll find that, like him, you start with one thing, progress to other larger moments, and fill in the gaps one by one with reminiscences that you're only now realizing meant a lot to you.

I'm so sorry that you're going through this, and I wish you all the best.
posted by Madamina at 1:02 PM on February 16, 2010 [3 favorites]

I'm so sorry. I can't imagine what you're going through. I'm sure it was difficult just posting this question.

You have to tell your wife soon. It's nice of people to put this in terms of what she would want. But this is beyond personal whims. You have to go through this together. She's your spouse -- it's her obligation to you to help you through this time. You owe it to yourself to get as much support as you can from your family -- for yourself. You matter, and this is about you. There's no point in trying to be purely selfless. I say this from experience dealing with a family member who had cancer and died: we always wanted to know whatever we could do to help. We didn't want her to hide any information from us that could help us make things easier for her. If we had even a vague sense that she was uncomfortable in some way, we would insist that she clarify the exact situation to us. This wasn't because we necessarily wanted to hear it, but because we needed to know. The last thing we wanted was for her to be selfless. You can assume that if your wife knew you're struggling with this right now, she would insist on having a full and accurate picture of the situation so that she could help you, be there for you, and have plenty of time to process the situation and make whatever necessary arrangements have to be made.

Your wife should hear before your son does. It will be traumatic for both of them, but it will be easier for both of them if your son doesn't have to witness his mom going through that. Also, you and your wife can then work together to come up with a good way to tell your son. Telling your wife is relatively straightforward: she's an adult, and she's going to have to hear some very sad news soon, and it'll be really hard, but she'll deal with it. Telling your son is more sensitive and complicated. I can't tell you how to do that, but I'm sure you'll figure out a way together.

And I can tell you this, in response to your concern that "he will have no memories of me at all." I still remember my teachers from elementary school, going back to first grade. I remember students from those classes who didn't continue to be my classmates in later years. I recently watched some home videos of me and my family from when I was 5 years old, and it's uncanny how this makes it feel like it all happened just yesterday. I remember family members who died when I was younger than 10 -- I don't remember them well, but I have a few specific memories. And I only saw those family members about once a year. If I had seen them on a regular basis, along with being able to look at photos and videos that were deliberately taken knowing what was going to happen, I am sure my memories of them would be full, rich, and vivid. Your son will always remember you.
posted by Jaltcoh at 1:03 PM on February 16, 2010 [2 favorites]

Speaking as someone who lost his dad at a young age, man alive what I wouldn't give for some journals, letters, something, that was in my dad's voice. It'll be 27 years soon, and I hate to say it, but the void is still there at times. I wish I knew better who he was as a man, and I'm thinking that letters written to your son, about who you are, would be an incredible resource for him as he becomes a man himself.

I also echo others who say that he WILL remember you, but given his age and emotional maturity, how well he might KNOW the man you are might be uncertain.

Video seems a little dramatic to me, but that could just be my feelings. But letters, entrusted to someone who can keep them safe, to be delivered as he's old enough to appreciate what he might, I really can't imagine how valuable those might seem to him. I'm having a hard time just thinking about it, with my history.

I am so sorry to read this. It's a terrible thing to face, and I applaud your efforts. Please do tell your wife soon though. To be honest, I'm not sure you need to tell your son before it's evident, but your wife, as soon as you can, I'd say.
posted by Richat at 1:09 PM on February 16, 2010 [1 favorite]

My father died when I was 17. His illness (heart disease) came upon him fairly quickly, but I'm pretty sure he knew things were not good at least a year before he died, and kept it from us because he didn't want us to worry. Or maybe he just couldn't bear to tell us.

So, when he died it was a complete surprise. "Surprise" really doesn't begin to do justice to the supernova of pain I felt I was going through -- "cataclysm" might be a better word. It completely took the wind out of me, and to this day I think that his death was the defining moment in my life. I was so bewildered and confused that the next few years (critically important years) were spent in a sort of daze. Nothing made any sense at all.

I can't imagine (begin myself now a father of a seven year old and a four year old) how difficult it would have been for my dad to have the first talk with us about his situation but I wish, WISH, he would have done so. An HTML text box is completely inadequate for me to express how deeply I wish this. I think it would have been enormously helpful to me in getting over his death, a process which, given the way my heart has been racing while writing this, I haven't completed more than twenty years later.

Now, I was 17 and your kid is seven, and I don't know how well my experience would translate into your situation. For whatever it's worth, though, I encourage you to not try to spare them now, but to trust them.

As for how, specifically, you do this: I have no idea and I don't think it matters much. I would, personally, not want any third party "grief counselors" involved, but would rather just have everything out in the clear and let things happen as they will.

Good luck.
posted by lex mercatoria at 1:10 PM on February 16, 2010 [6 favorites]

My own father is facing a potentially terminal illness right now. He and my mom called me (and the other siblings) the moment they knew what was happening.

It was incredibly hard to hear, and actually, I am unable to hold back tears as I write this, understanding for the first time, for example, that should I ever have children, chances are very good that they will never know their grandfather. I've never even seriously considered having kids, but the Big Implications come out and brutalize you in these times. I have been mostly unable to perform basic life-duties since I found out (yes, getting better with time).

