How to balance work/life with a dying parent?
July 9, 2009 9:56 PM Subscribe
My mother has been diagnosed with stage 4 pancreatic cancer. She has decided to stop treatment as chemotherapy is not working and surgery/radiation is not an option. The oncologist estimates she has about one month left.
I have the option of taking FMLA and spending all of my time with her during her last days if I want. But I am not sure that would be the healthiest option for me.
My mother says just take a day or two a week and try to live as normal a life as possible. But I feel selfish living my life while she is dying.
Any one ever have a similar experience?
"about one month" could mean a week, or ten. But probably closer to one week. You'll have to judge how much of the rest of her life you want to spend with your mom.
posted by orthogonality at 10:14 PM on July 9, 2009 [1 favorite]
posted by orthogonality at 10:14 PM on July 9, 2009 [1 favorite]
My dad died two years ago from stage 4 lung cancer. Near the end we were there all the time, and he was aphasic from a stroke so he wasn't really in a position to argue with us, but I suspect that while you may feel guilty about living your life while she's in there dying, she'll probably feel guilty about keeping you cooped up with her.
I think balance is key here. I know that I was going out of my mind at the hospital all the time. Hospitals have a terrible vibe. If she's in a position to talk to you about this, I think a few days a week is a good balance. Take time off work, definitely. Unless if you find work actually relaxing. For some people, the routine of a regular job is refreshing, lets them think about things other than dying for a while.
Near the end tho, you'll want to increase the number of days you are there. Near the VERY end, you'll want to maybe bring a cot into the room with her. Make sure you hold her hand a lot when she is getting weaker. Often with cancer I've heard that the last thing to go is the sense of touch, even if she might not be able to see or hear you then. I'm sorry I'm being so unsubtle.
If your mom is like my dad, she won't want people to make a fuss over her, even if she's dying. She'll be grateful for your presence, but wants most of all not to be a burden to you. You taking time for yourself will allow you to return to her refreshed. It will comfort her to know you are taking care of yourself. But like I said, near the end, you might want to be there a lot, so take the time for yourself while you can.
Good luck.
posted by Sully at 10:15 PM on July 9, 2009 [21 favorites]
I think balance is key here. I know that I was going out of my mind at the hospital all the time. Hospitals have a terrible vibe. If she's in a position to talk to you about this, I think a few days a week is a good balance. Take time off work, definitely. Unless if you find work actually relaxing. For some people, the routine of a regular job is refreshing, lets them think about things other than dying for a while.
Near the end tho, you'll want to increase the number of days you are there. Near the VERY end, you'll want to maybe bring a cot into the room with her. Make sure you hold her hand a lot when she is getting weaker. Often with cancer I've heard that the last thing to go is the sense of touch, even if she might not be able to see or hear you then. I'm sorry I'm being so unsubtle.
If your mom is like my dad, she won't want people to make a fuss over her, even if she's dying. She'll be grateful for your presence, but wants most of all not to be a burden to you. You taking time for yourself will allow you to return to her refreshed. It will comfort her to know you are taking care of yourself. But like I said, near the end, you might want to be there a lot, so take the time for yourself while you can.
Good luck.
posted by Sully at 10:15 PM on July 9, 2009 [21 favorites]
The future you will likely remember the last month or few months with your mom much more than a bit of work.
- Guarantee your job cannot be taken away/demoted because of this leave
- Reconfirm terms of payment or nonpayment during this time and how long it will last
- You never know how long people really make it -- it could be two weeks and it could be a few months. Maybe there is a happy medium - work for another week and then take 3 weeks off (giving yourself another week at the end if needed). Or work for two more weeks part-time, take some time off then.
This is all assuming that you're close, and will be devastated by this loss. Let me also suggest that you look into in-home or in-hospital HOSPICE - a very different mentality than most doctors and hospitals in the west promote for end-of-life care.
Take care of yourself during this difficult time too. That means: try to shower each and every day. Take a bit of a walk each and every day (even just a few times around the neighborhood). Call one friend every few days just to cry or talk out your feelings or options. Talk to a counselor if you'd like, friends and family. There will also be a non-denominational chaplain at the hospital or hospice - they are wonderful advocates for both the patient AND their family - talk to them about your own emotions and how you're coping.
I took a few months off work and school to care for my dying grandmother. Looking back, I can't even remember what I was supposed to be missing. But I remember all of our conversations, memory-making, laughs, crys, and really really hard f*cking times. I wouldn't change it for anything.
I'm so sorry -- you have my deepest sympathies and best wishes for going through this difficult time. It will be a really hard few months but you will get through it. Just remember that -- but also embrace those tough moments, even if you have nothing "to say." You can say that -- "I don't know what to say, but I love you so much."
posted by barnone at 10:22 PM on July 9, 2009 [7 favorites]
- Guarantee your job cannot be taken away/demoted because of this leave
- Reconfirm terms of payment or nonpayment during this time and how long it will last
- You never know how long people really make it -- it could be two weeks and it could be a few months. Maybe there is a happy medium - work for another week and then take 3 weeks off (giving yourself another week at the end if needed). Or work for two more weeks part-time, take some time off then.
This is all assuming that you're close, and will be devastated by this loss. Let me also suggest that you look into in-home or in-hospital HOSPICE - a very different mentality than most doctors and hospitals in the west promote for end-of-life care.
Take care of yourself during this difficult time too. That means: try to shower each and every day. Take a bit of a walk each and every day (even just a few times around the neighborhood). Call one friend every few days just to cry or talk out your feelings or options. Talk to a counselor if you'd like, friends and family. There will also be a non-denominational chaplain at the hospital or hospice - they are wonderful advocates for both the patient AND their family - talk to them about your own emotions and how you're coping.
