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Mom's cancer took a turn for the worse, not sure what I can do to help.
January 30, 2013 11:27 PM   Subscribe

My mom has been battling colon cancer for the last 6 1/2 years, and essentially my whole family had settled into the rhythm of her treatment, and I know exactly what I could do to help, but recently her condition took a sharp downward turn, and I feel as if I'd been blindsided without any idea what I can do now.

When her condition was relatively stable, I drove her to her chemo appointment and stayed with her until she was done, bought the groceries, picked up my brother from school - I knew exactly what I could do and had done it daily for the better part of my adult life.

But recently she was hospitalized, her cancer had spread very quickly, and it's not looking great. Her oncologist is very invested in her health after 6+ years of working together, and while she has told us to mentally prepare for the worst, she also hasn't said that she is beyond help.

My father has taken up the bulk of staying by her bedside, and she is still conscious, fairly mobile and able to speak, eat, and all that stuff. I can only visit her for 5 or so hours on both Saturday and Sunday, as someone has to stay home to take care of my little brother, who is 15 years my junior (I'm 23).

So on the weekdays, I drop off my brother at school, and I then proceed to mindless dawdle through the day until I have to pick him up again. I haven't the mind to work (self-employed, luckily), I do exercise, but that's a relatively short activity. Most of my time is spent watching stand-up or playing videogames, and I feel like a real heel because of it. Back when I had cancer my mom stayed by me day-in, day-out, and it's killing me that I can't return the favor.

My dad had also told me that he thinks I don't appear to me showing enough concern for my mom, and while I don't always see eye-to-eye with my dad, in this case I think he is right. It's not as if I am not concerned, obviously, I just feel completely at a loss for what I could do. I call her daily, but those conversations are short. I want to send her an email, but I don't know what I should say. I asked my dad what I could do, and he said that he doesn't know either and that it's something I need to figure out by myself.

None of my friends have had experience with this sort of thing, either, so I feel completely on my own here. They are all busy with school and work and all that jazz and I don't feel right talking to them about it.

So I guess my question is, how can I best help my mom at this point in time without being by her side constantly?
posted by Geektox to Human Relations (19 answers total) 2 users marked this as a favorite
 
#1 Ask your mom!!
#2 I don't see why you can stop by the hospital on weekdays while your brother is at school (driving distance, maybe). Would it be possible to stop by at lunch time and stay with your mother while your father takes a break?
#3 When my mother was in a similar situation, I bought a vinyl "whiteboard" sheet that would cling to the wall. whenever I came to visit, I would draw a picture or write a quote or leave a message that she would let her know that I was thinking of her when I wasn't there. YOu could also use post-it sheets to do something similar. Maybe you could also help your brother make one for her - he must be wanting to do something too.
posted by metahawk at 11:36 PM on January 30, 2013 [4 favorites]


Oh Geektox, that is a world of sorrow, and you are still so young. I am very sorry for what you are going through.

There is no right or wrong way to experience stress. If you can talk to your dad, can you try to tell him that? Tell him you are processing things in your own way?

As for your mom, metahawk is right: ask her what she needs from you. The whiteboard idea is adorable. If not a whole email, what about sending her pictures or videos that you find online, that make you think of her? Could you write her a letter in longhand? Could you tell her what you remember of your cancer, and tell her how she helped you then and what it meant to you?

Try to reach out to your friends. They are busy, and some may let you down, but some may be waiting for you to approach them, and very willing to listen.

You took her to chemo, you bought groceries, you are caring for your brother: your mother must know how much you love her. Please be kind to yourself. You and your family are in my thoughts.
posted by rdc at 11:41 PM on January 30, 2013 [4 favorites]


Please do not be offended by your dad's saying that you don't appear to me showing enough concern for your mom. He is probably frustrated by the possibility that there is not much to do.
Your brother is very young. If your mother is considered terminal, perhaps you could gently prepare him for the inevitable. He may be really in need of hugs and kindness.
posted by Cranberry at 12:09 AM on January 31, 2013 [2 favorites]


Could it be that your dad is overwhelmed by being at the bedside all the time? And maybe he wishes that weren't all on him, that someone else could take some of it, so it comes out as "you aren't showing enough concern." And maybe thats why he can't come up with something more you should do, because it's not really rational - there's not much more you could do.