My advice to you is to do what my father did. Although he has been mostly positive -- ("enjoying these good days") he says a lot in conversation -- it is clear that this is a really dark time. Being privileged to know what is happening meant a lot to me. I hope that, if things get worse, he also feels OK with talking about the darker side of things with me, his eldest son. Or that he feels OK expressing these things in some way after the fact, in a video, or in a letter. Dads can teach you about how to deal with the dark, sometimes only by expressing fear themselves.

Some years ago my Dad faced death a different way, after serious heart problems. Once, while driving in Montana, everyone in the car was asleep but the two of us. We spoke about it for the first time, and I asked him for an ideal outcome. He told me "I would die in my sleep". We had a long silence, watching mountains in the distance. Though it sounds harsh, actually, the knowledge that my father had accepted death and didn't want long suffering helped me understand him as a man. We have now had similar conversations regarding the absurd brutalizing of his body by the medical establishment. He told me that some things "aren't living", and I agree. The knowledge that my Dad doesn't want to "live" at all costs as a bag of flesh hooked up to a machine feels like a guiding principle in a time where I otherwise have no control whatsoever, and it feels like some relief from the insanely painful images I sometimes imagine of him out of control of his body and mind, dehumanized and emasculated.

When my grandfather died I learned that I was much like him through some old letters that a family member sent to me. He, an artist and tinkerer, would be so fucking proud of me. It makes me sick that it was the only way I could get to know him at that point. A video, the sound of his voice, pictures... anything. I would take anything I could get, to learn from that man. My Dad once told me that my Grandpa always wanted a lathe, and that now he wishes he'd just given him one so he could work on it. In a similar way, I hope to fulfill some of my Dad's dreams -- one to go crabbing on the Oregon coast with his boys, another, too personal to reasonably share here. Why leave such wishes unfulfilled?

Please take some time and make videos of yourself telling stories and offering up specific life advice (or better, stories about things that happened in your life at that age, and include bad things and what they meant to you) for your son at different times of his life. Pay for copies of them to be stored in several locations, in several formats. Also make videos of yourself interacting normally with him now, while you are healthy. This way, the sound of your voice, the emotion in your face, and your deep, unerring love for him, as well as your stand-up embracement of your oncoming death, will be the fullest and most complete fatherly love and guidance he can rely on when he can no longer rely on you in person.
posted by fake at 1:17 PM on February 16, 2010 [10 favorites]

I am very sorry to hear about your illness. I have two thoughts that may (I hope) help with your concerns for its impact on your family.

#1 - Randy Pausch from Carnegie Mellon University passed away at the age of 47. If you have not watched his Last Lecture video you may want to consider doing so. He is on record as saying that the videos and the book he wrote were *not* for his audience and readers, but for his very young children. His video on Achieving Your Childhood Dreams is something I wish was around when my kids were young, it speaks strongly to what we are on this planet to do.

#2 - Up until a few years ago I had little idea of what the word "hospice" really meant. I thought it was a building, like a hospital. After a family member began working at one I now realize that it is not so much a building as an organization that tries to help those who are terminally ill in a certain region (yes- there are also insurance considerations). A good hospice organization will seek to support the individual in a variety of ways. There is an unfortunate tendency to push off hospice to the last possible week or day at which point it is difficult to gain the benefits that could be received from planning, counseling and respite for the family. You might want to consider what a hospice may be able to help you with, and to inquire with friends if they know of a *good* hospice serving your area.
posted by forthright at 1:18 PM on February 16, 2010 [3 favorites]

I am so, so sorry. That sucks so bad. Love and light to you and yours.

I have a friend who died of liver cancer, leaving behind a two-year-old and a five-year-old. She had much less time than you; I think she was less than three weeks between diagnosis and death. The situations aren't parallel, but they're close enough for this to possibly be useful.

She hired a photographer and a journalist. The photographer shot over a thousand photographs over the course of three days, of her playing with her kids, cooking pancakes, brushing her daughter's hair, cuddling with her husband, etc. Three intensely normal days. The journalist interviewed her extensively for her life story, and assisted her in writing letters to her children, to be opened on every birthday until age 18, then 21, 25, 30, 35, 40, and 50. That way, she could continue to be a presence in her kids' lives, even after her death.

Please do tell your wife as soon as possible. Two books which may be helpful in talking with your son are Gentle Willow and Water Bugs and Dragonflies. I've not read either book, but both of them were on the wish list for Seattle Children's Hospital and they both come highly recommended.
posted by KathrynT at 1:36 PM on February 16, 2010 [31 favorites]

I wish you and your family a lot of strength.

One day your son will want to know who his dad really was. How he grew up, what made him tick, what important and valuable things he learnt in life, what he thinks about love and what he thinks about becoming a man. Maybe you can write him letters for his birthdays, that he can read as he grows up, about the things that become important to him as time goes by.
posted by Omnomnom at 1:44 PM on February 16, 2010 [1 favorite]

Tell them ASAP. If better healthcare could help, you should look into moving abroad, maybe your wife could find a job in Canada or Europe, like say teaching english? Did you ask about treating the pain? Marijuana is legal in many countries like Spain provided you grow it yourself.
posted by jeffburdges at 1:57 PM on February 16, 2010

Contact Hospice. You aren't ready for their services yet, but they specialize in this. There's no easy way. You could have a late dinner with your wife, tell her how much you love her, then tell her how very much you're going to miss getting old with her.

