Family photo: Ian Goh (standing, right) with his wife, mother and father
IAN Goh, a “graduate” caregiver shares his experience on caring for his Parkinson's father (in Malacca) who passed away in December 2000, three years after diagnosis of PD and five years after signs of onset manifested. He learnt the hard way about providing the best care for his father in the short time and hopes that sharing his experience might help other caregivers in similar situations.
"It began in 1995, when my father, a retired school principal turned 70. We noticed that his speech was slurred, he coughed a lot during meals and had problems with balance and movement. He was easily irritated and impatient with the people around him, especially my mother. A heart specialist diagnosed him as having mild stroke but brain scans did not find anything wrong. His problems with balance resulted in many falls, one of which caused a hairline fracture on his cheekbone and landed him in hospital. In 1997, a doctor identified Parkinson’s Disease in dad. He was prescribed Madopar HBS and it helped significantly. Later, we consulted a neurologist who diagnosed Dad's PD at stage three. In retrospect, I believe earlier detection of the disease and proper treatment may have slowed down the progress of the disease.
"By late 1997, Dad had difficuty moving around the house, especially in the bathroom. To prevent him from falling in the bathroom, we installed handrails at critical spots (next to toilet bowl, under the shower and next to the sink at about waist height). To allow him to move around the house more easily, large door handles were fixed at door frames - as he'd frequently freeze at the doors. Although a walking frame was bought immediately after he was discharged from hospital, dad refused to use it as prescribed. Instead he carried it around like a skirt. We also bought a Comode chair for him so that he could sit while bathing by himself.
"There was always the possibility that he'd fall backward when he sat on lighter chairs such as dining chairs, so we'd place the chair against the wall, place him in it and dragged the dining table to sandwich him. We also made sure that all the chairs he sat in had arms, even those at restaurants. To prevent Dad from falling off the bed, we changed his bed to one with side rails, and the height of the bed adjusted to suit him.
"By then, dad\'s speech also got worse. He was able to say only a few words at a time. He also had problems writing as he couldn't use his right hand. He seemed to be very easily distracted. To speak to him, I had to try and focus his attention on me and get him to say what he wanted. Questions had to be phrased so that simple responses could be given. He still coughed a lot during meals and coughed and wheezed during sleep. All this while my mum was living alone with dad. She refused to get a maid initially had to agree to get one when she could no longer cope. Luckily the Indonesian maid turned out to be wonderful. Other than helping out with housework, the maid also helped dad to take short walks, and helped him to get up and sit down.
"At this juncture, my mother had to take over jobs previously done by Dad - like going to the bank, paying bills and so on. Mum changed from being dependent on Dad to being independent and in the process, learnt many things. But being the primary caregiver and being alone with Dad, she went through a roller-coaster emotional ride which took a heavy toll on her.
"However, all these did not prevent the family from going for holidays. It required plenty of prior planning. We had to make sure that all necessary things were available, for example wheelchair and assistance at airport, hotel bathrooms that had separate showers with removable shower heads, plastic chair for Dad to sit while bathing. Apart from trips to Penang, Port Dickson and Kuala Lumpur, we also brought Dad out on short drives whenever possible.
"Not long after, we also focused administrative matters which included making a will, changing dad's bank accounts into joint-accounts with mum or myself. As he could no longer sign his name properly, all legal documents which required signature were converted to thumb-print. During this time, too, he fell and was hospitalised several times. We always had a bag and first-aid kit packed ready for hospital.
"By late 1998, Dad was diagnosed to be at early stage four. He was losing weight drastically. He couldn’t speak and was reduced to using yes/no signs to communicate. We tried various methods such as using cards, alphabet sheets and writing on a white board. Our efforts proved futile. Due to his weight loss, the doctor advised us to put dad on a high fat and protein diet. However he could only take soft food as he had difficulty eating and swallowing. He coughed and choked a lot during meals and could only drink very slowly. His diet was changed to porridge with minced chicken or fish cooked with chicken stock.
"Dad's mobility became very much reduced. We tried various alternative medicines such as reflexology, herbs for cough, colour therapy, etc. We also considered surgical treatment in Guangzhou, China. When dad suffered his first attack of pneumonia and was hospitalised, the physiotherapist taught us how to do chest percussion and blind suction. We bought a suction gadget and helped clear the mucus from his lungs twice a day. This reduced the risk of infection. Dad coughed less and could sleep throughout the night. As time passed, the maid was trained to take on more responsibilities including helping him in and out of toilet, and bathe and feed Dad. He now had to urinate on bed. For his drooling problem, which was messy, disposable dental bibs were used. Dignity and appearance was important to Dad. We made sure he was clean shaven so that there were no whiskers to trap food. We also found a hairdresser who would do house calls.
"By the end of 1999, he was in stage five. He began to have bedsores. For this an air mattress (ripple mattress) was used. The family celebrated dad's 74th birthday in Kuala Lumpur. The bedroom and bathroom were renovated and suitably equipped to meet his needs. Dad loved company and enjoyed having people around even though he couldn’t talk.
"By 2000, he was very frail. Eating and communicating became even more difficult. The family decided not to use a feeding tube until as late as possible. We tried to maintain quality of life for as long as possible. A nurse was engaged to make nursing visits once a week.
"Towards the later part of the year, pneumonia occurred more often and Dad had to be hospitalised as often as once a month. He was very stiff and very little motion was possible. He passed away on Dec 14 of acute pneumonia.
"Looking back, during a short span of five years caring for dad, I find that we did right coming up with creative ideas to keep him as independent as possible and also in making sure mum was well-supported. On the other hand, there are also things that we could have been done better, such as earlier detection of the disease and correct diagnosis. I also felt we should have educated ourselves more on the care of the elderly and thought about playing board games such as chess or draughts to keep dad occupied and entertained."