But maybe you could spend some more time at the bedside and he could spend more time with your little brother instead? Or maybe there are things you could do for your dad instead, so that he feels supported emotionally himself, while he has to give the bulk of the in-person emotional support to your mom?
posted by cairdeas at 12:39 AM on January 31, 2013 [2 favorites]


My father-in-law succumbed to colon cancer after battling it for several years. It's tough. If you can, bring a book and hang out with your mom.
posted by KokuRyu at 12:47 AM on January 31, 2013 [1 favorite]


I can relate to a lot of your situation. My dad was ill for 5 years before dying of colon cancer and yes, there can be a bit of routine going on during the more predictable treatment periods that makes accepting that things have turned for the worse harder. I, like you, was not ready for the rapid slide at the end of the illness and I was not emotionally aware enough to really help anyone. You are asking this question which is more than a lot of people do.

I don't know what you should do. I would suggest though, that you be open with both your parents. Ask what you can do for either of them. Simply be there with them. Be emotionally open and communicative. That last can be really hard but I really do think it's incredibly necessary.

You won't regret being available, open and present.
posted by deadwax at 1:45 AM on January 31, 2013 [1 favorite]


Seconding the suggestion to ask your mom what she wants/needs from you, but be aware that she may not know exactly what she wants and/or may find it difficult to express her needs. Be patient and keep working on communicating.

A couple of specific suggestions: speaking as a mom, I expect that she is interested in hearing mundane details about your and your brother's lives, e.g., how you spend your time, who you hang out with, movies you've seen—anything that would help keep her connected to your world. Also, I would very much enjoy being read to (not a universally shared desire, of course).

I'm so sorry you are dealing with so much at such a tender age.
posted by she's not there at 1:46 AM on January 31, 2013 [2 favorites]


I had a very similar experience three years ago. Be strong, be open with everyone including your mother, express love as much as possible, accept the negative and selfish emotions as they come (the stress and anguish are epic - you know that), and your mother may change a lot with illness and drugs. You can't live at the hospital, but you can make the visits special and memorable. Sharing a burden like this isn't equal across family members, you all have a unique and different relationship to your mother - be kind and understanding to your dad - it's a different kind of pain for him and you all need to be united. I used to text my dad (him in hospital) about trivial things during the day or phone him when I couldn't (or couldn't face) visiting. Guilt is an inevitable part of all of this nomatter whom it's happening to - just allow the guilt and try not to beat yourself up about it. I won't say prepare for the worst - no one knows how to prepare for something like this, but right now try to make positive, practical life and career plans for yourself and your brother for the next few years, regardless of what else is happening. That's what I wish someone had said to me. Your life is ongoing and it must not stop altogether or what's the point of all this?
posted by Hugobaron at 3:12 AM on January 31, 2013 [1 favorite]


First, my deepest sympathies - I lost my mother to cancer when I was in my early twenties, so I know how tough your situation is.

One thing that strikes me is that you and your father seem to be shouldering the whole burden between the two of you. I think you need to reach out to other people around you. Just as you are saying I don't know what to do to help there are probably lots of friends, neighbours and relatives who are thinking the same, and would be glad to help if asked.

I think you should try and arrange at least one midweek visit as well as getting to the hospital at weekends. If the time your brother spends at school is not long enough for you to make it to the hospital and back, why not arrange for him to go home with one of his school friends for maybe three hours. So on Wednesdays, for example, you could drop him at school, go straight to the hospital, and collect him from his friend's house three hours later than you'd normally fetch him. Or you may have neighbours who are around during the day, who could collect him from school and keep an eye on him for a few hours, while you make that mid-week visit. (His friends' parents and your neighbours will probably be delighted to help, and might in fact be mortified if they realised how much they could have helped and were never asked).

Also, the 'mindless dawdling' sounds as if it's not doing you any good. Think about making a short outing one day a week to somewhere interesting and taking photos, so that you'll have something to talk about on your next visit. It's far more cheerful to be able to tell your mom "I went to see the snowdrops in the Botanic Gardens yesterday, look, here are some photos on my phone" than trying to skirt around the fact that you haven't been doing anything except dawdle around.

