Apathetic Family?

I read a lot of stories of people whose parents were distraught by their diagnosis and many of the young adults I know personally had their parents by their side when they were sick.

I was diagnosed a couple months after turning twenty. I lived in New England, my parents in Florida, so when I got the news I had to tell them by phone. They were pretty upset, and after the initial shock wore off they kept in pretty close contact with me for a couple months. My mom even came to visit me for two days.

Still, for the most part I went through treatment with only my boyfriend by my side, and after a few months the novelty seemed to wear off and my parents stopped calling to check in. I even went through a month of chemo without them calling. Now, six months after my diagnosis, every time I talk to my mom she complains about her relationship or her job, and if I'm lucky, as an afterthought, she asks how I'm feeling. Our conversations are like "Yeah, I start outpatient chemotherapy tomorrow. I'm really worried about the side effects. The last time I had methotrexate I had really bad mouth sores and I couldn't eat or drink for days." "oh that sucks. i think i might have the flu."

It has really been bothering me. I'm wondering if, because they haven't been here, they just don't grasp the magnitude of what I went through. If maybe I downplayed how sick I was to the point that they just think I had a few months of nausea. My father has flat-out told me not to send him any pictures of me since I lost my hair, which leads me to suspect that they just want to deny the fact that I am even sick.

It sucks, I don't know how to convey to them that what I went through was very difficult and life-altering.

I feel silly throwing out a long rant like this, but it has just been bothering me, and maybe there's someone else out there that has had to go through this too.

Comments

  • 15 Comments sorted by Votes Date Added
  • Viola,

    I'm really sorry that you're going through this with your family. with something this horrific going on with you, it must be incredibly difficult not to have your parents there by your side through the whole process, and not to mention the fact that they are in either denial, or just flat out don't know how to deal with the emotions they're experiencing. My situation was a little bit different because I was a bit older than you when I was diagnosed, and am married and had my wife by my side the entire time. so, while my parents weren't involved a whole lot in my treatment, I had somewhere else to go to find support. I had plenty of close friends, and some family who distanced themselves from me after I was diagnosed, and I just want to think that they couldn't figure out how to express their emotions with me, or didn't even know what to feel. I dunno, I know this isn't all that helpful...just know, that you DO have support here and I hope that when you feel you can't find it else where, you look here. Let me know if you need anything!
  • Don't feel silly, you have every right to rant! I don't know what I would have done without my parents, they gave me a place to stay while I was seeing doctors, drove me to appointments (and took me out for sushi-my favorite- after every appointment), and most importantly they've been paying all the bills. I wish I had something better to tell you, I'm glad at least your boyfriend was there for you.
  • I don't necessarily think Viola's parents are apathetic - but, to defend them a little, you are in New England they are in Florida, distance has a way of numbing things. Plus, we don't know how old they are. I'm starting to see this in my parents (I'm 52 they are in their upper 70's/early 80's) their priorities, concerns, etc, have really changed, and are becoming "strange" at times. Also, it's the "outa sight outa mind" mentality - if the situation is not right in front them it's not important. I don't agree with their actions, but, this might explain them.

    As a caregiver and more important a parent, I can't think of anything I wouldn't do for my son to help him through this ordeal.

    There's plenty of people here that will be more than happy to give you support.


    Hang in there
    Mark
    Jaredsdad
  • Viola,

    I can totally relate to what you're going through. Though my circumstances were a little different, my parents did/do act in somewhat similar ways to what you describe. They weren't that responsive or "typically supportive" parents that would do anything for their kid and be happy to help. When I was in the process of getting diagnosed, and had to get biopsied, my mom yelled at me, calling me "sick in the head" cause I thought I had cancer. Ha, so when I did.. it was hard for her to believe. The night I was diagnosed they dropped me off at my apartment after the doctor appt(cause i wasnt well to drive) and were basically like , "well good luck with everything".. and hope u can find people to help , cause they cant help.. "we have our own problems to deal with and we're not the type of people to handle something like this".... ha, cause I was? I loved handling it?

