This always happens to someone else...
July 14, 2009 12:03 PM Subscribe
Ten days ago, my sister-in-law (in her 40s) was diagnosed with an incurable brain cancer. Her prognosis since the surgery has improved quite a bit from the grim TTL given after the initial MRI, but there is no chance of remission.
Since then, her husband has gone from shock to game-face, but in less than 2 weeks, managing her illness, 2 kids (one of which is 9 mos old) has really begun to take its toll on him. For those who have been through this kind of situation, what affirming advice and/or strategies can you offer *him* to realistically weather the challenges yet to come, near, mid and long-term?
Best answer: It gets easier to deal with, from day to day, even if it doesn’t seem to ever get better. It’s not that he’ll get used to it. It’s that the definition of ‘all right’ will seem to change, in ways that might seem mystifying to those who aren’t dealing with everything he is. He might have to rely on others a bit more. Things will happen to him during the treatment that might strike him as funny, but will be impossible to relate to others because they deal with her cancer (my father jokes about his cancer all of the time-from talking about the chemotherapy treatments as ‘long weekends where he takes a lot of drugs’ to describing his neuropathy as being like when the White Sox won the World Series. Nobody outside of the family finds this funny).
Only deal with what he has to at this point-as trite as it is, take it one day at a time. Accept help where he can get it (and you-keep on offering help). It helps to have a few spaces where they might not know about her illness-where he can take a little breather from dealing with it 24/7.
I don’t know how old the second child is, but if s/he’s more than a toddler, s/he might have to help out a bit.
posted by dinty_moore at 12:22 PM on July 14, 2009
Only deal with what he has to at this point-as trite as it is, take it one day at a time. Accept help where he can get it (and you-keep on offering help). It helps to have a few spaces where they might not know about her illness-where he can take a little breather from dealing with it 24/7.
I don’t know how old the second child is, but if s/he’s more than a toddler, s/he might have to help out a bit.
posted by dinty_moore at 12:22 PM on July 14, 2009
While I've never been through this myself, I have had friends who've been through something similar.
And I can't stress this enough--ask for help when needed, definitely do not be afraid of leaning on others. Everyone else has their own lives to lead and aren't constantly thinking of ways to help--but 99% of the time will gladly help when asked.
Whether it's running an errand or just listening to him vent for an hour--asking someone is the first step. Next week or in 5 years from now--the advice is the same.
posted by Zoyashka at 12:22 PM on July 14, 2009 [1 favorite]
And I can't stress this enough--ask for help when needed, definitely do not be afraid of leaning on others. Everyone else has their own lives to lead and aren't constantly thinking of ways to help--but 99% of the time will gladly help when asked.
Whether it's running an errand or just listening to him vent for an hour--asking someone is the first step. Next week or in 5 years from now--the advice is the same.
posted by Zoyashka at 12:22 PM on July 14, 2009 [1 favorite]
My sincere condolences and best wishes to you and your family. I was dealing with a really rare brain tumor a year ago (I find out the results of an MRI today, as a matter of fact) and it's no fun. I hope your sister in law has a good team of doctors.
As for your brother: I'd tell him to ask for help when he needs it. He should find someone to talk to on a regular basis about how he's feeling, and he shouldn't try to do everything himself. Now's the time to call in favors and delegate. Lots of people want to help, they just don't know how. He'll be surprised at the response.
For you: in these situations it's natural for people to inquire about the sick person first, and the partner/caregiver's often pushed aside. That's not intentional (for the most part) and he needs to know that. His needs are just as important.
Lastly, people are going to react to this in all sorts of ways. Some will distance themselves, others will feel awkward. He will get all sorts of books and articles on fad diets, supplements and so on. That's how some people show they care -- they're not trying to micromanage.
The future will seem daunting and some days will be really rough. Just focus on getting through the next five, ten, thirty minutes. Set small goals.
My thoughts and prayers are with you.
posted by Atom12 at 12:28 PM on July 14, 2009 [1 favorite]
As for your brother: I'd tell him to ask for help when he needs it. He should find someone to talk to on a regular basis about how he's feeling, and he shouldn't try to do everything himself. Now's the time to call in favors and delegate. Lots of people want to help, they just don't know how. He'll be surprised at the response.
For you: in these situations it's natural for people to inquire about the sick person first, and the partner/caregiver's often pushed aside. That's not intentional (for the most part) and he needs to know that. His needs are just as important.
Lastly, people are going to react to this in all sorts of ways. Some will distance themselves, others will feel awkward. He will get all sorts of books and articles on fad diets, supplements and so on. That's how some people show they care -- they're not trying to micromanage.
The future will seem daunting and some days will be really rough. Just focus on getting through the next five, ten, thirty minutes. Set small goals.
