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What am I so upset over....

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

Hi All,

Had to post this as a couple of earlier posts really got my goat. I find myself trying to understand my position as a caregiver, and why I don't seem to be having the same frustrations that I see posted here very often as a common thread. Earlier I read a post that was out-dated and it really charged my inner fighter. I ended up resending my comments as untimely. I apologize to anyone that may have been affected by the post. That said, I return to my topic matter.

My husband was dx in June 2011. It was a routine colonoscopy and endoscopy. My husband had been having trouble swallowing and had lost a lot of weight. The last thing we expected was to be told it was cancer. We, like so many others in these halls had plans, dreams, and at our age (early 40's) just had never discussed that 'what if'. As a matter of fact, cancer was something that we had several family members come up against and we aided several in the journey. The one thing that we had not encountered was the loss of a loved one to the disease (though it was close in a couple of cases). So, when the doctor came in and told us that he had Esophageal Cancer and that it looked bad, we put on our fighting gloves. We have been married for 16 years and have 5 children. This was not the time to envision them father-less. We are strong, we are fighters, we can do this together. At every corner of the dx we were hit with a down-side and lowered chances of survival. Fear set in, we cried as we were told there was nothing they could do but palliative care. We spent many a night and day in 'auto-pilot'. And we had several inevitable conversations about where to go from here.

It wasn't easy to digest this news. My husband started looking up old friends and communicating online to perfect strangers about his cancer. I spoke to family and my friends. We talked about death and what it meant to us. There were days we didn't speak at all. All through this, all I could feel was sorrow for my husband and children. I felt my own sorrow, but more so I felt sorrow for my husband. I could not even imagine how it must feel to be faced with your own mortality. What would that represent for me? How would I feel? How can I prepare to say goodbye? I still wonder about these things. My husband and I have so much love for each other, and before the dx we probably did take it for granted and had a reasonable expectation for a full life together and that didn't include cutting it short in our early 40's.

I married my husband for many reasons and the one that stands out the most to me is a knowing I have had since the beginning that he would walk through fire to protect me from harms way. We had a typical rough start the first 5 years, learning how to fight, how to communicate effectively, how to problem solve effectively and fairly, you know, the usual stuff. Never have I doubted that he would be my rock if I ever needed him, and I his. We have always had each others backs. We have always wanted to model love before our children so that they may grow up to chose spouses that would stand in the gap for them at all turns in life. Life is challenging in and of itself, let alone to have to face the challenge of making love happen! It shouldn't be something you have to 'make happen'. Of course you have to work at making a marriage work, but that comes from the love you have for each other doesn't it? No matter each others' opinions, we love them. If they don't like meatloaf, if they don't like sports, if they don't put the cap back on the toothpaste...etc...

So, I get to my struggle here. I know that cancer treatment is tough, and the patient can become behaviorally unstable, that other people can throw you off guard by the simplest of statements, and everyone in the family is going to have their own process. But where do we as caregivers cross that line that says we are no longer serving up compassion, affectionate embrace, understanding that ignorance is bliss, and generally a sense of undying love. Is it a phase of being stuck in the anger phase of grief, is it that we forget how fragile life is and that it can be taken in an instant, is it that we think we are so grand that we ourselves will never need someone to pick us up daily and hold us up against the beast? Maybe I am naive, but my opinion is that if I need to rant about how 'hard' I have it to deal with the side-effects of my husbands journey affecting me in such a way, then maybe he is better off in someone else's care so that I can better take care of myself. I would certainly never want to be taken care of by someone who responded to my needs in such a careless manner. My life means more to me than to hand it over to someone who isn't going to build me up and stand in the gap for me when it comes to that point. I would want to know that my rock has my back at every turn and when my friends ask the 'stupid question' they will take the time to explain to this person that their concern is valid and that I care about them. I certainly would never want to hear of my husband rolling his eyes at those who try to reach out in possibly the only way they know how, even if it is lame, in such a passive way and give no attention to their genuine effort to try. Just months ago, we were those 'stupid' or 'inconsiderate' people who didn't know how to respond 'correctly'. Instead of turning the other cheek, or passing our questions off as stupid, we received thanks for our concern and don't recall anyone ever ranting at our expense.