I took a few months off work and school to care for my dying grandmother. Looking back, I can't even remember what I was supposed to be missing. But I remember all of our conversations, memory-making, laughs, crys, and really really hard f*cking times. I wouldn't change it for anything.
I'm so sorry -- you have my deepest sympathies and best wishes for going through this difficult time. It will be a really hard few months but you will get through it. Just remember that -- but also embrace those tough moments, even if you have nothing "to say." You can say that -- "I don't know what to say, but I love you so much."
posted by barnone at 10:22 PM on July 9, 2009 [7 favorites]
Nobody ever regrets spending too much time with someone.
posted by rokusan at 10:25 PM on July 9, 2009 [10 favorites]
posted by rokusan at 10:25 PM on July 9, 2009 [10 favorites]
Fuck your job - take the time. You won't regret taking the time to be with your mother.
posted by moxiedoll at 10:26 PM on July 9, 2009 [3 favorites]
posted by moxiedoll at 10:26 PM on July 9, 2009 [3 favorites]
My friend went from taking care of his mother dying from brain cancer to taking care of his dad with prostate cancer. I know he cherishes the time he had with them. He left his job before taking care of his mom, so it's not exactly the same situation, but I know he was happy to have the time with them before they died. His parents died within 9 months of each other. I guess it depends on your relationship with your mom. If you know you'll miss her so bad that you'll regret not being with her then take the time. You only have one mom.
posted by wherever, whatever at 10:28 PM on July 9, 2009
posted by wherever, whatever at 10:28 PM on July 9, 2009
She's your mother. Think back on all of the comfort she probably offered you as a child. Wiping your nose, tucking you into bed, reading to you, loving you.
Now it is your turn to give that back to her. A job is nothing compared to the person who brought you into this world.
posted by slateyness at 10:30 PM on July 9, 2009 [7 favorites]
Now it is your turn to give that back to her. A job is nothing compared to the person who brought you into this world.
posted by slateyness at 10:30 PM on July 9, 2009 [7 favorites]
Sully's advice is one of the best AskMe answers I've ever read.
Bear in mind that the last week or two, she may be unconscious or may be too heavily medicated to communicate. You might be glad to take some time off sooner than later.
Look after yourself.
posted by bonobothegreat at 10:35 PM on July 9, 2009
Bear in mind that the last week or two, she may be unconscious or may be too heavily medicated to communicate. You might be glad to take some time off sooner than later.
Look after yourself.
posted by bonobothegreat at 10:35 PM on July 9, 2009
First, I'm so very sorry.
Because of my work, I had always lived far from my parents, so I wasn't able to be with them when they were dying (although of course I called and visited as often as I could). For me, personally, I couldn't have imagined suspending my life completely, nor would my parents have wanted me to. From your question, it sounds like you live close to your mother, so that even if you kept on working, you could see her every evening if you wanted to. Is that right?
It's not selfish to live your life as best you can while she's dying, and when the time finally comes, it's not selfish to go on living your life.
On the other hand, imagine if you kept working for 3-4 days a week. If you would regret not spending that extra time with her, then that probably makes your decision for you.
Finally, my experience has been in general that there's a lot of uncertainty in the time estimates, and I've seen people live both much shorter and much longer than their stated estimates. For that reason, you might consider not using up your FMLA up all at once if it starts to look like your mother might be in the happier category. On the sadder side, know also that the that the end might come suddenly, like it did with my parents.
I hope that your last bit of time with her is an experience that you treasure always.
posted by sesquipedalian at 10:41 PM on July 9, 2009
Because of my work, I had always lived far from my parents, so I wasn't able to be with them when they were dying (although of course I called and visited as often as I could). For me, personally, I couldn't have imagined suspending my life completely, nor would my parents have wanted me to. From your question, it sounds like you live close to your mother, so that even if you kept on working, you could see her every evening if you wanted to. Is that right?
It's not selfish to live your life as best you can while she's dying, and when the time finally comes, it's not selfish to go on living your life.
On the other hand, imagine if you kept working for 3-4 days a week. If you would regret not spending that extra time with her, then that probably makes your decision for you.
Finally, my experience has been in general that there's a lot of uncertainty in the time estimates, and I've seen people live both much shorter and much longer than their stated estimates. For that reason, you might consider not using up your FMLA up all at once if it starts to look like your mother might be in the happier category. On the sadder side, know also that the that the end might come suddenly, like it did with my parents.
I hope that your last bit of time with her is an experience that you treasure always.
posted by sesquipedalian at 10:41 PM on July 9, 2009
Sorry about your mom. I don't have any advice except that death can sometimes come more quickly than the doctor expects so keep in mind that it may not be a whole month. Also, here's an episode of This American Life host Ira Glass tries to figure out what to say to his mom while she was dying.
posted by bananafish at 10:44 PM on July 9, 2009
posted by bananafish at 10:44 PM on July 9, 2009
I've been through something similar. I certainly don't know your situation terribly well, but I'll bring up a point that I don't think has been brought up yet. I think that during my dad's last few months, I probably wasn't the best employee/coworker for my coworkers and employer to have around. Definitely work can be a pleasant distraction if you're that kind of person, but I can't be sure my employer got his full money's worth given my circumstances. Of course, that's not something I feel guilty about since, frankly, shit happens, but it might be something for you to consider.
posted by The Potate at 10:56 PM on July 9, 2009 [1 favorite]
posted by The Potate at 10:56 PM on July 9, 2009 [1 favorite]
I think take the month off, but that doesn't mean you need to spend every single moment of every day with her. This is going to be really tough, there is going to be a lot to do, and really spending half of every day with her and just going home because you are exhausted and drained will probably be the way to go. You aren't going to want to be on a schedule, you are just going to want to do whatever the moment requires. The last thing you are going to want is to have to be thinking about work or making a conference call when you just really want to continue whatever conversation you are having with your mother on a day when the pain isn't that bad.
posted by whoaali at 11:24 PM on July 9, 2009 [1 favorite]
posted by whoaali at 11:24 PM on July 9, 2009 [1 favorite]
Take doctors' time estimates with many grains of salt.
posted by so_gracefully at 11:58 PM on July 9, 2009 [1 favorite]
posted by so_gracefully at 11:58 PM on July 9, 2009 [1 favorite]
Listen, I've not yet been there, fortunately, but if you're already feeling guilty "living your life", then it's clear that you need to spend some time with her. I think balance does work, but it might be too difficult to go about your daily job while balancing this...
