During a potentially long-term illness, how do you know when you're supposed to drop what you're doing and go be with the sick person?
March 26, 2008 6:58 PM   Subscribe

My dad is dying, but how do I know how quickly, and how do I know which "scares" I should travel across the country for?

I previously posted about my dad's brain tumor. Turns out he has stage 4 non small cell menasticized lung cancer, pneumonia (for the second time in a month), and he signed his living will today, saying he doesn't want to be on a respirator (he has been on one for the last four days, and unconscious). He already had brain surgery three weeks ago, and I went down to florida from chicago for that. Do I go down there now too?

I feel like I can't get a straight answer from anyone about what's really going on. Last time I went down there, they said he just had a tiny tumor, but I knew it was going to be something awful so I went down there and the doctors told us about the cancer, etc.

My mom is currently going from "They can't guarantee that he'll make it through the night" to "he's doing so much better. When he gets out of the hospital blah blah blah." I know you're not his doctor or God so you can't tell me for sure, but how do I know when I need to drop what I'm doing to travel to see him, when this could be a long term illness? It's my last semester of school. Also, my grandmother will pay for my tickets. Also I'm 29 and married.
posted by bash to Human Relations (31 answers total) 4 users marked this as a favorite
 
Will you regret not seeing him one last time if he dies sooner than you expect? If your answer is yes, go now. If your answer is no and you'd rather be there to support your mother after he passes, then wait. (He signed his living will today, but has been unconscious for the past four days? I'd want to be there simply to know what going on.)
posted by meerkatty at 7:05 PM on March 26, 2008


You'll know when you need to drop everything to go because the hospital will call you. Don't worry about that part. The human body seems to be able to endure terrible things and still not die, especially in a hospital. When it actually gets to the point of "He's going to die" they will let you know. You might want to ask the RN to list you as a point of contact and put your number in his chart.

The hard part is figuring out how much you need to be there until that point. My mom was diagnosed with stage 4 cancer in January. She died March 13th. She lived a 3-1/2-hour drive away and I made the decision to visit her once a week. I felt that any more than that and I would be driving myself crazy with self-neglect. Any less than that and I would drive myself crazy with thoughts of her being lonely.

In the end, it took a huge toll on me to keep it up. But I'm still glad I did it. And really, there's only so much conversation and sitting with someone in the hospital that you can do. After a while it feels silly and pointless. Calling them on the phone is almost as good as visiting. And since you live across the country, I think that's what I would do. Call as often as you can and visit when it works for you.

Your dad probably wants you to keep living your life, even if he's dying.
posted by nessahead at 7:11 PM on March 26, 2008


Also, you might want to go soon to say those things you say at the end. Forgive him for all his wrongs, ask his forgiveness for all yours, tell him you love him and you'll be okay and that if he needs to go he should.

My mom was about to die and she woke up and I was able to communicate these things with her. It helped.
posted by nessahead at 7:13 PM on March 26, 2008 [2 favorites]


This is tough, my sympathies (on preview, for nessahead up thread too!). There may actually be no 'straight answer' that anyone can give you right now. It's so very hard to know what to do. My own experience with these sorts of situations suggests that what you say about the unpredictability of the whole thing is unfortunately quite accurate. This may mean that there is no magically good answer. Your mom's reaction and statements also seem normal -- I too am going through a bad stretch these days with a close relative and can hear myself saying similarly contradictory things within a very short span of time.

There's no way to control this stuff the way we really need and want to. When it came time for my own dad to pass on eleven years ago, we sat by his bed for hours, then left briefly for a meal. Of course he was gone by the time we returned less than an hour later.

My advice for what it's worth is that you follow your own hunches and instincts. If you can't be away from home too frequently or too long you may just have to go visit when your own schedule allows, and as suggested above perhaps to help your mother in the aftermath. Personally I wouldn't travel cross country for every "scare" that gets passed on to you, but one of them I'm sad to say will likely turn out to be the real thing. Sorry.
posted by Rain Man at 7:18 PM on March 26, 2008


What a terrible situation. My heart goes out to you -- I know this is terrible.

