Thursday, April 11, 2013 – Day 2
Alan awoke at 8:20 a.m. and I went in to be with him. He was alert, conversant, but had a hard time getting out of bed because he was not very steady on his feet. Because of this difficulty with balance, we wanted to prevent any falls.
One of my biggest sources of anxiety was my fear that he would have a fall and end up in the hospital or nursing home.
One of my biggest sources of anxiety, for the months prior to Alan starting the VSED process, was my fear that he would have a fall and end up in the hospital or nursing home. If that happened, I feared that the subsequent medications would have compromised his cognition. Then he would not have been mentally competent enough to follow through with his plan to VSED.
In these first days, Alan still turned to the habitual pastimes that had been part of his waking routine for months. For instance, he kept picking up magazines and appeared to be reading. He continued to listen to the radio. He had a miniature DVD player, and he continued to watch the same Seinfeld shows over and over.
During these first days, Alan did not want much pain medication because he wanted to stay as clear and conscious as he could. But he did have some various back pain and jaw pains. The caregivers explained to him the doctor’s recommendation of staying ahead of the pain. He smiled and nodded, “okay.” That established staying with a low steady dose of morphine for the first few days. On this first day, he was still awake at 10:20 p.m.
Alan told me ahead of time what music he wanted me to play for him throughout the VSED process. I honored that.
Friday, April 12, 2013 – Day 3
I spent time with Alan in the morning, and then by 8:30 a.m., Alan went back to sleep. Alan had his clothes changed (shirt and socks), but he did not want a shower. Alan was still able to do his own oral care and take a small sponge bath by himself. His urine was now neon orange which indicated changes in the hydration status and the beginning sign of renal stress.
By mid-afternoon, Alan started to get more wobbly. He got up with the help of a cane to go to the bathroom. He was still able to stand at the sink for teeth cleaning and a sponge bath.
By 4:50 p.m., Alan started to get twinges in his urethra and we learned that was from the tissues drying out. His morphine was increased to .2 ml every two hours and upon awakening at night to counteract the twingy discomfort. But he was still able to urinate. His lips were dry.
He was still awake a lot, but getting somewhat restless so we now had to monitor him carefully.
We wanted to respect and give Alan his privacy, but we needed to keep our eyes on him.
We had been relying on the baby monitor, but found that we needed to move a chair by his bedroom doorway. We wanted to respect and give Alan his privacy, but we needed to keep our eyes on him. It was no longer enough to just listen for sounds coming out of his room. He had wanted some privacy at first and we were not always in the room with him. He seemed to be okay with interacting with others, including the caregivers and a few friends who still stopped by. He wanted time to retreat and be alone with his magazines and Seinfeld shows.
While this was a routine day for Alan, it was an eventful day for me and the caregivers. Someone in the community, who was uncomfortable with Alan’s decision, called Adult Protective Services and a social worker came by with ten minutes notice. The social worker and I sat on Alan’s bed and talked with him so she could ask Alan questions and make her own assessment. I went upstairs and brought down the legal paperwork that had been witnessed and notarized; specifically, his Health Directive, the Alzheimer’s Disease/Dementia Mental Health Advance Directive, a notarized statement of “Release and Assumption of Risk”. This removed liability for anyone taking care of Alan. There was a long “white paper” document by Thaddeus Pope and Lindsey E. Anderson that discussed the legality and right to VSED. The social worker wrote a positive report and nothing came of the complaint.