In the end, I think the overwhelming opinion is that you will never look back and regret not having shown up for work or "lived your life" for the last couple of months you will ever have with someone you love. You will *only* live to regret missing that time and not taking advantage of it. So balance, yes, but since you have the time-off option, consider yourself fortunate to have been granted an opportunity many people do not get—small solace, no doubt, given the circumstances, but something that you should definitely take advantage of.
Good luck. I'm also very sorry.
posted by disillusioned at 12:14 AM on July 10, 2009
In the end, I think the overwhelming opinion is that you will never look back and regret not having shown up for work or "lived your life" for the last couple of months you will ever have with someone you love. You will *only* live to regret missing that time and not taking advantage of it. So balance, yes, but since you have the time-off option, consider yourself fortunate to have been granted an opportunity many people do not get—small solace, no doubt, given the circumstances, but something that you should definitely take advantage of.
Good luck. I'm also very sorry.
posted by disillusioned at 12:14 AM on July 10, 2009
As someone who's witnessed two cancer deaths (my father and my father-in-law), I can confidently say you'll far more regret not spending the time than spending it, so take the time off work.
These things can take far longer than you expect, so if that does happen you need to make sure your work, colleagues, etc are aware that it could be a while, and that they need to be flexible as well.
In regards to your own mental health, now is the exact right time to get in touch with a support group. Don't wait until afterward; by then it will be far too late. Communication, talking, are your single best bet of making your way through this as non-fucked-up as possible, so take every chance you can get.
If you want to chat to someone feel free to PM me.
posted by Neale at 12:21 AM on July 10, 2009
These things can take far longer than you expect, so if that does happen you need to make sure your work, colleagues, etc are aware that it could be a while, and that they need to be flexible as well.
In regards to your own mental health, now is the exact right time to get in touch with a support group. Don't wait until afterward; by then it will be far too late. Communication, talking, are your single best bet of making your way through this as non-fucked-up as possible, so take every chance you can get.
If you want to chat to someone feel free to PM me.
posted by Neale at 12:21 AM on July 10, 2009
When my mom was in the last months of dealing with cancer, I called her doctor to ask if he thought it was urgent that I fly across the country to be with her after she had taken a turn for the worse. He (in my opinion wisely) told me that if I'm asking the question, then I should just make the trip (of course in this way he avoided having to try to be responsible for any incorrect prognostication). Anyway, I took his non-advice, flew across the country, and stayed with her until she died about a week later. I thus had no regrets, which for me was a critical part of being able to manage the ensuing grief.
It sounds like you don't have to travel to be with your mom, so my experience might not be exactly relevant, but the main point is just try to do your best to make sure that you don't look back and wish you'd made a different choice. (And in fact, just asking here is part of that--you are doing your best.)
posted by gubenuj at 12:30 AM on July 10, 2009 [1 favorite]
It sounds like you don't have to travel to be with your mom, so my experience might not be exactly relevant, but the main point is just try to do your best to make sure that you don't look back and wish you'd made a different choice. (And in fact, just asking here is part of that--you are doing your best.)
posted by gubenuj at 12:30 AM on July 10, 2009 [1 favorite]
Pancreatic cancer works fast. If she's at stage 4 and the oncologist says four weeks, I wouldn't count on much more than that.
Your mother says she wants you to live your life because you living your life means everything's normal. Everything is not normal. Right now, nothing is normal.
But I am not sure that would be the healthiest option for me.
I am sure that no healthy person has ever told his or her therapist, "I wish I hadn't spent so much time with my mother when she was dying. I mean, I could've been at work!"
If I could, I'd favorite barnone's comment ten brazillion times and repost it in flashing bold font.
Let me also suggest that you look into in-home or in-hospital HOSPICE - a very different mentality than most doctors and hospitals in the west promote for end-of-life care.
PLEASE pay attention to this. PLEASE. My MIL and her family insisted on the "best" care at the "best" cancer institute in the country--which led to 18 months of interventions, each one of which did nothing except patch up whatever system had gone wrong long enough to get her to the next intervention. This is a horrifying way to die. Palliative care is a very good thing.
Also: It's all about the nurses, always. Get to know each floor nurse and as many care nurses as possible. At least 90% of them are amazing.
Take care of yourself during this difficult time too. That means: try to shower each and every day. Take a bit of a walk each and every day (even just a few times around the neighborhood). Call one friend every few days just to cry or talk out your feelings or options. Talk to a counselor if you'd like, friends and family. There will also be a non-denominational chaplain at the hospital or hospice - they are wonderful advocates for both the patient AND their family - talk to them about your own emotions and how you're coping.
Yes, yes, yes. Yes. And yes.
Remember that all the other people who love you are desperate to help but they don't know what you need. Tell them. Do not be shy. Do not hesitate to ask them to pick up a prescription, bring a meal, feed your cat, do a load of laundry, anything. They just want to be told what they can do to help. Tell them.
posted by dogrose at 12:59 AM on July 10, 2009 [6 favorites]
Your mother says she wants you to live your life because you living your life means everything's normal. Everything is not normal. Right now, nothing is normal.
But I am not sure that would be the healthiest option for me.
I am sure that no healthy person has ever told his or her therapist, "I wish I hadn't spent so much time with my mother when she was dying. I mean, I could've been at work!"
