Contributors
Five years ago, my dad who was 53 was diagnosed with frontotemporal dementia. It was an age that no one in the family had expected dementia would strike. My dad was a taxi driver at that time and when he wasn’t driving, he generally led a sedentary lifestyle and loved watching TV programmes. During those days, his relief driver told him to play with stocks to earn quick money. As research was not done, he lost a substantial amount of money and ended up depressed for a period of time. Also, since he was driving from places to places, he ate out and frequently consumed food laden with monosodium glutamate (MSG).
Before the formal diagnosis of dementia, for 40 years of his life, my dad had been buying 4D, Toto and stocks. One would expect that this habit would continue the rest of his life. However, overnight, he stopped gambling and started saving money. This included cutting off my brother’s and my pocket money without any warning! We were still schooling then. He even added a timer to the refrigerator so that it would turn on and off every a few hours to save electricity. There were frequent arguments between my parents over the air conditioner as turning it on meant an increase in the electricity bills. There was tension every day at home.
I started suspecting that he might have dementia after he left the main door open on numerous occasions. One would come home from school or work at 11pm to find the main door wide open. On top of that, he started to have poor judgment in his driving and got into minor motor accidents frequently. Searching for keys around the house every morning also became a norm.
Deteriorating condition
As his condition deteriorated, my family faced more and more difficulties. These included:
- Suicidal tendencies: There were occasions when he threatened to jump. There was an episode when he shook the window grilles in the living room and the master bedroom. It was very scary to watch. He always wanted to work and he was very unhappy that he was not allowed to do so. We could not allow him to be on the road for the safety of the public. Days after we filed for Land Transport Authority (LTA) to revoke his license, a taxi driver killed two boys on the road. The driver could have been my dad. The family really did not want to live with such guilt for the rest of our lives.
- Tantrums: He would go into his tantrums if he didn’t know what was going on or if things were not going according to his wishes. When he was at home, he wanted to go out, but when he was outside, he wanted to go home. It was very difficult acceding to all his requests. There was one occasion where we travelled all the way to Jurong Bird Park and the minute we reached there, he wanted to go home. I almost cried out in tears.
- Disorientation: Time was definitely an issue for him. Whenever he took a nap, he would register it as a new day when he woke up. He would end up in a series of tantrums, claiming that we locked him at home, preventing him from going out. We had never prevented him from leaving and he even had his own house keys. However, due to his insecurities, he often wanted my mum to bring him out. My poor mum, whom had brought him back an hour before, had to deal with him again. There was also a day which he went out at around 3am with a pair of scissors wanting to take revenge on the company that had fired him. My mum got really worried to find him missing in the middle of the night. Luckily, he came back safe and sound because he forgot to bring his EZLink card. We didn’t know if we should laugh or cry!
- Hallucinations: He would claim that someone was instigating him to take revenge on the company that had fired him. The doctors then had to put him on extra medication.
- Dysfunctional logic: Every time he did his “big business” in the toilet, there would be a lot of fuss and tantrums. He would say things like “If I have to shit after I eat, why do I have to eat in the first place?” It sounded logical but it was a hard explaining things to him and in fact he got hospitalised on a few occasions for losing his temper over this issue. We had to get the doctors to explain to him that passing motion was normal.
In terms of the six activities of daily living (ADLs), my dad had trouble with four of them:
- Eating: He would stuff food in his mouth like a chipmunk. On some occasions, he would have a gag reflex but that did not stop him from stuffing more food into his mouth. We were very afraid that he would one day choke on his food.
- Bathing: When he bathed himself, his hair would be wet, while his scalp would be dry and he would not rub the shampoo in. He also would not soap himself properly and would often complain of itchiness on his scalp and skin. On certain days that he was in a bad mood, he would not want to bath. To minimise body odour, we had to sponge him with a towel.
- Toilet hygiene: He was unable to clean himself properly especially after doing big business. There would be faeces on his underwear. On some days when he bathed himself, he would urinate on the floor of the toilet until it reeked. When we questioned him, he would deny it.