Please do keep a journal for your son, and put away some notes and keepsakes. My dad died suddenly when my brother was @10; I was 20. Yeah, it was really rotten. Having any kind of special remembrance would have been very good.

I wish you the best.
posted by theora55 at 2:07 PM on February 16, 2010

You need to start talking to your wife now about this so she will have time to process the news, later on you can tell her in more detail about your end of life wishes (but do put something in writing now where it will be accessible to her in case things get to this point sooner rather than later)

I was asked to sign a DNR for my husband while he was unconscious, it is a very hard decision to make when you don't know what your spouse would have wanted.

I don't know if there is much you personally can do to help others come to terms with the situation other than telling them so they can start moving through that process. Keeping it from them will only make it more difficult for them. If you die without telling them that it's coming you won't be around to see their pain, but they will.

Should I spend the remaining time doing normal things or should I travel with my family and have some grand adventure and "live" as much as we can?

Depends on what you and your family want to do. Normal things are "living" too.
posted by yohko at 2:07 PM on February 16, 2010

Agree that telling your wife first and then telling your son in a way you have both discussed is the best route. Also appreciated Randy Pausch's last lecture on YouTube. He also spoke at a graduation and on various talk shows.
Another thing that may bring comfort, is to contact your pastor. They are usually trained to help families and individuals deal with these difficulties and to be ready for the next world.
If you don't have a pastor, Chuck Swindoll, the former president of Dallas Theological Seminary is a big-hearted, loving guy. He is pastor of Stonebriar Community Church and would probably be glad to help you.
I lost a baby and our church family brought meals, babysat for the other kids when it was needed and helped out in various ways. I found much comfort knowing she was in the arms of God, even though my own felt incredibly empty.
You are obviously a kind, unselfish man. Please feel free to memail me if there is anything I can do. Not sure where you are. I am in South Carolina.
posted by srbrunson at 2:15 PM on February 16, 2010

My grandfather died a couple of years ago from a slow growing cancer. Our situation was rather different since I was with him when he got his diagnosis...

The following may or may not be useful to you.

The only person he told (besides me) was my brother. He was at home when we got home from the doctor and asked how things went. It was as simple as that. I'm not sure that either of us could have told him under any other situation. I know I'm drawing conclusions about you that I shouldn't, but if I was you I'd tell my wife through a white lie - go see my doctor again, but make sure she knows it could be serious. When I came back she'd ask how it went... then tell her the news I already knew.

It sucks, but it has to be done. She has to know and you can then tackle telling others together.

The greatest thing that my grandfather did in the 3 years he had left was write a memoir of sorts that told my brother and I so much about his life that we wouldn't have otherwise known.

As for going out and living life... I don't know. It sounds like you are already pretty much at peace with your future. If there are things that you want to do, I suggest doing them, but I personally wouldn't want to go off and burn up my time doing everything and anything just for the hell of it. Make your time count - with your family and your friends - but I know that I wouldn't want to end up burning through all of our savings and leaving my family in the lurch after I went.

On more depressing notes (if you see what I mean) draw up a living will. Make sure that people know what treatments you want and which you don't. And make sure that the doctors give you all your options. My grandfather was encouraged to think about a radical surgery that would have given him another year, but which would have made him bed bound for half of it, whereas no treatment left him pretty much the man he always was until a couple of weeks before he died.

Take care of yourself, and don't be scared to ask people for help if you need it. It will make you feel better and means they won't worry that they didn't do enough...
posted by sodium lights the horizon at 2:15 PM on February 16, 2010

My father died unexpectedly (heart attack) when I was a junior in college. My mother was absolutely unprepared and the family finances were in serious disarray, by which I mean my father didn't gather up important papers to be sure my mother had access to information she needed and so on. In addition to the enormity of her loss and mine, she had to put her finances in order over the period immediately around Christmas, with taxes and my college tuition due in days. When you tell your wife, and you should, the two of you will need to be sure all your legal and financial affairs are ready so she doesn't end up with that burden at a time when she's already emotionally devastated.

Apart from that I can only second the previous comments about leaving things for your son so that he can know the man who was his father. I found out things I never knew about my dad after he died and I wish I'd been able to ask him about them when he was alive.

I wish you and your family the best in this trying time.
posted by immlass at 2:21 PM on February 16, 2010

I'm so sorry you have to go through this. My husband died four years after his diagnosis; his surgeon told me his diagnosis while my husband was still coming out of anesthesia, so i was the first to know. Your wife doesn't want to know this but she needs to know, and so does your son. What you're giving them is time. There is no easy way to have these conversations.

You should work out with your wife practical things, legal and financial; she will appreciate this stuff later. Personally I would not plan a grand adventure; I think that puts too much pressure on everybody. I would just spend a lot of time with them, doing simple things, talking, playing, maybe some traveling. My husband chose to keep doing everything as normally as possible until he couldn't anymore.