If I could, I'd favorite barnone's comment ten brazillion times and repost it in flashing bold font.
Let me also suggest that you look into in-home or in-hospital HOSPICE - a very different mentality than most doctors and hospitals in the west promote for end-of-life care.
PLEASE pay attention to this. PLEASE. My MIL and her family insisted on the "best" care at the "best" cancer institute in the country--which led to 18 months of interventions, each one of which did nothing except patch up whatever system had gone wrong long enough to get her to the next intervention. This is a horrifying way to die. Palliative care is a very good thing.
Also: It's all about the nurses, always. Get to know each floor nurse and as many care nurses as possible. At least 90% of them are amazing.
Take care of yourself during this difficult time too. That means: try to shower each and every day. Take a bit of a walk each and every day (even just a few times around the neighborhood). Call one friend every few days just to cry or talk out your feelings or options. Talk to a counselor if you'd like, friends and family. There will also be a non-denominational chaplain at the hospital or hospice - they are wonderful advocates for both the patient AND their family - talk to them about your own emotions and how you're coping.
Yes, yes, yes. Yes. And yes.
Remember that all the other people who love you are desperate to help but they don't know what you need. Tell them. Do not be shy. Do not hesitate to ask them to pick up a prescription, bring a meal, feed your cat, do a load of laundry, anything. They just want to be told what they can do to help. Tell them.
posted by dogrose at 12:59 AM on July 10, 2009 [6 favorites]
"Being there" for someone doesn't necessarily mean being at their side all the time. It's OK to work or do something else to allow her the solitude she might need to come to terms with her situation.
My mantra with my late first wife (colon cancer) was "This is your show. From this point forward, it's what you want, when you want it, 24/7, until you don't need me any more. I don't have any time that you can't have and I don't have any money you can't have." I'd have stomped bunnies for her.
Her death devastated me for quite a while, but knowing that I had at least been with her made my ongoing life more managable. You have to keep from going crazy to be useful to her, so take care of you, but realize, this is a short term process and the time to step up to the plate is now. Grief is transient, but regret is perpetual.
Be the good friend she needs now. Put yourself in her place. Make sure she knows you'll be OK after she's gone and that she's done a good job preparing you to be OK. You are what will remain of her in this plane soon.
Good luck.
posted by FauxScot at 3:16 AM on July 10, 2009 [7 favorites]
My mantra with my late first wife (colon cancer) was "This is your show. From this point forward, it's what you want, when you want it, 24/7, until you don't need me any more. I don't have any time that you can't have and I don't have any money you can't have." I'd have stomped bunnies for her.
Her death devastated me for quite a while, but knowing that I had at least been with her made my ongoing life more managable. You have to keep from going crazy to be useful to her, so take care of you, but realize, this is a short term process and the time to step up to the plate is now. Grief is transient, but regret is perpetual.
Be the good friend she needs now. Put yourself in her place. Make sure she knows you'll be OK after she's gone and that she's done a good job preparing you to be OK. You are what will remain of her in this plane soon.
Good luck.
posted by FauxScot at 3:16 AM on July 10, 2009 [7 favorites]
Go, for God's sakes. I didn't. Looking back I wish I had but I just couldn't. I was too young, too scared, too much in denial. I was 20 and I wish I'd asked someone who would just have told me to go home. But your parents are the wrong ones to ask. They want to protect you and while they're dying they especially need to believe that they can. Go and make it clear that you're going as an adult with volition and love, and be there with your mom while you can.
If you CAN go, do go.
posted by Salamandrous at 5:19 AM on July 10, 2009 [5 favorites]
If you CAN go, do go.
posted by Salamandrous at 5:19 AM on July 10, 2009 [5 favorites]
This is such a slam dunk, and I don't even get along that well with my mother. Take the time off. You will never ever say "I wish I had been at work while my mother was dying."
posted by desjardins at 6:05 AM on July 10, 2009
posted by desjardins at 6:05 AM on July 10, 2009
My ex-boyfriend's mother (with whom I was very close) was given a few weeks with stage IV breast cancer (lung, bone, liver, & brain metastases) & all of her kids were there with her for those next three months, even my bone-headed ex. I spent every afternoon after work with her & overnights maybe half the week as well. She did at-home hospice, but the six of us were her primary caregivers & though it was wrenching, I don't regret it in the least. Sully's advice is spot on.
I am really sorry to hear about your mom.
posted by oh really at 6:06 AM on July 10, 2009
I am really sorry to hear about your mom.
posted by oh really at 6:06 AM on July 10, 2009
I agree with Sully.
My dad has stage 4 bladder/lung cancer, though he is healthy and hiking at the moment. I am anticipating this decision, though, and knowing him, he will not want family (other than his wife, perhaps) by his side non-stop. If he says he does, I'll be there. He will probably say what your mom is saying, and only you know whether she means it or actually wants you to be there non-stop and just won't tell you.
My other experience related to this: A friend's sister died of stage 4 lung cancer a few years ago and my friend (and I) flew across the country to stay with her for the last month or so of her life. My friend would have totally regretted it if she hadn't, partly because she would have felt guilty, and partly because her sister really needed her there because she stayed at home, with a partner who zoned out and went shopping a lot, and someone needed to help her with the toilet, sponge baths, getting through the nights, and getting together a rotation of friends who could also take turns sitting with her. Even so, she and I spent chunks of days away from her sister, eating out, taking tours of the area, walking and talking, etc. I felt it was my job to support her -- as someone to talk with, vent to, cry with, and get away from the sickroom with -- as she supported her sister.
We were with her sister when she drew her last breaths, and I was glad we were both there.
A balance that's right for you and right for your mom is what you need to find. And make sure you allow good support for yourself, whichever option you choose.
