Caregiver-Spouse with cancer is mad at me

YvetteO

Hi I'm a 42 year old married

Hi I'm a 42 year old married for 15 years but together for 18. ive been recently diagnosed and since then all I could think of is leaving my husband. I suffered five years ago as a caregiver to my sister and till this day I still suffer with some of the images in my brain. i also have suffered epilepsy for our whole marriage and taking care of me during a seizure is hard and frustration is not easy for him to deal with. So imagine how he would be with cancer. Leaving him will spare both of us of another pain we would have to live through. Leaving would allow him to keep living instead of stopping for me. That's not fair to him and I think he won't handle cancer anyways. He has dealt with enough and I don't blame him. All I could think about is running away. 

Noellesmom

What do you mean

'Diagnosed'?  Do you have a terminal prognosis?

samantafg

need frds

i also  once had a similar  problem  just need frds now   add  on  facebook  profile  samanta  romeo   

Pink Delphinium

YvetteO said:

Hi I'm a 42 year old married

Hi I'm a 42 year old married for 15 years but together for 18. ive been recently diagnosed and since then all I could think of is leaving my husband. I suffered five years ago as a caregiver to my sister and till this day I still suffer with some of the images in my brain. i also have suffered epilepsy for our whole marriage and taking care of me during a seizure is hard and frustration is not easy for him to deal with. So imagine how he would be with cancer. Leaving him will spare both of us of another pain we would have to live through. Leaving would allow him to keep living instead of stopping for me. That's not fair to him and I think he won't handle cancer anyways. He has dealt with enough and I don't blame him. All I could think about is running away. 

Hang in there

YvetteO, I hope you haven't left your husband.  I've been taking care of my husband who has stage 4 melanoma cancer and, although it is busy, it isn't awful.  Not sure what kind of cancer you have or if you are in pain, etc. but the new medications they have now are very different from the older ones.  My husband has had no side effects from his chemo and radiation treatments.  He's had brain surgery and back surgery, but recovered very well from both.  Don't assume it's all going to be awful.  Just take it one day at a time.  The Big Guy upstairs is a good one to talk with, too.  Hang in there!

 

Pink Delphinium

Looking for folks who are caregivers

Especially those dealing with emotional issues in those they are caregivers for.

 

vagabond

FlDino said:

My wife snipped at me a
My wife snipped at me a couple of times near the end. It hurt, but then I got to knowing that she didn't really mean it. She did that as a defense mechanism when things happened to her she couldn't control. She knew she was going to die and as strong as she was, she still had moments of weakness, for lack of a better word.

Shake the hurt off and know they are doing it because they maybe are frustrated at something happening to them that they cannot change.

Thank you for acknowledging

Thank you for acknowledging that there are always at least 2 sides,  usually 3 to every story. I have metastatic renal cell carcinoma and am currently on Votrient for the tumors and Xgeva for bone Mets.  Although I do not have any current bone Mets I have a couple that are still healing from radiation. My biggest problem now aside from constant weakness, white hair,  nausea and some depression is the excruciating pain in my hip,  thigh,  and tailbone area.  It can be constant and horrible or random shooting pain or at time seem to just go out.  While all my oncologist will admit to is some bone degeneration, he keeps prescribing stronger pain meds which sadly do not work.  I found a very nice chiropractor who says my spine and pelvis being out if line is causing a lot if the pain.  She has done what she can but her hands are tied because of the bone mets. I have always been a do it myself kind if person and literally waited on my husband hand and foot.  He is 6 years older than me and he works as a supervisor in a large plant. I have always taken great pride in having a spotless house, spoiling my husband and staying in good shape. The kidney cancer and then  lung tumors that came 3 years later were a total shock. 

