Brian’s walk became increasingly unsteady as ALS continued to ravage his body. He would teeter and totter when he walked and I was terrified he would fall down. He started using a cane to steady himself. He couldn’t use that for very long because he couldn’t hold it when he lost the use of his right arm. I bought a wheelchair and put it in the family room hoping he would use it. It sat there empty for quite a while. Brian was having difficulty standing for any extended period of time. He was becoming fatigued very easily. One night we had a few of his high school friends over. He grabbed the wheelchair and sat in it. He was able to move around to talk to everyone that way. It still sat there empty for a while after that.
“Do you want to rent a wheelchair for the day?” I asked Brian. He just ignored me and my request. I didn’t say anything else because I knew it was useless to do so. We started walking through the zoo. Brian started to get very tired. He found a bench to sit down. Without asking him I went back to the entrance and rented a wheelchair for the day. I arrived back at the bench with the wheelchair. Brian didn’t say anything. He just got into the wheelchair. He looked haggard and defeated. Brian refused to look at me for the remainder of our day at the zoo. He seemed to feel a little better when Gary asked to ride on his lap. At two years old Gary thought it was great fun.
The phone rang. I picked it up. “This is Officer Smith of the Police Department. We would like you to come to the police station tomorrow at 10am to talk to us about your son, Samuel.” “OK” I responded. I hung up the phone. “Who is it?” Brian asked.” I lied. “It was nothing important,” I said. Brian accepted that answer. If he weren’t sick he would have known I was lying.
“I have to go to the bathroom,” Brian said. He wasn’t able to physically shake me at this point in time. “OK,” I said. “Just give me a minute to wake up,” I replied. “I have to go right now!” Brian said desperately. Patience was never one of Brian’s virtues but, in his defense, who knows for how long he had been trying to wake me. His voice was not very strong at this point in time. I walked to his side of the bed. I wrapped my arms around his waist and hoisted him to his feet. He steadied himself for a minute. “OK” he said to me. We started to walk very slowly to the bathroom. Brian held onto my arm as he shuffled his feet. I lowered him onto the toilet seat. After he was done I leaned him against my body as I reached around to wipe him. I pulled his bottoms back up. (We had actually done this in an airplane bathroom on several occasions). We proceeded slowly back to the bed. Just before we reached the bed Brian lost his balance and fell to the floor with a thundering thud.
“Help, help,” Brian was pleading. I was frantically pulling and tugging to try to get him on his feet. It was the middle of the night. Last time this happened my Father had been around to help. He wasn’t here now. “I’m going to have to wake up Samuel,” I said to Brian. “”Please don’t,” he pleaded. “I have to. I can’t get you off the floor,” I said. I rolled Brian over onto his back and put a pillow under his head. I went to get Samuel. Samuel and I managed to pull Brian off the floor in increments using a vanity stool and to get him back into the bed. Brian would fall a few more times before he finally agreed to use the wheelchair all the time.
I would need a break from the physical demands of caring for Brian. I knew he didn't want anyone but me to care for him. I knew I couldn't last much longer. It would take maybe more strength than I thought I had to face Brian's anger and my guilt when I finally decided to get some help. (To Be continued)
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