Peace, Love, Compassion, Understanding, Standing in the gap, Protection, Gratefulness, and Sorrow. These are part of being a caregiver in my opinion. These qualities, along with the commitment to providing caring support, a pedastool to stand on, a strong arm to hold on to, humility in the face of humiliating dependence, and unconditional love. If I can't do this at any given time, it is time to call in others, as I am in need of some help and can not trust in my own abilities to provide what he DESERVES. I deserve the same in my caregiver. I am human, and I have faults, and I have weak moments, what makes me good for my husband is the mere fact that I am honest enough with myself to know when I am about to cross a line and pause before it happens so as to protect him and get what I need to remedy my issues. Otherwise, he might as well have just any Joe taking care of him. But, no he chose me, and I am truly grateful that he trusted me and I made the choice to commit to him no matter what.

My husband didn't chose to have cancer, and he certainly didn't chose to end his life this early on, but as we have learned through our experience on this journey, death is a part of life and we are all terminal. I do not take for granted the time we have together, and I wish there were a way to change the outcome, I would give my right arm to live out our previous plans and dreams. But that just isn't going to happen, and I had better get as much of him as I can, because yesterday is passed, tomorrow isn't guaranteed, and all I have is NOW. This thought alone will bring me to tears when a friend asks, "How is Eric today?" "He sure doesn't look that ill." "He's too young to leave this world." But I share my tears with them with no shame for how dear his NOW's are to me. I have no doubt that everyone that inquires as to my husband is just trying to connect on some level to what we are going through. I applaud their bravery in not avoiding me or cowering away from my approach as it is not something with which everyone has personal experience.

Love to all as I struggle to understand. I invite any who have experienced these frustrations to share their personal experience.

Again, Love to all.

-Michelle

ddpekks's picture
ddpekks
Posts: 162
Joined: Sep 2011

I am there to love, support and go to the ends of the earth to accomplish whatever it takes to help him on this journey. He knows, beyond the shadow of a doubt, that I am there and that I would personally fight and destroy anything or anyone that tried to get in my way. I have learned nursing techniques that 4 year nursing students don't know. I have stretched my boundries farther than ever I thought I could. And all with no regrets and everyday I seek to learn or do more. That being said...........

I'M NOT SUPERWOMAN! I come here to *****, complain, vent, get it off my chest, say it out loud, whatever you want to call it. I come here because there are others who are not Superman/woman, who have little break downs in their sheilds of armour. There are day to day things that happen that drive me crazy, make me angry, upset me and make me want to scream. I come here to scream, where others understand my frustrations, my wants, my desires, my urge to kill and they don't judge me and assume that I'm not dedicated enough.

When I do scream out loud, it stays here on these pages, in this worm of internet. I get it off my chest and then I turn and smile at him and hopefully make the journey a smidge better, because I feel better.

Don't know if this will help you or not, but this is where I'm coming from.

(((((((hugs)))))))
Deb

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

I totally get the 'temporary' momentary frustrations. I get those of course, I don't think there is anyone who doesn't get frustrated with cancer or behavioral set backs. I don't think I am communicating this well. I am speaking of the "themes" of anger.

There are several themes I have read through that "appear" as though the common denominator is primary anger and resentment. I am not speaking to the occasional venting session or cry out. That is normal. What I don't see as normal is to have that theme dominate your state of being through the process. Am I wrong to think that this is abnormal and would warrant concern for the patient?

Thanks Deb! I am trying to be more specific about my lack of understanding and hope that I have been a bit more clear. None of us are superwoman and it would be totally psycho to claim to be. There is normal anger that passes quickly and doesn't dominate our life, and there is long term, dominating anger and resentments that become borderline abusive. It is the latter that I speak of and has caused me great confusion. Would it not be better for the patient and the caregiver to pass the baton to someone that can be more stable in the care of the patient?