I wish you and your mom the best in these liminal moments.
posted by mmw at 6:59 AM on July 10, 2009
My dad has stage 4 bladder/lung cancer, though he is healthy and hiking at the moment. I am anticipating this decision, though, and knowing him, he will not want family (other than his wife, perhaps) by his side non-stop. If he says he does, I'll be there. He will probably say what your mom is saying, and only you know whether she means it or actually wants you to be there non-stop and just won't tell you.
My other experience related to this: A friend's sister died of stage 4 lung cancer a few years ago and my friend (and I) flew across the country to stay with her for the last month or so of her life. My friend would have totally regretted it if she hadn't, partly because she would have felt guilty, and partly because her sister really needed her there because she stayed at home, with a partner who zoned out and went shopping a lot, and someone needed to help her with the toilet, sponge baths, getting through the nights, and getting together a rotation of friends who could also take turns sitting with her. Even so, she and I spent chunks of days away from her sister, eating out, taking tours of the area, walking and talking, etc. I felt it was my job to support her -- as someone to talk with, vent to, cry with, and get away from the sickroom with -- as she supported her sister.
We were with her sister when she drew her last breaths, and I was glad we were both there.
A balance that's right for you and right for your mom is what you need to find. And make sure you allow good support for yourself, whichever option you choose.
I wish you and your mom the best in these liminal moments.
posted by mmw at 6:59 AM on July 10, 2009
I am so sorry to hear about your mom.
I spent the last five months of my mom's life as her caregiver (I had gotten laid off a month before she was diagnosed with a metastatic recurrence of cancer treated 20 years earlier). She was at home for a while and then bounced in and out of the hospital until she was put into a morphine coma and died just before Christmas. It was the hardest thing I had ever done, and I do not regret it a bit. I was offered a dream job in the governor's office while she was in chemo - that was a bit of an argument as she went heavily into "do not stop your life on my behalf," but I declined it.
Hospice or palliative care are the keys here. Because it's pancreatic and this advanced, it is likely she's having those conversations with her medical team already. You can be as involved as she will let you be. You can also talk with social workers and counselors (there's almost always one on the oncology ward) or chaplains to process your own feelings.
My dad died unexpectedly, and I don't have the closure on our relationship the way I had with my mother, because I had that time with her to process her coming death. I don't know how hard, in practical terms, it will be for you to organize this, but do it. You will not regret it, no matter how difficult the short-term issues.
[On preview, sperose is on target - when people ask how to help, tell them specifically. I didn't understand this at 24. Have a few handy answers ready: "I'd like some chicken soup," "could you get me the new issue of People," "I could use some help with the laundry."]
posted by catlet at 7:06 AM on July 10, 2009
I spent the last five months of my mom's life as her caregiver (I had gotten laid off a month before she was diagnosed with a metastatic recurrence of cancer treated 20 years earlier). She was at home for a while and then bounced in and out of the hospital until she was put into a morphine coma and died just before Christmas. It was the hardest thing I had ever done, and I do not regret it a bit. I was offered a dream job in the governor's office while she was in chemo - that was a bit of an argument as she went heavily into "do not stop your life on my behalf," but I declined it.
Hospice or palliative care are the keys here. Because it's pancreatic and this advanced, it is likely she's having those conversations with her medical team already. You can be as involved as she will let you be. You can also talk with social workers and counselors (there's almost always one on the oncology ward) or chaplains to process your own feelings.
My dad died unexpectedly, and I don't have the closure on our relationship the way I had with my mother, because I had that time with her to process her coming death. I don't know how hard, in practical terms, it will be for you to organize this, but do it. You will not regret it, no matter how difficult the short-term issues.
[On preview, sperose is on target - when people ask how to help, tell them specifically. I didn't understand this at 24. Have a few handy answers ready: "I'd like some chicken soup," "could you get me the new issue of People," "I could use some help with the laundry."]
posted by catlet at 7:06 AM on July 10, 2009
During the last year of my Mom's life, I visited quite often. She knew death wasn't far off, and it made her miserable. As well, her particular illness made her miserable. She was extremely difficult to be with. When I visited, she was often unkind, unappreciative and uncooperative. After I left, everyone told me that I'd really perked her up, and that she was so pleased at my visit.
My sister has many years experience in Hospice nursing. Mom lived with her and her family (adult children; husband overseas) for her last 8 months. Watching my sister be loving, caring and kind to my cranky, frail old Mom was amazing. She constantly touched, patted, hugged Mom, and looked for ways to be sweet, and help Mom have some enjoyment, all while being very strict about Mom taking meds and following treatment.
You can't predict how much time your Mom has. Death came for my Mom quite a few times before she actually deigned to go. Whatever time you are able to spend with her, pour on the love, touch, and fun. Movies, home movies and music are all good. If it's one week, make it a week to remember. Good luck. Please update the thread.
posted by theora55 at 7:35 AM on July 10, 2009 [1 favorite]
My sister has many years experience in Hospice nursing. Mom lived with her and her family (adult children; husband overseas) for her last 8 months. Watching my sister be loving, caring and kind to my cranky, frail old Mom was amazing. She constantly touched, patted, hugged Mom, and looked for ways to be sweet, and help Mom have some enjoyment, all while being very strict about Mom taking meds and following treatment.
You can't predict how much time your Mom has. Death came for my Mom quite a few times before she actually deigned to go. Whatever time you are able to spend with her, pour on the love, touch, and fun. Movies, home movies and music are all good. If it's one week, make it a week to remember. Good luck. Please update the thread.
posted by theora55 at 7:35 AM on July 10, 2009 [1 favorite]
In all honesty, some of this will depend on your relationship with your mother and what kind of person she is. Not all relationships with mothers are good, and not all mothers are exemplary or even a net good.