Keep strong and look after yourself!
posted by Azara at 4:22 AM on January 31, 2013 [4 favorites]


How about offering to trade places with your dad some weekdays. Your little brother is 8 years old, his mother is hospitalized and his father is focused on his mother ... he needs his father! If you could trade mom-sitting / kid-raising duties with your father more than just weekdays/weekends, it would be good for everyone involved.
posted by headnsouth at 4:23 AM on January 31, 2013 [3 favorites]


Back when I had cancer my mom stayed by me day-in, day-out, and it's killing me that I can't return the favor.
As someone noted upthread, unless your mother is two hours away from you, I sortof don't see why you can't return that favor, at least to some degree, even if just to give your father time to go to a coffee shop or walk in the sunshine for a few blocks, or both of those.

I want to send her an email, but I don't know what I should say.
No email. Not email. And for all that is decent and good in this world, no texts, unless to tell her you're almost there, and does she want chocolate or strawberry ice cream from this little store up the street. Really though, if you can't make it, write her a note, on nice paper, and ask your dad to give it to her, or mail it, whatever. As far as what to say, you just say what you'd say if she was right there in the room with you, that your boyfriend still smokes those stinkin' cigars and you want to choke him, that you love the light in the dining room in the January sun, tell her that the car you just bought handles so well in the snow, just as you'd hoped...

I asked my dad what I could do, and he said that he doesn't know either and that it's something I need to figure out by myself.
He's telling you that it's time for you to think for yourself. Honestly, I think he's telling you to grow up, in not so many words, or, rather, in different words. Note that I am not saying that, just that I think it might be what he's saying. He may be right, but you're the one who gets to decide that, and you maybe won't know for years.

~~~

Your mother wants the same things everyone wants -- time, attention, to feel cared for, cared about. In a word: Love. This whole thing that so many people have about not knowing what to say or how to say it, in times of grave illness, in the proximity of death -- I understand it, I do, but from what I've seen and experienced, that whole self-consciousness about what to say or do or think, that jive has to hit the floor, you just don't have time for it in the face of serious illness. Let it drop. Be with your mother, as you can, if you can.

The only time I'd say that's not the case is if you're so caught up in self-consciousness and/or grief that your mother would end up having to take care of you, emotionally, as she's got enough going on emotionally already.

~~~

I mostly learned how to do this being present thing by having friends who damn sure have had lots of dark nights of the soul, plus I've sure had plenty of them myself, to the point where I'm comfortable in those situations, often I'm able to shine in them, I'm like "Well damn, I'd have a nervous breakdown except I've been through it too many times to be nervous about it."

You don't need to know what to say. That's the self-consciousness -- let it drop. Just talk about whatever she loves -- knitting, computer programming, family, friends, her dog or cat. Honestly, you're going to hear one hell of a lot less about knitting and/or computer programming than you'll hear about friends and family and dogs and cats -- no one gives a shit about that new car or computer if their life hangs in the balance, they want to talk about people they love, likely want to talk *to* people they love, if that can be done easily, without things being awkward.

~~~

Cancer is just so goddamn loathsome, it took my brother almost three years ago -- lung cancer -- it tore right through him. I couldn't be there -- I'm in Austin, he lived in Phoenix, I'd gone to see him three months before his death, both of us knowing it was our last time together -- I couldn't be there, even talking to him on the phone, I'd get off that fucking phone and cry and cry, it was like I was gut-shot, except it was in my heart, too. It came on so fast, it took him so fast -- four months from diagnosis to death -- we were caught in a whirlwind.

Any-old-ways, on that trip out there, time I spent with him and his wife, you know what he wanted to do? Same things as always -- catch some movies, both in the theater and at home, eat good American food and enjoy it, spend time with friends and family. We busted each others ass same as always, having fun as we could, just for sure lots of heavy undertones all over the place.

~~~

I'm sorry you're facing this right now, that your mother is facing this, your little brother, your father. Don't hold back crying if it comes to you, it only wants to be released, it's like it wants to go through, wring us out as it moves through. If it comes, don't fight it back, let it have its way -- it's going to anyways, no matter, so just give in to it. Maybe you don't want to see your mother because you don't want to cry with her? I sure can't know, but if that were the case it's damn sure understandable, because it's awfully damn vulnerable, crying with another is about as intimate as you can get in human relationship.

