Excessive salivation and oral hygience

My father experienced excessive salivation since mid 2007. The condition got worst subsequently to the extent that he has to use a container as spittoon as he feels tired walking to and fro the bathroom every 10 minutes to spit and clean his mouth. He mentioned that the discharge had foul smell that he refused to swallow. He was also afraid that by swallowing the “smelly” saliva, he will get stomachache.

This condition lasted for several months. Suspecting it could be related to lung problems, my mom brought him to the specialist for chest x-ray. It turned out that the lungs were cleared. The doctor prescribed mucosolven to relieve his symptom.

However, the medicine did not seem to help much. My father mentioned that the saliva oozed out from the gum. So I decided to bring him to see a dentist instead. The dentist told me that my father has mild periodontitis (a gum disease). He wanted my father to maintain good oral hygiene by using antiseptic mouth rinse and a special toothpaste for the gum.

My father did more than what the dentist told him. He gargled with salt water in the mornings and after each meal in additional to using the tooth paste and antiseptic mouth rinse at night. He diligently followed these steps and meticulously observed how the mouth rinse and the tooth paste worked on him.

He reported to me that he could feel a protective layer covering his tooth after using the toothpaste. By using the antiseptic mouth rinse, the foul smell went away too!

After six months of hard work, all his efforts paid off! His condition improved tremendously and no longer experienced the smelly discharge.

The Part-Time caregiver

Despite having been away from home working and living in Singapore since Dec 1997, my relationship with my family has never changed. In fact, PD brought us even closer!

In 1994, my father was diagnosed with PD. I was still doing my lower secondary school then. Being the sole breadwinner for the family, he continued to work till 2000, when all of us graduated from secondary school. Since then, I took over his role to support my family and my younger brother's further education.

The initial years of PD was still manageable and trips home were less frequent. He was still very mobile and independent even in the advanced stage of PD. Most of the time, he would stay at home alone while my mom, a rubber tapper, goes to the rubber estate in the morning. As his PD advances, my responsibilities for my family increases. My mom had to stop work to take care of him and I started travel home every fortnightly since 2006. And weekly, since the 2nd quarter of 2008.

My parents had never liked the idea of having a domestic helper. So, we rely solely on my mom being the main caregiver to my father. While Im the part-timer.

Usually, I travel home by the KTMB train after I finished work on Friday. The train ride took at least 4 hours from Singapore to Segamat. I would reach home slightly before midnight and my mom will be picking me up at the railway station.

The primary duties as a part-time caregiver - took over my mom's duties (except cooking!) including dispensing medicines, accompanying my father for daily evening walk, doing simple exercise and stretching together, discussing and monitoring how the medicines is working on him so that we can better understand his needs, occasionally bring them out for shopping and dining, etc. I'm also in-charge of bringing my father to KL for medical reviews. As I have not been making use of my decade-old driving license, we have to charter a taxi for every hospital visits to KL. Travelling is a real challenge as my father has motion sickness. He would vomit almost every trip and feeling ill the next day. Nevertheless, he has never complained or whined.

Exercising

My duties start as I get out of my bed the mornings of Saturdays. By then, my parents would have already come back from morning walk. I would ask my mom the time the first dose was given and continue the subsequent doses. My father takes five times of stalevo (150mg) and requip (1mg) tds.

After morning walk, my father usually rest in the living hall where he wound karaoke or play harmonica while my mom starts preparing for lunch. We try to get him involves in tasks like peeling the sweet potatoes skin or tapioca leaves so as he doesn’t feel he is redundant. Never a chauvinist; he helps even without us asking!

Lunch is always ready before noon. By then, my father would have already taken shower and waiting in front of tv for the mandarin news at 12.00pm. While watching the news, he took his lunch.

Falling is almost inevitable in PD. This could be contributed by several factors such as freezing, loosing balance or changing position like getting up from sitting position to walk before they stabilise themselves. It could be due to postural hypotension as well. As my father had a few falls previously, we have to place the anti-slip floor mat in all the bathrooms.

