This post is in reaction to the three months my brother Bobby was hospitalized until his death. It is full of rage, hurt and desperation and deals with the insanity of thoughts that come during a period of extreme stress and pain especially as a caregiver. It by no means is giving fault to or accusing anyone of anything. So kindly do not take offense to how my mind works or how I need to process the experiences of life.

01/30/2023

Death is an experience hard enough to comprehend, but never in my wildest dreams did I think I would be faced with the loss of my brother prior to my mother, and the inability to say goodbye. In making the decision to become a caregiver in 2018, I never anticipated the struggles and emotions that would arise during this last year. Today I am going to speak about how this decision that I made to care for my mother inhibited me from seeing my brother Bobby before he died, the excruciating pain and emotions I felt during the time of his illness and finally not being able to speak to him or see him while trying to care for my mother and maintain a joyful household for her.

My brother Bobby and I were always close, he was 17 years my elder, and we maintained a relationship even though we always lived far away from one another. My brother suffered from alcoholism, prone to aggressive behaviors and was nothing more than an annoyance to most others because of it, even to me he was at times. During this last year we spoke almost every day and we bonded in a way I never thought possible, and I thank God every day for giving me that time with my brother; it is that bond that was my salvation.

Bobby was diagnosed with cancer in the beginning of 2022, went through radiation and chemotherapy and was scheduled to have an esophagectomy in October last year. He spent 12 weeks and 2 days in the hospital and up until the last 2 weeks we all believed he would be coming home, even though there were many days where he was in critical condition. This belief came from information from the doctors and not just the hope we all had.

Whirlwind of emotions

How do you express the insanity of a mind that is running off of fear and desperation? Not being able to speak to Bobby was more than a nightmare. After my brothers second surgery he was no longer able to verbally communicate because they gave him a temporary tracheostomy to help him breath; therefore, the last two months of his life he was only able to write (when he wasn't sedated) to express what he felt or needed; consequently, his needs were not properly being met and both he and the nurses were more than frustrated. For me to not be able to speak with him to understand what he wanted made me sick to my stomach, and still does when I think about it and how he was being treated. It was little consolation to call the nurses station every day, yet it was my only connection to him and believe me that was no sense of connection! I needed a point of control to defer the helplessness of being so far away, I needed to feel in some way I was by his side and in touch with him as I had been throughout this battle, especially after the exchange we had before the second surgery. A conversation that has left a very heavy impression on my mind. His last words: scared and crying “There putting another tube in me sis” click. That’s it; he dropped the phone and all I heard was confusion before the phone was disconnected by a doctor or nurse. The intensity of the fear I had in that moment is indescribable and even though I tried to call back no one at the hospital responded and all that was left to do was wait and wait until the next day. To wait and wait, that defines the experience of these last 12 weeks; minute by minute, second by second. Time simply stops when your heart is being beaten by an invisible intruder and you are trying to have patience and live your normal life and take care of someone who suffers from Alzheimer’s and needs you to be happy and calm.

One of the most overpowering thoughts I had over this time and the most agonizing, was that I should have been by his side! We were the closest, and everyone should have respected that and helped me to get to him, because I would do the same for anyone else in my family. Yet no one seemed to understand my pain or desperation to be blocked without a choice (so I felt at that moment). That belief coupled with other troublesome thoughts ruminating in my head were a combination for disaster: No one else could give him comfort like myself or fight for him like I would have. These repetitive thoughts that come in moments of traumatization seem real, they are consuming, snowball and cause extreme agony and/or anger, because they are based on personal feelings, fears, hurt and desperation not facts. They do not take into consideration life and the extent of others’ emotions and feelings. It is ego, and as hard as that is to except it is the truth. It did not matter that other people loved him too, when I was being consumed by my mind which was insisting that no one can ever do enough or be good enough as me! I had to let these thoughts run their course and I talked about them continually with my dearest friends (and by the grace of God I have friends that keep me in check and tell me when I am going into wonky land). They let me vent, they let me express my anger then they bring me back to view all sides, if I am not already trying to understand them myself. I am grateful and I am blessed.

Bobby and I spoke about the fact that when he went into the hospital, I would not be physically there for him. We were ok with that idea because we both agreed that my mother was first priority; but in retrospect, we both also hoped he would be survive. This agreement was not a consolation when the situation changed, and I knew I would never see my brother again.

Trying to find a solution

I started a family chat group, in part because I am 6 hours ahead of my family so trying to talk to everyone when my mother was napping or sleeping is difficult. It was also done in hopes to create an environment where my brothers need for help would become evident. I could not deal with the fact that he could not communicate, was alone and without support of his family to protect him. It was beyond mindboggling for me and set me often in a tailspin, I felt like I was in constant manipulation mode to try to convince people to go see him for me! I felt crazy and more so helpless for him.

