My dad has terminal lung disease. Please help me come to terms with it.
April 24, 2014 8:59 AM   Subscribe

I just found out my dad has pulmonary fibrosis. He and I are both too young to deal with this. Help?

My dad told me yesterday that he has pulmonary fibrosis and is going to Houston this weekend to be put on a lung transplant list. I looked up the prognosis for pulmonary fibrosis, it’s 2-5 years, 7 if lucky. The lung transplant may help but may also lead to other complications.

I just…need help processing this.

As selfish as it may sound, the main thing is that I always assumed I had more time to get married and have kids, and the prospect of my dad not walking me down the aisle or holding his grandchildren is really choking me up right now.

My dad is 63. I’m 26 and the baby of my family. I only have one older biological sister, and we’re pretty estranged. She lives across the country, is 33 and married with a young son. She and my father never got along well-he and I are closer. It’s unfair that he gets to see her have kids, and my cousins have kids, and I’m the only one left unmarried and childless. I can’t help thinking it would be so much better if I was just married already, or if he had just little longer than he does. As it is, he is probably going to be dying throughout the only time I have to date and maybe get married or have my first child, if I’m lucky. And my children won’t know their grandfather.

I’ve had a complicated relationship with my father over the years. We’ve had ups and downs and have been distant and close at various points. I’ve had some emotional fall-out from my parents’ divorce, and he can be very type-A and in some ways is a very different person than I am, with different political and religious beliefs. But maybe I’ve always been his favorite (or at least, the child closest to him) and I also look like him and take after him personality-wise much more than I do my mother.

In the end I know my dad loves me. He’s always been there for me my whole life, has cared for me as best he can in his way, and has been unfailingly proud of me and happy to be my father and never fails to tell me this. Ultimately, whatever our petty differences and whatever his mistakes, I know he is a good enough father and man that witnessing him decline in health is going to hurt really, really bad, and I’m just not prepared to deal with this. I’m not prepared to be left on earth with only my stepfamily, mother, and estranged sister, either. At least I just recently moved back to my hometown, which is wonderful, because I’ll get to see him more often.

I asked my dad if he’d tell me the truth about how bad it was, and he promised he would. He said, “It’s pretty bad. I honestly don’t know how much time I’ll have left, honey. You need to think about yourself and your life right now, anyway, and don’t worry about me.” Then I had to leave because I was starting to cry and didn’t want to cry in front of him.

I love my dad and I don’t want to see him suffer. I don't want to see his quality of life decline greatly, or have him have to deal with major surgery and even more health complications. I feel like I need to talk to someone about this, but no one I know can really relate, except maybe one newish friend of mine whose father passed away when she was in her early 20s.

How do I deal with this? Has anyone else dealt with a parent’s illness and death before you were ready, at a young age, and have advice? Things you wish you’d done? Any first hand experience of pulmonary fibrosis would also be helpful. Thank you very much in advance.
posted by quincunx to Human Relations (26 answers total) 13 users marked this as a favorite
Oh, man. I'm so sorry, quincunx. I lost my mother-in-law (who was very much a surrogate mom to me) at 26, from a swift-moving cancer that blindsided us all. I'm not sure how much useful advice I have, but I guess it'd boil down to this:

- No one can tell you with absolute certainty how much time your loved one has left (except towards the very end). "You have ____ time left" predictions are well-informed guesses at best, speculation at worst. My mother-in-law died three months after hearing she had three more years... and yet my uncle has been living for a decade with a supposedly "terminal" cancer. So while you're understandably fearing the worst (and no doubt Googling dire statistics), there is a lot of uncertainty and variability here (not that that's always a comfort).

- When you're with your ailing loved one, it's all about them: their comfort, their desires, their needs, and so on (The Ring Theory kinda explains the reasoning behind this). HOWEVER...

- ... you will not be with them 100% of the time, and while it's hard to believe, your life WILL go on, even as this is happening. You will have happy moments, and good experiences, and notable events. You will continue writing the book of YOUR life even as your dad's book is coming to a close. When you've first gotten the news, this idea seems impossible and cruel ("How can I enjoy ANYTHING at a time like this?!"), but it's just how life works... we are geared to survive, no matter what's happening. Try to take your pleasures where you can - time with friends and other loved ones, good meals, good media, and so on. Experiencing happiness doesn't diminish your feelings for your dad... but nor does living in darkness 100% of the time make anything better.