My heart goes out to you and your family.
posted by violette at 2:41 PM on February 16, 2010

I lost my mom at eleven and was going to write basically the same suggestion as Omnomnom. When you lose a parent at a young age you never get to know them as anything other than the parent of a young child. From my own experience, letters for your son to open on major milestones that talk about what you were like at these points in your own life would be very much appreciated as he grows up.

On the more day to day stuff, tell your family soon and talk often. Be honest with your loved ones. Big trips aren't necessary but spending as much quality time as you can with each other is.
posted by a22lamia at 2:41 PM on February 16, 2010

Thank you so much for sharing this. If I can add anything to what people have already said, it's this: I've seen that people really do treasure things written or recorded by someone who's died, especially if it's honest and in their own voice. I know I love to have this nautical diary my great uncle left behind. It's something I can use to kind of re-construct him, in his glory and faults.

And yes, I think you should do special things with your son. But (judging from my perspective as father to a 4.5-year old) I don't think that special necessarily means something an adult would find impressive -- climbing kilimanjaro, or meeting the dali lama, or visiting every ballpark. A lot of little things could be better for a 7-year old, or maybe some creative project you can work on together. Not sure what kind of projects you are interested in, but building a soap box racer comes to mind for me. :)
posted by martin2000 at 2:52 PM on February 16, 2010

My father died when I was 22. His illness was protracted, difficult, and compounded his depression, paranoia, and anxiety. It was an exhausting time for both my mother and I, emotionally and physically. He took me aside when I was 11, told me he was going to die before I turned 15. He didn't, much to his surprise and mine, but he continued to not make an effort to plan ahead, to do things together, to let me become a teenager, and then an independent adult. I fought him over it, bitterly, and I'm sure he resented my desire to not cater my every waking moment to the fact that my father was dying.

That? Is the wrong approach. It left me frightened as a child and rebellious as a young adult. Counseling helped me prepare for my father's death in a constructive manner, distancing what I thought were my shortcomings and obligations to him from our relationship. We reconciled and reconnected before he died. We talked about our lives, what had made us so scared of losing each other that it had preemptively torn us apart.

My mother died, suddenly, unexpectedly, devastatingly, nine months later. I would give anything, anything, to have had a chance to know. To better spend those last months together, to ask her everything about her life before me, my childhood, her love for my father, her feelings when she first held me in her arms. Anything. I would give anything to have been given the chance to tell her how proud I was of her, how much she had been my rock, my soul, my love, my everything.

I didn't. I was too busy, too confident in her presence, too shocked at how okay I was with my father's death, how much of a relief and a release it had been. I regret it every day of my life.

Tell your wife. Tell your son. Cherish them, go on mundane and grand adventures with them. Talk. Stay positive. Love them and let them love you in return.
posted by lydhre at 3:14 PM on February 16, 2010 [1 favorite]

My sincere sympathies to you.

I'm blessed that both my parents are still living, but I have loss all four of my grandparents. Of those four, one of my grandfathers over a period of time sat down and simply recording a history of his life. I recently transferred them from cassette tape to audio cd. I have a six disc cd player in my car and the last two slots have belonged to two cds of my granddad since I made them. It's a beautiful thing for me, especially when I'm on a 12 hour road trip to hit a button and hear my granddad suddenly say, "Hello, Grandkids!" Later on, I discovered dozens of letters he'd written home to his future wife during the War.

Needless to say, these are among my most prized possessions.

if your time and health allow, when you're not spending time with your wife and son, then I heartily endorse the suggestions above of doing some videos of yourself talking, or writing letters. A photograph can capture a person, but they can come alive when you read their words or listen to them tell you a story about themselves. These are things your son and his children will cherish.
posted by Atreides at 3:23 PM on February 16, 2010 [1 favorite]

"Also, please also document "yourself" for your little boy. I was a teenager when my parents were killed and never much considered who they'd been before they were my parents. I wish I'd known about their courtship and their childhood, their dreams and the things that interested them more - books, movies, music."

Dee Xtrovert said it so much better than I did. Small children don't think of their parents so much as people and as a teenager and young adult it's when you start to really wonder what your parent was like. I loved reading my mom's diaries and scrapbook and travel journals and stuff, because it gave me hints as to what she had liked and been interested in. I loved finding out what her favorite movies had been and favorite vacations and books and hobbies. So, the more of these things you can leave for your son, the better. It's incredible to have the heartfelt letters and experiences, but it's often sometimes just warm and reassuring to just have a copy of your parent's favorite movie when you are feeling lonely -- watching it can almost feel like you have some kind of connection to them, even if they aren't there anymore.
posted by tastybrains at 3:27 PM on February 16, 2010 [1 favorite]

How sad to read this. I am so sorry for you and your family. There are many very good suggestions here, especially the ones about writing letters and taking pictures and videos. I would emphasize taking pictures/videos of the two/three of you TOGETHER.

I lost my father to a car wreck only 3 days after my 9th birthday. It was many many years ago, before today's technology made the documenting of lives so easy. I have only a few pictures of him and only one, just ONE, picture of the two of us together. My memory of him is very minimal and almost entirely based on stories told to me by my mom (also gone now) or older brother. The only recording I have of his voice is an old (reel to reel) tape of him giving a speech at a convention.

