“I don’t think your father is going to make it through the weekend.” The doctor of the convalescent home said to me as I was putting dinner on the table and collecting children. This was a bolt from the blue. My mother and I had spent weeks agonizing about how we were going to manage with my dad in a rest home. We were worried about the expense, the logistics of getting to see him as much as he needed, and his loneliness and despair in an unfamiliar place while he was sick. We had only thought about his well-being as he was alive. We had not discussed or contemplated the last days before his death.
Two months before this staggering announcement, I noticed Dad’s feet were bluish in color as he lay atop his bed reading. I called his primary care doctor who told me that it would go away after he walked around a little. Sure enough, after shuffling down the hall with his walker, his feet returned to their normal color. Before long, his breathing seemed more labored than usual. This time, I decided to take him directly to his doctor where we were referred for a chest x-ray. The technician took me aside and told me my dad was not going home. The technician has already called the hospital and they were making a bed available for him. He advised me to go find a wheelchair for my father and he assured me that he would have someone look after him while I was locating a wheelchair. The hospital was across the street from the x-ray lab. A little sandwich shop was nearby so I asked my dad if he would like to get something to eat before we went to the hospital. He was very interested and he selected a tuna sub with a root beer to drink. We resumed our walk to the main entrance of the hospital. I pushed the wheel-chair while he hunched over a little and clutched his sandwich and root beer tightly, as if they were an infant, or a cuddly stuffed animal. I left my dad parked next to a table eating while I went to the admitting desk. A bed for my father was ready and the nurse went to my father and said: “Mr. R, we have your room ready.” “Just let me eat my damn lunch!” Dad snapped back. I didn’t have time to evaluate this remark too closely but it made me sad and fearful. My eyes filled with tears as I appreciated this grip on his sandwich and the importance of the root beer while it was still cold and tasted good. The nurse intuitively told him to take all the time he needed.
After spending two weeks in the hospital, Dad was stable, but he could not stand even while assisted. The physical therapist who was working with him to help him stand said he was not co-operating. The respiratory therapist told us he refused to wear the “bi-pap” machine which would open his airways and get him more oxygen and strength. I did not want to browbeat a sick old man, but I feared what was in store for him. I pleaded with him: “Dad, please try to stand, please.” My mother and I wanted to take him home and care for him but we could not hoist him out of bed. We asked about hospice care but were advised that the remainder of his life was estimated at too long and his doctors would not refer him for hospice services which would have provided us with enough assistance to keep him in his own home. Dad had to go to a convalescent home.
I was utterly unprepared for this call from the convalescent home. “What do you mean? He is with you because he was going to live too long for hospice care. I have four sisters and one brother. We want to be with him when he dies. Two of my sisters live on the other side of the country. My dad wants to die at home. I know he does. What can we do?" The doctor tells me he can send him back to the hospital to be stabilized. Regarding hospice; he assured me he would “make it happen.”
Within ten days, Dad was stable, happy about going home and there was a hospital bed at home waiting for him. There was an army of social workers, grief counselors, nurses and aides coming and going. My sister Sue came from South Carolina to be available when Dad got home and would stay to the end. Mary from New York, Jane from Colorado, and Meg from South Carolina were all on their way. My brother Bob who lived within an hour was readily available.
Sue helped my mother rearrange the master bedroom. The huge king-size bed was dismantled and given to me. A twin size bed was put in the room so my mother could sleep near my father. I lived across the street with my six children and I could be with my dad anytime I was able to slip away. Unlike the convalescent home, family members, including children could visit Dad whenever he wanted. His last few weeks became a reunion. A celebration of love and life. After about ten days, Mary and Meg needed to return to their homes. They were sad about leaving, but they were filled up and ready to say good-bye. They stayed long enough and spent enough time with Dad that they would never worry about not being there for him, or regret never saying, or hearing “I love you” one more time.
Several days later, I am alone with my father. The others are running errands and I was sitting in a comfortable chair. I did not have to clean him, or change his bed. My presence was just that, a presence, a time to be near my father just for closeness. Since he was used to me tending to things, he said: “What are you doing here?” I said: “Just being here, OK?” He smiled, and drifted off for a little nap.
The next morning, my mother and I were in the room with him, visiting and chatting. My father woke and slept, off and on, all the time. I observed to my mother that he really hadn’t had any water to speak of in the last 24 hours that I knew of. My mother got up and picked up the bottle of water next to his bed. She said: “Bob, open your mouth.” She squeezed water into his mouth. The water just dribbled down the side of his face and into his neck. I noticed his tongue had a white powdery substance on it as I was wiping up the water. I found out later that it was “thrush.” Thrush is something people commonly have when they are near death. Later, the same morning, Sue, Jane,my mother, Bob, and me were around my dad. Meg had called him and Sue was holding the phone to his ear, he turned his head into the phone a bit more, smiled, and then became limp. We looked at one another. I put my face next to his, trying to feel his breath on my cheek and there wasn’t any. I looked at my brother, sisters and my mother who were looking at me. I said: “I think he just died.” My mother shook him a little roughly, and yelled: “Bob!” He didn’t respond.