Spending all your time in her last month or so with her might mean that you can spend time talking, helping her come to terms with it, helping you come to terms with it, and winding down your relationship on a really good, loving note so you're ready to do the work of grieving when she dies.
Or it might mean that you sit there and take it while she's emotionally abusive to you yet again, or have an explosive row after she's emotionally abusive to you yet again. These can be their own form of closure too, I guess, but if that's what your relationship often went to, nobody who knows you will blame you for not putting yourself in that position all the time. And no, I don't mean by that someone who is miserable from the pain associated with end-stage cancer and is hard to be with because of that.
Or it might mean that you sit with her awkwardly without anything to really talk about while she sits in emotional denial. Or whatever.
I guess I look at the "it wouldn't be healthy for me" and wonder why, though I don't mean that to imply that you should reply to this. If you mean that it would be unpleasant to watch your mother die, that's one thing. If you say that because it just isn't healthy for you to spend a lot of time with your mother, period, that's another. In the latter case, you might do better for you and her if you keep your visits to a length and frequency that's conducive to friendly terms.
posted by ROU_Xenophobe at 7:49 AM on July 10, 2009 [2 favorites]
Spending all your time in her last month or so with her might mean that you can spend time talking, helping her come to terms with it, helping you come to terms with it, and winding down your relationship on a really good, loving note so you're ready to do the work of grieving when she dies.
Or it might mean that you sit there and take it while she's emotionally abusive to you yet again, or have an explosive row after she's emotionally abusive to you yet again. These can be their own form of closure too, I guess, but if that's what your relationship often went to, nobody who knows you will blame you for not putting yourself in that position all the time. And no, I don't mean by that someone who is miserable from the pain associated with end-stage cancer and is hard to be with because of that.
Or it might mean that you sit with her awkwardly without anything to really talk about while she sits in emotional denial. Or whatever.
I guess I look at the "it wouldn't be healthy for me" and wonder why, though I don't mean that to imply that you should reply to this. If you mean that it would be unpleasant to watch your mother die, that's one thing. If you say that because it just isn't healthy for you to spend a lot of time with your mother, period, that's another. In the latter case, you might do better for you and her if you keep your visits to a length and frequency that's conducive to friendly terms.
posted by ROU_Xenophobe at 7:49 AM on July 10, 2009 [2 favorites]
Best answer: If you're in the same town, you can maybe find a balance between job and family.
When my father was dying, I lived 500 miles away from my parents. When I realized how close it was I drove immediately to my parents house and I was with him when he died and stayed for a week afterwards to be with my mother. I then made the decision to quit my job and move down here - where I still am, 9 years later - and at my exit interview the completely insane, evil and inhuman HR director got nasty with me about missing a deadline during that two weeks. My only regrets about that time are twofold: that I didn't get down here earlier and that I didn't just clock the HR person right then and there.
When my mother died last summer we were living in the same town. When she first went into the hospital I went back and forth from work, maybe going to the office for an hour or two, then to the hospital, then back to the office. I am lucky in having an understanding boss and coworkers who were completely cool with this - no, I didn't get a whole lot done at work but somehow it gave me some kind of structure that I needed. I couldn't break down completely at the office; I had to get showered and dressed; I had to talk to people. Then as she deteriorated I stayed at the hospital. I ended up working part time for about six weeks after she died - there was an almost insane amount to do and all kinds of awful complications I hope you don't have to face - and I'm glad the time was there for me.
So, yes, you will need to be with her and you will, I think, find that you want to be with her, but if you can balance going back and forth to work at least at first, that might be more helpful than not. You have my condolences - last year was the worst year of my life.
posted by mygothlaundry at 7:54 AM on July 10, 2009
When my father was dying, I lived 500 miles away from my parents. When I realized how close it was I drove immediately to my parents house and I was with him when he died and stayed for a week afterwards to be with my mother. I then made the decision to quit my job and move down here - where I still am, 9 years later - and at my exit interview the completely insane, evil and inhuman HR director got nasty with me about missing a deadline during that two weeks. My only regrets about that time are twofold: that I didn't get down here earlier and that I didn't just clock the HR person right then and there.
When my mother died last summer we were living in the same town. When she first went into the hospital I went back and forth from work, maybe going to the office for an hour or two, then to the hospital, then back to the office. I am lucky in having an understanding boss and coworkers who were completely cool with this - no, I didn't get a whole lot done at work but somehow it gave me some kind of structure that I needed. I couldn't break down completely at the office; I had to get showered and dressed; I had to talk to people. Then as she deteriorated I stayed at the hospital. I ended up working part time for about six weeks after she died - there was an almost insane amount to do and all kinds of awful complications I hope you don't have to face - and I'm glad the time was there for me.
So, yes, you will need to be with her and you will, I think, find that you want to be with her, but if you can balance going back and forth to work at least at first, that might be more helpful than not. You have my condolences - last year was the worst year of my life.
posted by mygothlaundry at 7:54 AM on July 10, 2009
Good advice, up above. I would suggest taking the time for two reasons:
1. For some reason, doctors seem to be overly optimistic when telling people how much time they have left. For example, my Dad was supposed to have 2 months, and he had about 2 weeks. I've heard this type of story from a lot of folks. So, any time you have truly is precious & far too fleeting.
2. Just because you took FML to help your Mom and spend time with her, doesn't mean you have to be by her bedside 24-7. You will also need time to yourself to recoup whether through a nap, grabbing a quiet cup of coffee with or without a friend, running errands, or whatever. Taking care of people is exhausting, and saying goodbye to someone so dear is doubly draining. Having the time to take care of yourself, means that you will be able to be at your best when you are with your Mom, considering the circumstances.