So please, don't take it for granted that your son will remember all that you want him to. Write letters, take pictures/videos, and document your entire life for those you leave behind. They will cherish them, I promise.
posted by ourroute at 4:01 PM on February 16, 2010

My heart goes out to you. This question brings back so many memories of my father who died on the verge of my thirteenth birthday. There is not a day that I do not think of him. For what it's worth, here's what I often think about.

My father had already been through so much that we never expected him to pass away on the operating table. When he did die, it just hit me like a hammer. Even now I'm bawling like a baby just thinking about it typing this out in the hope that someway I can help you.

I have no idea whether you should broach the topic with your seven year old son. That I cannot weigh in on. Looking back now, I wish my mom and dad had better prepared me for the possibility he was going to die, but that's from the perspective and understanding of a twenty-seven year old. I have no idea what it would be like to be seven and have such a discussion.

This may sound hokey, but please record your life and memories for your son. There are so many, many questions I would given anything to ask my dad. He was in law enforcement for thirty-two years. Why? Was it because he watched Gene Autry as a kid? What were his funniest stories? Why did he root for the Yankees when he had the Cardinals in his backyard? What did he think the first time he met my mom? Did he have any stories about his grandparents? What was it like growing up in the 1940s and 1950s? Why was his family hardcore Democrats?

We had a video camera but we hardly ever took any family videos except on Christmas. I get so scared that something will happen to the tapes and I will forever lose hearing his voice, his laugh, his smile, his mannerisms. Please, please tape your funny stories, how you met your wife, why you chose your profession, your favorite songs, movies, books, college courses, who influenced your life, and so on. Write letters, take photos. I remember reading about one woman who left a tape, a letter, and a birthday gift for her daughter to be opened every year up until her twenties. Just turn on the video camera and talk about anything and everything if nothing else.

Another thing is that we only had time for one family vacation when I was growing up. It was a slapdash trip out West, but I am ever so grateful that I got to go with my parents. Someday I plan on taking my kids to the same places and showing them the mountain passes and clear Colorado streams that fascinated my father. It might be worthwhile to take a grand trip somewhere and take tons of photos.

And yet, it was the days on our farm that I come back to the most. Just the most simple days and experiences. Take walks if you can, go on drives, visit the park, go the local museum. Do anything that you and your son share an interest in. Build up those awesome memories. Tell him how much you love him no matter what. Give him hugs. Take him to school.

I'm sorry if I rambled. If you need anything, please Mefi Mail me. You are in my thoughts and prayers.
posted by Coyote at the Dog Show at 4:27 PM on February 16, 2010 [2 favorites]

Not a answer, but you need to decide what you want to happen to you when that end comes. This involves answering the hard questions: 1) do you want CPR/chest compressions/electric shocks to your heart? 2) do you want a breathing tube and to be put on a ventilator? 3) do you want medications to maintain your heart rate and blood pressure? 4) do you want antibiotics if you have an infection? 5) do you even want to be hospitalized? -- or do you want just to be as comfortable as possible with pain medications through and IV when the end comes?

These are not the questions you asked, but they are among the most important. Once you can answer these, you MUST tell your wife and make sure that she understands. This will ensure that the health care system doesn't fail you and (most importantly) your family at very end as it already has. (I'm sorry for that.)
posted by ruwan at 4:33 PM on February 16, 2010

I miss my grandfather a great deal -- and what I wish is that he had videotaped himself. Photographs are nice, but not the same as seeing how a person moved, and hearing their voice. It's not just the stories, it's seeing the person move that is so special.
posted by jb at 4:43 PM on February 16, 2010

nthing video.
posted by xammerboy at 5:10 PM on February 16, 2010

emilyw: "Some of my positive memories of my parents have been when they shared their own interests with me. If you've some skill or hobby you can share with your son, he'll hopefully end up with memories as well as skills or knowledge of his own which will be a living legacy. Even if he doesn't end up sharing your enthusiasm for the particular topic, it will be something of you he can keep. Especially if you also leave him your related tools or books or paraphenalia."

Yes. I fortunately have a lot of memories from when I was little and a lot of them are from doing things with my dad that he liked to do - riding bikes, making model airplanes, etc. He won't forget you.

My dad lost his father suddely around age 12. His father was a very strict disciplinarian, and I think that's pretty much all he remembers. I'm not saying to totally slack on parenting and let your kid run wild, but this is definitely the time to let go of the little things and try to enjoy as much of your time as possible.
posted by radioamy at 5:13 PM on February 16, 2010 [1 favorite]

I have nothing to add to what the wonderful folks above have already shared. My one piece of advice is this:

(and to be honest I feel deeply betrayed and let down by the healthcare system in general for a variety of reasons that are at this time beyond being of consequence),

I do not know what you are referring to there, but if there is any chance of malpractice in your diagnosis or care, please speak with a competent medical malpractice attorney. In terms of consequence, it's for the good and care of your wife and son. Not for revenge, not for yourself, but for them. This isn't about ambulance chasing, there are professional, reputable professionals in this field, and there is no cost to you, and they will continue to pursue your case after you have passed if need be.

posted by micawber at 6:09 PM on February 16, 2010

Definitely tell your wife. As for your son... I'm not necessarily disagreeing with those who say to tell your son, but from personal experience, I think it's better not to tell him. In all likelihood this is one of those scenarios where there's no great option, and either option will work well enough, but my parents did not tell me when my father only had a few years to live and I'm very grateful they didn't.