My mom died of breast cancer, after fighting it in and out of remission for more than 15 years, when I was only a few years younger than you. She had a great doctor, who was always extremely honest with her about what would likely happen next, given his experience with other patients. That's not to say that he was always right, but he had more knowledge than we did. If I were you, I would ask your father to give permission to the oncologist to speak with you. Then, I would ask the doctor the very question you asked here - it will be nowhere near the first time he's been asked. Then, I would add what he says to your gut feelings about what's best for you, your father, and your mother.

If you haven't talked to your advisor and professors about what's going on, now is the time to do it, just in case you must take some time off.

I know that's not a tremendous answer, but that's what I would do. No, in truth, if I were you I would just go... but that's not what you asked. How to know? Ask the person with the most experience and education -- the doctor.

A few side notes that do not necessarily mean anything to your situation (but might, I just don't know if there are procedures hospitals follow about the forms and such): My mom signed a living will only a few days before she died. Her oncologist, who had been practicing for many, many years and is a prominent oncologist in Houston, told us that her life expectancy was about 6 months; she died 6 weeks after he told us that.
posted by Houstonian at 7:20 PM on March 26, 2008


I'm sorry for your troubles, but the truth is, you can't know for sure. I think the best you can do is try and keep up regular contact, be it by phone or visiting or a combination of the two. As much as this hurt you, realize that dying is a natural process and do your best to make him as comfortable as you can, when you can. Talk with him, be with him.

Also realize that you may be there when he dies, that he may suddenly take a turn for the worst and die before you see him. You may feel guilt or shame from this, which is understandable, but as your parent, he'll be want you to stay in school and continue with your life, especially since it's your last semester of school.
posted by Brandon Blatcher at 7:24 PM on March 26, 2008


It's a tough situation to be in, and I can relate. You have my sympathies.

My dad was diagnosed with inoperative cancer when I was 19 years old. It started in his kidneys and metastasized quickly throughout his whole body and finally his brain. I had just started living on my own and he was in a hospital 2 hours away from me. I visited him frequently, and there were several "this is it" moments (in my stepmother's words) that I didn't go for, and I can't explain why, but he pulled through those just fine. Then, for the REAL "this is it" moment, I just KNEW somehow, I knew that THIS was THE moment. I sped as fast as I could during the drive and ran to his hospital room. The whole family was gathered and I was the last one to arrive. I held his hand and told him I loved him. He was comatose, but I knew he could hear me. Ten minutes later he flatlined. My stepmother turned to me and said "Amy, he waited for you to get here." It was simultaneously the most heartbreaking and most affirming moment of my life. I hope that makes sense.

I wish you the best in knowing which moment is THE moment to race home for. And I hope your father's passing is as peaceful as mine's was.
posted by amyms at 8:08 PM on March 26, 2008 [1 favorite]


According to a friend of mine who has lost several family members to cancer, the last few days of terminal cancer patients' lives they generally will stop eating and seem to withdraw into themselves. I passed this info on to another friend whose father was dying of cancer while he was several provinces away. He said it helped to have something specific to be on the alert for, though he didn't wait for these signs before flying back to Toronto.
posted by orange swan at 8:27 PM on March 26, 2008


My thoughts are with you. I lost both of my parents to cancer within 11 months of each other. I second what orange swan says. When they quit eating and begin to withdraw into themselves, you need to be there because the end is imminent. Also, they might tell you when their time is coming. Really, most people know. It's a difficult situation and there are no easy answers. I wish you the best. Follow your instincts.
posted by wv kay in ga at 11:00 PM on March 26, 2008


Go now! I got to my grandmother when she was comatose, I'm leaving tomorrow to try and catch my grandfather one last time. You never know. Hours, Weeks, Months... If you can't be there in 15 minutes, go now. You might not have another chance.
posted by zengargoyle at 11:06 PM on March 26, 2008 [1 favorite]


You may want to talk with your school about what you should do if you need to leave to be with or attend to your dad. Find out if you can withdraw, take incompletes, make alternative arrangements for finals, etc...