I know my husband loves me but he has always been more concerned with looking good to others that to me.  I have never wanted sympathy from strangers but he feeds on it.  He loves telling people how bad off I am so they will feel sorry for him.  I do not understand it but that is just his makeup and as long as I don't have to deal with it it's fine.  Although my pain is much worse lately and the pain pills mess with my head but do nothing for the pain,  I still manage to keep up with all the bills which includes trying to pay these huge hospital bills due to crappy insurance.  I do what little cleaning gets done and take care of the animals. He does sometimes have to help but only if I ask and beg and then he expects a parade.  I am not getting better and we all know it will only get worse. I do not want to spend my final days arguing and crying,  I have tried to explain that I need him to be there for me,  whether he helps or not I need companionship and love.  He will have a large enough insurance policy when I die that he will not have to worry about money and even so I have made sure his name is not on any of my medical bills.  In the mean time the only one stressing over bills is me.  I don't know if he is just over it and ready for me to get better or die or if he is just not getting the attention he is used to but lately he is so hateful to me that I can not speak to him.  At times my pain is unbearable and he can listen to be scream and cry and totally tune it out and get fighting mad if I say something about him being cold hearted.  I know I have a short fuse,  pain does that, but I have done nothing to deserve this treatment.  He has always been selfish and in our 13 years if marriage he has got worse.  If I were not sick there is no doubt I would have divorced him by now but as it is I am at his mercy.  I know it is not fair and have told him many times he does not deserve a sick wife and if he wants to leave me I understand but to please stop treating me this way,  I can not work because of this pain and if we split up I would be on welfare but that would be better than living with someone who clearly hates me but will not admit it and insist I am the mean one.  Anyway,  sorry for the rant,  just wanted to say thanks,  being a caregiver is hard and it would tear me apart to watch someone I love go through this but not all caregivers actually care. 

 

MaryCarther

Never knew this person

I know what you mean, allecky. But it could be worse (if that is a consolidation)

My husband has Stage IV NSCLC, on GiloTrif for 8 days, starting to feel better, after having almost died 5 times in the past 5 months.
He has been a very ugly person at times after this diagnosis, but I figured it was the chemo, the meds, feeling bad, and always excused it. Today he said something extremely mean, what goes completely against my core of values. I expressed my shock, and said, I hope you are kidding!? And he responded, "No, I am not **** kidding. I am sick and tired of pretending I am someone I am not. Live with it, or leave - the F*ck out of my house. I am tired of being surrounded by goody-two shoes." Then he shot me an ice cold look. I was stunned. This is not bad temper, or a bad day, I ahve seen him progressively making cruel comments about TV, my looks, the dogs, the food I cook. It is so bad, that my children and their spouses and my grandkids don't come around any more, because the women tend to leave in tears.
We've been married for 40 years... 40 years ... You cannot be so mean if it is not in your heart. I've seen my whole family die of cancer, my grandfather, father, aunts and uncles, and they were all gentile people to the end. Alway polite, always appreciative, always considerate of the caregivers.
If anyone has advice how I can deal with this - I am all ears. 

Manontb

appleyellowgreen said:

Guilt trips
I'm in your situation. My husband is going into his second chemo treatment. He has already had three surgeries since 2005. Small cell lung cancer. Nothing is ever enough.

Once you really get that - once you really get that it HAS to be all about her - it gets easier. It's not you. I have no idea what your entire situation is. I don't know if you go to work and have someone come in to stay with your wife. I don't know how old your children are. I don't know what your wife's side effects are/were. There are so many different elements to being a caregiver, a patient doesn't see the whole picture. Because the patient only sees his/her own needs.

I know my husband will yell to me from the bedroom when I'm in the living room. It always sounds urgent. Sometimes, all he wants me to do is turn off a light that's bothering him. There are a lot of nonsensical things that take really irritate patients. Light. Sound. Taste. Touch. They're super sensitive. But because I don't want to miss the one time he really needs something, I run. It really aggravates me, but I smile.

I save my arguments for motivating moments. My husband has a tendency to be lazy about his recovery. Cancer is something that is happening to him and he is pissed off. Understandably. And I am pissed off that he lies around all day instead of trying to get stronger. After the initial effects of a chemo session wear off, I think he should take the initiative to build himself up.

I'm always told I don't understand. I'm always told how much mental pain he is in. I'm always told I can't feel what he's feeling. I agree. But it works exactly the same way from our side. He doesn't understand what I'm going through. He doesn't know the horrible thoughts I have every night when I go to sleep or how I dread what the next day will bring. But I put on a happy face.

I can do this because I have let go of the guilt. No, I'll never do enough. I'll just do all that I can. I have no children and I work from home, so I am with him all the time. He usually apologizes for his anger and selfishness at the end of the day - it does make a difference, but I don't need the apology any more. I know I'm doing all I can. He can't send me on a guilt trip any more.

I think you need to examine your behavior and see if you are falling short anywhere. I have a feeling you're not. But I agree with Willy that you need to have a good talk with your wife, and you need to go into that talk prepared. The hospital where my husband is receiving his chemo has psycho-oncologists who will sit down with you and work things out. Having a third, neutral party present to monitor the conversation is a big help. Any family therapist or couples therapist can moderate. But if the facility where your wife gets treatment has anyone - social worker or psychiatrist/psychologist- on staff, see what they can do.