My thoughts and prayers are with you.
posted by Atom12 at 12:28 PM on July 14, 2009 [1 favorite]
Sometimes, being the hero, the strong guy, means asking for (and accepting) help.
posted by anastasiav at 12:31 PM on July 14, 2009
posted by anastasiav at 12:31 PM on July 14, 2009
Has someone already given you contact info for the National Brain Tumor Society? They should have info on local support groups.
posted by foxy_hedgehog at 12:53 PM on July 14, 2009
posted by foxy_hedgehog at 12:53 PM on July 14, 2009
Access support services sooner rather than later. People struggle along in "cope" as long as they can and by doing so they diminish the quality of the time they have left to spend with their loved one. There's a huge amount of support available if you're willing to adopt the attitude that spending as much quality time as possible with your loved one is your number one job.
The downside is that it can feel a bit intrusive when you have a wide range of support people coming to your home on their schedule. When I was caring for my mother, there were times when I felt very dispossessed of my own home because our household routine was governed by her illness. Link up with carers organisations - they are wonderful advocates and can often bypass red tape.
This is a time for making memories - as many good ones as possible.
posted by Lolie at 1:11 PM on July 14, 2009
The downside is that it can feel a bit intrusive when you have a wide range of support people coming to your home on their schedule. When I was caring for my mother, there were times when I felt very dispossessed of my own home because our household routine was governed by her illness. Link up with carers organisations - they are wonderful advocates and can often bypass red tape.
This is a time for making memories - as many good ones as possible.
posted by Lolie at 1:11 PM on July 14, 2009
Best answer: Anybody who has or has someone close to them who has an incurable disease should read Stephen Jay Gould's truly wise and wonderful essay The Median is NOT the Message.
posted by Neiltupper at 1:31 PM on July 14, 2009
posted by Neiltupper at 1:31 PM on July 14, 2009
As others have said, he must get help from family for babysitting and splurge a cleaning service (or the family could scrape the cash together as a gift?). Beyond that, it's hard to give specific advice without knowing the ins and outs of the situation.
I know it sounds weird but he should try not to pressure his wife to get better. I've seen situations where everybody thinks that if the patient just concentrates hard and never gives up, they're bound to beat the disease. I think it's because a brain tumour is an almost invisible condition, whereas if the person's leg was irreparably damaged, you wouldn't hope that they could just will themselves better.
posted by bonobothegreat at 3:51 PM on July 14, 2009
I know it sounds weird but he should try not to pressure his wife to get better. I've seen situations where everybody thinks that if the patient just concentrates hard and never gives up, they're bound to beat the disease. I think it's because a brain tumour is an almost invisible condition, whereas if the person's leg was irreparably damaged, you wouldn't hope that they could just will themselves better.
posted by bonobothegreat at 3:51 PM on July 14, 2009
Oh, for christ's sake. I'm so sorry.
One thing I've learned about stress (which is not worthy of compare to this situation) recently, and coping with lots of demands, might sound trite but it's helped: reduce variables.
If there are ten pairs of shoes in the entrance way, get that down to five. If there are fifteen options for what to have for dinner, pare that down as well. If he has hobbies, pick one to stay with him through this (exercise would be excellent) and stick with it. Do not make choices. Don't decide which car to drive in the morning, don't pick from thirty different t-shirts, don't go shopping and wonder which kind of bar soap to get. Simplify like crazy, pick defaults, stick to them.
Take care of himself first: that's the advice they give you on airplanes--put your own oxygen mask on before your kid's, because you're useless if you go to pieces. So he needs to sleep, to eat good food, to avoid drinking too much, to get some exercise, and if he can possibly swing it, to get an hour to himself every day. Anything you or your family can do to get him out of the house will be helpful. Normalcy, as much as possible, will be helpful as well.
I wish I had more to offer.
posted by A Terrible Llama at 4:36 PM on July 14, 2009
One thing I've learned about stress (which is not worthy of compare to this situation) recently, and coping with lots of demands, might sound trite but it's helped: reduce variables.
If there are ten pairs of shoes in the entrance way, get that down to five. If there are fifteen options for what to have for dinner, pare that down as well. If he has hobbies, pick one to stay with him through this (exercise would be excellent) and stick with it. Do not make choices. Don't decide which car to drive in the morning, don't pick from thirty different t-shirts, don't go shopping and wonder which kind of bar soap to get. Simplify like crazy, pick defaults, stick to them.
Take care of himself first: that's the advice they give you on airplanes--put your own oxygen mask on before your kid's, because you're useless if you go to pieces. So he needs to sleep, to eat good food, to avoid drinking too much, to get some exercise, and if he can possibly swing it, to get an hour to himself every day. Anything you or your family can do to get him out of the house will be helpful. Normalcy, as much as possible, will be helpful as well.
I wish I had more to offer.
posted by A Terrible Llama at 4:36 PM on July 14, 2009
Also: for the nine month old: overnights with grammie and grandpa can be sanity-saver.
