It's been quite sometime since I have tried share some if my thoughts on this journey. In fact I've intentionally refrained. It's rather difficult not to end up in one of two places: Fear & Anger.
Since I last posted much has transpired. On Thursday, January 17, early in the morning I was awoken by a call: mom was in severe pain, the kind that she felt when she fractured her ankle a few years back (unrelated to cancer). It was her hip and she could not walk. She cried into the phone, her voice full of fear..."I just want you to take me to the emergency room, something is really wrong."
She is so strong and her pain tolerance is abnormally high, so hearing her like that was gut wrenching. She refused to allow me to call an ambulance. Having her live a little over 20 minutes away is a constant worry for me. I wish she would come and live with me and my family. I am her primary caregiver and it is a challenge to do that well, raise my own family and work with any level of success and sanity. Where she resides is one of the few things within her control and I have to respect her wishes. Cancer has taken so much from her that I can't take another thing from her and so I just keep trying as hard as I can to make it work and push through the days without dropping too many balls as they say.
It took 20 - 30 minutes for me to get her out of the house and into the car with the help of my sister. Mom was shaking and crying. All I could think was that I knew better than to attempt this myself, I should have called an ambulance. Instead, I respected her wishes which I knew in my heart were born of fear and now they were being replaced by my own fears that if I let her fall, if I wasn't strong enough, one mistake would cost her more.
I could not have gotten her out of the house alone and I am thankful that my sister stayed home from work that day and helped. When we arrived at Anna Jaques Hospital the wait was not very long. We went in after just a few minutes and initially everyone is very kind. That was the only quick thing about the day. We were there for nearly six hours sitting in a room with mom waiting for answers.
First there is the nurse. Then there is the doctor who asks everything the nurse just did and then one has to wonder what's the point if they don't talk to each other? X-rays are ordered and you wait. Wait a little more. Then they finally take her for the x-ray. We return to the room and wait. Meanwhile the pain hasn't changed and she is more afraid than ever, all three of us are. The doctor comes in (just inside the door) and says it should be about 30 minutes for the results but no inquires into how mom is. They don't come back for nearly an hour or at least that is when the doctor arrives to tell us what he sees. After all it's not like she can go anywhere right? Nothing, nothing significant. However, just to be sure now she'll have a CT Scan. So we wait some more. Finally we go over for the CT and back and then repeat the waiting process all over again. The doctor returns again, nearly an hour later with the news. The news is brief and again he barely walks into the room. There is a significant fracture in her hip and she will need major reconstructive surgery which is beyond the scope of their capability. She'll need to be sent to Boston. Beth Israel Deaconess Medical Center is where she'll go and he's off again placing the order for her ambulance.
Although the ER is almost empty it is just about lunch time and no one seems to care that mom is still lying in a bed afraid for what this means. Nearly forty minutes goes by while we just wait in a room. All the while no one is checking in with us or on my mom. In fact the nurse seems like she can't be bothered and is annoyed with the fact that we've interrupted her day. I can see the fear building behind my mother's eyes. Knowing what is wrong does not offer comfort because major surgery is very scary and to hear that its so bad she must go to Boston and nothing more (because the Dr. offered no explanation and did not stay to answer any questions) sets her mind spinning about every worst case scenario she can think of. It's extremely difficult to keep your cool when you observe this happening to the person who gave you life and inside you have all the same fears and then some because you feel like your failing her when you can't even get the incompetent nurse to understand she needs to use the bathroom!
Each and every time I go out to ask a question or let her know my mother needs to use the bathroom she is just plain rude, because why should I be interrupting whatever she is doing at that desk for a patient in excruciating pain who needs to pee but should not be walking on her leg? Although no one bothered to take the time to tell us what we should do (now that we know there is a fracture for certain) if she needed to use the bathroom, never mind that I had already been taking her to and from the bathroom myself all day because again why would the nurse bother.
It's then when the nurse will not even look at me when she responds that I realize I am on my own. As I walk away from her without an answer on whether my mother can use the ladies room or not. I am her advocate. She can't advocate for herself because it takes everything she has to make it through each day and fight this damn cancer and there is no one else who will do it. Advocating for someone, especially a loved one is hard. It is one of the hardest things one may do in life. It is taxing and frustrating and puts you in a place where you constantly feel like your failing because no matter how hard you fight there is another fight coming and the one you love is literally depending on you to succeed so that they can live. Live longer, live happier, live with less pain and have hope. Talk about the weight of the world.
Well to preserve my mother's dignity I won't share what transpired with the nasty nurse and the ladies room. In the end mom waited the entire ambulance ride to Boston and then some. I began the agonizing process of calling my dad, my husband, my other sisters and breaking the news to them.
My sister and I rode with mom in the ambulance to Boston we arrived shortly after 3:30 PM. We rolled into the back side of the triage where there were many others waiting on gurneys by the ambulance doors until ER rooms would become available and my mother was "parked" by the automatic door in the middle of winter to wait. ER's are HELL, PURE HELL.....
That's it for now...this is a long, long story. Part II is coming and then III. I did not realize how difficult it might be to write this out until I started. I would like my readers to note that while my post is full of anger and sarcasm, please realize that I have a deep appreciation for nurses and doctors and all healthcare workers, especially in the ER. I understand just what they face each and every day and I know all too well what a good nurse or doctor is because eventually we found some really good ones as I suspect most are. But this journey started off with some really awful ones and that is a shame.
Another note...while I am my mother's primary caregiver and advocate I should say that my sister did not leave my side that day and in the moments when I fell apart where mom could not see, she held me and she encouraged me. She was wonderful.
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