- I say this in every end-of-life thread, but that's because it's SO important: you guys need to talk to a hospice before you think you NEED a hospice. They are wonderful, wonderful people, and if there is any one single thing that can make losing a loved one less-awful, it is the help and support of hospice care.

- If you ever want to talk/vent/cry, you can absolutely MeMail me.

Good luck... I'll be thinking of you.
posted by julthumbscrew at 9:18 AM on April 24, 2014 [13 favorites]

I'm in my thirties. My father died when I was 18. My mother, when I was 28. Neither had exceptionally pleasant deaths. Both terminal illness.

It feels impossible when it's happening. Like this is something you cannot recover from. Be assured: you will recover. You'll be not much fun to be around for a varying amount of time. Hold close to those around you, but don't make them carry all your weight.

You have time. I had almost no time between diagnosis and death with my dad. It was terrible. You have years. Make them count. The hardest, saddest, darkest feeling you can have about a dead loved one is regret.

With time, their memory fades. You're left with a kind of idea of who they were and what they did. Most importantly: what they would want you to do. This is their legacy. This is what they lived for.
posted by lattiboy at 9:19 AM on April 24, 2014 [10 favorites]

My mother was diagnosed with Stage 4 ovarian cancer when I was 19, and she lived a decade longer than she was supposed to with several bouts of remission along the way, but there is no way to be ready. You'll never be ready. Even when the hospice nurses were saying "we can't figure out how she's still alive" we weren't ready.

What helps? Letting yourself cry in front of him next time will help. Letting him cry. Letting him be scared and angry. Letting him tell you what he really wants to do, letting him tell you what he wishes he would be able to do. Letting him decide on really petty things (I was terrible with this with my mom, and it is one of my biggest regrets) that don't really matter but they make his day just a little better.

Ask him to tell you old stories, because you'll want to remember hearing them as clearly as possible. Watch his favorite movies with him, find out why he likes them so much. Laugh laugh laugh. A lot about death is unexpectedly hilarious one minute and devastating the next, and both are true. We spent years during my mother's life with ICU nurses not knowing how to deal with our family laughing hysterically at her bedside, but it wasn't denial. It was the way she lived her life.

Be someone the nurses and doctors can talk to honestly (not someone they protect from the truth), but remember that they are always giving you their best guesses, because no one can no for sure when and how the end will come.

Ask for help from the people who offer. A lot of people will say "let us know if you need anything" but have no idea what to actually do or bring. Ask them for a head of lettuce or help mowing the lawn or a copy of a book your dad would like to re-read. They want to help, and even though you won't want to ask for it, you will feel so much better and safer when you give them opportunities (even silly ones) to reach out. People will want to show love but they will worry about infringing on you.

Forgive yourself for the mistakes you will make. Your father will know you didn't mean them.
posted by a fiendish thingy at 9:20 AM on April 24, 2014 [5 favorites]

I am sorry you are going through this. I agree with what julthumbscrew says above. I wanted to add though that we live in a time of technological advances. Take advantage of this. Get your dad on video, telling stories about his life, talking to your future spouse and children. You will have those videos to hold on to forever.
posted by roomthreeseventeen at 9:21 AM on April 24, 2014 [4 favorites]

My mom died of cancer a few years ago, when I 26. It was about a solid year between diagnosis and the funeral. My dad died way, way back. The only remaining blood-relatives I had/have are some rather old and enfeebled grandparents. She never got to see me graduate or get married and my future kids will be missing basically half their family. It's a big, heavy load of shit and it sucks and you should do what you need to do to take care of yourself.

You get to make what you make of this situation, no one else. Your dad will pass away, and you will have to keep on living regardless of how shitty you feel and all the stuff you didn't get to say and do. Depending on how close you're going to be to him, you're going to see some things you don't want to see and probably do some things you don't want to do, especially toward the end. And if you don't want to do them or see them, don't.

When my mom was at death's door, I only visited once every few days. Any more than that, and I'd start having a hard time with basic functioning and, well, that was more important to me. No one gave me shit about it; everyone understood and encouraged me to stay healthy above everything else. For my mom it was a matter of little else but time; for me, I had a whole life to live and I had to be smart enough to know what my limit on seeing that sort of thing was. I wasn't there when she died and I don't regret it.