This is going to be one of the hardest things you ever do. Surviving the months afterward will be equally difficult. I think knowing you did everything you absolutely could to make your Mom comfortable and to make the most of the time you had with her will go a long way in comforting you. Best of luck to you and your family.
posted by katemcd at 7:55 AM on July 10, 2009
1. For some reason, doctors seem to be overly optimistic when telling people how much time they have left. For example, my Dad was supposed to have 2 months, and he had about 2 weeks. I've heard this type of story from a lot of folks. So, any time you have truly is precious & far too fleeting.
2. Just because you took FML to help your Mom and spend time with her, doesn't mean you have to be by her bedside 24-7. You will also need time to yourself to recoup whether through a nap, grabbing a quiet cup of coffee with or without a friend, running errands, or whatever. Taking care of people is exhausting, and saying goodbye to someone so dear is doubly draining. Having the time to take care of yourself, means that you will be able to be at your best when you are with your Mom, considering the circumstances.
This is going to be one of the hardest things you ever do. Surviving the months afterward will be equally difficult. I think knowing you did everything you absolutely could to make your Mom comfortable and to make the most of the time you had with her will go a long way in comforting you. Best of luck to you and your family.
posted by katemcd at 7:55 AM on July 10, 2009
Spend every single moment you can with her. It is so hard being with someone dying from cancer but living without them is even harder.
posted by avex at 8:42 AM on July 10, 2009 [1 favorite]
posted by avex at 8:42 AM on July 10, 2009 [1 favorite]
My Dad was officially diagnosed with liver cancer the same week I was about to accept a job offer 2000 miles away. My parents were also in complete denial and totally unwilling to even have the conversation with the doctors about how long he had (likely a few years, w/treatment), survival rates, etc. After hashing it out with my wife, I decided to take the job, negotiated a months delayed start, and spent the time in-between at home w/my Dad during his initial chemo. Then I went back to my life, w/monthly, then semimonthly, visits and lots of phone calls/emails.
Dad died during our Christmas visit a year and a half later.
Obviously, it depends on your particular situation, but I tend to believe there's a sum total amount of time that's about right to spend with a family member that's been diagnosed with cancer. Every waking moment is far too much if you've got some time (see: my mother, still emotionally drained, 5 years later). It's not enough if you don't. We were lucky in that we were able to read the primary sources regarding my Dad's diagnosis to have a comfortable estimate for ourselves - and we decided (and were correct in guessing) that we had enough time.
You don't have enough time. Pancreatic cancer is notoriously late to diagnose and aggressive. I say this as someone with a very difficult relationship with his mother - you should take the leave and be with her.
Take care of yourself, too. In whatever way that needs to be.
posted by NoRelationToLea at 8:49 AM on July 10, 2009
Dad died during our Christmas visit a year and a half later.
Obviously, it depends on your particular situation, but I tend to believe there's a sum total amount of time that's about right to spend with a family member that's been diagnosed with cancer. Every waking moment is far too much if you've got some time (see: my mother, still emotionally drained, 5 years later). It's not enough if you don't. We were lucky in that we were able to read the primary sources regarding my Dad's diagnosis to have a comfortable estimate for ourselves - and we decided (and were correct in guessing) that we had enough time.
You don't have enough time. Pancreatic cancer is notoriously late to diagnose and aggressive. I say this as someone with a very difficult relationship with his mother - you should take the leave and be with her.
Take care of yourself, too. In whatever way that needs to be.
posted by NoRelationToLea at 8:49 AM on July 10, 2009
Mod note: This is a reply from an anonymous commenter.
Who is taking care of your mom while she is sick and dying? From what I've seen, that can be particularly draining. If you are involved in that process, I think you will finding working and supporting her exhausting.posted by cortex (staff) at 9:03 AM on July 10, 2009
I would take time off. This is what my aunt and cousin did when one of my cousins passed away from breast cancer. My cousin was working and seeing her at the same time, but found that too stressful. My cousin actually ended up just leaving work one afternoon. I don't think either regrets their decision. I think the whole process will be emotionally draining regardless of whether you are at work or not. I suspect being at work will just make it all the more draining.
By all accounts actor Ryan O'Neal has pretty much been a jerk of a man, but when Farrah Fawcett became ill with cancer he stood right up to the plate. His stock went up with everyone with how he looked after her ....especially at the end. My point (in borrowing from celebrity news) is that O'Neal seemingly learned what life was about by tending to someone he loved who was completing the circle of life. This is how we learn what life is...by experiencing all the stages of it-- not recoiling from it. I'm sure they could have afforded all sorts of professional help--but he took up the mantle. I hope you do the same.
posted by naplesyellow at 10:00 AM on July 10, 2009 [1 favorite]
posted by naplesyellow at 10:00 AM on July 10, 2009 [1 favorite]
Unless you're likely to get canned for using FMLA leave, GO NOW. Odds are pretty high you will be out for shorter than a month anyway. As everyone else pointed out, doctor's estimates are a total crapshoot and she probably doesn't have that long.
posted by jenfullmoon at 11:47 AM on July 10, 2009 [1 favorite]
posted by jenfullmoon at 11:47 AM on July 10, 2009 [1 favorite]
Grrr... didn't finish my thought last night.
It's all about the nurses, always. Get to know each floor nurse and as many care nurses as possible. At least 90% of them are amazing.
But there is that less than ten percent, and you need to know who they are. You and your mother will be spending a lot of time with her nurses, and they have near-total control over her treatment -- not the protocol itself but the hands-on, day-by-day, minute-by-minute stuff.
And finally -- I'm so very sorry you and your mother are facing this. It's going to be hard but it's something you really need to do. It'll be one of those before-and-after experiences. It'll change you, and your relationship with your mother, and your presence will mean everything to her.
posted by dogrose at 12:47 PM on July 10, 2009
It's all about the nurses, always. Get to know each floor nurse and as many care nurses as possible. At least 90% of them are amazing.
