It will be 6 months since my mother passed away.
No one gives you any instructions or guidelines on how to deal when a family member dies, especially from an illness that has taken and consumed them in a matter of months.
And all you can do is just sit there and watch.
A part from my co workers and a couple of my close friends, I kept my mother’s illness a secret. Not because I was ashamed and embarrassed but I did not want to advertise to the entire world of what she was going through out of respect to her and my family. I was not in the mind state at that time to receive countless of “Pray for mother and your family” or “I know what you are going through” or worse, people who automatically became certified online doctors, oncologist specialists and therapists attempting to give me advice that I was not just not ready or had the energy to listen, rebuttal or respond.
So you sit there, put on a front like everything is cool and continue on your daily routine, until one day everything crashes and you shatter into pieces unable to put yourself back together again.
And when you do, you continue to cut yourself from the shattered pieces.
My mother was diagnosed with glioblastoma brain tumor on the week of my birthday. For months she was complaining of a slight dizziness or what my mother called “feeling a bit fuzzy.” She also complained about how her sense of smell was off but she thought it was just her allergies or a cold.
One night my concerned father who could not bare it called me. “Your mom is not herself. She’s seems a bit off.” I was at work so I decided to bring her in and get her checked out. Now this is where the “everything will be okay mom you just need some rest” nurse thinking came to my mind. My mother was seen and immediately had a CT head to make sure everything was ok.
The CT head results were not promising at all.
One of the fellow doctors who saw my mother discussed the results with my mother, myself as well as my dad. The CT scan showed something but it was not clear if she had a stroke or a mass therefore, would be admitted for observation and to do a MRI. Of course again this where I continued to be positive: “Ok so if it is stroke, no big deal, she can have physiotherapy, take her meds, and be well taken care of as long as she continues to be active and fit.”
That’s when I received the call from my dad few days later that they found two brain tumors and that she would need to have neurosurgery done stat.
My heart sank but not fully. Ok a tumor. What kind of tumor? My dad was unsure and I was out of town at the time so he was not able to articulate well. Again, I tried to remain positive.
But it was more like denial.
I arrived the following day after my mother had her surgery. She was up, talking and in good spirits. Family members and friends visited her.
This is where my role conflict started.
Quickly the doctors and nursing staff were well informed that I was an ER nurse at their partnered hospital so I became the go to person for all the medical stuff. I was fine with this but the problem escalated when my family and others started appointing and using me as their medical reference and asking me 101 medical questions.
Yes I am in Emergency Room Nurse but I am not an oncology nurse nor do I specialize in neurosurgery. Yes I treat and deal with stroke patients and cancer patients all the time but my care is only on the primary first level basis. Once these patients are admitted and go to their assigned unit, they are taken of by nurses, doctors and other staff members who are specialized in that area. But that did not seem to matter to everyone else. They just saw me as the “Nurse” and threw all their questions, opinions, scrutiny and concerns to me.
And me being the son and the only child, I felt that I had no choice but to take it all.
2 weeks after her surgery we went to a different hospital which was an hour drive from our home which specialized in chemotherapy and radiation of brain tumors. The surgeons were able to only remove one tumor but were unable to reach the other one because removing it would affect major brain and motor functions. We went to three sessions before my mother’s radiation and chemotherapy schedule was established. Again because I was the son , the nurse, and the “knowledgeable one” I took the responsibility to drive my mother five days a week an hour to and from the hospital for her treatments. But deep down I wanted to this. This was my mother. She had sacrificed so much for me. It was time to return the honor.
As I continued this drive and passion to take care of my mother the role conflict continued. I was suppose to be the caring son who would do anything for their mother but at the same time I was looked at a nurse that was taking care of their patient and had to ensure that they had received the proper care and that they had knowledge up to the very minute of what was going. So every night I would research about glioblastoma brain tumors.
And every time I would read about it, my eyes would fill with tears.
The outcomes were never good. It depressed me, angered me. But I still remained positive. I had to. My mother was counting on me though deep down she knew things were not good. I would vent to my close friends about this struggle, all of them providing them the support as well as understanding what I am going through.
My mother was on her last week of radiation when she became extremely weak. So weak she could not get out of bed. My dad grew concerned and called the ambulance. She was again rushed to my hospital where she was treated. Her blood pressure was low and she had developed pressure ulcers from being too weak to turn herself in bed. Furthermore she was constantly vomiting. Things improved when she got better and then was moved to the rehabilitation unit so she can start walking again.
At this time I was starting to get burnt out. The constant trips to and from the oncology clinic and the working 12 hour shifts in between was putting a toll on me. I knew it but I could not let myself go weak. Not for my mother. Not this time. Then the further questions kept coming. “Why is your mother getting so sick? Is the chemotherapy making her sick? You are a nurse you know better you should intervene. They should stop the radiation and chemotherapy and go natural.” All of a sudden people who had no form of medical training were WebMD and google experts reading and rhyming off facts to me as if I should know and intervene. The problem is that I knew what was happening and I understood what was going on. And I knew that the outcome was not going to be good. And I was afraid.
I was afraid that my mother’s time was about to expire. But I was in denial. I still remained hopeful that my mother would pull through this. I mean this was a woman who sacrificed all her years supporting the family and even taking in other relatives into our home and establishing them with a foundation before they moved out.