And I will bet you, right now, that when it's all done and it's a decade from now and you've had time and space, this is what's going to stay in your head: He’s always been there for me my whole life, has cared for me as best he can in his way, and has been unfailingly proud of me and happy to be my father and never fails to tell me this. So keep that in mind with everything you do now because it's no less true now.
posted by griphus at 9:23 AM on April 24, 2014 [3 favorites]

And feel free to memail me if you'd like.
posted by griphus at 9:24 AM on April 24, 2014

First of all, I'm sorry you are going through this. Cancer took my father when he was 54, so I know what this feels like. That said, I think you need to take a step back and stop making this all about you. Yes, it sucks that you future kids will never know their grandfather. So what? Neither of my kids have any memory of my father, yet they still managed to have fulfilling, happy childhoods and have grown up into responsible young adults.

Now is the time to focus on your father, and your mother. Your mom, especially, probably could use the support. You complaining to her how unfair this is to you is not going to help. Instead of worrying about the kids you may never even have, spend your time helping the grandkids that actually do exist. 5-7 years is a lot of time, and it's just an average. Nobody ever knows what course a terminal illness is take.

Everybody deals with this stuff differently. I moved 600 miles away during my dad's illness and didn't visit a whole lot during the final two years. However, I knew my dad expected me to make wife and kids the priority in my life, not him. He raised me to be a responsible adult and the best way to honor his life was to do that, and not do anything rash or stupid because he was sick, or not to screw up my life grieving over the end of his. My biggest worry was over how my mother was going to survive without my dad. It turned out my mother was a lot stronger and more resilient than I gave her credit for. You probably are too, but you have to start by not letting yourself wallow in self-pity. This isn't happening to you. It's happening to you dad.

I imagine your local hospital has a support group for relatives / children of cancer patients. That might be a good place to start looking for people you can talk to.
posted by COD at 9:33 AM on April 24, 2014 [1 favorite]

I wish I had found/reached out for more people my age who were losing or had lost a parent. I was a little older than you - 29 when my dad died, and within a few months, my mom was diagnosed with terminal cancer and a few months after that she died - but pretty much no one I was close to had had a parent die. My friends were mostly as kind as could be, but I'd have loved to have had someone or ones who really understood what it felt like.

Call the hospital where your dad's being treated (or, one near you if you two are not local to each other) and ask about support groups, and google around for support groups for people dealing with this particular condition. Finding a few close-age people who really get it can be a relief.
posted by rtha at 9:37 AM on April 24, 2014 [1 favorite]

Boy have I been there. First of all, a great big giant hug from me to you.

About five years ago my father was diagnosed with stage 4 lung cancer. I was 31 at the time, he was 60. He was given approximately six months to a year to live.

I was overwhelmed with fear and sadness upon his diagnosis. We were very close. I mean, he hadn't walked me down the aisle yet! I didn't have children yet! He can't leave me this soon! Fuck you, cancer, what the fuck, man!?

But, you know what? He did leave. He passed away eight months later. And, nope, he didn't walk me down the aisle. And, nope, he didn't see any kids I might or might not have some day. But I don't even grieve any of that. I miss him dearly, but his love is always with me. I feel it inside of me always. He's gone from sight, but just the thought of him lights up my face with a smile.

The best advice I can give you is to enjoy your time with your dad. You're lucky in that he most likely has MANY great years left here on this crazy planet. Nourish your relationship with him. Spend time with him. Talk, laugh, share. Don't let arguments go unresolved. Don't let anything go unsaid.

My dad and I had some of our best times together those last eight months. Stark, honest, tear-filled talks about life and death and joys and fears. Death was something we had to face, and face it we did. There was no elephant in the room, we didn't want it there.

What my dad really wanted most of all was to know that us kids would be okay when he was gone. And we assured him we would. And you will be, too, quincunx. I can promise you, life does go on, even after a parent dies.

Rest assured this crazy fear you're feeling right now will dissipate a lot with time, as you have time to come to terms with his diagnosis. For right now you only have one mission -- love your father. Love him like crazy.
posted by Falwless at 9:39 AM on April 24, 2014 [5 favorites]

Cheryl Strayed (Dear Sugar) says over and over again -- no matter when you lose your parent, it's too soon, it's not fair, it will never be okay.

I stayed in a bad relationship longer than I should have in part because he had met my mother and I couldn't imagine forming a lasting bond with someone I had met after she died.

I have so many things I would like to say, but I think the most important thing is: Don't come to terms with it. Not now, not yet. Be ANGRY, be sad, be horrified, be disbelieving. Feel your feelings because that's what life is. If you don't let yourself feel what you're feeling, you're denying yourself your life.

And it will never be okay. But your experience of it and your perspective on it will change daily. It will get better and it will get worse.