I once had to take off from a job for a month to be with a relative in the icu. I was lucky enough that I was able to make those arrangements. If you do end up traveling, bring a couple books. I found that I spent days sitting in the icu where no tv and no phones were allowed. I wouldn't have wanted to leave to go get something new to read, I'm glad I had something.

Good luck with everything.
posted by bottlebrushtree at 11:36 PM on March 26, 2008


Hi. I am really sorry to hear your news. It is impossible to give you a straight answer about how long your Dad has got BUT metasasised Stage IV Non-Small Cell Lung cancer has a terrible prognosis. We'd normally quote in terms of weeks (I am a UK Doctor). Speak to your school, get some time off and spend some time with your Mum and your Dad.
Best wishes
posted by steve3001 at 1:35 AM on March 27, 2008


You sound like you want to see him again before he dies. You know he is going to die soon so my advice would be to see him a soon as possible.

My mother died a few years ago, with cause of death related to MRSA. I saw her about 3 weeks before when she was in hospital and expected to recover and I'm glad I did, she was not in great condition but was able to hold conversations, etc. When the infection returned she went down hill fast and while I was able to reach her bedside before she died she was pretty much vegetative for those last 8 hours. If you want to see him before he dies go and see him now while he's himself and he can know you're there.

Practical issues: speak to your course director/tutor as soon as possible. Serious familial illness and parental bereaval count as mitigation for problems in any kind of degree. Let them know whats going on and they can lay our your options more clearly, allowing you to make a more informed choice and them to be able to respond most appropriately to your situation.
posted by biffa at 4:37 AM on March 27, 2008


oh, i have been in this situation. in one case, i never made the visit. in the other case, i came and ended up staying for 22 days, even postponing the start date of a new job, until that person died. both the guilt of missing the one and the long vigil for the other were equally difficult and it's hard to know which was preferable. neither was a parent, however.

if it were my parent, i would go ahead and go. unless you are anticipating the birth of a child, everything else can be postponed. schoolwork can be made up; work can be delegated elsewhere. you may end up going back and forth a couple of times. that's just the way it goes.
posted by thinkingwoman at 4:39 AM on March 27, 2008


Go now. As soon as you can. It sounds like your dad is more-or-less awake and able to hold conversations and make decisions and such like. Go now, and tell him that you love him and hold his hand and let him tell you how much he loves you and how proud he is of you.

Your mother is with him, he won't die alone. The important thing here is that you see him now, while he's still able to talk with you and be with you, rather than you being with him when he's unconscious and going through the end stages of death.

Go now, right away. Stay for a few days, but don't feel guilty about going back home again.

Go now and tell him the things you've always wanted to say.
posted by anastasiav at 5:38 AM on March 27, 2008


Go now, and stay as long as you possibly can. Then if you must leave, come back as soon as you can. Repeat until he passes.

This is your dad -- who created you, who raised you, whose whole life has, in some measure, been about you since the very second you were born. He's going to be gone forever. FOR-E-VER. Do you want to spend the whole rest of your life thinking "I didn't spend as much time as I could with my dad before he died because I was worried about some schoolwork"? (Hint: No, you do not.)

Other folks have mentioned that "there's only so much hospital chat you can make", but please don't dismiss the importance to your father of being surrounded by his loved ones. Even if you're not saying a word, even if you're just sitting in the room with him reading a book, he will be lying in a hospital bed facing death with his family around him. Also -- and probably more important in the very final days -- please remember that your presence likely will be a comfort to your mother, who is facing the second-highest amount of distress in this whole scenario. You're not just going there for him, you're going there for her, too.

I believe if you check with your school you will find that there are all sorts of accommodations that can be made for someone in your situation. I went through a similar situation with my mom (breast cancer), and my graduate school administrators and professors were happy to work with me to allow me to do coursework on my schedule and spend huge chunks of time away from campus while I was caring for my mother and father.

