He was the long awaited son; born nine years after the birth of their last daughter. The family of five couldn’t have been happier that September 1981 when Tony was born a healthy boy. That happiness was short-lived, however, when six months later Tony developed seizures. On the ensuing years, the family spent countless days in emergency rooms and long hospital stays for Tony as a baby and later as toddler. Despite frequent seizures, by the age of three he happily welcomed his little brother and at age five Tony was doing what normal five-year olds do—talking, eating, running, even riding his bike.
Soon thereafter, however, he regressed. Suddenly, it seemed, he stopped talking and started having bathroom “accidents” and his little bike was left rusting in a corner in the garage. 34 years later, Tony has profound mental retardation, is incontinent, walks little and with difficulty, has a feeding tube and is completely dependent on his caretaker--his aging father. This story is about this father, Armando.
As is the case in most households, the caretaking responsibility of the children and home is that of the mother’s for the most part. Tony’s household was no exception. However, eleven years ago Tony’s mom passed away suddenly from a brain hemorrhage. From that day on, Armando has been the sole and only caretaker for Tony. Despite Armando’s depression brought about by the early and sudden death of his beloved wife, he had no time to feel sorry for himself for he had a son who depended on him for his every need. Armando retired from his job on a manufacturing facility to dedicate his life to taking care of his son. He wakes up every day at 4 in the morning to get Tony ready for the day. This entails changing his wet diaper, dressing and grooming him, crushing about 20 pills and administering these and feeding him through the G-tube.
Monday through Friday Tony goes to a day care facility for about six hours. This barely gives Armando time to clean the house, cook, go grocery shopping, go to his doctors’ appointments, etc. By 3 p.m. Tony is home again and Armando continues with his routine of tending to Tony’s toileting needs, administering another handful of pills and feeding him. Finally, by 7 p.m. Tony is in bed and Armando quickly tidies up the house and gets himself in bed, tired of the day’s work. At 4 a.m. the next day, the routine of the previous day starts all over.
This routine has been interrupted many times when Tony has suddenly developed an infection (i.e., pneumonia) and has to be hospitalized or when he’s been sent home with 24-hour IV infusions. During these times, Armando gets by with very little sleep and less food. Despite all these difficulties associated with taking care of an incapacitated adult, Armando smiles and is happy that he at 75 years old and 120 pounds can still take care of his 34 year old, 105-pound son.
Armando’s eyes water as he contemplates his own mortality and wonders how long he can continue taking care of his son, but more importantly who will follow on his footsteps. He knows that his son will never get better and that he will always depend on someone else for his most basic needs. For now, seeing his son smile at him is Armando’s biggest joy.
Tony’s broad smile is that of a pure human being who’s completely unaware of his surroundings, but completely cognizant of the love and dedication of his father. And this is what makes taking care of Tony rewarding.