When I did hospice volunteer work, we had five precepts that we adhered to. They are more or less explanatory but I can expatiate if you'd like and I can point you to more information on them, etc., if you'd like. They are:

Don't wait.
Accept everything, push away nothing.
Find the place of stillness in the middle of things.
Bring your whole self to the experience.
Cultivate "don't know" mind.

I'm sending you lots of warmth and love to hold you while you are in the midst of this. Please feel free to memail me at any time including if you'd like my info so you can text or email me whenever.
posted by janey47 at 9:40 AM on April 24, 2014 [10 favorites]

First, I'm really sorry you have to deal with this. You are doing the right thing by asking for help so keep doing that.

Second, I don't think it's selfish at all. All those things you wanted? Your dad walking you down the aisle, seeing his grandkids? Perfectly reasonable. There's no one right way to feel about this. So don't beat yourself up about it. Of course you assumed he'd be there. We all do that. You can't go through life thinking every minute that you are going to lose your parents. So it's okay to think about how this stuff affects you. Just don't let it drown you. Feel it, find ways to deal with it and move forward.

Third, my folks are in their late 80s and what I've been working on the last year or so is family history stuff. Not genealogy, I can look almost all that up online, but more just all thing things I want to know about their life that only they could tell me. There's some great sources online for questionnaires. It's been helping me think of things to ask my parents that I might not have thought of later (and would have regretted). It might also give you guys some things to talk about and focus on besides the disease and losing him.

Good luck and take care of yourself and your dad. I wish you lots of good time together.
posted by Beti at 9:43 AM on April 24, 2014 [2 favorites]

My grandfather, who I was exceptionally close to, died when I was 19. I was pretty seriously depressed for years afterward. Now, I'm 27 and in a serious relationship. I wished so very badly that Mr. Rose could have had the chance to meet Grandpa Rose. They would've gotten along great, I'd like to think.

A good friend of mine had her aunt die of pulmonary fibrosis right before Christmas last year. It was the worst, the absolute worst.

Lots of people have given you great advice about taking the time now, so I'm going to talk to you about missing the big moments without your dad. Getting married, having kids, etc. Yeah, it really freaking sucks that he won't be there to share those moments with you. It's just not the same. It never is.

But you'll be able to talk about the memory of your dad one day. You'll talk about the times, and tell your significant other or your kids about all the cool things you did together and the things he taught you. You'll teach them and tell them, and keep the traditions alive. One day.

But it won't be today, and that's totally okay. Be mad, be upset. Mourn the loss of being able to do all those "normal" things. And also, don't forget to get the stories, the questions, and the things you've always wanted to ask your dad about.

You've got some time, so go ahead and take it. Take memories to keep with you as you go through all the really sucky, crappy, miserable parts that you'll have to get through. You've got good people here, and hopefully in your life, to help you through so you can get to something better afterward.

It might not be good, it might be just different. But it'll be okay, and from okay, you can work your way back up to good after you've had time to mourn your loss. I'm sending you my best thoughts.
posted by PearlRose at 9:49 AM on April 24, 2014 [1 favorite]

I've been through this myself. My father got sick when I was in college and it was a slow decline until he died 2 and a half years ago.

I'm just really sorry you are going through this. It's not fair and it just sucks. Through his illness, I learned to accept him for who he was, a flawed person who truly did care for his family. I also realized that he was going through a very scary time in his life and I don't think he was equipped to say everything he was feeling.

You absolutely cannot and should not put your life on hold, though, if that's at all what you're thinking. It just will serve to leave you in an even bigger emotional hole when he is gone. Meet people, fall in love. live your life. That's what your dad wants. He will want to know that you'll be able to carry on after he's gone.

So love him, do the things with him you always loved or always wanted to. Hold no emotions back.

And, if you always end every conversation with him with "I love you", then that's going to be the last thing you say to each other.

I am absolutely here for you. MeMail or email or whatever you feel okay with. You are not alone.
posted by inturnaround at 9:55 AM on April 24, 2014 [2 favorites]

I lost my father 3 years ago to lung cancer.

Don't leave anything unsaid. I would love to talk to him again.

Feel free to cry and get all your emotion out. It will get easier, but it will take time.
posted by keep it tight at 11:12 AM on April 24, 2014 [1 favorite]

If it helps to soothe some of the feelings about him not seeing his grandkids, could you video- or audio-tape some conversations with him about…stuff?

Use prompts like "Tell me about growing up in ____, Dad" or "How did you and mom meet?" Then just let him spool off memories for a while. They will be precious to you, and you can decide later who to share them with.

