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[back] Neglect in Family Members of People with Parkinson's Cheinhooi - 22 August 2011

Neglect in Family Members of People with Parkinson's

Parkinson's disease causes great distress to the sufferer. At another angle, the issues facing the patient's family and those surrounding him/her might be overlooked. A child whose parent has Parkinson's does not only suffer neglect but is to some degree homebound. It also affects the caregiver. In this article I will share my experience growing up with a father who suffered from the disease.

I was 2 years old when my father was diagnosed with Parkinson's disease. My father underwent frequent checkups and treatments, especially in the early to mid-stages of the disease. He could still run errands during the early stages. He denied having this illness despite various confirmations that it was Parkinson's disease. He would suddenly go into a rage and lose his temper. That was the onset of depression, which usually happens to Parkinson's patient. Gradually, his health condition deteriorated.

He once tried to look for me at a neighbour's flat located just above us. We lived in a flat on the third floor. A neighbour came and told me that my father had a fall. I am not sure what actually happened in that incident. I suspected he fell backwards while walking towards the neighbour's house. He had an unstable gait and lost balance even in the house. That condition made the family worried whenever we went out of the house.

My father would often talk to himself. My friends who came to our house would get scared when they saw him talking and laughing to himself. He lost weight and his posture gradually became distorted. Many times I would feel uneasy to invite my peers to my home. Being school children, they would guess all sorts of things, from my father having epilepsy to being demon-possessed. They had rarely seen a person's body tremble so much in their life. I would often have a hard time explaining his condition to them or to their parents. In the 1980s, the disease was a little known here.

At school, the pupils were frequently asked about their parents' occupation. I would feel very uneasy when my turn came and all eyes looked towards me. My heart would start pounding. A teacher would raise her voice when I kept silent. She thought I was not concentrating or paying attention to her question. At school, there were the school bullies, name-callings, taunts, and that sort. I always wished that my parents would defend me but was left to my own will to figure myself.

My mother worked in shifts: the morning, afternoon, and evening shifts. She often prepared meals for us whenever she was at home. However, due to work commitments, she would prepare the meals in advance, for example, she would prepare lunch before she left for work in the morning shift. When I got back from school I would have to warm up the food. I would at times just eat them cold.

A robbery once happened when I was in primary school. That day, a few of the children around my neighbourhood came to my house. They frequently walked in and out of the house. After one of the children walked out of my house, I heard a knock at the door. I opened the door and there was a dark skinned man at the door. The gate was wide opened. He gained direct entry and walked into the house and took away some money from my bother's room. My father was asleep in his room during the incident. It could have endangered our lives had my father been awake.

Although I was quite free after school hours, I hardly travel farther from my neighbourhood. Someone needed to be around my father most of the time. I could feel the invisible battle between my brother and I on who should stay home. Since I was the less sociable and quieter child, I was usually home after school. Holidays and school breaks were never spent on a whole family vacation. My mother usually opted out from any outings and events. Events, vacations and out of town trips without my parents around was commonplace.

In spite of those incidences, growing up with a father who had Parkinson's disease did have its joyous moments. I experienced a sense of belonging in my family. Occasionally, my family would have gatherings and meals as a family to celebrate birthdays and special occasions. My mother tried her best to give her children a good education, financial support and a place of comfort, even though she went through difficult times. There were wonderful times when she took a off day to bring the children for a day trip. I am thankful for my family, relatives, church members, friends, and people around for their encouragement during those years. My father suffered for 30 years with Parkinson's before he passed on at the age of 62. I was already in my early 20s at the time of his demise.

In a family with a Parkinson's parent, the caregiver can sometimes be overprotective. A caregiver may form some unfounded beliefs surrounding the sickness. She / he might not allow the children to carry heavy tasks for fear that could hurt their back and in turn lead to developing Parkinson's disease. Although a parent might mean well, their overprotective actions might not be good for the development of a child. These are just some incidents to highlight what children of people with Parkinson's might face. It is my hope that this short article can bring to attention the issue of neglect children and family members of Parkinson's sufferers are in danger of. The caregivers are often too engrossed with taking care of the patient that they overlooked taking care of themselves and the children under their care.

Chienhooi, not his real name, aspires to create awareness on Parkinson's disease effect on family members. This article was written in memory of his late father, "Hong" Chienhooi is now a member of the Malaysian Parkinson's Disease Association.