Bottom line: School will always be there. Your dad will never be there again. Family wins.
posted by mccxxiii at 7:01 AM on March 27, 2008 [1 favorite]


Having made the wrong decision with my grandmother in a similar situation, please just go and spend time with him. The cost of not doing so is a lifetime of regret. You'll never get him back. Everything else will wait for you. You'll also want to see him while he's still coherent and not all drugged up.
posted by desjardins at 7:08 AM on March 27, 2008


IANAD but I've been through the terminal cancer thing with my father and several friends. It doesn't sound to me like your father has very long at all now. Has hospice been called in? If so, you may be able to call them and get a clearer answer as to his prognosis. It's very difficult to say what's going to happen right up until the very end and then that may go faster than you think.

I'm going to nth what anastasiav and mccxxiii are saying: go now. I ended up leaving Maryland and coming to North Carolina for two weeks when my father was dying and I have never, ever regretted it - I've only regretted that I didn't get there sooner. He died a week after I got there; my mother desperately needed my help for the next week. My parents were very secretive about the whole thing at first and didn't want us to come down at all; my mother kept saying she didn't need me there. She was wrong about that.

When I got back to my job in Baltimore the psychotic HR director took me to task for not finishing a big project; the deadine had landed right around when my father died. I looked at her and said, "My father DIED." and she said, "You had a choice to stay and finish that project." I decided right then and there that I no longer wanted to work for them and I quit two weeks later. Seriously, if your school and/or job doesn't understand? Fuck them. This is a hard, terrible, life changing, defining moment and really, people who don't understand that and are willing to give you some leeway are not people you want to work for in the long run.
posted by mygothlaundry at 7:56 AM on March 27, 2008 [1 favorite]


My Mom died not long ago. We knew it was coming, but the when was not predictable at all. I visited often. The last time I visited, she was in poor shape, but she improved. My sister let me know Mom was ill, and I made travel reservations for a few days later, since my Mom often rallied. She died the next day, so my travel plans were for the funeral. It would have been good to be with her when she died, but it was much more meaningful to have gone to visit her frequently while she was able to know I was there. Most importantly, I have never heard anybody say they were sorry they visited their dying parent. Go visit as often as you can.
posted by theora55 at 7:56 AM on March 27, 2008


I have been in this situation with both my parents, many decades apart. I'm sorry you have to go through this.

When my stepmother called to say my father was very ill I immediately flew out to see him (I'm in DC and he was in LA). I spent ten days there while they tried to determine exactly what was wrong with him. Near the end of my stay the doctors told me it was terminal. I spent the last couple of days spending time with him and even delayed my flight home so I could visit him one last time. When I came to the hospital that morning he was asleep and I didn't have the heart to wake him. So I just took him in: I decided to just be there with him.

I knew the next time I flew out there it would be for his funeral. But in the intervening two weeks I talked with him on the phone and said all that I wanted to say to him. And I felt satisfied I had done my best.

I would suggest that if it's possible to be with him while he is cogent so that you can share some quality time with him that would do both of you some good.
posted by Taken Outtacontext at 10:04 AM on March 27, 2008


It was simultaneously the most heartbreaking and most affirming moment of my life. I hope that makes sense.

Amyms, I agree. Despite the sadness of my father's passing, it was a very "rich" moment for me. It was indeed affirming.
posted by Taken Outtacontext at 10:10 AM on March 27, 2008


The final moments of my father's life were absolutely horrifying. The cancer had destroyed his liver, causing ammonia and bile to back up into his blood stream, basically driving him insane. He was hallucinating wildly, completely unaware of his surroundings and not capable of interacting in any meaningful way for the last month or so that he was alive. I spent a lot of time with him during that last month, and while I wouldn't say I regret that, I will say that it laid waste to me in a way that took about a year to recover from. It wasn't a warm and fuzzy time, it was very dark and fraught with agony for all involved. I don't want to say this to discourage you, but to suggest that you prepare yourself for what might be the most emotionally intense experience of your life if you go.
posted by The Straightener at 10:50 AM on March 27, 2008


So much of this depends on your relationship with your father, and no one but you can answer that. I'm in the same situation, only I live on the other side of the world, and I've made choices in this that I know many who have posted here would think callous and ungrateful.