(My own parents are alive but live 1300 miles away. I love them fiercely, but often feel like my kids are missing out on having them around -- and I am trying to work up the courage to make some recordings like this next time we visit.)
posted by wenestvedt at 11:34 AM on April 24, 2014 [1 favorite]

Hi sweetie. I am so, so sorry.

I was exactly your age when I lost my dad to lung cancer (he was 53), and boy do I wish I could say, I don't know what you're going through. But man, I totally do, and still remember that gut punch like it was yesterday. (As such, please excuse the rambly-ness of what follows.)

It's just hard. It will be very, extremely hard to watch his health decline. But it will also be hard less often than you think--every day won't be some new decline; you'll get used to various "new normals" and each will hurt for a little bit, and then you'll acclimate again. You are somewhat fortunate in that you'll have a few years to do all of this acclimating--we had about six months, of mostly slow change and then sudden, very dramatic change, and still there were many plateaus of "new normal."

My dad and I were tremendously close, and simultaneously had kind of a rollercoaster of a relationship. I mostly kept the status quo for the first part of his illness--just talking as often as usual, visiting as often as usual, watchin' baseball and not talking too much about cancer. It can be surprisingly easy to do this, depending on your personality/your dad's.

I remain ashamed to say that somehow, I couldn't quite figure out how to connect to him as he was dying. (My mom and therapist say there's no shame in it, but I feel it anyway, so there you go.) Maybe there's no ideal way for the young and healthy to connect with the dying, I sure as fuck don't know. In his last days he relied mostly on my brother, who'd survived a near-fatal illness the year before. They connected on that level of pain that my mom and I just couldn't begin to know about. What I'm saying is, you may find that your father gets further from you before he actually goes away, and so right now, everyone is right: say all the things.

I was in a newish relationship around the time my father was diagnosed. That boyfriend (we are no longer together) was a tremendous support, and forced me to sometimes have a good time and eat a good meal, and I am grateful to have had that. I opted not to have him meet my dad. I think my dad was also not-thrilled about meeting his daughter's boyfriend when he was ill, either--hard to come off as macho, you know? None of this was ideal, all of it was okay in the end.

It is sad that my current SO will never meet my dad; simultaneously, it's okay, because I pretty much know what pop would think about him, you know?

My only advice is, be brave. Steel yourself for the ugly and the painful and do. not. run. away. The only times I regret are the times I (metaphorically) ran away. Don't leave because you might cry. Don't leave because HE is crying. Stay. Just stay. When he tells you things about his funeral, his will, gives advice for your future, stay. You will withstand the hurting and the crying, as little as it may feel like it at the time. And someday years from now, you will sit in a warm, bright kitchen and write to someone else, and tell them it will all be hard, and okay.
posted by like_a_friend at 11:34 AM on April 24, 2014 [8 favorites]

I am so sorry about what you and your dad are going through.

Yes, yes, yes to what like_a_friend says. I'm just a few years older than you, lost my dad last year to Alzheimer's, my mom currently has cancer. Every day it shocks me what "new normals" you can get used to. You don't have to make all the adjustments at once. There will be a decline, things will plateau, and you will get used to that and become stronger.

Some days things may even improve a bit. Treasure those moments.

Be there for him, but make sure you have time for yourself, too. It can be too easy to over-give, to burn yourself out. It may be hard to take time off, but it's really important. And he'll be happier seeing his daughter happy.

Memail me if you ever want to talk.
posted by lharmon at 12:07 PM on April 24, 2014 [1 favorite]

People have already given great advice, but a few other things. (My father died of cancer when I was 15. I'm now 38. We had nearly a year's warning, which helped a lot.)

- As part of a church camp thing, my father wrote me a two page letter, telling me all the things that he wanted to make sure I knew. My father was very stereotypically-British never-talk-emotions (I knew he adored me, but him talking about it was rare), and so having that letter was and has been huge. He talked about what he saw in me then, what he was particularly proud of (not achievements, but things like "I'm really delighted at how you keep exploring new and different things, and dragging us along with you")

I don't think he'd ever have written it except for that church camp requirement, but he said after to my mother that he was really glad he did. I read it at least once a year, and whenever I feel like I need to. Way more personal and meaningful for me than photos are (I'm a word person, not an image person, too.)

Whether you get your dad to do something like that, or video/audio (make sure you pick a format that can easily be used 40 or 50 years down the line!), having that kind of thing is priceless.

