It was another one of those (typical) days – long, lonely, painful, exhausting. No more visits from the “angel”, Deborah, or anyone else for that matter, except Nancy, Brian's sister, and her husband. The phone was silent. The doorbell didn’t ring. I didn’t have the strength to initiate anything. And if I did what was I going to say or talk about. “Hey good morning. This morning I took Brian to the bathroom. I wiped his butt. I showered him. I fed him. I put him in his chair to watch TV. I am tired because I was up all night turning Brian in bed, taking him to the bathroom or rearranging his limbs for him. So what have you been doing today?” I said to myself. I guess I could have faked something but I didn’t have the energy for that. My salvation was my time away with Gary at his activities and my visits with Nancy. That was if I could leave Brian with someone for a little while.
Before he was sick Brian was always busy with social and business functions and sporting events. He had two or three such events every week. We went to dinner. We attended weddings. We attended anniversary parties. We went on trips together. We visited people in their homes and they came to our home. Brian counted himself rich in friends. I never knew so many people before I married Brian. Brian thrived on this type of life. I would have preferred to have a little less social life.
After Brian was diagnosed with Lou Gehrig’s disease, he continued to go to the office everyday and our social life continued as before. There was an outpouring of sympathy and support that was unimaginable. I was touched and a little overwhelmed by it. As the disease progressed and Brian wasn’t able to get to the office or leave the house, his friends would call and come by. Brian’s condition worsened. His body further deteriorated.
“Hey how is he? I’m going to come over and visit tomorrow around 10. Is that OK?” one of Brian’s friends called to say. “Great. Brian will be very happy to see you and have some company,” I responded. Brian was waiting anxiously the next day for his visit. It was 11 and the friend had not arrived yet. I tried to call him but I couldn’t reach him. This friend didn’t come the following day either. He didn’t call to cancel or explain why he didn’t come. “Hey Brian he probably got busy and forgot,” I said. “Do you want me to call him again?” I asked. Brian was silent. I think he already knew.
I did call Brian’s friend a few days later. We chatted about his life and then I asked, “Did you forget about your visit to the house the other day?” There were some excuses and evasions. “What is really going on?” I asked. I didn’t want to promise Brian a visit on another day only to have him be disappointed again. I pressed the issue. The friend finally confessed, “I can’t handle seeing Brian like that. It depresses me. I can’t understand him when he talks. I don’t know what to say to him.” Other people said the same thing to me during the last part of the illness. I wanted to tell all of them, “This is not about you or how you feel. This is about Brian. He is sick, dying, scared and he needs some support and company.” But I was silent.
I judged and chastised these “friends” even if only in my mind. Maybe I should have said those things. Maybe if I had they would have come to visit Brian. Maybe they just sensed my hostility and that kept them away. I so wanted Brian to have visitors! Oh later I understood that seeing Brian reminded them of their own mortality and they did not want to be reminded of that. Still somehow I wished they could have put their own feelings aside for Brian’s sake. I didn’t say anything to Brian about my conversation with his friend. .
In those days I would still call “friends” to ask them to visit. They said, each in their own way, that same thing. I stopped calling. Brian knew that his was not a pretty disease and that his emaciated and distorted body was not a welcome sight. He was confronted with his own mortality each and every day. The lack of visitors only drove that point home. Brian stopped asking me to call “friends.” He accepted they were not going to visit him anymore. It took me a little longer to accept. Maybe I never did. There was little or no relief from the drudgery and monotony of each day. Nancy, the “kook” and her husband were the only visitors. And once a week the hospice nurse came. The doorbell was silent. The phone didn’t ring.
Q: What do we say or do for someone we know who is suffering or going through a difficult situation? Are there any magic words? How do we show them we care and are there to support them? Being present on the phone, via email or in person may be a good place to start. Words can be comforting but is there anything better than a hug or a touch of the hand to say you care? What do you think? How have you handled such situations? Would you do anything different now?
Q: What do we say or do for someone we know who is suffering or going through a difficult situation? Are there any magic words? How do we show them we care and are there to support them? Being present on the phone, via email or in person may be a good place to start. Words can be comforting but is there anything better than a hug or a touch of the hand to say you care? What do you think? How have you handled such situations? Would you do anything different now?
