CSN Login
Members Online: 6

caregiver rejection

4chambers
Posts: 2
Joined: May 2013

I got home Friday night on day 3o of my boyfriends radiation treatment.  I left that day before he rang the bell. The bell rang for me the night before in his fentanyl oxycodone police threat.  We were 10 months in to the relationship, made the committment to take care of each other if we got sick, both been married and no need to do it again, and then a month later the tumor at the base of his tongue showed up.  Six weeks of radiation away from home, 24/7 w the blender, slurries, tea concoctions, support through fear, pain, drugs and more drugs, death,...and I was not able to make him feel good any more. (i edited out details of the relationship demise....) I connected with Debbie Cornwall on the web and she got me here.  The pain I have I"m sure palls in comparison to his today, I know, but i am hurting.  I have found so many wonderful people through this cancer ordeal.  I don't know how to let go, how much to hope.  I was just hoping to get to this point together...after hanging on to the back of the sled down the mountainside bump after bump...finally coming to a stop with a hug and just say "WHOA".   I guess what i didn't know that I wish someone had told me.....you can not do this alone.  A caregiver can not do 24/7 away from home for 6 weeks.  And what I hope to share with the medical profession out there is that never once did anyone ask him what else he did for pain..."do you get outside and walk?"...."do you medidate"..."what else can you do to take yourself away from the misery for just a little bit?" "do you need a different social worker you can work with?"  Then ask the invisible caregive how they are doing.  

I guess the big unknown for me now is does pain medicine change someone or does it bring out who they truly are?  

thanks.

 

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Hard to answer many of your questions....

Without you actually being married, the medical professionals really aren't obligated to involve you at all... Painful I know, but reality.., and yes, there are good doctors, bad doctors and many somewhere in-between.

Some look at their obligation as treating the patient physically, some look at treating the patient as a whole, again, most are somewhere in-between.

Meds that you describe (and others) can bring out the bad or worse side of people, even if it isn't there, or never would be under "normal" scenarios. Was he truley like, that...who knows.

There's at least one that I can think of that had as he called it I believe roid rage... The meds were acting on him as some on steroids have described..., full of rage and anger, a place they weren't at prior to the drugs.

They were smart enough and in-tune enough to question what was going on and notice that it was happening before it got out of hand. Not everyone catches it, or realizes that they are having those issues.

Will he change, again, who knows... He more than likely has an entire range of emotions and feelings going on.

I'm not sure what you future holds, but it's probably best to leave that up to him for now...(in my opinion)., and safer for you.

If it's meant to be, it will..., if not, there's nothing that you seem to have done, nor can do to change fate...

Again, sorry for your situation, but take the time to take care of you right now.

John

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

of circumstanes a 10 month relationship can bring out startling revelations about another person.....but going through this HNC treatment with someone you barely know would be a hyper strain.  The person you knew at the beginning, before the disease reared it's ugly head is probably closer to the "real thing" than the person he has become.  I can tell you that no....drugs do not bring out the real person...never ever..... they do lower inhibitions and that's why people do things stoned and drunk that they'd never do clean and sober.  That's just the drugs....he's probably in a lot of pain and misery at this juncture, and I've heard people here in very long term relationships get their feelings hurt because their significant other is simply pissed that they feel like crap and there is no way out but keep putting one foot in front of the other.

I agree with Skiffin....let things hang as they are for a while.....if you are worried about him, maybe call a friend of his to start checking in on him? 

p

PS...different pain meds affect people differently....my girlfriend who's been married for 40 years told the Dr.'s "no oxy's for him, he's a jerk when he takes them" when her hubby had his hip replacement.....so they gave him something different for pain.

 

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

the answer is "yes" the narcotics can cause personality change.  Oxycodone and all the other narcotics can cause hallucinations, paranoia, even overt psychosis.  So can severe depression, which is, of course, common enough in people facing this type of cancer and its treatment.  I am not suggesting this is the case.  But if a significant change in affect and attitude occured during treatment, that would be something that should be explored with the health care providers.

 

Wishing you the best.

 

Pat

donfoo's picture
donfoo
Posts: 1329
Joined: Dec 2012

a couple posted comments. You need to step aside just a bit and get far enough away to not receive any abusive behavior. It is certainly the discomfort, endless pain, fatigue, tiredness, depression, and lack of clarity of seeing where this is going and when it will end. None of these things you can directly alter.

Second comment is to do inform his primary providers of all these symptoms and press them to start addressing them for his and your sake.

After that, you need to try very hard to emotionally detach just enough to let him deal on his own. Things may be get worse but that along with the additional support from his medical team may bring him to see you as someone can help get him back faster and pushing you away does not accomplish that goal. Good luck. don

HobbsDoggy
Posts: 165
Joined: Feb 2013

My wife and I have been married 42 years and my cancer and treatment did very much strain our relationship.  I have no clue if we would have been able to do it after a 10 month relationship.  I was a pain in the rear many times, due to pain, a little due to pain medication, but I stayed away from the heavy duty pain medication, just cause.  Depression did and does play a role here.