- It mattered a lot to him that I continue to be able to do the things I loved (which because I couldn't drive, took some help from other people.) On the other hand, I really believe it helped him have an engaged life right up to the very end. (He was a university professor: he taught Thursday, went into the hospital the last time Friday morning, died very early Saturday.) He cut out everything he didn't absolutely love doing, but having me continue to have a full life, and him doing the parts he still enjoyed made a huge difference.

Those things may be different for you and your dad than you think they are now, but being aware that that's a thing you can aim for maybe might help.

- Because my father had time, he and my mother had a lot of conversations about what mattered to him after - what sort of things he cared about for the funeral, what sorts of things he didn't. I wasn't in on those conversations, but I know it helped her (and my older siblings, who were out of the house by that point) when we actually needed them. Anyway, when you *do* have time, it's really handy to sort that stuff out early, as much as you can.

Also, knowing who is responsible for his financial accounts (whether that's you or whoever) and knowing where all the necessary info is stored is *huge*. Including any online accounts, and including anything that has copyrights attached to it. Again, you've got time to sort this out, but it's so much easier to do it sooner than later. (My mom has told all three of her kids where it is, who has keys to her place for stuff that might need an immediate formal legal copy for things like power of attorney, medical directives, etc.)

- In terms of him not having seen major stuff in my life - yes, it sucks. However, both my current religion and my religion when he died gave me ways to keep feeling like he was not totally gone. (When I was in my late teens and annoyed at my mother, I used to go for long walks and ask him to talk sense into her. It generally worked.) There are ways - especially with some advance planning - to be able to include him and your memories of him in major moments.

- Things I wish I'd done differently: I wish I'd done some digging for people who lost a parent in their teens - it was something like a decade before I met anyone who'd gone through the same thing. (These days, with the Internet, that part would be easier, but there's some specific parts of grief that it changes, like you noted about knowing he may not be around for major life events.) I wished we'd done a lot more talking about his side of the family and family stories, or that we'd recorded them somewhere.

And I wish a lot - at least weekly, still, and sometimes daily (and yes, 23 years later) that I'd gotten a chance to know him as an adult child to parent relationship like my siblings did. There's no fixing that one, but it's something you and your dad could definitely do more with.
posted by modernhypatia at 12:13 PM on April 24, 2014 [4 favorites]

Hey man,
I just wanted to let you know I'm working through the same stuff right now. My dad was given 12-15 months to live back in January with adenocarcenoma of the lungs, and then somewhat squandered the past few months because he didn't tell me the severity and the life expectancy until mid March - I found out about it mid January, but both he and my mom played it down and weren't forthcoming about the stage and severity because there were other things involved as well.

I'm a few years older than you and have two kids. We live about 1000 miles from my dad and it isn't possible for me to just pop over and see him either. Both my kids are young, but both have a strong attachment to their grandparents. Kids just do. Part of me envies you. At some point soon I'm going to have to sit down with my Son and explain this to him - and he's at an age where he will get it, and it will hit him hard. We witnessed how sad he was when we lost our dog two years ago, and he still brings him up sadly. It's a lot to process. My daughter, while younger, won't totally get it because of her age, but she's now starting to approach the age where she'll remember a grandfather and that she loved him - but not much else.

Likewise, I feel for you too - there are so many things that yeah - you feel like you want to achieve while your parents are in this world. These achievements are for you, but yeah, there's always a piece of pride in showing parents what you can do. And yeah... that will likely end. I feel the same way. I mean - my dad retired just a little over a year ago - and whammo... guess what... that's it. That's all the time any of us get.

I don't know what to say man. My relationship with my dad was pretty fractured during my teenage years, and it took college and well into adulthood for us to figure out how to repair it. Even with things between my dad and I, I know there will always be things left unsaid - because... well... that's our relationship, and its good - but well... we all make peace with something.

I'm a workaholic. I can't help it. Its the job that I took, and its the hours that are required to be successful in my field. From this experience I've had to balance grief, worry, fear, work, travel, and kids - and yeah... no part of it has been un-stressful. But, I look now at the tunnel and the way out, and there's a certain amount of what I've done that isn't worth it - an I'm simplifying and reducing what I'm doing. I'm re-prioritizing my relationships, including my relationship with my dad - but also the relationship with my kids.

Its a tough lesson to learn, and I'd rather have learned it a different way, but this is where I am. If you need anything, pop me a memail.
posted by Nanukthedog at 1:04 PM on April 24, 2014 [3 favorites]

Hi. Put me down for 'in the same boat.'