Being a very careful and disciplined individual, my father also takes every possible precautionary measures to avoid from falling. He would hold tight to the handrails when he was going up or down the stairs. He also brings in a stool to the bathroom when taking shower. Whenever Im home I would walk him to the bathroom to make sure everything is alright. While he is taking showers, I would pop into the room just to make sure he is doing fine. Sometimes, hearing him singing while having shower put a big smile on my face!

After watching mandarin news, he usually takes a short nap. When he woke up from the afternoon nap, its coffee time. I'll make him a cup of coffee and sit down chit-chatting while watching tv. My father takes smaller portions of meals over several times a day. I remind him to chew slowly when he eats in order to digest better.

I have to constantly think of ways to help him kill time. I bought jigsaw puzzle for him to play. He is really good at them! He is known "the uncle who is very good at jigsaw puzzle" when my cousin's bro-in-law visited us and withnessed him playing it. Every two weeks, I add 2 new sets to his total collection. When my brother is home, they play Chinese chess.

Sometimes in the late afternoon, he goes out for his leisure 4D betting. If the weather is not too hot, he goes for walk and come home later to have an green apple one hour before dinner.

After dinner, he goes for evening walk. I remembered once, when I was with him walking passed a neighbour’s house. The female neighbour teased “Wow, you have a body guard!” He grinned and nodded in agreement.

Daily chit-chatting session

Evenings are mostly spent chit-chatting either at our porch area or my cousin’s house nearby. Im always impressed by my father’s compulsive neatness. He does everything within his means systematically. He washed the dishes after dinner and went for shower after that. I enjoy watching him using the powered toothbrush cleaning his teeth and followed by antiseptic mouth rinse. He never skips a step! Later, he changed to pajamas by 9pm to get ready to sleep.

The part-time care giver's job end here when he is sleeping soundly. Most of the time, I continue to stay in the living hall or even sleep there just in case he needs help in the middle of the night.

The voices of death

The morning of 25th October 2008 seemed to be the beginning of another ordinary day for Mrs. Low Zee Lai, a 59-year-old Chinese housewife. She had been the tireless caregiver and pillar of strength for her 60-year-old husband, who had suffered from Parkinson’s for 15 years. At around 8.30 am, she started her day by preparing breakfast for her husband. After breakfast, the loving couple went out for regular morning walk near their home, which was located at the outskirt of Segamat, a quiet and small town in Johore. By 9.30 am, both of them were back at home. As her husband rested comfortably on the lazy chair in the living room, and enjoying his favourite chicken essence soup, Mrs. Low went outside to sweep the floor at the porch. On and off, she stopped her work and peeped into the living room, to make sure that her husband was fine. At 10 am, she could see that her husband was still sitting on the lazy chair.

2007 - Mr. Low and his wife during happier times.