I was older than your son when my father got the diagnosis -- about 11 or 12. I can't know if I would have eventually gotten to some peaceful perspective if my parents had told me, but I think my childhood was a lot better because I didn't know how bad my father's condition was. I suspect that if I had known, I would have dwelled on it and been depressed for the rest of his life -- which is what my mother did, and it impacted their marriage quite poorly. There is time for mourning people once they are gone, and knowing these things ahead of time can -- at least for some people -- result in their mourning them before they're gone, which is a waste of the precious time that's left. I admire those that are capable of seeing things the other way, that it's an impetus to value those things more than you might if you didn't know ahead of time -- that's certainly my view now, at 25, but I think that's a lot to hope for from a child and more neutral footing might be the best option.

Plus there's the whole matter of how much time is left; it's not months your child will have that date looming over him to think about, but years. Having a parent in poor health is already quite stressful, but if I had known that when I was 15 or so my dad was supposed to die soon, I think I would have been a nervous wreck and I wouldn't have done or enjoyed a lot of the things I ended up doing. I know me and I would have felt guilty for having a boyfriend and spending time with him; I would have felt guilty for spending so much time on debate, or on choir; I would have felt guilty every night I went out with my friends, etc. There was already much I didn't do because I felt badly about my dad's condition. Incidentally, my boyfriend at the time was mistakenly diagnosed with a progressed form of cancer for a couple weeks before the mistake was corrected -- this was not some ploy for attention, he had a large growth on his leg that had to be removed and biopsied -- and when we both thought he was going to die within months I could hardly function. And he was just a boyfriend, not my father. Also, 10 year olds tend to be more attached to their parents than 15 year-olds, so that concerns me as well.

I think the argument one might make here is that a lot of people would want to know their parent was dying because if they didn't know, and they didn't make that effort to spend time with them, they would feel badly after the fact. All I can say is that when I found out I didn't feel resentful whatsoever that I hadn't been told, only grateful; I had known that my father was very sick and I had made an effort to appreciate the time I had with him without having known that he'd actually been given a vague date of death. I don't know if this is something a 7-to-10 year-old might unconsciously do. I guess it would depend on the kid. I do know that I never regretted not knowing ahead of time, and I have the feeling that my life would have been even more fraught that it already was if I had known.

A few more things: my father ended up living much longer than the doctors thought he would. They had given him four years and he got twelve; it depends on what you've been diagnosed with, but technology can have some impressive advances. He was never given an extended life expectancy, though; the doctors were just always surprised he was still kicking and figured he'd die soon anyway. When he actually died, it wasn't even because of his condition; it was because of a manufacturing error in one of his medications that made it twice the intended dosage, which lead to several complications. If I had thought that he was supposed to die around the time I was 15 and I just kept waiting and waiting for it to happen, it would have been agonizing. I probably would have done poorly in high school and college, I wouldn't have gone to another city for college and I would have never dated my husband, etc. It's really an uplifting thought to think that knowing these things ahead of time will make the remaining time more meaningful and life more rich, and it certainly does that for some people, but on the whole I have seen more evidence to the contrary: even full-grown adults will stay in stasis for years for fear of leaving the side of a slowly dying parent. It's not uplifting to acknowledge how paralyzed people can be by impending death, that people will sit around doing nothing instead of doing everything, but it's natural and it's just as true. It can be a shackle, and unless you're certain there's absolutely no way something might intervene and extend your life expectancy, your son could spend years in increasing fear and stress instead of living his life.

What I do agree with is that you should write letters, make tapes, and anything else that strikes you for your son to have as he grows up. I think a lot of the "if only I had known" sentiment comes from the feeling that we ought to have paid better attention when the person was around, that we would have appreciated them more if we could see the date creeping up on us, but I think videos alleviate that at least somewhat. Also, if you're worried about any possible resentment when he gets older -- "Why didn't he tell me?" kinds of thoughts -- I would say that while it may happen anyway, it's probably a lot harder to resent your father when you have annual (or more frequent) reminders of how much he cared about you and thought so carefully of your feelings. And I can't guarantee that your son will feel the same way I did, but I thought it was selfless and brave of my parents to keep it from me. My father had a lot of imperfections, and I might not have said some of the angry things I said to him if I had known that he was really dying, but I can't feel bad about it: more than anything else, his decision to keep it from me so that I wouldn't be sad is the most powerful reminder I have that he loved me, and that if he loved me enough for that, then he certainly forgave me for any teenage nastiness I might have thrown at him. He made a very hard decision so that I could be happy, and I don't let myself disrespect that by regretting all the things I didn't do.

Best wishes with whatever you do, and I'm sorry you find yourself in such a messy situation. I'm sure that even if you tell your son, things will work out okay in the end.
posted by Nattie at 6:13 PM on February 16, 2010 [1 favorite]

Please don't miss out on the opportunity to write to your son - a lot. Video is great too, as others have said, especially while you're still healthy, but you might find it easier to say meaningful and lasting things if you can proofread and edit yourself.