    Anyway, after tons of phone calls to social workers asking for help cause I lived alone and was too sick to care for myself, i found there really wasnt help out there for me.. to take me to appts or care for me during chemo.. i couldnt afford a full time nurse or anything... my parents kept telling the doctors, nurses they couldnt help, cause the staff would say, "stay with your parents"... cause my parents only lived 10min away; Eventually... my parents gave in after the 2nd chemo, and realized i'd have to stay with them during chemo, and my dad would have to take me to appointments. my parents do have health issues, my mom had colorectal cancer, but never felt/feels as sick as me, and my dad has arthritic pain type issues, and was pretty stressed all the time. He's the "nicer" one.. i think if my mom didnt complain so much, he mightve tried to help more willingly.. but it was pretty horrible staying with them during treatment cause they did it soooo begrudgingly... where i was like, seriously, dont help, if you are gonna be so pissed off, stressed, and miserable about it...my mom complained the whole time i was there, saying she couldnt wait to get rid of me.. and my dad just shut down and was quiet most of the time.. and would snap easily.. i understand caregiving is hard, but there was really no need to be as bad as they were..i honestly just slept and ate there, that's it.. .but my parents are pretty OCD so the change in routines etc.. really freaked them out. they wouldnt go to counseling or go out to the movies, or any support i suggested... ha, they just acted crazy

    Anyway, what i realized in their case, and dont know if your parents are the same... was that, it was true... they aren't good at coping with stressful things, especially illness... i had a lot better coping mechanisms, but just couldnt get them to do the same.. they were really scared and upset about things, ha, though they had a weird way of showing it.. and instead of saying that, they'd either lash out or act like they didnt ever want to hear about it.. .so if i needed to vent about what was going on or express fears/concerns.. they didnt want to hear it... and my mom often would say similar to your mom 's "i think i'm getting the flu comment"... .she had a sinus infection once and acting like the world was ending...and she couldnt hear about what i was going thru, because her sinus infection was so major.. lol

    Post treatment, i still havent been well enough to drive or work yet.. and though i'm able to live alone at my apartment again.. it's super difficult for me to get to drs, go food shoppin etc.. .after treatment they really wanted to "be done" and complained anytime they had to help me with something.. i tried to find other people/organizations to help me, but it's really hard and i just dont have enough local help to cover everything.. so needed my parents as emergency backup for certain things...anyway.. .a few months ago they decided to move 2 hrs away.. now most people tell me, that apparently normal parents dont move away from their kids like that when they're still sick...ha... but mine did... and now they're calmer when they talk to me, cause it's like they know they wont be called upon to deal with any of it... and so now, sometimes they can even hear about it a slight bit more... cause they know it wont affect them...

    But i have to say they werent always able to hear about it a little more... and even now, my mom will go on and on about her, talking about other stuff, and not want to know about what's going on with me.. ha, cause unfortunately, i really dont have happy or exciting stories to tell yet, i'm still struggling, that's my life.. .while my brother travels all over and just got married, so they rather talk about that... I think it's just easier for them to deal with the happy stuff, and pretend the other stuff isnt happening... they dont know how to deal, cause it's upsetting, so they just choose to ignore as much as possible... your comment about your dad not wanting to see you w/o hair reminds me of that.. if they hear about it, it makes it too real.. and then they feel they have to deal with it, and they either dont want to, cant, and/or dont know how to

    I am very open with my parents and ha, hold nothing back... and sometimes, especially at first, it caused fights/shutting down.. but as i learned how to talk to them more, and once they didnt have to deal with it directly, i was able to tell them why i get upset when they say those things..and how it seems that they dont care.. and that all i want from them is not to fix it.. but just to listen mostly and acknowledge what i'm going thru.. they're still learning.. but now that treatments over, and we've had a lot of conversations of me pointing out how hard it is to go thru and manage everything alone, etc.. especially with them gone... what that means for me.. and why their behavior makes things harder...blah blah... for them.. they've come along a bit... it's not perfect by any means... but they can at least listen to more of it now.. and every once in a while actually initiate, How are things going"... i still have to then not stay on the topic too long.. or then break it up with other "happy" things...but i try to realize it's just them, and not always take it personally..