I'm wishing for you the best, and peace in your heart.
posted by dancestoblue at 4:27 AM on January 31, 2013 [4 favorites]


I'm so, so sorry for what you're going through. I've experienced something similar, and I can share with you a few things I learned, but keep in mind that every experience and every patient is different. I can't tell you what you should do, because you have to be the judge of it. I can only share my general thoughts about this.

1. I disagree about the advice above that you should ask your Mom what she wants you to do. That seems to me to be putting the burden of deciding how much time you should sacrifice for her. She might be the kind of person who would never tell you to spend a bunch of time with her, for example. She has a lot on her mind already; don't ask her to come up with tasks, projects, bonding experiences or fun things for the two of you to do together. If she asks for something, of course, try to follow through, but I would not ask her a blank question of "what would you like me to do?"

2. Spend time with her. Sounds like you have plenty to spare. Bring a book, movies, your work, along with you, and just be there. She won't be expecting you to entertain her constantly. But having you around, even napping near her, might make worlds of difference. Of course, again, her personality or yours may not make this ideal, I don't know. But this would be my general advice.

3. Think about ideas where you could take some initiative about things you can do. The idea above about a quote on a whiteboard everyday sounds great. Keep looking for other ideas where you can express your love and your concerns and remind her that you're thinking about her even when you're not at her bedside.

4. You wonder what to talk to her about? Part of this is surely that you don't know quite how to talk to her about her suffering and what may come. But keep in mind that many patients would welcome the chance to talk about something else. She may love hearing about your friends, your job, crazy people you see on the street, your plans, your dreams, your jokes. You don't have to have profound things to say about her suffering.

Good luck, and I'm so sorry you're going through this at such a young age. I absolutely hate cancer. My advice is not meant to be at all judgmental about what you're doing now, but it's just a way of sharing my experience in case there's anything that can help you now. My best wishes to you and your mom.
posted by Philemon at 7:41 AM on January 31, 2013 [1 favorite]


I'm a close friend to a family so close to your situation it hurts. Three boys between 23 and 15. The mother has battled what started as stage 4 colon cancer yet spread through pretty much every organ over the last five years. The number and invaciveness of surgeries would be stupid to recall. Treatment was withdrawn about a month ago.

My current simple contribution aside from lots and lots of coffee sessions is a family meal home cooked once a week. The boys always show up. I'm a good cook. We argue, discuss, interact, share. I'm an interloper in the inevitable within their family. I'd like to think I'm enabling and easing and being a friend.

I've known the boys and their Mom and Dad for a long time. In their family it's simple; stay the same but more so. We've spoken about this a lot. It's the normalcy and the need to be a good parent that's incredibly important. So be there but still be yourself, even if that includes arguments or bad jokes. She has her passing to face, but its more likely its you and your brother's future that is foremost in her thoughts.

The next weeks and months will be hard, no doubt and there is little solace except honesty and family.
posted by michswiss at 8:06 AM on January 31, 2013 [1 favorite]


My father had lung cancer for just over 2 years and was very sick for the last 6 months. It seems like you are doing a lot of what I did at the same time, I was self employed and spent a scary amount of time in computer games, WoW had just come out and I easily spent 8 hours a day hiding in there. I say hiding because it so much easier to just play computer games or watch TV than face the fact that scary scary things were happening that I had no control over.

Go spend time with your Mum. Go sit with her, bring a tablet or a book, you don't have to talk all the time, in fact she will probably want to rest, but just being there will be nice for her. Go see her during the week, take your brother in the evening, go spend time with her. You don't have to "do" anything just be there with her, like she was for you.

If you know things she likes take her treats. Does she like a particular take out (and is not on a restricted diet pick her some up and make a surprise lunchtime visit. My Dad raved for weeks when we snuck him his favourite Japanese food in to the hospital. Even a bowl of a nice soup, or ice cream or something easy to eat. If one time you are sitting with her and she mentions something like how dry her skin is, call in the next day for a 5 minute visit with a bottle of her favourite lotion. Little things like that will make her feel loved and cared for, and give you a concrete way to help so you feel useful too.