It's tough. You give so much and your not looking for applause, but getting blindsided hurts like hell. I know. It took time to find a new normal in my house. It keeps changing. But I'm a pretzel these days - have to twist and bend to the occasion and need of the moment.

You're not alone.

Apple Yellow

Reading your post made me feel better about everything I do, and I do a lot. I knew I wasn't alone, and you confirmed it.

thank you

fishmom

Struggling with husband's ugly side of dealing with his cancer

My husband has stage 4 prostate cancer that has metastized. My husband was so loving and appreciative of me and everything I did for him when he was first dx 2 1/2 years ago. He started getting physically more able to do things which is wonderful but in the process he became very verbally abusive to me. We've been married 38 years and he never spoke to me as he does now. He calls me filithy names. I had to go get something for my anxity and depression from all this. It has helped. It makes it where I can take the verbal tirates better. They used to be so bad he would keep me up nights to talk ugly to me knowing I had to get up and go to work the next day. He hates my job and doesn't seem to care about a whole lot. My job is where our health insurance is and a large part of our income. A little over a month ago it had gotten so bad I went and spoke to a lawyer about a divorce. That is something I had never done in all the years of being married. After that he seemed to get a little better (less hateful to me) but recently he seems to be slipping back into old habits. I can't reconcile with myself to leave the man I've loved my whole life with a terminal illness but he seems to know that.  Our kids and his family both have told me I shouldn't take his abuse. The kids support me 100% to leave him but then that puts the caregiving upon them. Plus the meaness that goes with it. He was very ugly to them when he was dx. I realize it's the cancer talking but that doesn't make it any easier. 

As far as advice for never knew this person, unfortunatly I have none but I so totally understand what your going through. May God bless us all and give us the strength to care on and do the best we can by those we love.

JerzyGrrl

fishmom said:

Struggling with husband's ugly side of dealing with his cancer

My husband has stage 4 prostate cancer that has metastized. My husband was so loving and appreciative of me and everything I did for him when he was first dx 2 1/2 years ago. He started getting physically more able to do things which is wonderful but in the process he became very verbally abusive to me. We've been married 38 years and he never spoke to me as he does now. He calls me filithy names. I had to go get something for my anxity and depression from all this. It has helped. It makes it where I can take the verbal tirates better. They used to be so bad he would keep me up nights to talk ugly to me knowing I had to get up and go to work the next day. He hates my job and doesn't seem to care about a whole lot. My job is where our health insurance is and a large part of our income. A little over a month ago it had gotten so bad I went and spoke to a lawyer about a divorce. That is something I had never done in all the years of being married. After that he seemed to get a little better (less hateful to me) but recently he seems to be slipping back into old habits. I can't reconcile with myself to leave the man I've loved my whole life with a terminal illness but he seems to know that.  Our kids and his family both have told me I shouldn't take his abuse. The kids support me 100% to leave him but then that puts the caregiving upon them. Plus the meaness that goes with it. He was very ugly to them when he was dx. I realize it's the cancer talking but that doesn't make it any easier. 

As far as advice for never knew this person, unfortunatly I have none but I so totally understand what your going through. May God bless us all and give us the strength to care on and do the best we can by those we love.

So sorry to hear

Fishmom, so sorry to hear what you're going through. 

Your walking away from the abuse might not be a bad idea. His depriving you of sleep is abuse (In fact, sleep deprivation is recognized as a form of torture). It might snap him into treating you with respect or perhaps not disrespecting you and the rest of the family. Or not. I'm not sure what the laws are where you live, but generally spouses are not required to put up with abuse from their husbands. Additionally, children are not generally required to care for an abusive or estranged parent. Again, find out what the laws are. That you morally and ethically feel responsible is one thing. However, there are laws which have come out of society's moral and ethical standards for how we are to treat one another. 

You can still love him as much as you ever have, but you can also love yourself - and respect your kids and his family - enough to say No More to the abuse. 

whereveryoumaygo

A different perspective on grief

I am so sorry for the pain and suffering that everyone here is describing. 

I am suffering greatly for a similar but also different reason. 

My partner, 40 year's old with metastatic neuroendocrine cancer to the liver pulled away around the time they gave him a terminal prognosis. 

He tried to stick around as a friend, but his messages were brief and controlled. 