My suggestion for what it is worth, not much, is to tell him exactly how you feel and that you need him to understand that and see what happens.  My wife finaly told me to stop being so grumpy and so short, that she had enough.  Given that she was very suporative most of the time I took it and had a hard look at myself and stopped, at least to some degree.  Still there are times, even now, that I can't totally help myself due to fear and depression, but it sure helps me to think about others.

 

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

4chambers,

Speaking for myself, I am sorry you got hit with a difficult patient. Pain meds can be a terrible bedfellow (as you have found out).

You are correct it is a bumpy ride at best (with you both working together). Even though my adventure was tempered by Lorazapam (1 tablet before rads, every time) I could not have made it so successfully without my caregiver (wife).

I hope things work out for you and that people treat you nicely.

Matt

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

...13 years of marriage, five children (all C-section) and the most wonderful wife a guy could ask for.  In our ENTIRE marriage she has always supported me NO MATTER WHAT our next journey was, she left all the decisons up to me (we moved 8 times in our 13 years of marriage with the company I worked for) ..she has never EVER nagged or fussed at me. Quite frankly I don't know if she is human sometimes or some programmed robot set to "perfect wife setting" ...then cancer hit and you know what, she never changed.  She jumped right in and though I could see the stress and worry on her face, I could see the way she cared for me, kept the homefront going, kept the kids in school and calm, cleaned fed, all inbetween keeping up with me (our kids are ages 2-14) ...I was a TOTAL GRUMP!  Can you believe that!!!??  I was never really a grump before, never realized it then either until one day (I swear it must have been the first time ever) she got crazy emotional / mad / hurt ..all at one time and just laid into me about being mean and grumpy.  I was shocked.

Looking in the mirror much like Hobbs, I knew she was right. How do we the sick treat those who are moving heaven and earth to care for us like she did, bad?  I truly believe it was the pain.  The pain just gnawed at me day after day after day....sapped all the nicee out of me, and then to boot the pain meds.

There's no way to gtee why he is the way he is or did what he did....but time will tell.  You don't have to let go, be available, but don't "hover" .....I do hear the hurt, and I am sorry....it may or may not come back to what you want ....but time and distance may be what he needs to realize what he had.

Today I love my wife more.  Did not think it possible, but I do. In fact looking back at all she did for me and endured, I am actually in awe, total awe.  I would have put the pillow over my face and said "he overdosed" had it been me :)

Keep us posted ..whispered a prayer for some comfort and for some wisdom in what your next moves are.

Best,

Tim

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

Heck....skip the pillow, and grind up a bunch of those pain meds and put them in your Ensure....and THEN say he overdosed....truth is always better......(you wouldn't have noticed pouring them down your tube)....LOLOLOL

p

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

I was the ultimate butt hole....

I griped at my wife for making too much noisy taking my silverware from the drawer to serve me dinner that she made for me after working all day...

LOL, but ummmm, she set me straight right away...

She definitely made an impression..., and if I wear a hat now, you can't see it...

JG

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

My husband of 34 years came through like a champ. To this day, 1 year post tx, I get angry with myself when I am occasionally short with him. I try to reassure him that I am angry at the situation and never at him. Cancer does strange things to us. I get short but our relationship is stronger than ever. His first 4 wives don't know what a good man they missed out on! (Yep, we've all got a story)

fishmanpa's picture
fishmanpa
Posts: 1134
Joined: Jan 2013

Hi 4C,

I'm sorry about your situation. Cancer causes collateral damage to many things and people close to the patient.

The answer to your question about pain meds is "yes"... Pain meds as well as other drugs used in treatment can and sometimes do change one's mental and emotional outlook. Having recently finished treatment and recovering, perhaps I can shed some insight by sharing a little bit of what I was personally feeling at times. 

Let me say that I was not a happy camper in general for much of the last 6 months. From the time of diagnosis through all the tests and treatments I was pretty much a PITA to deal with. When one loses control of their lives it causes emotional changes that can and do manifest themselves in how we interact. I feel bad for my partner/caregiver for what she had/has to deal with. When I found out I had cancer I was angry! I won't get into all the details but suffice it to say I wasn't happy at all and made it known. She's been absolutely amazing but we both struggled throughout. It wasn't pretty at times for sure.


Pain: that has been the most influential factor in my mood. When you're in pain, sometimes severe pain, all you want is for the pain to stop. Don't talk to me, don't try to comfort me because you can't. It's best to just leave me alone until the meds kick in. I'll let you know if I need help.