Love to you Deb!
-Michelle

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

and I believe you are spot-on about what a caregiver really is.

My husband is my caregiver and OMG I would be so lost without him. I was diagnosed 1 year after we were married and this year we celebrated our 19th year of marriage (and 18 years of dealing with the beast: brain cancer).

My husband is my rock, my angel, my lover and my best friend. He is who I go to when I am scared, lonely, confused or just plain mad. Why? Because I trust him 1000% and I know he has my back. He is the buffer between me and the rest of the world, be they doctors, family or friends. He has told me that if anyone wants to get to me they have to go through him first.

But I see the toll this takes on him and I try to encourage him to let his feelings out. It doesn't have to be with me; it can be with his friends (he has really great friends and colleagues who care), our therapist or he can vent in other ways. He loves to play guitar and sometimes he'll just go off and start playing (acoustic) and I know that is his time to work out whatever is bothering him.

My husband also always has an "out". His "out" is that if this journey we are traveling together becomes too much for him, then he has the right, no questions asked, to walk away from the marriage. People ask me if I've lost my mind. Nope. I love him that much. I love him enough to let him go for the sake of his own sanity and self-protection.

This is a difficult journey that you, the caregivers, have decided to take. The patients do not take it lightly. Oftentimes, you are handed information you don't know how to deal with and are told, "please don't discuss this with the patient just yet" and you are left to carry that "stuff" around by yourself. Not fair at all.

Please, please, please don't feel that you don't have the right to vent about how bad this gets. It's ugly, it's horrible and sometimes it just plain isn't fair. But I feel that we are all dealt our own "hand" in life and it is how we play that hand that truly speaks to our character.

You are very brave to do this and on behalf of all the patients, I thank you.

Teresa

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

I too thank you for your brave post back. If this truly is a place for us all to gain support then we have to be HONEST! Support is not authentic if given wearing a mask. I am honest about my feelings and do not see the need to dodge my feelings here. I am VENTING! I am venting and screaming out loud here! See, I too have anger. It will pass just as everything in life. My grandma used to say all the time, "Shelly, this too shall pass." And it always did. No need to let it define me. Like Shell Silverstein says, "Shapes change, corners wear off."

I have a true concern for patients being cared for by those that refuse to hand over control when they can no longer provide the compassionate care that all fighting this battle deserve.

Lots of love, even in the face of anger!
-Michelle

ddpekks's picture
ddpekks
Posts: 162
Joined: Sep 2011

<>"I have a true concern for patients being cared for by those that refuse to hand over control when they can no longer provide the compassionate care that all fighting this battle deserve."<>

I totally agree with you, that loving and compassionate care should be a requirement and that if someone can not do it, they should back off, step aside and let someone that does care and is capable, do it.

But, I guess I'm ever the optimist and am hoping that the posts that I think you are referring to are merely going through a phase, that it is a low point in their journey and that they are perhaps (hopefully) exaggerating. I also think we do not get the whole story most of the time.

I like to think that perhaps knowledgable peeps such as you and Teresa and many others here can guide us newbies through the dark, into the light. You've already helped me more than you will ever know.

(((((((hugs)))))))

Deb

jax568
Posts: 58
Joined: Aug 2011

Is it possible to be a caregiver and not be compassionate? Usaually the caregiver is a loved one.

There is most certainly a process and steps needed to take, (some need more steps than others to finally get to a somewhat comfortable mind set)

For me I am not the same person that got the news that my husband was stage IV 2 months ago. My mind set is completely different, as I am sure I will be at a different level next month.

So, what does it take to be a caregiver? I don't really know, I think I am still learning.