He was abandoned as a child and has always relied on himself, I believe this disease just increased his character of being hyper-independent. 

Throughout our journey together as a couple, we had about a year of great moments free of the burden of his disease. He was generally stable and was able to cycle (his passion, he is an athlete), work (he is an aerospace engineer) and travel. We travelled together, spent time together emotionally connected, and planned a future (despite the uncertainty) together. 

As soon as the news came in that he was terminal (less than a year to live), despite being relatively asymptomatic (his disease was confined to the liver and causing very little symptoms) he started to rush through the steps of what was important to him (working longer hours, cycling, working as a leader in a  support group caring for other patients that were worse off than him or newer diagnosed). He relegated the relationship, stopped cycling with me, and started to see me only once weekly. I respected most of this, with a few moments of breaking down asking him to please include me more because it was incredibly painful to feel like I was going to lose him but that he took so much pride and energy in everything else but me. He just looked at me and said "you knew this was always who I was"

Don't get me wrong when you think of my writings as selfish, I had amazing moments of connection with my partner, he is an honest, caring (in actionable ways that made him really feel like he was listening to me and cared for me) and he changed my life for the better. 

Now that he is very sick, he has shut me out completely (I did do things that upset him along the way, like becoming very emotional once or twice and trying to force him to talk about his illness and choices re treatment with me before he was ready, calling doctors for second opinions and setting them up without him asking me to, once knowing his results first where I could have avoided them, and then calling his close friend when he shut down completely and isolated himself, and was requesting absolute privacy) and he blames me for these above incidents to the point of not being able to let the feeling of betrayal go and allow me into his life again. I have apologised time and time again and asked him to please let me be with him at this difficult time (he has almost lost all of his independence at this point and is showing signs of personality changes). His response is that he can't let go of my "mistakes", and that I really never heard a word he said about who he is (the type to care for himself and need to shut down without others around when he is struggling most)

When he first pulled away, I felt an incredible amount of guilt and questioned every decision I  made that had caused him this mistrust and withdrawal. I wondered if calling the doctors or his friend etc, really was a true betrayal and asked him how to fix it. I asked him if he could please meet me halfway by not shutting down completely so I didnt have to panic and impulsively act on my fear and do things that make him feel like he's out of his control of his life. He said he did not know how I could fix it, or if he could help the prolonged shut downs because it's the only way he's ever known how to cope, and he doesn't know when the emotions of being betrayed may subsied, and to leave him be until he needed something. We went to therapy but he just sat there frozen not saying what he was feeling, or blamed me for "chasing him" since his diagnosis, and not respecting his wishes not to talk about or act on his illness/treatments. I cried and tried to explain to him that fear of loss and disconnection increases fear, and maybe even more so for me as I have experienced significant loss in the past. I again apologized during therapy about how I had over-reacted to my fear and tried to force him to talk to me about his illness and future treatment options against his will. He just ended therapy and then the relationship before the therapist could speak to him about what he needed or wanted.  

Ultimately, there has really been no place for my emotions since his terminal diagnosis eight months ago (but I had respected that despite it hurting until he went completely silent, or on occassion where I made my need for more closeness and communication known (likely in a way that was not productive as I had held it in for so long)

After a month or so of silence, he reached out again, apologizing for pushing me away (this has happened about six times before) this time describing his childhood issues of feeling betrayed and controlled by his family (and then fully abandoned at the age of 14) and how he could sense that his mother derived pleasure from seeing him weak in the opposite way a parent should feel when seeing their child down. Instead of loving him selflessly, he felt her love came from a place where she derived too much emotional happiness from the control of him or seeing him weak.  So I did (and have always instinctually) understood that his behaviour or feelings were not all my fault and to tread carefully with the display of my emotions or desire to care for him in a way that felt right for me. I owned my part during this conversation and I thought that this conversation had ended all of the difficulty between us that we were unable to communicate about in the past. I thought that we would move forward together no matter what, because I was and always have been committed to seeing him through no matter what. I know in my heart I do not derive pleasure or purpose from seeing him weak (despite seeking a life of purpose and heping others in the past). That our relationship was very different than what I had experienced in my past. That he likely is the love of my life and if it wasn't for this cancer, we would have continued to be really happy together despite our differences. I believe until the terminal diagnosis he was really committed to not letting our past interfere with our future and working things through. I may be wrong but the one thing I do know is my love for him, desire to see him well, take away his pain, even give him a part of my liver if I could, is very strong. Also, that I have always seen past the cancer to the man that made me feel loved, safe, wanted, that I respected so much for his integrity, intelligence, whit, drive, athleticism, and his capacity to take care of me or accept me in a way that no other has ever shown. For these reasons, I continued to work, exercise and study during these past few months and difficult shut down/break up periods, because I derived strength from having witnessed his own capacity to continue work, exercise and pursue meaningful endeavors despite his own uncertainty and from the happy memories of our relationship. All of this, has made me a stronger person. Of course, because of loving him and knowing I might lose him, deep inside, all I wanted to do was quit everything and be by his side. 