My mom (63, I'm 32) was diagnosed last November with stage 4 cancer all throughout her thorax. No one can believe she's still walking around, based on what her CT scan looks like. We don't know how long she has.

She closed her practice and is focusing on facing each day with grace and dignity. I am struggling with the grace-and-dignity part, myself. This morning we spoke on the phone, and she had 'good news' - she had figured out where we are going to hold her memorial.

Overall, I am just trying to be there for her whenever I can. We are a couple hundred miles apart, but I make a visit every couple weeks. Previously, I would hardly ever take personal calls at work, but that went right out the window when the best time of day for her to talk became midafternoon. I go and find an empty conference room or something and just talk with her for as long as she has the breath.

As a family, we are doing a pretty fantastic job of making happy times together. We lost my brother last year, so everyone is intimately familiar with random emotional breakdowns as needed. We had a big dinner for her birthday, gave her flowers and a kitten and lots of hugs. Cooked all her favorite foods.

... I don't know where I'm going with all of this, and I apologize if this is a non-answer. Feel free to drop me a line if you want to talk.

posted by vortex genie 2 at 1:42 PM on April 24, 2014 [1 favorite]

Best answer: I'm very sorry for you both. My father passed a couple of years ago after 5-6 years with pulmonary fibrosis. You've received a lot of wise words above about how to make the most of your time with him, so I won't repeat those. I'll call out like_a_friend's comment specifically for how well it reflected my experience. I can speak a bit about the disease, and feel free to MeMail me if you have any questions.

My dad was always very physically active and took pride in his annual practice of moving his garden plants in the front of the house to the back and vice versa. In his mid to late 60's he started losing his breath and endurance much faster than normal. He got the diagnosis then and an estimate that he had less than half normal lung capacity.

Progression was slow, but noticeable. One thing that seemed to help (and maybe gave him additional time) was spending time in warm/hot climates. It seemed to dry up the fluid in his lungs and improved his mood and energy. He had an oxygen concentrator but often neglected to use it out of general crankiness. In retrospect, I also wish we'd looked into screening for autoimmune conditions; I've come to suspect since that there are some family sources of chronic inflammation that fed into the progression of the disease.

As his energy level decreased, he definitely withdrew into himself. I can't speak to the transplant option; I don't know if it was his age, but his doctors didn't think it would be a net positive for him. He retained a fairly positive mindset through the whole thing, which I have to give him credit for. It can't be easy to change your self image as a robust, vital person so quickly.

His death was not horrible, thankfully. Caught us by surprise, though. I thought he still had a year or so left. He picked up pneumonia (not hard when you're down to less than 30% lung capacity) and went to the hospital. He rebounded with some antibiotics but later fell asleep and then into a coma. Passed quietly the next morning with family holding his hand. I strongly suspect the bastard saw his chance to slip away with a minimum of fuss.

We'd long before said most of the things that needed to be said between us, but as soon as he was gone I thought of a flood of questions I still wanted to ask him. That may be inescapable, but you've got good ideas on how to spend the next few years besides hoping for remission. One thing I'll add: ask your dad to write a letter to your kids, and maybe record him reading Goodnight Moon or your own favorite kids book.

You say you don't want to see him suffer. That is inescapable. It will happen, whether he's able to hide it from you or not. Your gift can be to help him handle it with grace. I'm so sorry, and wish you all the strength and wisdom you need to face this.
posted by sapere aude at 3:36 PM on April 24, 2014 [4 favorites]

Response by poster: Thank you all so much. All of your answers have been extremely helpful, even the tough love. Thank you sapere aude for giving me a relatively peaceful and good story about the outcome of this disease- I know my dad will do everything right, but that's really the "best case scenario" we can hope for. He could also suddenly take a turn for the worse in the next year or two, we really just don't know.

I'm fortunate in that I don't really need to worry about my (bio) mom; she and my father have been divorced for a long time and she's happily remarried. Although that does bring up the complications of how much and when to tell her. My dad has been happily remarried for two years and I get along quite well with my stepmom, stepbrother and stepsister. But it's not going to be quite the same for them. (They have a good relationship with their bio-dad as well as an amicable one with my dad.) My stepmom might take it hard as things progress, but she and I are fairly close and I feel like we'll end up supporting each other. She's a pretty strong lady. Really, it's honestly probably going to affect me emotionally the most, as the closest and youngest bio relative of my dad. I am sure my stepmom may end up doing a lot of caretaking, though, and I do worry about her and her own health, though she is thankfully in great shape healthwise as of right now.