Babies are HARD.
posted by A Terrible Llama at 4:44 PM on July 14, 2009
Babies are HARD.
posted by A Terrible Llama at 4:44 PM on July 14, 2009
I agree with vas deference: try to make peace and try to cherish each other. Try to stay present in the moment. I'd like to warn that he (and she, you, and others) might feel like none of it all makes sense. That's reasonable and ok to feel. It doesn't make sense. But it is what is. My condolences. The family is in my thoughts.
posted by halonine at 7:08 PM on July 14, 2009
posted by halonine at 7:08 PM on July 14, 2009
Accept that people around you (work colleagues, etc.) may not know what to say. Beyond offering general condolences, people sometimes get tongue tied or start offering totally useless advice (read this book! Has she tried Omega 3?)
But it isn't your responsibility to manage their response, regardless of how they feel or who they are. That's their job. Your job is to take care of you first, so you can take care of your wife and kids. If people get awkward, just say 'thank you for your concern' and just get on to doing what it is you need to do.
Lastly, this is a devistating thing to happen. Others have managed to be present during similar difficult times - it's part of being human, I think. But still, it's always a little different when it happens to you. But if you can find those people, and surround yourself with them, that might be a good thing. I live each day as best you can. It's all you can do.
Also sending some lovingkindness your way.
posted by anitanita at 9:14 PM on July 14, 2009
But it isn't your responsibility to manage their response, regardless of how they feel or who they are. That's their job. Your job is to take care of you first, so you can take care of your wife and kids. If people get awkward, just say 'thank you for your concern' and just get on to doing what it is you need to do.
Lastly, this is a devistating thing to happen. Others have managed to be present during similar difficult times - it's part of being human, I think. But still, it's always a little different when it happens to you. But if you can find those people, and surround yourself with them, that might be a good thing. I live each day as best you can. It's all you can do.
Also sending some lovingkindness your way.
posted by anitanita at 9:14 PM on July 14, 2009
correction:
"and live each day as best you can", not 'I'.
posted by anitanita at 9:15 PM on July 14, 2009
"and live each day as best you can", not 'I'.
posted by anitanita at 9:15 PM on July 14, 2009
My mother died of brain cancer 4 years ago and I'm sitting here trying to think of something to tell you. All I can really give you to tell him is that you will get through it one way or another because you have to. You get through it because well you have absolutely no other choice.
I guess the other advice I have to give him is to not feel that you have to feel or act any way for all the random people in your life. Obviously if he has children he needs to be emotionally there for them, but he doesn't need to be emotionally there for anyone else. Everyone is going to want constant updates and to call you up crying on the phone, and really they mean well, but I found it horribly emotionally draining and I really didn't want to sit and cry with every one of my mother's friends.
If she's going to have serious brain surgery be prepared for a somewhat terrifying couple of days after and realize that it will almost certainly get better. My mother had a brain biopsy a couple of weeks after they first found the tumor. Her tumor was totally inoperable, in the middle of her brain, and honestly even a needle biopsy was insanely risky. When I saw her after she woke up from the surgery she was out of it and in a ward of the hospital with a bunch of screaming people. I borderline had a breakdown after my mother didn't realize I was her daughter (she knew that she knew me but I don't think had any idea we were related), was totally out of it, and appeared to have lost about 100 IQ points overnight. However, 2 weeks later she was more or less back to her old self. Brain things are weird and expect a lot of weird things to happen that will really screw with you. I really was not prepared for it, but learned to roll with it after awhile.
I'm sorry, I don't know if this is affirming, but I think it is helpful to have some idea what you are in for and also to know that even after your worst nightmare happens everything does generally work out ok in the end. He'll be ok one day and his kids will be too, even if the worst happens and she dies. It will be really sad, but they will all be ok eventually.
posted by whoaali at 10:05 PM on July 14, 2009
I guess the other advice I have to give him is to not feel that you have to feel or act any way for all the random people in your life. Obviously if he has children he needs to be emotionally there for them, but he doesn't need to be emotionally there for anyone else. Everyone is going to want constant updates and to call you up crying on the phone, and really they mean well, but I found it horribly emotionally draining and I really didn't want to sit and cry with every one of my mother's friends.
If she's going to have serious brain surgery be prepared for a somewhat terrifying couple of days after and realize that it will almost certainly get better. My mother had a brain biopsy a couple of weeks after they first found the tumor. Her tumor was totally inoperable, in the middle of her brain, and honestly even a needle biopsy was insanely risky. When I saw her after she woke up from the surgery she was out of it and in a ward of the hospital with a bunch of screaming people. I borderline had a breakdown after my mother didn't realize I was her daughter (she knew that she knew me but I don't think had any idea we were related), was totally out of it, and appeared to have lost about 100 IQ points overnight. However, 2 weeks later she was more or less back to her old self. Brain things are weird and expect a lot of weird things to happen that will really screw with you. I really was not prepared for it, but learned to roll with it after awhile.
I'm sorry, I don't know if this is affirming, but I think it is helpful to have some idea what you are in for and also to know that even after your worst nightmare happens everything does generally work out ok in the end. He'll be ok one day and his kids will be too, even if the worst happens and she dies. It will be really sad, but they will all be ok eventually.
posted by whoaali at 10:05 PM on July 14, 2009
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posted by tristeza at 12:11 PM on July 14, 2009 [4 favorites]