    anyway, sorry so long.. got a bit rambly there.. but just wanted to let you know i get what you're going through.. and not all of us have those "typical parents" who do anything for them. it would always make me feel bad when a dr, nurse, or sw would go, cant your parents help you? and i always have to be like.. uh.. no..... they're different;-) But now that i can kinda somewhat understand why they are the way the are.. and that it's not that they just dont care at all.. i kinda try to accept it more... doesnt mean it still doesnt hurt at times... but i think on both ends.. we're gettin a little better dealingwith/accepting each other.. hang in there... hope you find ways to make things work for you. I survived with the support of my friends, former coworkers, neighbors, social workers, etc.. so if you cant get it from your family, look around for other resources, it can really help:-)
  • My mom was thirty-nine when was diagnosed, and she didn't really have any problems of her own besides a crappy telemarketing job and an online gaming addiction. She's been a generally insensitive person for nearly as long as I can remember and my father is actually my step-father of six years so I can't fault him as much for not being supportive.

    I'm sorry for what you had to go through Pilly. I can't imagine having to rely on my parents during all this. My dad calls me up to complain for hours about having to drive my mother to work, I shudder to think of him having to drive me to all my outpatient treatments each week. Even when I'm angry at him I'm grateful to have had my fiance by my side through everything, he went above and beyond what he had to as a caregiver.
  • It's funny you mention about your mom already being a "generally insensitive" person, cause i was going to ask if she was like that before. ha, cause mine was too, and I dont know why i thought she'd change or be different during the whole cancer thing.. but i guess some part of me expected that she'd rise to the occasion when it really counted.. but i guess people dont change that quickly.. and if anything, it seemed to bring out the insensitive side more.. but now i realize when my mom doesnt know how to deal with things.. she acts crazier, instead of just saying, "i'm scared too"..

    anyway, glad you had a great caregiver in your fiance.. and hope things improve for you with your family as time goes on..
  • caterpilly15;699 said:
    It's funny you mention about your mom already being a "generally insensitive" person, cause i was going to ask if she was like that before. ha, cause mine was too, and I dont know why i thought she'd change or be different during the whole cancer thing.. but i guess some part of me expected that she'd rise to the occasion when it really counted.. but i guess people dont change that quickly.. and if anything, it seemed to bring out the insensitive side more.. but now i realize when my mom doesnt know how to deal with things.. she acts crazier, instead of just saying, "i'm scared too"..

    anyway, glad you had a great caregiver in your fiance.. and hope things improve for you with your family as time goes on..

    HA! That's exactly what I thought! I was sure this would be different. My grandmother, her mother got very sick three years ago and my mom was very supportive for about a week, then she sent my grandmother to live with her brother and changed her phone number so that my grandmother couldn't call her. To this day we don't even know if she's alive. After my mom's phone calls started tampering off all I could think was "I'm just like grandma to her."

    I'm sad that there are others that had to go through this, but I'm glad, once again, to find people I can relate to. I think dealing with the loss of friends and family during your treatment can be the hardest part at times.
  • Ldr12Ldr12 Community Member
    Okay, I struggle with this but I think it's best I talk rather than keep it bottled up.

    When I was first diagnosed in 1999, I had support of my family as much as they could. I was just finishing high school and they helped me with everything they could from school to money etc. It was great, my extended family helped so much too. Slowly, as I started to hide more and become more withdrawn, I started to lose friends everywhere. Some friends stuck around to a certain degree, but would NOT acknowledge my cancer, and if I was sick or anything, forget it. So overall, I ended up ditching those friends which I think was the best decision I made. After high school though, my parents wanted me out of the house, but they didn't have the heart to kick me out since I was so ill. But all of a sudden I was stuck with all of my bills (which, granted, wasn't nearly what I have heard those NOT in Canada pay, but still) and ended up $20,000 in debt. I didn't speak to my parents for pretty much 3 full years after my graduation. My parents ended up focusing more on my sister who ended up just having a slight hormone imbalance. I'm not sure if they thought she didn't get enough attention before or what, but it was incredibly hard to finish treatment pretty much on my own.