Jackie

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hey Michelle,
I see the anger pop in on some threads too. As a matter of fact I replied to one awhile ago, where I thought the caregiver was, in my opinion, from what was posted "selfish". I felt like I took quite a bit of heat for saying that, but I too was being honest. I felt just terrible for the husband who was dealing with his recurrence of cancer and she said HE wasn't supporting HER enough and was going to leave. I guess I had my moment of anger after reading that. I agree, if you are incapable of the compassion or at least the understanding of "standing in the gap" (love that saying, I've not heard it before) let someone else take over. You are a gentle soul Michelle, and this world is a better place because of you.
My best to you always,
Cat

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

Thank you Cat and Deb! Your words are very nice and encouraging! We are all in this together and hopefully this thread will lead to some deep explorations of their own.

Love to you!
-Michelle

JackieA
Posts: 150
Joined: Mar 2011

I read your post. It got my attention. My husband has been going through his second round of breast cancer. I have been a caregiver for the past 2 plus years. The sole caregiver. Like you, my husband is 43. I have had bouts of anger about many different things.When I came across this sight, I was searching for a place to see if anyone was feeling what I was feeling. I felt no one could understand how I was feeling. My husband was bedridden for most of last year, day after day in bed...I kept vigil most time beside his bed.We have an eleven year old. My husband began to feel better, but began to lose his ability to get around. He no longer drives, and all the chores...everything...bills...whatever we shared to run our household is now on one person-me. Am I angry for that? no, of course not, but I do get overwhelmed when he screams at me out of his frustration time after time or is angry and mad at the world--or I can't do anything to his liking. I do feel abused at times so, I walk away, cry, lick my wounds, and pull it together and serve him like a loving wife should. Do I allow resentment to set in...It will if I don't stop it. Does that mean that I don't love him? no...when I first began taking on the responsibilities of seeing after him, honoring my vows...I did it with determination, with zeal, with care, with love, compassion...day after day and it has not change. We have been married for 15 years. Do I get angry?...yeah I do because... sometimes it seems I am alone, but I can only imagine how afraid he is of every test, of seeing our son grow and not being able to do father and son wrestling and etc, of not being intimate with his wife as a man and woman should--especially married (you know). I am just as frustrated...but do not take it as I don't love him or am not compassionately caring for him. I am. My pain is often hidden, as so many caregivers on this page , but they find a way to vent and keep going.
I believe many people are angry because of hidden anger that was buried, but now has resurfaced...which turns into resentment, then bitterness

The disease, I often hear, is just as hard on the caregiver as the person going through. why because you watch them suffer...and through their suffering sometimes the caregivers are hurt the most.Not intentionally. Sometimes, the caregivers get angry, mad, they anticipate the dying...most of us have never been on this road before. How can you anticipate someone's dying...you imagine it, you worry, you cry. I never thought I would feel some of the things I have felt. I use to feel so bad, until I found others who had the same feelings. It doesn't mean that we are callous and cold...it is the otherside of the human nature, but it is up to us, to which one we will allow to dominate...LOVE COVERS A MULTITUDE of FAULTS, FAILURES,SIN. I choose love.

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

That is a great post Jackie! I chose love as well!

Hugs to you!
-Michelle

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

would say, "I choose us".

Hugs,
Teresa

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

I make my own "like" button!

:)

ddpekks's picture
ddpekks
Posts: 162
Joined: Sep 2011

I just pushed the button!

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

I completely agree with you Jackie. I am too a caregiver for my husband. It is a very hard job. This place is the only place where I can vent, get suggestions, get angry (at the cancer of course, never at my husband) and get a kind word. I am sorry if anyone thinks that I am "complaining" because I am...I am at the cancer, why is it controlling my husband and our lives together. I am overwhelmed sometimes, but I deal with it. I do the same as you, vent on this page. This is my only outlet and again I am sorry if I offend anyone with what I say. I have no other place to go. Like all of us here, I am only human. I am trying to stay strong and have been commended for being as strong as I am. I do have my moments and somedays I want to share my "selfish" moments on here. This is the only place that understands what I am going through and I love this place and all the members for that.

Thanks for letting me vent!
~Kelly

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