My father received a call from the hospital the next morning stating that thing were looking worse for my mother. The end was near. My father and my aunt had gotten me up from bed and we drove the the hospital. It was time to face my fears.
And That’s when my world came crashing down.
Reality had hit me. My body felt limped, paralyzed. I was like a zombie. My aunt and father literally had to drag me out of the car and drag me into the unit that my mother was on. Imagine dragging a 6’0 240lbs big guy. I’m sure people watched. I’m sure onlookers pointed. I’m sure some staff recognized who I was. My aunt was scared. She had never seen me like this. In my catonic state I could hear my aunt frightened suggesting that I should go into emergency as I did not look good. My father refused. He knew that this was his son who was not in need of a medical emergency. This was a son who was in need of his mother.
My mother laid in the hospital bed. Weak, frail, her eyes barely opened. Her once smooth wrinkled free dark ageless skin was now pail dry like sandpaper. Her dilapidated dry wrinkled skin looked like deserted valleys that once told a story but now was abandoned. This was not my mother. This could not be her. It just could not. This was not her lying in this bed. I did not know this woman. But it was my mother, an angel in a death disguise. I sat beside my mother holding her frail hands. And without any warning or signal, I cried, whaling and yelling. I was completely shattered. Broken. Smashed. A couple of nurses who I knew from the unit was there and stood there. Broken, upset that their funny teddy bear nurse was on his knees crying at the sight of his dying mother. They held my hand and comforted me . They cried with me. It was hard seeing a fellow nursing colleague who is always happy caring on with jokes and making people laugh completely break down into pieces and seeing the one person who brought him into this crazy world now leaving it. I don’t know how my aunt and my father reacted or how they felt. The only person who I saw in that room was my mom. No I was not being selfish, I was scared of being alone.
Two days later, my mother’s pain and suffering would end. She would pass away in the afternoon. The charge nurse who called me (again a colleague whom I knew) found it hard for her to tell me the words. But she did.
And that bullet never felt so fresh and painful.
I slowly started notifying my close friends and family. They were beyond themselves. Tears and emotions enraged them. They could not believe it. I could not sleep that night. Everything was a blur. I hated the world. I hated everything. I felt like I was in a nightmare. I did not want to talk to anyone or anything. I wanted to be alone. I wanted my mother back. I wanted to kick Brain tumor’s ass. I wanted to kill that Brain Tumor but instead it killed my mother…it killed me.. it killed our family….it killed everyone who loved her. I woke up early the next morning and struck the courage and nerve to post a facebook status. I knew I had to as the word would spread and people would start asking me questions and posting on my wall “RIP” while other inquiring minds would be shocked and ask why. After typing the last word, I hit enter and watched as the paragraph became my status update:
“It’s 7am and I feel lost confused angry guilty and saddened with tears. I’ve kept this a secret from many because I didn’t want to tell everyone about this. Three months ago my mother was diagnosed with an aggressive form of a brain tumor. Being the bravebird, she underwent surgery, chemotherapy, and radiation. Unfortunately she became sick and had to be hospitalized but she remained strong and a fighter. Unfortunately she lost this fight and passed away yesterday. I am trying so hard to be positive but the tears keep rolling down my face. Mom…..I miss you so so much. You were taken way too soon from those who you’ve touched. Rest in peace Mom. I will see you in heaven when I get up there so we can be together again.”
The next couple of weeks would be a blur. I would get phone calls, messages, visits from friends and family. Arrangements of the funeral went over my head as I was not in the head space but somehow manage to answer all the necessary questions. The day of funeral still had me numb. Seeing my mother laid there in what look like an eternal sleep while watching my father, a big grown man for decades who I have never seen cry break down in front of me made me numb and scared unsure of what the future was going to occur. Weeks then turn into months. The phone calls subsided, the visits stopped and my father and myself were left and force to continue a new norm of a life. There is not a single day that I do not miss my mother.
Though her death is still fresh and strong in my mind and soul, keeping her memory has been therapeutic cathartic release for me . It also shows how one cannot take life granted. Aside from having hypertension she had no issues. She looked great for her age and worked really hard. Her death and illness impacted many of her coworkers. My mother’s passing has also made me realize on how nurses often face role conflict when dealing with death of a family member. This was a major issue for me. People kept looking at me as “the nurse” and instead of “the son.” Ironically this was actually brought up in family meeting with my mom’s attending doctor and my family. Every time when the doctor kept asking a question or decision all fingers were pointed at me. The doctor (whom I thank her till this day) basically said, “Guys, I understand Dwight is a nurse but you have to understand that he is also a son. He is not treating a patient. This is his mother, he needs to be a son just like you need to be her husband and you need to be her sister.” Those words still echo in my head. The one thing that I want to stress out and emphasize to the nth degree is that everyone grieves differently. There is no essential right or wrong way to grieve. There is though a right and wrong way on how to console someone when they are grieving. Remember they have lost a loved one, not you so please refrain from the “I know what you are going through” or “You should not be selfish in keeping to yourself, you should allow others to grieve with you (yes I had someone tell that to me and after I gave a dirty look she realized her mistake.)
Loosing someone who you love so much is detremental. You feel at times that your inner being that held you together has been sucked out. But sometimes remembering the good memories and thoughts can help you slowly glue those broken pieces back together. For me, it will take some time.
A long time.
Facebook Author page: Ford D. Barrett