Much good advice has been given so far about how to tell your family, so I will not add anything further except that I pray that you continue to have peace through the difficult time ahead.
posted by relucent at 6:57 PM on February 16, 2010

think a lot of the "if only I had known" sentiment comes from the feeling that we ought to have paid better attention when the person was around, that we would have appreciated them more if we could see the date creeping up on us, but I think videos alleviate that at least somewhat.

Respectfully disagree, Nattie. As a child who was distinctly in the situation of not knowing, I mostly wish I had been better informed not because of guilt, but because even the medical treatments that my father was undergoing were really terrifying for me, and not being able to place them in a larger context was even more confusing. Death can really blindside us even as adults--to a child who hasn't faced it before, it's not just about not saying good-bye (there's that too), but the fear that the parents' sudden departure is a reflection of their not really loving you. Would letters have alleviated that? Maybe a little, but at the same time, maybe not fully.

There's also a world of difference between a seven-year-old and a pre-teen. For this reason, OP might want to work up to telling the child the full story, but the kid should know generally about what's going on. Kids pick up on these things, and especially if mom is afraid, being left in the dark is likely to be even more terrifying.

As a child, it would have meant the world to know that yes, this is real and it's happening, but mom and dad are doing everything they can to make sure I'll be safe and taken care of and that my father still loved me, and that love was something that would outlast even him.
posted by PhoBWanKenobi at 7:21 PM on February 16, 2010

Please take frequent pictures.

Take some with your child, some with all three of you, some just you and Mom, and some of just you. Right now, the pictures of him with you will be most important to him, but when he is older and he no longer identifies with the images of himself at 7, he can still have some pictures of you to cherish.

If he's the sort, think about buying your son a camera, or maybe some kind of mini video camera or sound recorder. When I was small, I made many loving and comprehensive little cassette-tape documentaries featuring my well-beloved grandmother.

Don't give your son a projected date. If you do, he'll take it as written in stone, and if you don't make it that far, he will feel cheated. If you outlive your estimate, like the family of some of the other commenters above, this can be confusing and upsetting as well.

I hope you are able to make many more happy memories with your family.
posted by Sallyfur at 7:55 PM on February 16, 2010 [1 favorite]

You may be dead some day, but you will always be that boy's father. And he will always look up to you and love you, even if he has no memories of you. Just because you won't be there for him doesn't mean you can't be there for him. Plan accordingly.

And please give your wife explicit permission to move on after your death, and let your boy know it's okay for her to do so. (Assuming those are your wishes.)
posted by jabberjaw at 12:50 AM on February 17, 2010

My grandfather did not tell my father he was dying. He expressly forbid my grandmother from telling him. I'm certain my grandfather did this to protect my dad, and all of his children, from the pain. I think he didn't know how to help them come to terms with his death, so he just sort of never told them. And then he died, leaving my grandmother to tell them. I'm also certain that if my grandfather knew how much being kept in the dark devastated my father throughout his life, and how my father found it impossible to forgive my grandmother for honoring her husband's wishes, my grandfather would have told.

I think what was hard about it is that my grandfather's imminent death was hidden from my father, and so in a way, my grandfather's last few months of life were hidden from him too. He didn't get to ask questions. He didn't get to say how sorry or angry he was that my grandfather was dying. He didn't get to say goodbye. My grandmother was the one who told my father that my grandfather was proud of him. And as my parents age themselves, I realize how valuable it is to learn about death, and how to face it, from people who love us. I'm not sure if there is any way to help others come to terms with it - I think they sort of come to terms with it on their own terms. But I think it might be a gift to be present and to be honest about your own experience, and to give them what time and space you can to come to terms with it.

Look, every time my father talks about any pain or discomfort, my heart drops into my stomach like I'm on a roller coaster ride - it's been that way since I was 7, and I'm in my mid thirties now. (And now that he's in his late 70s with serious health issues, those accounts come pretty often). But it's only by the exposure that I understand there is more than discomfort - he's also annoyed by world politics, laughing at some story my brother told him, and irritatingly judgmental about my life. In short, he's living right up to the moment he dies. In the end, I know when my father passes, there's going to be pain, and loss - but I hope he also doesn't shut me out beforehand, because I want and need to have my own experience around this. As I write this I'm not expressly certain this is helpful information - perhaps just think of it more as a datapoint. There is a really good chance that I'm just writing because I think you're a great guy for thinking about your family. Even if you can't find a way to help them come to terms with it, you can spend time with them while they are busy not coming to terms with it. I really wish my grandfather had just told my father than he didn't know how to help him come to terms with his death, but he was willing to answer questions, he was willing to talk and to listen. Hmmm....and that he was proud of him. Just doing that would have made all the difference in the world to my father.

Sending all the good wishes in the world your way.
posted by anitanita at 12:53 AM on February 17, 2010 [1 favorite]

Tell your wife when she has time to stop and think and be with you. After she's ready, you can work out together how to tell your son.