But at the end of the day, the only person who really needs to be okay with your decision, whatever it is, is you. Don't go out of guilt or because other people want you to, or because people tell you your a horrible child if you don't, go because you want to. Go because you have something you need to say to him. Go because you want to be there for your mom and your family. Don't go because you think you're selfish if you don't. And don't base your decision on whether you think people will approve or not.

Last time I was home, I said what I needed to say to my father and he, I believe did the same. I really hope that I get to see him again, but I've accepted the fact that I might not. I'm not flying home for every 'almost', and that means that I might not make it on time when the end does come. And I know if that happens, it will be hard but I also know that that is the right decision for me. It might not be the right decision for you, but know that if it is, it doesn't matter what anyone else thinks. My father has been 'on the brink' for more than a year - neither of us want me to put my life on hold, waiting for him to die.

Ultimately though, my point is, only you can know what the right choice is for you, and what everyone else thinks doesn't really matter. You're the one who has to live with your decision.

I know how hard it is to figure out though, and I feel for you. No matter what you choose, this is not going to be easy.
posted by scrute at 11:19 AM on March 27, 2008


My father died of a terminal illness while I was an undergraduate. At the time, he was not capable of speaking, and it was unclear whether or not he was recognizing names or faces or voices. I decided I ought to put school first. I found out he had died when my sister phoned me on a Thursday morning. I flew home on Friday, was back in class by the following Tuesday, and aced all of my final exams, which took place the following week.

For me, at least, this was a big mistake. Maybe the biggest mistake I've ever made in my life. Even if you feel like there's not much you can do to help your dad, consider taking the time off to be with your mother and the rest of your family. They may need you. You may need them, and maybe you just don't realize how much yet.

In retrospect, I really wish I had just taken a little time off and spent it coping with my dad's death and being around to support my family as they dealt with it, too.


Talk to your advisors at school; talk to a counselor. They will make arrangements for you to finish your coursework, even if you can't make it back before the end of the school year. I know this For Sure. You have to work up a little courage to talk to them about this stuff, but you will be amazed at how understanding and supportive your teachers will be. I expect that, after you've talked about the logistics with contacts at your university, things will seem a little clearer. (And be sure to talk things over at length with your partner, as well. And realize that whatever decision you will make will affect him in equal measure.)


My thoughts are with you. As scrute says, this is going to be a rough time, whatever decision you make.
posted by Spinneret at 1:35 PM on March 27, 2008


I would talk with the advisers and come up with plans. Even if you don't drop out for the rest of the semester, make arrangements so that if you HAVE to drop everything and run home, you could do so. Leave yourself the option.

I'm inclined to say "go now, while he can still talk to you" more than "be there at the end." Being there at the very end for my dad was actually an okay experience for me, but watching him decline was very hard to do. At the end, you may be being there for your mom/other family members more than you are for him if he's out of it by then.

Rough choice to make. If the doctors truly can't give you an estimate (and generally they can't), I'd just kind of leave my plans open for the moment, and not commit to anything you can't get out of, and play it by ear.
posted by jenfullmoon at 10:12 PM on March 27, 2008


My youngest brother Kevin was very sick for most of his life, with the last ten years being the worst. We had MANY scares with him, and with him in New York with the rest of my family, and me in Chicago, it was a long time of trying to gage when I needed to hang up and grab the next flight, and when I could just hang around by the phone waiting for updates.

He died last May, after routine (for him, anyway) outpatient surgery. I only got one call, from my brother John who was at the hospital to pick Kevin up. John called me and sounded very freaked out - "Something isn't right." Just from the sound of his voice, I knew this was serious, but had no clue that Kevin wasn't going to make it that night. He had been at that point so many times before, and always came through. John and I hung up when the doctors came out to talk to him, and when I called back 45 minutes later, Kevin was gone.

Kevin didn't die of cancer, so I can't share any kind of insight as to what physical symptoms you should look for before heading out. My comfort now is that I know my brother was always very proud of the fact that I built a life for myself in Chicago that I love, and that he wouldn't have wanted me to abandon it to come back to New York to wait and wait and wait for him to die. I wish that I had had more time with him, and I will miss him forever, but I did take every opportunity to let him know how I felt about him and that is what gets me past the guilt of not being there on the night he left us.