I do want to maintain my own life and be cheerful for my dad because I think he'd like that. But I know I'm going to be emotional, especially when I see him start getting less active (already noticeable) and more tired. The only thing to do is to enjoy the best times now and not to forget about it, but not to let it get in the way of our happiness in the meantime, as much as possible. Easier said than done, especially amidst doctors appointments and blood tests, etc.

Again, thank each of you for taking the time to respond. Your answers have been incredibly touching and made me feel much less alone right now.
posted by quincunx at 5:50 PM on April 24, 2014

There are some phenomenal responses in this thread. I am going to add my own anecdote. My dad was diagnosed with stage 4 colon cancer and heart failure in 2008. He was given 4 weeks to live. He's still chugging along, pretty much on pure Irish stubbornness with a chemo assist. I also had a complicated relationship with him while I was growing up, but we've become closer than we ever have during his illness. Take the excellent advice above. Hopefully you'll have more time than the doctors think, but just try to cherish each moment. The little stuff like saying "I love you" at the close of each phone call help more than you'd think.
posted by bedhead at 10:01 PM on April 24, 2014 [1 favorite]

My father died quickly of brain cancer. My stoic family cried for about 3 days at the time of diagnosis, then we all got our shit together and lived like a normal family until near the end.
We are all going to die, you just have some idea of when death will come. No one is promised any more days. Car accidents and lightening strikes take people every day too. Be thankful for each "normal" day you have together. Deal with the tough medical stuff as it comes, and be glad for each good day.
Any of us can be gone at any time. Be thankful you have one more day.
posted by littlewater at 10:42 PM on April 24, 2014 [1 favorite]

In addition to the idea of the interview that someone mentioned, you might consider picking up a few children's books (maybe old favorites of yours?) and having him read those aloud so you can share those with your own children some day.

So sorry you're going through this.
posted by freezer cake at 1:19 PM on April 25, 2014

Best answer: I'm really sorry to hear about your dad's diagnosis.

My dad (78) passed away last year from asymptomatic pulmonary fibrosis the day after my 34th birthday. I've been living away from Australia for the past several years, but I was lucky enough to be able to go back and share his last weeks with him.

When my dad was diagnosed he also had an immediate prognosis of a couple of years as it was unclear how quickly the disease would progress. However whether it was through luck, dedicated consumption of anti-oxidants or the super dry air of South Australia, he was alive for 7 years following diagnosis. Even though he was forced to be less active and became weaker and more reliant on an oxygen machine he was still enjoying his life and was luckily not affected by pain.

I got to introduce him to my now husband and a year later he was still there - staying up until late in the night drinking with my father-in-law at our wedding.

Dad used to have proper adventures (light aircraft, international air races, tropical jungles and rebel forces type of stuff) and built houses. When that type of stuff was no longer possible he kind of shifted his involvement - he got excited about other people's adventures (including mine on the other side of the world) and 'supervised' other people doing work on renovations. I was back visiting once and he needed someone to do some drywall installation - he taught me everything I know about flush jointing and demonstrated his technique while using his oxygen machine. He was still my dad, but just different.

The things that really affected Dad's overall health were complications from minor ailments. People can be kind of stubborn about going to doctors for minor problems (I've got PF! this diarrhoea is nothing!) but not taking enough care of that stuff became problematic in Dad's case.

There's a lot of great advice from everyone above but practically you can support your dad by helping him make the changes he needs and wants to make his life easier (set up a coffee station near his favourite chair or offer to run errands to help and so you can spend time with him).
Talk about the things he's interested in, but make sure he knows about the things that interest you too. Keep him healthy and ensure that he has a good relationship with his general practitioner as well as any specialists. My dad made sure we were all aware of his end of life arrangements, especially his do not resuscitate order and pre-signed consent for palliative care.

Spend valuable time with your father and everyone else you care about and do the things you enjoy doing. Make sure you say I love you at the end of phone calls and when you say goodbye after a visit, even if it feels weird at first. I know that we're all encouraged to 'treat each day' as if it's our last, but sometimes we get a big kick that makes us properly do that.

It might not be your cup of tea, but about three months ago I saw this film - About Time on an airplane. I'm a sucker for time travel and British romantic comedies and Bill Nighy does remind me a bit of my dad, but I found it to be just the right thing to watch to give me some additional perspective on my Dad's illness and passing.

Feel free to memail me if there's any thing I can help with.
posted by pipstar at 3:20 PM on April 27, 2014

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