But there is that less than ten percent, and you need to know who they are. You and your mother will be spending a lot of time with her nurses, and they have near-total control over her treatment -- not the protocol itself but the hands-on, day-by-day, minute-by-minute stuff.
And finally -- I'm so very sorry you and your mother are facing this. It's going to be hard but it's something you really need to do. It'll be one of those before-and-after experiences. It'll change you, and your relationship with your mother, and your presence will mean everything to her.
posted by dogrose at 12:47 PM on July 10, 2009
Response by poster: Thanks for all of your suggestions, support, and help. I luckily live 5 minutes away from my mother. She is currently living in a skilled nursing facility. Our family decided that this was best given the care needed.
She had a stroke 3 months ago as a result of heart surgery and also previously had breast cancer (2 types) and leukemia - all within the last eight yrs. So her body, mind and spirit are growing tired.
I am an only child with no family aside from my parents. The skilled nursing allows, my father and I to have quality time and not be concerned with her daily care. She also felt this is the best option.
For the time being I am going to take one-two days a week in addition to my regular nightly visits. When her condition worsens I am going to ramp up.
Thanks again for all your help...
posted by burlsube at 8:49 PM on July 10, 2009 [1 favorite]
She had a stroke 3 months ago as a result of heart surgery and also previously had breast cancer (2 types) and leukemia - all within the last eight yrs. So her body, mind and spirit are growing tired.
I am an only child with no family aside from my parents. The skilled nursing allows, my father and I to have quality time and not be concerned with her daily care. She also felt this is the best option.
For the time being I am going to take one-two days a week in addition to my regular nightly visits. When her condition worsens I am going to ramp up.
Thanks again for all your help...
posted by burlsube at 8:49 PM on July 10, 2009 [1 favorite]
My dad went into the doctor's office six weeks ago with arthritis pains and came out with Stage 4 prostate cancer. Talk about the wind changing direction.
We're currently on a merry-go-round of doctors and blood work, tests and scans. And though we're fairly bright people we're desperately trying to make heads or tails of all of the mountains of analysis and diagnoses we're sifting through.
It's become clear (duh) that he's extremely ill. And with this remarkably obtuse revelation, we've both realized how happy we are that he moved out to be with us three years ago. It could have been very different.
I had been hammering on him in a relatively steady stream of hints, suggestions, and queries for years about when he was going to make the move. It took us giving him a grandson to pry him up from his home, and I often felt guilty because he was then isolated from his social group and his lovely home, and all his routines. It's a tough sell for a man in his early seventies to make a "fresh start," especially when he's more akin to a cranky ol' cat who doesn't want to be jostled.
But now that he's here and we walked through that door, we're both so relieved. THANK GOD HE'S HERE! Aside from the relative insanity of me either going there to care for him in his late stage cancer or him coming here, I'm just grateful that I can make sure he has comfort and fresh milk in the fridge. I can clean his house or order him stuff that he's too reticent to order for himself (thirty-year-old mattress comes to mind--I made sure that, at least, was improved.)
And I realized last night that my brother, though only a few hours by car away, doesn't have the same sense of his illness (and all the attendant emotions) unfolding; for him it's been all phone calls with greater or lesser degrees of severity, panic, and isolation instead of experiencing the smaller, more mundane but infinitely precious moments, lived outside the diagnosis and prognosis.
I will suggest to my brother, who loves his father like his own best friend, that he pick up and take a temporary leave of absence. It's too important a time, and he's missing out all the good in favor of all the grimness delivered in fits and bursts.
posted by readymade at 9:41 PM on July 10, 2009 [2 favorites]
We're currently on a merry-go-round of doctors and blood work, tests and scans. And though we're fairly bright people we're desperately trying to make heads or tails of all of the mountains of analysis and diagnoses we're sifting through.
It's become clear (duh) that he's extremely ill. And with this remarkably obtuse revelation, we've both realized how happy we are that he moved out to be with us three years ago. It could have been very different.
I had been hammering on him in a relatively steady stream of hints, suggestions, and queries for years about when he was going to make the move. It took us giving him a grandson to pry him up from his home, and I often felt guilty because he was then isolated from his social group and his lovely home, and all his routines. It's a tough sell for a man in his early seventies to make a "fresh start," especially when he's more akin to a cranky ol' cat who doesn't want to be jostled.
But now that he's here and we walked through that door, we're both so relieved. THANK GOD HE'S HERE! Aside from the relative insanity of me either going there to care for him in his late stage cancer or him coming here, I'm just grateful that I can make sure he has comfort and fresh milk in the fridge. I can clean his house or order him stuff that he's too reticent to order for himself (thirty-year-old mattress comes to mind--I made sure that, at least, was improved.)
And I realized last night that my brother, though only a few hours by car away, doesn't have the same sense of his illness (and all the attendant emotions) unfolding; for him it's been all phone calls with greater or lesser degrees of severity, panic, and isolation instead of experiencing the smaller, more mundane but infinitely precious moments, lived outside the diagnosis and prognosis.
I will suggest to my brother, who loves his father like his own best friend, that he pick up and take a temporary leave of absence. It's too important a time, and he's missing out all the good in favor of all the grimness delivered in fits and bursts.
posted by readymade at 9:41 PM on July 10, 2009 [2 favorites]
This thread is closed to new comments.
then, the day before i left, i took her to the doctor for what she thought was an ulcer. it turned out be late stage pancreatic cancer.
i didn't give it a second thought, though she thought i was crazy and kept telling me to return to england.
i gave up the london gig to stay with her. we had always had a fanastic relationship and i would have felt like a schmuck living so far away, knowing she was dying; and then coming out back again soon for a second funeral.
so, i stayed with her until the end, which i will never, ever - ever - regret; and in the process i decided, screw it, life is short, i'm going to be a writer...
posted by holdenjordahl at 10:07 PM on July 9, 2009 [4 favorites]