Mom and I are on information overload and dad seems non-chalant

Linda3D Member Posts: 10
edited March 2014 in Esophageal Cancer #1
Hello. Me again. My father was recently diagnosed with inoperable stage IV esophageal cancer. He begins chemo on Tuesday, March 9th.

I'm sure what I'm about to describe is typical but I'm looking for suggestions how to handle it. We've been getting a good bit of information from the doctors so far plus my mother and I have been reading everything we can find. Dad on the other hand seems very non-chalant about it all. Mom and I are concerned he's not taking it seriously enough but we also realize that we may be taking it too seriously. I mean, it has only been a week or so since he was diagnosed. Here are some examples:

In chemo class Wednesday we were told the importance of hand washing and it was suggested that we buy some hand sanitizer to keep with us to use (for instance) when arriving at church and leaving church after shaking everyone's hands. We were told not to go crazy with it and use it after every person as that would be insulting but to use it after you greet everyone and sit down or after you leave and get to your car. Also it was suggested to use it before and after touching your face and before eating anything. For instance, mom put some snacks in dad's office for easy access. We told him that before he eats anything (you know, after he's been on the computer, reading, doing something at his desk, etc.) he should use the hand sanitizer first. Dad's response to all of this was he doesn't see himself using it at all. (It didn't start off as a dissertation. We told him we got some for his office to use before eating and he said he didn't see any reason for it there. We tried to give examples.) The bottle we gave him to carry with him is still on the counter where we handed it to him

Everything we've been told and have read talks about the importance of nutrition before and during chemo. The doctors have mentioned things like Boost or Ensure, drinking at least 6-8 glasses of water per day, eating several smaller 'meals' rather than 3 larger ones, eating whenever you can to build yourself up. Dad MAYBE drinks 1-2 glasses or water a day, "tries to get at least 2 Ensures/Boost" but sometimes only drinks one (doctor said 3 per day), and sometimes goes half a day without eating. You know, nothing after 'lunch' until bed.

Then he got his infusion port on Friday. He was was given this packet that contained a wallet card, rubber bracelet and a keychain thing. He was told to keep at least one of these at all times. Of course, the packet is on his bookshelf unopened, next to the unread book from chemo class that we're supposed to read before chemo starts Tuesday.

For all this, mom and I decided we need to stop trying to talk to him about it. That if he gets sick or an infection or loses too much weight or gets too dehydrated, the doctors will something about it. And if he still doesn't do it, the doctors will talk to him again (and again and again). That maybe what it will take is him getting sick or not being able to get his chemo because of dehydration but we're not talking about life and death here, right?

But then yesterday, 24 hours after the infusion port was placed and he was told to NOT exert himself for two days and to NOT use his right arm for anything strenuous for two days and to keep the area dry for 7 days, he used his arm. My parents have a big computer desk they were getting rid of. Someone from the church came by to get it and dad, being ever-helpful, helped them move the desk out of the basement and up onto the truck - 24 hour after surgery. When mom found out she was speechless and walked away to keep from saying anything. She later remarked, "He's a grown man. Why would he do something this stupid?" Dad, of course, says he didn't use his right arm - well, only to balance with but then he said he was holding one end and the other man was carrying the other end. This is a heavy desk. How could he NOT use one of his hands? If you lifted it with one hand the front (or back) of the desk would tilt forward. It doesn't seem possible to not use one hand.

The bottom line is this does sound dangerous. When we suggested that he keep an eye on the area for bleeding under the skin he got irritated and said we were being ridiculous that he didn't use his hand.

I know, I know, mom and I are on system overload and probably hounding dad with far too much information but dad just doesn't seem to be taking this seriously. And the more he doesn't seem to be taking it seriously the more mom and I hover. We tried to explain that if he...if when asked him if he's eaten lately or if he's drinking water he replies, "Yes, I had something about an hour ago" or "I've managed to get 3 glasses down" or SOMETHING we wouldn't keep asking but right now all he answers is stuff like, "I don't know. I think I had a glass of water this morning." or "I've never been one to dot my Is and cross my Ts like that. I'll eat what I eat." And he has never had to account for everything he puts in his mouth before, no one has. But mom frequently finds no signs that he's eaten anything. No empty fruit cups, juice or ensure bottles, no plates or glasses in the sink, none by dad and when he says things like, "I haven't eaten anything yet but I'll get something in a bit"'s like he's not trying.

At the doctor's office dad said he wanted to fight. It doesn't looking like he's fighting though when he seemingly disregards much of what he is told to do and doesn't seem interested in reading what he's been given to read. There's a calendar in the back of the chemo book for dad to note any side effects and their severity. (Like N for Nausea and 3 for severe - N3). Supposedly he's to note the dates and times of them and take it back to the doctor so they can adjust the medicine if need be. I see dad being like he's always been and understating everything. "I felt a little nauseous at times." Hardly information to assist doctors.

I know. Enough. So please, help us figure out how to handle this. I figure the right way to look at this is somewhere between us and dad we need to get the doctors to sit down with dad and MAKE him understand how important what they are telling him to do is or is it okay if he starts doing it little by little in his own time? Does that make sense?


  • K_ann1015
    K_ann1015 Member Posts: 500
    my dad is a lot like your dad
    I will try to keep this short---because I feel like I am responding too much sometimes! But your dad sounds so much like my dad! Also--there is the very natural difference between females & males, patient & caregiver. My dad was so similar, but finally when the nutritionist & surgeon told him if he didn't get 6 ensures in a day (he wasn't able to take in much at that time)---that he would NOT be able to have the surgery that was planned. Well---that surgery was my dad's GOAL... you will need to find out what your dad's GOAL is...and work towards it. Also---I think he still needs to feel like a "man", not a child. I think if he has some control, respect, choices, etc---you can be effective in your "(creatively put at times) "suggestions'. I think if you hit him over the head with "suggestions" (even though very well intentioned), he may push back---even subconsciously.