    I did work very hard on repairing my relationship with my family. In the end, just before I went bankrupt they did clear my debt. I am forever grateful for that part. But they are very frugal people, very focused on money. I think they watched completely in horror as I was diagnosed again. I was completely pushed aside again with very little contact. It seemed as though they were completely disinterested in it and didn't want to really have to pay attention to it. Fortunately, I had found a much more solid group of friends, as well as some of an online community. There's more to it, but that's another story for another time.

    Now I'm not expecting myself to forget this, or completely forgive their actions. But they are still my parents, and I know they do care even if they can't show it at all. I have managed to get them to look into their reasoning for this and even go to get help for it. I hope my sister is never in this situation with my mother and father. I hope no one is.

    I did get through it, and I'm more than willing to support people because of it. Ultimately, it did make me a more compassionate and supportive person, and I am happy for that.

    Wow this was long winded. My apologies. But if anyone needs to chat about apathy from those they love, it's good to know that I'm not alone.
  • I just wanna give each of you a hug! Although my situation is a little different from a caregiver standpoint, I don't know what I would have done without my mother! My daughter is the one with cancer. I took care of her, while my mother MOVED from Texas to California to help me take care of my family (16 yo son, husband, house). She stayed for 10 months while I spent every night in the hospital with my daughter (60+ days total in patient), drove 60 miles round trip to 31 radiation treatments. She bought groceries, cooked, cleaned, laundry. For 10 months, I took care of Lauren and my mom took care of my family. THAT'S what mom's are supposed to do.
  • More hugs. I can't imagine what it would be like without my family's support. My parents are great, and my mom's parents always come out to help the family while I am sick. My mom goes with me to all my doctor's appointments which is very helpful. At the least, it's nice to have someone to talk to while you are waiting.

    I have had friends like that though. Some people are just so afraid that they can't talk about it. However, the kicker was one of my best friends in high school. I missed the first two weeks of my senior year because I was in the ICU. When I came back, she told me "It's not fair you got to take two weeks off. My parents never let me have sick days." I didn't really have a response to that... beyond not talking to her again unless I needed to. It ended up being a good decision.
  • Colleen Begley;938 said:

    I have had friends like that though. Some people are just so afraid that they can't talk about it. However, the kicker was one of my best friends in high school. I missed the first two weeks of my senior year because I was in the ICU. When I came back, she told me "It's not fair you got to take two weeks off. My parents never let me have sick days." I didn't really have a response to that... beyond not talking to her again unless I needed to. It ended up being a good decision.
    My daughter has a few friends like this. We made Lauren's room so pleasant to come home to after her first chemo (new TV, new bed, etc) because I knew she would be spending a lot of time in there. Her friends made jealous comments. They would also talk of how bad their life "sucked" for this or that. It hurt her feelings that they would take such things for granted. Unfortunately, most teenagers are ill-equipped to handle life's obstacles. They haven't had enough life experiences to relate. One of her friends even made the comment "I think it would be neat to be in the hospital". That's just someone who doesn't understand.
  • ggunnggunn Community Member
    Wow you guys, This thread makes me want to scream and cry but... I can relate from a different angle. I'm 60 My Daughter was diagnosed in May, 09 age 25 found during surgery for something else. It threw our family into that crazy upside down place where the fear can be overwhelming. While waiting for her to wake up and be moved to a room, I went into mommy mode (fix it), Dad into denial (everything will be ok) and sister into what about me. she was 18 and said..."Are we just going to sit around in this room and cry?". We called Imerman Angles (best call ever made) Jonny help me a lot because our (her) cancer was so rare he couldn't find anyone for us eventually we got a buddy after a few months and she told me a similar story about her parents as I see above, I could not believe it.

    I dropped everything...We walked through hell together and survived. She is in Remission. All I have to say is if you do not have parents who can step away from themselves to help you are doing the appropriate thing by venting here and finding new friends and new family that you can talk to and ask for help and support. My daughter has been with Stupid cancer for over a year now and they are like family to her so encouraging, inspiring, someone is always there and this new forum is awesome.

