What am I so upset over....

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