Rest In Peace

My brother died last week after a lengthy battle with pancreatic cancer and we buried him yesterday. He lived for more than two years after his diagnosis. He survived surgery to remove he original mass, a complicated procedure that rerouted some of his inside parts. He also survived radiation and chemotherapy. Pancreatic cancer is a death sentence for almost all who are diagnosed. It is just a matter of time and the will to survive. Bob’s will was strong. He hoped for a miracle and it appeared that he did not believe he would die. Bob never seemed to outgrow that adolescent belief in immortality. He was also afraid to die up to the very end. Pain was what finally overrode both.

Bob had always been a survivor. In his early twenties he was diagnosed with schizophrenia. I don’t think anyone really knows when Bob began hearing voices, but I think most who knew him would admit that his struggles started early in life. He did not have a lot of friends, school was difficult even though he was intelligent and he never really seemed to fit in. He was often told he was lazy. He slept a lot and enjoyed video games before they were really popular. I remember him playing pinball, PacMan and other old school video games. I believe these were probably escapism from his voices and his problems. Later in life, he would use drugs and alcohol to quiet the demons. He served in the Army and got out just when the schizophrenia was beginning to strongly manifest itself.

I remember a time when a Bob liked to read books, take walks through A neighboring cornfield to visit the grotto, go to the park or play in the creek. He liked to make plans for his future family and the farm he was going to have. He liked to go swimming and ride the bike he earned from his paper route. Bob’s future was very different from the one he planned. But, who believes that they are going to grow up and suffer from mental illness and die at the age of 48 in a nursing home?

There are some who saw his struggles and judged Bob’s life. He was a hermit for many years who did not like to be in public because of the voices. He took his medication sporadically or not at all. Family members stopped visiting because of his living conditions and inability to interact socially. He received few phone calls because he often said strange things and made little sense. He was alone even though he did not live alone and he had an extensive family. There are also some who judge the way Bob was treated by that family.

The truth is, we did the best that we knew how. None of us could fix his problems especially if he could not or would not take his medicine. He was technically an adult even if he was not in a position to support himself. In his final two years, he lived in a nursing home where he received his medication regularly. The medication helped but did not completely resolve his symptoms. Bob saw each of his 12 siblings at some point during his last two years. Due to proximity and circumstances he saw some more than others. There have been judgements about that as well. My sister told me years ago as our grandfather was dying that you can’t judge other peoples’ grieving processes. At the time I am not really sure I really understood even though I tried to take her advice. I do understand now. My adult relationship with Bob was tenuous and fragile, but we grew up together. Our paths took very different turns, we made different choices and were dealt different cards, but our early lives were similar.

I was close to Bob when we were very young but by early adolescence our lives were changing. I tried at times to write and call and visit, but we never regained that childhood bond. I could not put myself in his shoes and Bob could not put the needed work into any relationship. I saw my brother just three times in his last two years, but ten years ago, I thought I would never see him again. I am sorry for all the pain and suffering that Bob endured in his life. It seems unfair that one person has to go through so much, but I truly believe there is a reason for everything. Whether you believe in God, Karma or something else, there has to be a larger purpose for everything that happens. We may never fully understand the bigger picture, but we have free will to make choices along the way and we carve out the lives that are meant for us.

Bob’s dying just like his living was somewhat complicated and messy. I am grateful that his final illness brought him back to us even if those bonds were loose. I may not always see my family or speak to them often, but, I know they are there and will do whatever they can to help me. I only need to ask. We each showed our love and affection to Bob the best we could. In the end I think he knew peace and the love and forgiveness of his family. I know he is now free from pain and struggle and I take comfort in that.



Final Plans

Today I had a conversation with my brother that I didn’t expect to have with any of my siblings for many years to come. I was visiting him in the hospital where he is in the ICU being treated for possible pneumonia and sepsis complicated by an immune system compromised by chemotherapy and radiation treatments for his pancreatic cancer. My sister and I asked him what life support steps he wants to take if it comes to that. He was diagnosed with his cancer six months ago after a bout of pneumonia and sepsis and he is still coming to terms with the fact that his condition is likely terminal. He doesn’t want to die and he doesn’t want to believe he is.

We also discussed a “final resting” or burial place and cremation versus burial. It was an awkward uncomfortable conversation but we got through it and even managed to joke. I know joking is a defense mechanism, but it also helped put him at ease. I am not sure we resolved anything, but the lines of communication are open and we will continue to have the conversation. There is still much to discuss and learn.

We learned that Bob had cancer about six months ago after a series of hospitalizations for pneumonia, excess fluid buildup in his stomach, removal of a mass in his liver, sepsis, and finally the cancer diagnosis. He is lucky that he went to the hospital when he did and he is lucky he recovered sufficiently to have the cancer surgery and then go on to have chemo and radiation. He has a tremendous will to live and I pray that he does not suffer immeasurably. He was having a lot of stomach pain when we visited him yesterday after he ate. The doctors are telling him he has gastrointestinitis or flu, but I suspect it is more. My uncle also has pancreatic cancer and his diagnosis was a few months earlier and he also has a great deal of stomach pain.

Prior to Bob’s diagnosis, he had not seen most of our family since 1999. It is a long complicated story, but Bob also is schizophrenic and that disease caused some behaviors that made it difficult for him to leave his home. His living situation was not conducive to welcoming family and friends. Cancer for him, has reunited him with his brothers and sisters and also allows him to receive medical care regularly. He is only 47 years old, but he lives in a nursing home. He is happy to be there, because he is well-cared for and his basic and medical needs are met.

Part of the reason, Deb and I were able to discuss death with Bob is that we have seen a lot of it. All four of our grandparents have died, we have both lost various members of our husbands’ families, but the hardest have been the deaths that have occurred in our other sister’s family. Just over four years ago, my nephew was killed with his girlfriend when they were driving home from dinner and a movie. It was an awful time for his sister and his parents and everyone who knew Chris. It was a terrible tragic accident and changed the lives of many forever. Navigating the sorrow and grief has been difficult and painful and is still an ongoing process.

Five months ago, tragedy struck Mary’s family again. Her husband was killed in another horrible accident. Everyone who knows and loves this family was saddened that my sister and niece had to go through such a loss when their grief was still so fresh. Those of us who are closest to the two of them are amazed by the grace and strength they show every single day. They continue to move forward even when they don’t feel like getting out of bed. They have kept busy and are honoring their son/brother and husband/father by making the most out of each and every day.

I don’t know that my brother will ever be able to live life in the fullest the way many of us are able, but he is enjoying his life and his family has rallied around him and are helping him. I don’t know how much time he has, but experience has shown me that none of us really know how much time we have. Enjoy your life and don’t wait until another day to start. Life really is short even when the days can be long.