Then start lists of everything you need to tell them: mundane secrets you might not think about (combinations and passwords and so on), all of you accounts everywhere and how to take care of them, where the will is, where the copies are, who to go to for each little thing. Your favorite color, if you have a favorite color, and your favorite ice cream, if you have a favorite ice cream. The flowers you like and the flowers you don't. The first thing you remember. Who you voted for or against. Everywhere you ever lived -- the addresses, the apartment numbers, the rooms. Where you swam or rode you bike or hiked or flopped down in the grass. Trees you climbed -- can you still find them? Concerts you heard. How you met your wife. All about the first time you saw your son, and the second time, and the thousandth time. Things you did and things you didn't. Where you like to go to relax, and how to get there. All of your favorite books and movies and songs. All the pets you ever had. What you like to sing in the shower. What you remember about your childhood, your grandparents and parents. What's buried in the yard or hidden in the attic. What makes you laugh. Have your wife and son help with the lists and add some of their own. Write everything down or record everything or both. Draw pictures if it helps you say things.
posted by pracowity at 9:33 AM on February 17, 2010 [1 favorite]

Here in Maine, we have the Center for Grieving Children for families experiencing the loss or serious illness of a loved one. Your son may feel like he's the only kid going through this and connecting with others in an organization that can provide support may help.

My best to you.
posted by Sukey Says at 11:56 AM on February 17, 2010

I'm sorry for your pain, and for the pain of your family.

My father died almost two years ago, at the age of 59. He had gone for a allogeneic stem cell transplant, and there was a reasonable expectation that he would make it. Then complications set in -- he was suddenly in a coma, and four days later he died.

He had the foresight to extensively document for a great number of things. All his finances, all his passwords, subscriptions, lists, details, information. All the documentation for the family business. Extensive, well-written documentation.

I, his 35 year old daughter, would trade it all for one hand-written note from him, telling me he loved me. I've spent hours combing through all the emails he ever sent me, looking for that sentiment. He had a habit of funny sign-offs that made me laugh, but no declarations of sentiment.

I think he must have told me that he loved me, when he was alive. Somehow, I still can't remember it.
posted by pointless_incessant_barking at 1:40 PM on February 17, 2010

I just want to echo PhoBWanKenobie's response to Nattie. Maybe you don't have to tell your son NOW, but I urge you to tell him just based on my own personal experience.

This thread brought up a lot of really difficult feelings for me, because as I mentioned upthread, everyone knew my mom was about to die but me, and even now as I approach 30 I have some really awful, mixed-up feelings about it. I have many wonderful videos and letters and journals and photos, but I feel (1) a sense of betrayal that everyone who I trusted was lying to me, and (2) this (possibly irrational) sense that if only I had just known I could have been better/nicer/kinder/whatever. If I had just realized it was my last chance...

And maybe it wouldn't have changed anything at all, because 8 and 9 year olds are 8 and 9 year olds and don't always behave and don't always remember to put others first. But I didn't even have that chance, because even on her last trip to the hospital, when everyone knew she was never coming home again, I didn't have a clue.

Maybe you don't have to tell your son right NOW, but definitely tell your wife, and figure out a good way to let your son know (possibly with help from grief counselors or a family/child therapist).
posted by tastybrains at 2:40 PM on February 17, 2010

I lost my dad a few months ago. I really miss his stories. Video record stories of your life, your excitement over becoming a father, how you fell in love with his mother, what your favorite things are, etc. Tell him (on video) what your favorite foods are and the recipes you use to make them. If there are any family heirlooms that you have, be sure to tell him the story behind them. Take pictures with all three of you in the picture together. I do think you should tell both of them that you are dying. If you don't, they may feel it is the worst betrayal that you kept it from them. Tell your wife first and then both of you can work out how to tell your son. Most of all video record and write how much you love both of them and how you want them to go on and and be happy. That is the greatest gift you can give them -- permission to be happy and go on after you're gone.
posted by GlowWyrm at 7:55 PM on February 17, 2010

Absolutely immense numbers of photos – far, far more than you could possibly imagine being necessary. Some posed, some “intentional,” but most just slice-of-life photographs. Take pictures of every goddamned thing you and your family do. Especially take pictures of your son at his current age and also separate pictures of you. When he grows up, he will have a mental image of himself and a mental image of you. Also of course pictures of the two of you together.

Back these up all over the place and print out many of them on those hundred-year-certified papers. Do not trust the only copies to anyone or anything (especially not Flickr).

Other people have suggested videos. Great idea, but be careful of formats. I don’t know what to suggest there. Home DVDs will probably remain playable for a decade or more.

Now, this one may not be expected. As many recordings of your voice as possible. The easy way is to just talk about interesting things that have happened to you. No sappy and overdetermined “Dear son, here is a heartfelt letter to you” kinds of recordings. Just sit there and talk. Maybe the two of you together.

A nice way of handling this is to just record ten minutes or so every couple of days recapping what you’ve been doing. Seriously: “The last episode of Lost totally sucked and here’s why” will be really interesting to him in the future. MP3 seems to be a format that will survive the rest of the century, so use that.

People want to relive the real lives of their long-gone loved ones. Ubiquitous technology makes that possible. As he grows up, he can pick and choose from a full panoply of documentation about his day.

And one more thing: Preserve some clothes, boots, glasses, wallet, car keys. Your favourite hammer or wrench. Your diplomas, marriage certificate, birth certificate, passport, driver’s licence. Physical artifacts.

Tell him not to be unhappy. You weren’t, so why should he?
posted by joeclark at 2:24 PM on April 1, 2010

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