Breaking down

I have had many fuck ups in my life. Some greater than others, but one stands out. In her sixty third year of her life my mother was diagnosed with multiple myeloma, a blood cancer. Her prognosis was terminal and she really deteriorated fast once in the hospital. Unfortunately she let her medical coverage lapse and had to enter the horrible world of public health care in the United States. Watching a loved one slow fade away while dealing with the horrors of the public health care has changed my perspective on the greatness of this country permanently. I would like to say I tried my best during this final stage of my moms life. Yes, I took the lead among my siblings durning her hospitalization, and I logged more hours at the hospital. However, I can’t say I always gave 100%. There were times I eased of the throttle just so my siblings could step up. In some ways I resented the role I had fallen into. In my early twenties my father was diagnosed with terminal stomach cancer and during that time I was his primary care giver. I took a semester of from school and was with him every second of the day, but that was a different time. I didn’t have a full time job, a house, a mortgage, a horrid boss that question me every time I took time off to go the hospital, and I didn’t have a relationship that was slowing dying with my long time girl friend. There were times I could of taken time off from work to be there with her, but instead I delegated her care to one of my siblings. This is something I find unforgivable in myself. I was selfish in her time of need. My hidden resentment had me keeping score of who did what and when. This invisible scorecard was hanging over me up until the day she died. It wasn’t my role to keep track of the hours my family spent in the hospital, but I myself was physically and emotionally exhausted. What was really upsetting was the fact that I lived the farthest and yet I was never missed a day, all the while my brother had time to work out, and my sisters still had time to go out for dinners. I wanted help and there were times I did voice my opinion, but I got tired fighting the tide of their selfishness. Once my brother had just returned home from school. It was about 7pm, and he said it was too late for him to come to the hospital. Visiting hours didn’t end till 930pm and he was 30 mins away. I received this message from my sister. I was upset, but didn’t lose my temper. Instead I called him and told him to come down now. He didn’t question me and was there in less than thirty minutes. I think this was the breaking point for me. After this I started holding back, and occasionally showing up late just so one of them could spend more hours. My mother always expected more from me and I started to resent her for this during this time. I still loved her and it broke my heart to see her mind and body fade away. She was only in the hospital less a few weeks when they considered her stable. She couldn’t walk or even stand, but according to the hospitals policy they only keep a patient until they are “stablized”. Nevermind the fact they can’t walk or stand. Makes me wonder what do they do for patients without families. Do the just drop them on the sidewalk and wait for them to come close to death again before admitting them back in. Fucken health care in America! Once when my mother was home she had a doctors appointment and I was scheduled to take her to this appointment. My brother didn’t work that day and I knew it was possible for him to take her. Some how I was still on task to take her. I was at work, it was a busy day, but I could’ve left. Instead I told my mother I was running late in the hopes that she would make the logical decision to get my brother’s lazy ass to take her. She didn’t. Instead she waited for me. This made me angry so I started ignoring her calls as her appointment time approached. I let her wait two hours until I decided to show up. What I saw when I arrived broke my heart. She couldn’t walk unassisted and this point she was weighing adult diapers. Due to the nature of her disease she lost control of her bladder. My sister had dressed her and my brother helped her to the couch where she sat for several hours waiting for me. Her diapers was overflowing with urine and had soiled the couch cushion. I felt like a complete piece if shit. I let my mother sit for hours in her own urine for hours because I was feeling overwhelmed. I could’ve spoke up. I could’ve said something. I could’ve yelled at my brother and made him take her. Instead I just played this cruel game of chicken hoping my mother would actually make one of her other children step up instead of leaning on me. Regardless of what was going on in my head I will regret my decision that day to make her wait needlessly. It sadly didn’t stop there. The day finally came for my mother to be discharged. At this point her health was much worse. She would require full time care, and looking back I feel that we could’ve tried harder at this point. Since we all worked full time we felt at this point our only option was a nursing home, but without medical insurance the options were grim. We called around and finally found one we thought was acceptable in highland park. Our assessment was based on limited knowledge, but this was another decision I will regret until I die. This was my mother, she would of moved mountains for my safety and yet I allowed my family to make the selfish decision and have her admitted to this horrible place. I was with her the night she was moved. It was 11pm by the time she was moved. Everyone had left. The EMTs loaded her to the gurney and I walked with her to the ambulance. I then followed the ambulance in my car. It was about a twenty minute drive through the winding streets of Highland Park. I’ve never felt more alone than I did on that drive. I really felt like I was helpless in my situation. The hopelessness made the night seem darker than it was. Still I tried to keep an open mind about this nursing home. I stayed with her till morning sleeping on a chair beside her. In the morning I called work and let them know I was taking the day off. The next few days were a blur. It took about a day for us to realize we had made a mistake. My evil sister used to joke with my mother ad tell her that when she got older she was going to put her in a home, and my mother would always turn to me and say “Joseph wouldn’t let that happen.” I never thought I’d let this happen, but I did. The next few days we did our best to juggle our lives to limit the time she was alone in this place. It’s was a sad place. Her room was shared by two other patients. It was small, and cramped. The paint was faded so bad it made it impossible to determine the original color. There one small old 10 inch television all three occupants had to share. It took all my strength to maintain a smile when I looked my mom in the eyes. Really all I could think was, “is this the best we could do?” She deserved so much more. Finally one the third day something in me snapped and I knew I had to get out of there. I wasn’t sure how we would do it, but I gathered my siblings and aunts, and put together a schedule for her care. Later that afternoon I left work early and was excited to tell her she was going home. I informed the doctors and they scheduled a medical transport later that day. Before she could be discharged the doctor asked we wait for the blood results from the tests they took earlier that day. The results showed her red blood cells were low, and the doctor immediately put in the orders for her to be admitted back into the hospital. I followed her ambulance back to the hospital, and stayed with her till the transfusion was complete. It was about 1130 pm, and before I left her for the night I waited for the nurse to check her vitals on last time. She noticed her blood pressure was low and her temperature was also a little low. Nervously I asked the nurse what does that mean. She assured me there was nothing to worry about. It was late and I was exhausted. I told my mom I loved her and kissed her goodbye. I reminded her that she was going to get to go home in a few days and she smiled. Little did I know that was a lie. The next morning we were informed she had developed sepsis, a very lethal blood infection. She slipped into a medically induced sleep and died just after 930pm that night. In the final 30 minutes of her life I sat there watching there heart monitor as the beeps grew farther and farther apart, and I kept thinking was I just wanted to get her home. Maybe if I made my decision to bring her home one day so she would’ve lived longer. Did that filthy nursing home cause her fatal infection. I will always wonder if my selfishness during those final weeks sped up the onset of my mothers death.

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