I spun so many scenarios while coping, much revolving around the theme of guilt that if i I had just been a better girlfriend, listened to him verbatim, never panicked, never took action against his wishes, that I would have made life easier on him. The guilt was immense, and I felt like I was drowning in it. I took medication to ease the pain, and continued on. Finally now, and especially reading the above pain of other caregivers, I wrestle less with most of the guilt at not having been the perfect girlfriend. I read an incredible helpful book titled "it's okay to not be okay" which helps with grief. I realised that all of the betrayals he citied were actions of mine he had appreciated in the past and felt loved by. I realised that our world of what "caring" feelings like is vastly different, and to bridge it would have taken a lot of work that it seems due to the cancer, I was the only one with enough energy to put in. 

Recently I snapped at him and told him that his cancer was increasing his problems with trust and it was hurting me badly. That no longer knowing how he is or what he chooses has caused a great pain inside of me. He told me he was insulted that I thought Cancer was the problem and that really i am the problem. I am the one that doesn't understand or hear what he needs and am unwilling to sacrifice my own needs in order to give him peace. He may be right, but again, I feel my words were twisted and just stating my own fears and needs sent him back into blame and anger at me. 

Now, I have come to terms with the fact that we are once again disconnected and this time, maybe for good, I just wish things didn't end like this. With him citing betrayal and being angry at me for the rest of his life. I wish that I could communicate that I am human, with human emotions, and have him see the innocent parts of me. See that my emotions don't cancel my desire to do right by him, even if sometimes I fail at it. I wish he could see that his conditions of loving him the right way were very hard for me to meet. I am sure he wishes I would just come to understand that his pulling away is not personal and rather the only way he knows how to cope. I bet he wishes I could see how he is protecting me from pain he cannot fix that causes him to blame and lash out at me, and not actually trying to harm me. I just want to sit outside his door until he lets me in so that I can be with him now. 

I just want to be near him, with him, or have some closure to all of this. When I hear all of your struggles, a very small part of me wishes I could be the one having hurtful comments hurled at me, just so that I could stand by and be loyal to the man I love. Be present with him. I feel I could be stronger and more at peace if he were just himself and angry and I was with him, than if he were just silent and blaming me, pushing me away and then sometimes calling again. 

I want to be able to hang on to the positive memories, the life changing ones especially, and the love and respect I have for him. I want to be able to continue the positive parts of my life, but the grief now is overwhelming. I am watching my loved one die from a distance, alone, I feel helpless, and unable to even be the person he needs, or find closure in the good parts of our lives we shared together. 

Thank you for reading this long winded story. I really appreciate it. It helps not to feel so alone. 

And if anyone has any thoughts or ideas, I am happy to hear them uncensored. 

M

June08

A different perspective .....

Dear whereeveryoumaygo,

Your post is overwhelmingly familair and honest and I am so sorry you have had to go through all this.

For some reason my husband has singled me out as the focus of all his fear and anger after we moved back to UK following his diagnosis with stage IV lung cancer. He has just found out that he has brain mets and obviously this is devastating - he just gave me the report and will not say any more. I have managed to find out that he will be having chemo and immunotherapy at some point. I have spent the last three years trying to understand why he has blatantly pretended to others in front of me that he is ok only to turn his back on me the minute we are on our own. He will not reply to any message or talk to me when in the same room and has constructed a wall between us which is incredibly painful and bewildering. I have tried to make this situation all about him and his needs but now it feels like bullying and I cannot continue to help him through this next stage if he will not be more open with me, especially if he hopes to spend his last months at home.

Although I have been in regular contact with his parents ( who are very sympathetic) the rest of his family have kept their distance and not even bothered to ask how we ( myself and my sons) are getting on.

I have so much respect for all caregivers who give so much of themselves in such stressful and painfully sad times. Stay strong.