Caregiving

On June 22, 2019, as he was lying in state, my brother Ed was exactly 60 1/2 years old. He was born on January 22, 1959. He died on June 11, 2019. We were both born in 1959. He was my Irish Twin.

I was devastated. For the past 29 years, I had been Ed’s primary caregiver. He became mentally challenged in November of 1984. His mental health declined rapidly for the next year. In November 1985, my father and I were finally able to get him help, as we became co-conservators for him.

Our father mostly handled Ed’s care alone until his death in 1990. After his death, it was my turn. I didn’t realize there was medication to help Ed cope with his paranoid schizophrenia diagnosis. He had take Haladol, Geodon, and was finally on Abilify. I learned that by trying different medications Ed could become functional, but there was no cure for his disease.

His illness was brought on by smoking marijuana laced with angel dust (PCP). Mental illness is one of the negative traits on our DNA and those drugs were the triggers for Ed’s decline. I didn’t understand what Ed was going through, but as time went on, I sought to understand. With the introduction of the internet, I was able to get to the National Alliance on Mental Illness (NAMI.org). Finding that organization was a godsend. With their articles on Ed’s illness, I was able to understand him better and to understand my role in helping him to live his best possible life.

Before his illness, Ed was a loving father, provider, and the special uncle everyone loved. In his illness, Ed needed patience, love and stability. At first, I didn’t understand that and he would have flair ups. I had to hospitalize him in a mental institution three times before understanding how to manage his care. However, once I got it, I got it. I attended or had my family to attend, every medical visit, every hospital stay and walk with him through whatever his illness brought on. We were armed and ready to fight this debilitating sickness! This disease would not easily take our loved one from us.

In 2005, he had a stroke that almost killed him. In 2015, he had a bacteria infection that ate part of his spine. Ed’s life was not easy, but it was memorable. Laying my brother to rest has disarmed me. I was not ready to arm myself with his memories in place of his presence. I will never forget the times we spent together, the laughs we shared and the love we showed each other. He was more than my big brother….he was my lifelong friend.

Ed was well known before his illness. But, after he became ill, he became a memory for most people. Every day he tried to sift through what was happening in his head. He’s at rest now. He looked so peaceful and relaxed. All of the stress and worries he had endured are gone. Thank You God for allowing me to be an advocate for Ed. There are so many things I have learned from him. These 29 years have given me enough memories until we meet again. Rest well, Ed.