If you know that the end is near, go and have your say with your dad now. That way, if you somehow miss the last minutes of his life, you will always know that he knew what was in your heart. Believe me, that will provide a lot of comfort to you down the road.

My thoughts are with you and your family, and I hope your dad's passing is a peaceful one. Take care.
posted by deliciae at 11:48 AM on March 28, 2008


My personal calculus would be this:

If you feel like you have unfinished business with him, go immediately.

If you feel like your mother or family needs you there for comfort/help, go as soon as possible and plan to stay as long as it takes.

If you feel like you and your father have settled your accounts and your mother/family doesn't need you, then plan on leaving the moment you hear the news.

My father-in-law died of small-cell lung cancer in 2005. We had enough of an idea of what was coming that we were able to be down there for a week before he went into the hospital for the last time. But because they're in the Southeast and we're on the West Coast, we knew that we couldn't rush back and forth for every scare, so we told everyone we'd either see them at the funeral or at Christmas, whichever came first. My MIL and the rest of the family understood.

Then my mother-in-law was diagnosed with lung cancer last year (secondhand smoke cancer is real, kids). My sister-in-law demanded my wife IMMEDIATELY drop everything and get down there. My wife refused and told my mother we'd be down during her chemo to help out but she had a job and she didn't want to risk using it. We don't talk to that sister in law much anymore.

All that to say: Talk to you mother and your family. Are you needed? Then by all means, go. If you're not and you feel like you and your father are squared, then don't worry about jumping on every last plane to get there.

But make sure your family understands your plan.

And if you still are going to feel guilty for not jumping on every last plane, plan on staying after the funeral and help your mom out.

I'm really sorry about your father.
posted by dw at 3:25 PM on March 28, 2008


I have a very good friend who's mother has been diagnosed with lung cancer. I don't have any details apart from that, but he's decided to move continents to be with her and the rest of his family. He's been living in Europe for the past nine years, has a good career but he felt that he had to go back to the States. Of course, everybody is different and every situation is different (I'm not sure what I would do...) and it's harsh to judge people's actions at such a traumatic time, but in his case I and all his other friends think that he's doing the right thing...
posted by ob at 3:38 PM on March 28, 2008


Well, everyone, thanks for the help. I decided to come down here the morning after posting the question, and I think it's a good thing I did. My dad is pretty sick, and I think he might actually die while I'm here. It's really awful to watch. Thanks for the help and well-wishing.
posted by bash at 10:20 AM on March 29, 2008


My father died of cancer 8 weeks ago.

Diagnosed 3 years ago , his health deteriorated rapidly last year.
He lives in Ireland and I was able to take my children to see him in June which was great fun for everyone. In November , my mom told me that he was going downhill fast and I took the opportunity to visit again with two of my children. We took the opportunity at that time to spend time together (my father and I) and talked about everything.

When I got the call 8 weeks ago that he was in rapid decline I flew over alone the next day.
As it happens I missed him by about 30 minutes. Whilst I was disappointed not to have seen him one last time I was greatful that his suffering was over and so very very thankful that we had had that opportunity in November.

During that November trip we had gotten our chance to reconcile what few differences remained between us and so being there when he passed was not AS important. It was far better than some last minute frantic dash to make sure he knew I loved him.

Take what opportunity you can now to talk with him.
Don't force your agenda on him , let him tell you how it is.
You have a future to look forward to and he doesn't. Give him his opportunity to talk about whatever he wants to share about his fears and hopes. Don't let pride or grudges get in the way.Forgive him everything. I know too many people who didn't get or take the chance I had and it makes the inevitable that much harder to endure.

It may seem mercenary to get your goodbyes in before the last minute, iut may seem macarbe, but I know I am thankful that I did. take the opportunity while you can.
posted by Damhna at 12:30 PM on March 29, 2008


Just saw your last post.
Bear up.
Good Luck.
posted by Damhna at 12:30 PM on March 29, 2008


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