    I also believe that sometimes you MUST ask for what you want from your family and friends. Sometimes people need be told that they need to step away from themselves and concentrate on what you need. Don't let them unload all the trivia on you. Spell it out and let them know how you feel. Sometimes they will surprise you. If you say you are sick it is natural for me to want you to feel better by saying "me too." None of us (parents) can know how it feels because we have not done it. It was in my face so I could not step away. Not sure I ever could have understood it by phone! After that if those nuts fall off your tree then get busy making new friends and they will be you family as well.

    My husband is having difficulty now because he wants our daughter to be well TODAY (6 months ago when treatment finished) he needs to be reminded several times a week that it's not over when it's over with end of treatment. He's frustrated and it comes out like anger. Lots of hard work left to be done. Don't get me wrong he is a great cheerleader, provider and we were lucky to have him here to support me while I supported her he's just missing a bit of the Empathy Chip.

    As a caregiver parent of a young adult with and recovering from cancer I can tell you there where many times that I just wanted to run away and never come back. It is so hard to see your child suffering and perhaps if I were far away I could have distanced myself emotionally. She may be a grown up but she will always be my baby.

    Hope not to incoherent and rambling, If any of you need to talk let me know! I love you all and have lots share. xxoogg
  • cherrichiodo;940 said:
    My daughter has a few friends like this. We made Lauren's room so pleasant to come home to after her first chemo (new TV, new bed, etc) because I knew she would be spending a lot of time in there. Her friends made jealous comments. They would also talk of how bad their life "sucked" for this or that. It hurt her feelings that they would take such things for granted. Unfortunately, most teenagers are ill-equipped to handle life's obstacles. They haven't had enough life experiences to relate. One of her friends even made the comment "I think it would be neat to be in the hospital". That's just someone who doesn't understand.

    I can definitely relate to her! I had a lot of experiences like that, but that girl's comment was the worst. That friend was also a complainer, which is why I think it was good that we split. It wasn't something I would be able to change. Luckily, I was too tired to really have my feelings hurt and I think I realized she was speaking more out of ignorance than trying to be hurtful. You are right - teens just don't have a lot of life experience. My very best friend in high school was one of my teachers for that reason. I was going through things most teens couldn't relate to but an adult could.

    I am in college now and it has gotten better. Some of my friends have matured to where they are okay with me having had cancer/talking about it. Other people ask me questions about it, which is new to me... nobody was ever interested before. There are still some dumb people though. My roommate from last year ignores/"forgets" every time we talk about anything more serious than allergies, I think because she is scared, but at the same time, it hurts that she is not listening to me. (I just don't discuss "tougher" subjects with her and know we are never going to be super close.)

    One thing I was thinking about with my experiences - it's easier to distance yourselves from friends than family sometimes, I think. It would be a lot harder for me if this was my family (or even a long-time friend) than the friends I have "dropped" due to ignorant/apathetic comments.

    ggun, my dad was kind-of like that too. He's also a doctor, so thinks he can fix everything and how long it should take to recover, etc. He has gotten better with time though. This summer I was working at the same hospital he was in and would come hang out in his department if I got out early. I think it helped to be on the same "side" of the medical world. A lot of my out-there lingering symptoms seem more "real" to him now than I have felt him project before. Like, he would joke about me wearing sunglasses all the time but now he realizes it's something from my drugs and I have to wear them (or get a headache) and asks if I am doing ok. (I don't mind joking and he will still do that, but it's nice for him to acknowledge that he also knows it's a real problem.)
  • Ldr12Ldr12 Community Member
    It's definitely really frustrating to be without support of friends and/or family. I have found it's really important to have a balance between the two when possible. When my family was around for me, I found myself longing for people my own age just in general. All I found with just my friends was that I really want my mom and dad but they weren't there. It's tough to be without one or the other. Having that strong support network would have been nice. But at least I've found places like this :-)