    His whole being has cancer, not just his esophagus, or his "body"---cancer is a "threat" to his whole sense of self, way of life, psyche AND body... I think it is very important to keep this in mind. He may be taking this much more seriously than you think---but choosing to move on differently than you or I would. I think you can only "inform" him and let him know how much you love him---"Dad, that's why we think _______(fill in the blank) is so important". THEN---the hardest part---step back.....say a bunch of prayers and try to facilitate your "suggestions". Having many different food items that MAY be appealing might help..puddings, shakes, modified version of his favorites, etc. I found that it was stressful & difficult for my dad to HAVE to eat---but once it was put on HIS shoulders---he CHOSE to do it--or couldn't have surgery. My mom had tried everything--(stressful to her!), but him having to make the choice and doing it---made the difference.

    You & your mom have to think positively and not stay in total fear mode or he may retreat more. Even when you are scared out of your wits---you can find a silver lining out of something--- I see so much of our situation in yours that reminds me of us---so have hope---take a breath---give dad credit & love even if he is being his macho self! It is just too hard sometimes for someone to totally "act" sick/concerned all of a sudden. He is probably still adjusting to this blow---he just re-acts differently than you & your mom.

    Bottom line--he is so lucky to have BOT of you to love and support him. But you don't have to feel like you are totally responsible for everything HE chooses to do. I think he will come around with a little guidance, freedom, love & prayers for WISDOM! :)
  • MOE58
    MOE58 Member Posts: 589 Member
    Hi my name is Lori, I have been a caregiver since April 1 of last year, when at that time was my husband of only being 45 years old, he was always stubborn and did not like to be told what to do, nor ever went to the doctor. Well I will say once he was diagnosed we went to a Chemo Class, and that was such super information, he listened very well to it and we went right by the book, yes your father is going to be very surprised when this all starts, Chemo is not a nice thing, Things he did before he will not be able to do, things he ate he will not be eating, he will loose hair of all kinds, he will get sick, break out with mouth sores, which is very hard they can break out and go all in the back of your throat, and its very hard to eat, only puddings, milkshakes, boost, things like that, no pop, gatorade, or things with acid it will be very painful, and he will scream at you be hateful to you, and you will wonder is this my father/husband, he will do things he never did, he will be tired alot, and he won't have alot of energy, he will sleep more, and trust me, he will not be your best friend. There were days that I thought OK I am not going through this again, and I would PULL UP MY BIG GIRL PANTIES and move on. There were times I would go to the bathroom and just cry, and believe me your mother will, it sounds like they have been married for a very long time, but this she will not like. Your father will be iritated and wonder how much more can he take, you are right its entirely up to you, but if you don't nag at him, then he will give up, just know you are doing the right thing, but right now, he feels good, and so he thinks that its going to be the same, once his Chemo starts, and he has a couple of doses I think you will see a change, if you don't then he will be in denial. Being a deacon of the church good luck if he is able to continue doing that, as this will very much take a toll on him. Your family will become stronger but you have to be there for your mother. Its a very hard road, but you do have to contact the chemo doctor, if he spikes a fever, nauseas anything like that, cause he will be put in the hospital if he don't follow commands, fortunately mine was in good health other than smoking when he started all this. I can very much relate to all this in the beginning. We started last April had surgery in July and recoupment is and was for a very long time, it is hard to believe that it will be a year in less than 3 weeks, and it was a very long road to succeed. You will come on this board quite often and ask for help and please know we are all here for the same reason, and most of us have all had the same problems, some with different problems and some with the same. Please know we are here to help and if I can help in anyway please let me know.

    I wish you and your family the best of luck, but one thing you will need to do is pull out your BIG GIRL PANTIES, and know you will need these often.

    Take care and GOD bless, hope i helped some.

    Lori aka MOE
  • chrisk06
    chrisk06 Member Posts: 110
    Sounds familiar
    WOW~~~~~I think I just read my husbands experience. I will tell you first off that My husband lost his battle to this beast. I sometimes wonder if he hadn't been so stubborn, and listened to his doctors would he still be here. Could he have been strong enoug to do another round of chemo when the cancer came back. Steve's port went bad and he got a blood clot in his neck. My answer was the Motorcycle ride he took the next day. He NEEDS to listen and if at all possible drink the water and the ensure. He needs to tell his Dr.s the way that it is. They can't help him if they don't know. He will get a big eye opening experience with the cancer. It's mean and nasty and unfortunatly the treatments are too because its usually found in late stages. I also looked at it like husband was the stong one. He'd cut half his arm off and keep working. When he got cancer, he was nolonger in control, the cancer was. He couldn't do the things he use to, so he contolled what he could...when and what he ate or drank, what info he gave the Dr., I became the one to do all that for him. I am not complaining one bit, but i wanted to help him fight and so I was at every Dr. appt, when he went for his chemo treatment, i wouls spend my lunch hour there talking to the dr.

    Its gonna be a bumpy road, so keep posting and you will see how many truly wonder FRINEDS you will make on here. I still post, as you can see, because I have come to love these people! They were there for me during one of the toughest time in my life and I cherish each one of them.

  • This comment has been removed by the Moderator