By 10.15 am, as Mrs. Low continued doing her work at the porch, she suddenly noticed the window curtain of the living room had been pulled down. Suspecting something amiss, she rushed back into the living room. But her husband wasn’t there. While her heart was pumping hard, she walked into his bedroom, which was located just behind the living room. For a short moment, she was stunned by what she discovered in the bedroom. It was a horrifying sight. Her husband sat motionless on the floor, with his head looking up and a rope tightly fastened around his neck. The other end of the rope was attached to a metal bar that was fixed on the wall, about four feet from the floor. It was the very same rope that he used to pull himself up from his bed every morning. While screaming for help, Mrs. Low frantically untied the rope. There were dark-red marks around her husband’s neck. His face was dark blue and swollen. There was no breathing motion at all. Her husband’s body was still warm. He had not been dead for too long – it all happened in just 15 minutes. Upon hearing the commotion, Rachel, her 29-year-old daughter, ran down from her bedroom upstairs. Despite knowing that it was already too late, Rachel immediately called for an ambulance. When the paramedics arrived, they confirmed that Mr. Low had died of suffocation. A few days later, I received an email from Rachel, informing me the totally unexpected demise of her late father. Even I was shocked to receive this tragic news because in my personal experience, Mr. Low was the first Parkinson’s patient who had committed suicide by hanging. I first met Mr. Low in September 2006, when Rachel brought him to my clinic. Despite his advanced stage of Parkinson’s, he was pleasant, talkative and quite optimistic. He was taking Stalevo (150) one tablet five times a day, Madopar (250) ¼ tablet five times a day, Ropinirole (2 mg) one tablet three times a day and Benzhexol (2 mg) one tablet three times a day. At this stage, his physical mobility was still good. However, he had started seeing some “ants” crawling on the floor (visual hallucination). Subsequently, his hallucination disappeared after I asked him to stop the Benzhexol. When I saw him again in October 2007, he complained that his body movement had slowed down during the previous two months. His “on” periods lasted merely two hours each, and sometimes his medications did not seem to work at all. He had difficulty turning his body from side to side while on bed. Even sitting up and getting out from bed was a challenge. He had rather moderately severe dyskinesia during the “on” periods. But, overall, he was still quite mobile and independent in his daily activities. Following optimization of his medications, his physical mobility improved. He was quite well till April 2008, when Rachel told me, “My dad heard voices of ‘people’ talking to him (auditory hallucination) at night. Apart from this, he was quite alright. His body movement was relatively good despite regular episodes of moderate dyskinesia during his ‘on’ periods.” As his hallucination was mild and not distressing, I advised her father to continue with the same medications. The last time I met Mr. Low was in September 2008, when his mental disorder suddenly flared-up. He behavioural changes were much more prominent at this moment. “He frequently talked to himself throughout the day. At times he was just mumbling some unintelligible words. He was obviously hearing voices (auditory hallucination) again,” recalled Rachel. “He couldn’t sleep till 2-3 am. When I asked him why he had difficulty sleeping, he said that the bed was wet due to the leaking air conditioner, which was untrue. He was always busy ‘talking to someone or some people’ day and night. Actually, I think he could not sleep because he was distracted by the ‘voices’. At times, he would walk around the living room, and up and down the stairs without any apparent reason. Around midnight, he switched the lights in the bedroom on and off repetitively, as though he was checking whether ‘someone’ was there.” “I was puzzled by some of his questions which did not make any sense at all. He asked me whether I was giving up on him, and when I would apologize to him. His mind was clearly perplexed.” “A few months ago, he told us several times that he wanted to move out from home. He said he was desperately trying to get away from the voices (auditory hallucination), especially that of a ‘master’, which he heard frequently at home. Usually, my dad could not remember the exact content of the ‘conversations’. But judging from the way my dad struggled to avoid hearing the ‘voices’, I think the ‘conversations’ were unpleasant. I can vividly remember that during one occasion, he told me that he felt insulted by a ‘taxi driver’ who commented that he looked like a sex maniac (auditory hallucination).” “He might had been very disturbed or offended by the ‘voices’, to the extent that on one evening, he ran away from home without my mom’s knowledge. Instead of bringing along his wallet, he took my mom’s purse which did not contain any money. Knowing that he needed help, he asked for some coins from the newspaper seller to make a phone call to my uncle. But he dialed the wrong number and could not get through to my uncle. Then, he decided to get the help of my aunt. Somehow, he managed to walk all the way to my aunt’s house even though he was already in his ‘off’ period. Subsequently, my aunt and cousin brought him home. On the way back from my aunt’s home, he told my cousin that he was actually reluctant to leave home as he was worried that my mom would be left alone,” said Rachel. In view of the severe psychosis, I started Mr. Low on Quetiapine (an antipsychotic) and asked him to reduce the dose of the Parkinson’s medications. Unfortunately, he could not take adequate dose of Quetiapine due to sleepiness. As such, his psychiatric problem continued to deteriorate. During the last month of his life, Mr. Low’s behaviour became more bizarre, which added further to the stressful situation at home. At times, he walked to the front gate and spoke to “someone” (visual hallucination) in Malay language (video segment 1). And when he was about to sit down on the chair, he heard voices of “people” saying “no, you can’t sit down” (auditory hallucination). As such, he started practicing the ritual of waving his left hand each time before sitting down on his chair, as though he was asking for the stranger’s “permission”.

