“All those movies and books about Alzheimer’s? None of them described my dad. Nothing prepared us for what he became. It was a nightmare. He was aggressive but he was lucid. He knew who we were. He knew I was his son but that didn’t stop him from telling me that he wanted to poison me. Suddenly, he wasn’t my dad anymore,” shares Yap.
It’s been five years of uneasy sleep and constant anxiety for Yap and his 70-year-old mother who are the primary caregivers for K.S. Yap, 80.
“There were no signs or symptoms. There was only one incident where he seemed disoriented but we didn’t think anything of it.
“Soon after that incident, we woke up in the middle of the night to loud noises. He had moved a huge dresser to the centre of his room. We found him at the front door, screaming to get out. When we tried to stop him, he became violent,” says Yap.
And the violence did not cease – he was constantly on edge, lashing out at his loved ones, grabbing, kicking and hitting them. This, says Yap, was completely out of character for his father.
When they couldn’t cope with his behaviour, Yap started to look for homes that could care for his father. Unfortunately, no home was willing to take him in.
“Most said they couldn’t afford the risk of having him in their facility. He might be almost 80 but he was stronger than me. When we barricaded the house, he’d stack chairs or other things to climb over the barricades. We had no option but to restrain him… to tie him down. There was a lot of judgement about that but what else could we do?” says Yap.
Medicines didn’t help to control his aggression either. Doctors even administered a tranquilliser jab which was the only thing that could calm Yap’s father down, but only for two hours.
“There came a time when the hospital told us they couldn’t do anything,” says Yap.
He feels that Alzheimer’s aggression has not been highlighted much in the media and hopes that more awareness and information can be disseminated to help caregivers cope.
“We have to show that this side of Alzheimer’s exists too. I couldn’t find anything I could relate to and after a while I stopped trying to understand his behaviour. Alzheimer’s affects everyone differently and there is no one solution for dealing with the disease,” says Yap.
Universiti Malaya consultant geriatrician Prof Dr Philip Poi says that aggression and unbridled anger are seen in people with dementia when they are obstructed or upset.
“This can be as simple as if they are asked nicely to finish their dinner or take a bath. Even if the carer has tried to reason in a logical manner, it can trigger aggression in some patients. The carer has to alter their response or they will be at risk of injury. This is, of course, easier said then done,” says Dr Poi.
Sedation and medication can be a solution but it often leads to a host of other problems.
“Seek help early. Any signs or symptoms should be checked early. At an early stage, carers are also more able to think rationally and not be consumed by anger, hate or resentment. Unfortunately many seek help only when the situation is untenable,” says Poi.
Deidre Low, who runs the Caring With You Dementia Enrichment Centre, believes that there is always an underlying reason for aggressive behaviour. In one case, she relates, the demented elderly genuinely believed that people were trying to break into his home, which caused him to become aggressive.
“It may be something from their past but we have to find the reason and then work from there,” says Low.
For Yap and his mother, trying to keep dad and themselves safe took up all their time and energy. They didn’t even have the time to miss the person they once knew or reminisce about the “good old times”.
“Between trying to keep ourselves safe and keeping him safe, we had no time or energy. Dad was also diagnosed with Parkinson’s disease, and in the past year, he has been bedridden. This has reduced the violent episodes but there are other challenges,” shares Yap.
Caregivers, says Yap, need support from the government and community. The high costs of caring for an Alzheimer’s patient is compounded with the reality that many caregivers have to give up their jobs to look after their loved one. Yap counts himself lucky that he was allowed the flexibility to work from home or at odd hours when he wasn’t tending to his father.
“I was fortunate that my boss was very understanding. But I know many others who have had to quit their jobs. The medical supplies and nursing care cost a lot. My dad feeds through a tube which has to be changed regularly. This requires the services of nurses and doctors, which all adds up. His food is expensive too. Thankfully I still have my job and we have a devoted maid but I don’t know how the less fortunate cope. There needs to be more support,” says Yap.
Low’s centre (see main story) is the first of its kind in Malaysia and though they are not yet at full capacity, space is limited as the sessions are kept small to allow each client enough attention.
Realising that not everyone can afford to pay for the sessions, Low is working with hospitals and relying on donations to subsidise sessions for patients with dementia who cannot afford the fee.