Video chat

During the last month of his life, I was able to video chat with him; to see his face and tell him I loved him, 4 or 5 times when my sister was visiting. I cannot express the degree of emotion I felt just seeing his face, the joy it gave me. I will be forever grateful to my sister realizing my need to see my brother. It does not matter that I did not know what to say, sometimes all I could do was cry or sometimes my mom was there so we just waved. For him to see me smile, touch my heart and blow him a kiss filled my heart and I hope also his. He mouthed the words I love you, gave me the finger because I told him he looked good, and we knew that he was at the end.

Dealing with Elda

During the last months of Bobby’s life, I couldn't do much of anything, work on my site, write, care for my mom or whatever; and talking about what was going on was difficult. I was seemingly paralyzed and just did not know what to do. I really wanted to believe my brother was going to get the hell out of the hospital and quite frankly could not process what was happening; there was desperation on everyone’s part because we all thought he was recovering and getting ready to leave the hospital to go to physical therapy. My mother is very emotionally consuming normally and she was in overdrive for attention. She was also feeling the strain of my brother’s illness and saying arbitrary things like my son is hurting he wants to die or it's too late he can't do this anymore. Between my own emotions and hers for the first time as a caretaker, it became too much for me to handle. These emotions between myself and my mother ate away at my heart and were exhausting, adding to an already crushed spirit because I could not see or speak to my brother. The choice to care for my mother is a choice I have to live with, and I am ok with that; I have to be. I do believe my mother would have preferred I went to be with Bobby. I actually tried to go many times over the last year; however, I could not manage to execute that decision (even for only 4-5 days), nursing homes were booked up and an aid could not come to my home because we did not have adequate space for them to stay. The fact that I felt blocked consequently, added more anger to an already difficult situation, caring for my mother became extremely heavy the last few weeks. I did not want for one minute to be with her, yet I couldn't get angry because she was suffering too; whether from sensing her son or her sensing my despair or a combination of them both!

I had to hide the tears behind my eyes and my emotions behind smiles and outbursts of laughter, dancing and play acting as we do all the time to keep my mother happy and despite a few outbursts of serious anger, aggression and resentment on both the part of my mom and me somehow, I am getting through this. I believe I processed a lot of this along the way, through communicating with my friends and dealing with doctors, nurses and everyone else. I have to live for my brother, and I have to make sure that I am healthy and sane to care for my mother without anger or rancor, until she chooses to join him. I chose this path, and like the rest of life it has presented numerous difficulties, especially the death of my brother! This was extremely devasting and something that shattered my heart, but here I am finding comfort in writing and venting my pain by telling my story. I remind myself every day that everything in life is just a short journey and soon will be in my past like all the other events of my life, just a memory. I will heal each day, I will cry when I can and I will believe my heart is with my brother. I am grateful that I have such a beautiful group of friends that not only listen to me but bring me back to reality when my compulsive thoughts or behaviors take me for unnecessary trips. Having a strong backup is essential, it has kept me grounded has made me look at life from other people’s perspective and most importantly to not hold grudges.

Leaving the hospital

They told my brother he would never leave the hospital, but he refused to die there! The doctors with the help of hospice finally agreed to let him go to his son’s home to die. He left the hospital on the 20th of January at noon and arrived at his sons around 2:00 pm my brother died shortly afterward (approximately 6:15pm) in peace and out of the hospital.

I am a person who has a lot of faith, and it seriously was put to the test during the last 12 weeks! Frankly I will freely say if there is a God, no one should have to suffer in the way my brother did! He was tortured mentally, physically and spiritually and for what? To die? I cannot wrap my hands around it and never will. But I know this my brother was strong enough in the end to get home!

A nice memory

Just to share one of my favorite memories of my brother. In 1981 Simon and Garfunkel had a free concert in Central Park NYC (there were 500,000 people). I asked my mother if I could go, and of course she said no, I was only 15 at the time. My brother Bobby had a business, he was a tree man and a landscaper; strong and beautiful as a Greek God and at work by 6-7am every morning until 6 or 7 at night. I asked him to take me. He worked all day, approximately 12 hours, came to my moms, took a shower and drove me to NYC. We had to park a few miles away and walk to Central Park because there were already hundreds of thousands of people. We found a nice spot among the crowd and listened to the music. At one point I was standing trying to see the stage, but couldn't, my brother tired as he was after working a long day put me on his shoulders, walked me through the crowd until I could see to watch the rest of the concert, just to make me happy. When it was over, he bought me a T-shirt and we went home. That was more than 40 years ago, and I remember his gesture of kindness to me like it was yesterday. You are always in my heart, I love you Bobby!