Even while playing the jigsaw puzzles (video segment 2), he was “chatting” with a Malay friend. Occasionally, he made hand gestures which resembled the manner the Muslims pray (video segment 3). Looking back, Mr. Low had shown some early signs of suicidal tendency about one month before he took his life. “My step-uncle could recall that on several occasions, my dad had expressed his wish to die using the rope in his room. But obviously my step-uncle did not suspect that my dad was serious about wanting to die,” revealed Rachel. “In fact, my dad had once discussed the issue of suicide with me. He said that one needs a lot of courage to commit suicide. I told him that I agreed with him, and it is very silly to commit suicide.” Added Mrs. Low, “One evening, I found him holding a kitchen knife to his neck. Fortunately, I managed to grab the knife from him. Since then, I had to make sure that whenever I was not at home, the knives or any sharp objects were locked up in the drawers.” “Once, when my dad was having a nightmare, I heard him mumbling ‘don’t chop off my fingers’. I quickly woke him up and asked him what had happened. He told me that the ‘master’ wanted to chop off his fingers as a punishment for ‘committing a lot of sins’ in the past,” said Rachel. “After so many years of having Parkinson’s, my dad must have found it hard to cope with the increasing physical disability. He was also affected by the way the surrounding people reacted to him. Once, while undergoing his weekly massage therapy, he confided in the therapist that he felt inferior as he walked in a ‘jerky’ manner. Whenever he went out for his morning walk, he felt embarrassed when everyone looked at him. As such, he preferred to walk along the back lane of the terrace houses instead.” On 24th October 2008, Mr. Low went to the barber’s shop with his wife. “After finishing his haircut, he told me that he wanted to meet ‘someone’ in the town at 9 am. But after I insisted that he should go home, he reluctantly followed me. Once he was inside, I locked the main door. He became jittery and started shaking the door. He even threatened to swallow some pills,” said Mrs. Low. On the same evening, Rachel returned home from her working place at Singapore. She recalled, “When I reached home at 12.30 am, I asked him whether he wanted to eat the pancakes and kiwi fruits that I brought back from Singapore. He said he didn’t feel like eating. When I said that I would bring him all the way to Singapore the next time he wanted to try the same pancake, he remained silent.” “Even at 2 am, my dad was mumbling and talking to himself while in bed. He seemed to be deeply involved in a conversation with ‘someone’. I asked him to come to the living room to chat with me. But he refused. He did not turn around to see me when I talked to him. He was facing the wall throughout our conversation.” “When I told him that it was time for him to sleep, he replied ‘ok, I will sleep now’. As I could sense that something was really wrong about him, I stayed in the living room till 3 am, while keeping an eye on him.” That was the very last time Rachel spoke to her dad. Barely one week prior to Mr. Low’s demise, Rachel sent me an email to request for a referral letter. She wanted to bring her dad to consult the psychiatrist at the local hospital. Unfortunately, before she could do so, her father had unexpectedly taken his own life. “My dad had been an optimistic Parkinson’s patient all along. He had told me that even when he could not walk during the ‘off’ periods, he would even crawl in order to keep going. Even though he was not well educated, he had always taught his children to be honest, righteous and humble since young. He was well respected by family members and colleagues. He was a loving dad and husband who spent a lot of time with family. We had a good family life. Being quite an outgoing person, he really enjoyed the holiday trips, especially to Genting Highlands last year,” commented Rachel.

2007 - Mr. Low and his wife enjoying the “4D Motion Master” during a holiday at Genting Highlands.

“Having suffered from Parkinson’s for more than a decade, I can easily understand that he had been depressed. But I had never thought that a strong man like him would give up on his life, especially when he had received all the support from me and my mom. I think it was the irritating ‘voices’ that drove him to his death.”