- Dressing: He would usually wear clothes in the wrong orientation for both top and bottom.
Emotional rollercoaster
Our family went through an emotional rollercoaster. This included:
- Anger: Anger was one of the first emotions within the family. We had the notion that he was doing things on purpose in order to spite us. We didn’t know what he was going through, most importantly, we didn’t know how to deal with him. Anger was also displayed because he cut off the household expenses and pocket money when we needed them the most. Why then should we need to take care of you just because you are sick? Eventually, we took on the caregiving role as he became more and more dependent. After all, for me, he was the dad that gave life to me. It was definitely my responsibility to take care of him.
- Frustration and helplessness: It was definitely not easy trying to juggle two jobs and making sure that everything ran well in the family. There were times when I am working in school and my mum would text me – “Your dad is having an episode again, what should I do?” To be honest, I never knew how to deal with all his episodes. It was never easy. I just tried to settle whatever issues that came my way. With the addition of messages like that, I felt frustrated by my inability to handle things and helplessness for being stuck in school and not being able to do anything.
- Fear: There was always persistent fear that my dad might have an episode at any time and one of the family member could get hurt by his violent tendencies. As such, I lived in constant worry and anxiety each day. When I was at work, I was worried he would have another episode. This led to a chain of worries because I would be worried that my mum would not be able to calm him down or if my mum would get hurt by him. I also worried about his suicidal tendencies. It was basically worries after worries.
The road of caregiving may be tough, but we are lucky to be born in Singapore. Help is within reach and except for day care services, the family didn’t have to fork out money to get professional advice and counselling. I also tried to gain more knowledge on dementia by reading up from the Internet and borrowing books from the library. On occasions that we couldn’t cope with his behaviour, we would call the social workers for advice. During the time we were with him, we were able to pre-empt his actions through deciphering his body language and responsive behaviour. My mum would then use distraction techniques or try to coax him outdoors to calm him down. On times when we were unable to cope, we called the police and/or medics.
The family went through difficulties while claiming for his Dependants’ Protection Scheme (DPS). Since my dad does not have a Lasting Power of Attorney (LPA) and was assessed to not having mental capacity, a court had to appoint a deputy. I would strongly urge all of you who have yet to set up a LPA to do so as soon as possible to prevent going through what our family went through.
The tough decision
During my university days, the family was in pieces. On one or two occasions, my dad told me he was bullied at his workplace. I did not listen to him neither did I show him much concern. I knew that he was bullied partly because he looked down on his colleagues as he was earning more than them. It may also have been attributed to the resentment that I had for him for losing money to gambling and for cutting out all forms of allowance for me and my brother. Life was pretty much a struggle for the four of us. Maybe if I was a bit more empathetic then, things might have been different.
After his formal diagnosis. I was very frustrated and tired of his frequent erratic and stubborn behaviour. I hate to admit it but I did yell at him. I thought he was doing everything on purpose to spite us. I never understood what he was going through and in looking back, maybe I should have managed my emotions better.
As his number of episodes increased, with two major episodes occurring that involved the police and medics within a month, we raised white flags. I was very worried about my mum’s mental health and was afraid that she might suffer from depression. We found ourselves tearing every few days from frustration and helplessness. That was when I decided that enough was enough. Moreover, I was suffering from anxiety attacks in the night. It was definitely taking a toll on the family’s mental health. We also did not want to live in fear that he might one day jump off a building. It took us some time before we made a difficult decision to send him to a nursing home. The guilt ate at us. People may label me unfilial, but I truly had no choice, I had tried my best. The four years was indeed a big struggle for the family.
My dad is currently classified as category four in the nursing home now. He is reliant on diapers and requires round-the-clock care as he no longer has safety awareness. As dementia becomes more and more prevalent, I really hope that there will be a medical breakthrough to cure this terrible disease.
Lai Zhi Yin, 29, is a full-time tutor as well as a part-time relief teacher at a secondary school. She works to support her father’s medical expenses and his stay at the nursing home. She recently shared her caregiving journey at a dementia symposium organised by Lien Foundation and the Alzheimer’s Disease Association.