Sick: Same thing goes for that. I don’t want you rubbing my back as I vomit. Close the bathroom door and leave me alone. I'll deal with it. Again, I'll let you know if I need help. 

Hydration and nourishment: I know I need to eat and drink. It's been drilled into my head from day one. Please don't talk about what I need to eat and drink 2 minutes after I open my eyes. I can't see straight let alone think about it. And don't ask me three times. If I say "no", that's my answer and it's not going to change in 30 seconds. (I had a PEG put in the last day of treatment so much of that issue has been alleviated as I take 99% of my nourishment and hydration through it for now. 

DRUGS: Take all the above and throw drugs into the mix. Pain killers, side effects from chemo/rads and for me, steroids. I had a very negative reaction to the steroids I was given to help with nausea. About three weeks in, I began to get what would be best described as "roid rage". Every little thing irritated me beyond reason. The beeping of the machines in the chemo suites, a squeak in my truck, a bug hitting my windshield... yes, crazy I know! They also kept me from sleeping. Add lack of sleep to all of the above. I began cursing like a sailor and I don't have a potty mouth. It got to the point that I was hallucinating. I would have my eyes open and be almost in a dream state, hearing voices and seeing things that weren't there. I explained to my oncology nurse what was going on and the next thing I know I was meeting with an oncology psychiatrist (which really irritated me!) She explained to me what was going on and took me off the steroids. It took about a week but I got better. Unfortunately, the lack of steroids allowed the nasty chemo and rad symptoms (fatigue etc.) to hit me hard and that just reinforced the general bad mood I was in. The narcotics definitely altered my mood and still do to a degree. I had bouts of amnesia/short term memory loss. I would forget something sometimes minutes after it happened. There were times I honestly didn't realize the curse words were coming out of my mouth until she said something to me about it. 

The days from about the 4th week until a little over a week or so ago have been like a weird and painful dream. It's like a nightmarish version of the movie Groundhog Day. The worst part about all of this is I didn't really connect the dots (the drugs prevented that) and all it did was frustrate me more. Fortunately, although she had every reason to, she didn't put a pillow over my face. I'm very blessed that she loves me as she does. I love her dearly. I can't imagine what she must have been going through watching me change. I know it hurt her to see me dwindle away physically (60 lbs since last fall). It hurt and confused her to have me lash out and be over critical of everything but she hung in there and we're closer having gone through this together. I'm far from healed but we're over the hump and things are looking brighter.

Perhaps your boyfriend was feeling some of the same things. Perhaps what I shared can help you understand why he behaved the way he did, The drugs as well as the entire ordeal of dealing with cancer can change someone. I don't believe it's showing you who they really are. It's what the cancer does to us that you're seeing. He may also be dealing with some level of depression which is very common.

Your situation is unfortunate. From what I read (and I saw your post prior to editing), it's best to back off and let the dust settle. Take care of you for a while. Take solace in knowing you did your best in the short time you were together.

“T”

 

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

Well stated

Noellesmom
Posts: 1317
Joined: Aug 2010

4chambers, please also go to the caregivers section, if you have not, and vent away there, too.

As a caregiver to my husband of 37 years, I can empathize with you and sympathize with the comments above.

On the caregivers section, you will find others who are caregivers like you and some who are asking very  much the same questions.

Hmmmm...I never thought about the pillow over the face/overdosing option on Jim's worst days...I think chemotherapy definitely gives some of you a creative "twist" :)

4chambers
Posts: 2
Joined: May 2013

Thanks for all the comments.  I am trying to give it time.  I have a week under my belt...have made two attempts at contact with no response.  I do know that at week 7 his pain has been horrendous yet.  I know about meds....not the doses for cancer though.  I know how pain meds can affect a person.  I know that just because patients are mean in the hospital does not necessarily  indicate that is the person they are. I have never lived it 24h a day though.  I wish I had found this site earlier in the journey.  Maybe it was on the Welcome packet at the treatment center?  But why would I go to Cancer Survivor site if I didn't have the cancer?  it 's becoming more clear to me!  I will surviveIt too.  And thanks for the tip on going to the caregiver section....but again, I just went straight to the "discussion board" because that's what I needed.  thank you fishmanpa for the breakdown....yes. (Again wish I'd found this site earlier!!!)  .  I suspect everyone has a breaking point.  I know that I did everything I could do....I gave 8 weeks of support to this ugly bad deal Of throat cancer.  I am enormously sad for how it ended.  I have no idea what I even hope for at this point.  But getting cut out after this much time is pretty dang painful.  Thanks to all of you (I will go caregiver siite now) and you are all amazing survivors with such hopeful stories.  This experience has affected me in many positive ways that I'm sure will keep appearing.  The kindness people have shown is overwhelming and contagious.  Thank you and many warm wishes to everyone.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network