If you can't get in. Call her on the phone. No emails or texts or bs like that actually ring and talk to your mother. Tell her all the boring shit about your day, what you and your brother are going to do after school. What so and so down the coffee shop said or how pretty the garden looks anything not about her being sick. If she's tired and weak just make it a quick call but talk to her. It is scary as hell having to deal with one of your parents being weak I get that and it's easier to distance yourself from it with emails and the like but the more you do it the less scary it gets. And, God or whatever you believe in forbid, things do not go well you will regret that you didn't make the efforts and that you lost yourself in your work and computer games. I regret it every day since my Dad passed. His last day I was so busy "working" so I didn't have to face the fact he was in the last stages of his life, that the ICU nurse watching him rang me up and basically yelled at me to get down there. It took that before I could get my shit together and realize this wasn't about me. I could hide all I liked from how scared U was , but I was not as scared as my Dad and Mum were at the time and hiding from what was happening helped no one in that situation.

TL;DR - If you are not working anyway, go spend time with your Mum.
posted by wwax at 8:13 AM on January 31, 2013 [2 favorites]


As someone who went through this, every second you spend with her now is something you'll treasure for the rest of your life (unless you are really distant or she is really mean or something). If you can't take her to a park or shopping, get her to tell you what to buy, or bring some nature documentaries or whatever mom would like, and honestly where she is at right now she would probably take any gesture you make as pure gold. Not sure about your deal, but the worst thing about my mom's cancer was that she ended up in some sort of dementia way before her body gave out and that was the HARDEST thing, just not having her mind there anymore. Ugh, best of luck.
posted by yeahyeahyeahwhoo at 8:43 AM on January 31, 2013 [1 favorite]


Ugh, I am so sorry you're going through this. It spurred me to call my brother, who was also 23 and a cancer survivor when our dad died (rapidly, though) of cancer.

He says just go. Go and be there, it's hard and it sucks and it will hurt like fire but go. He was pretty much tirelessly at my dad's side through the whole six-month ordeal. Somehow he was able to draw on his own experiences and make it a good thing for both of them.

Dad didn't much care for my company, once he got really sick; we had an awkwardness hump that we never got over, I didn't know what to do, he was frustrated with me (although in retrospect probably MORE frustrated with himself/situation)...I tried to be there, tried to be normal, but mostly I felt useless, and often I avoided visiting as a result.

Guess which one of us is at peace with the situation, 5 years later? (Hint: it is not me.)

Go. Turn off the video games and pack a book and some playing cards, and go.
posted by like_a_friend at 9:06 AM on January 31, 2013 [2 favorites]


I am going to suggest you try something. I know you mentioned you don't always see eye-to-eye with your dad, but at your age, that's normal.

Take your brother and go to the hospital when your dad is there and say, "Dad, I know you need a break. I'll take over for a while. Take brother home, get some rest, and I'll catch up with you guys later."

And then be with your mom.

You will not regret it.
posted by rhombus at 9:24 AM on January 31, 2013 [2 favorites]


Thanks, everyone. I appreciate your responses, you've given me a lot to think about.

I don't usually visit during the weekdays because that's how both my parents wanted it. During the first part of her hospitalization I did visit after my brother was dropped off, but they'd both be telling me to go as soon as I got there. I think they don't want to put that pressure on me. Our family has never really been super communicative about what we want and need, part of our upbringing I suppose, but it might be time to change that.

It's funny that the first poster mentioned whiteboards, her room actually has a whiteboard and it's completely filled with my doodles. Mom said she really likes them too.

I think I will make a short visit every other day or so. That way maybe they won't feel as if they are putting extra pressure on me.
posted by Geektox at 9:27 AM on January 31, 2013 [4 favorites]


Hi Geektox,

My mother died of cancer in the hospital - every second you spend with her is precious.

I would suggest you tell your parents that you would like to do a bit more and that you miss your mom. See if you could amend the schedule so that you get into the habit of dropping by 2x per day. Once in the morning after dropping your brother - you could share with your mom everything thats going on in both your lives and let you dad take a walk, take a shower, play tennis or recharge in some other way. Then you could come back just after lunch for a second visit (30-60 min), sit with your mom, read, talk, watch tv together, whatever, and let your dad get another short break.

The other thing I would be concerned about is when does your brother get to see his mom and dad? Could you bring your brother by the hospital? He must be terrified for his mom and really be missing her.

As you settle into this 'new normal' why do you suggest some schedule changes so that everyone gets time with your mom and your dad gets some support.

YOu have my sympathy and support - its a very difficult time. We found the best way to get through it was together, as a family.
posted by zia at 1:35 PM on January 31, 2013


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