There are always two ways of dealing with a patient. One that is difficult for the patient, and another that is difficult for the caregiver. Despite the hardships, Shima Hussin shared what it was like taking care of her father after he was diagnosed with dementia in 2015.
Adjusting to behavioural changes
Dementia is described as an impairment in memory, communication and thinking. According to Medical News Today, it is a collective term used to describe various symptoms of cognitive decline, such as forgetfulness.
Even though he was diagnosed with dementia in 2015, 71-year-old Mohammad Hussin remained optimistic. However, his daughter Shima Hussin did not quite agree with that as she saw that as only a diversion.
“Whenever he goes through a sudden decline in memory, he would always say that he’s alright. But we believe that he was in denial and his mind is actually trying to make sense of his situation,” Shima disclosed.
Hussin started showing changes in behaviour and habits in 2014, and his wife noticed it. “A few incidents happened such as the loss of his briefcase and his diary. Apart from that, he also seems to be at a ‘loss’ worrying about it,” said Shima.
Despite the early signs, Shima and her family members did not think that it could lead to a serious matter. “But we did bring him to the hospital for a check-up,” said Shima.
She revealed that her father had a minor stroke that targeted only his short-term-memory area. According to his doctor, this has caused an infarction — an obstruction of the blood supply to his brain, causing the local death of tissues focusing on his short-term memory. What was shocking to the family about the 2015 diagnosis was that the doctor estimated the decline to begin five to seven years prior.
Initially, it was difficult for the family to accept Hussin’s condition. “Through time, we understood and tried our best to focus more on solutions. At the same time, adjusting with dad’s behavioural changes took some time for us,” she shared.
“We were also advised with a prescription and to do a follow-up every six months for health and memory check-up,” said Shima.
Concerned for her father’s well-being, Shima and her siblings took extra efforts to research their father’s condition and what they can do to help his cognitive skills.
Growing up with Abah
Shima described her adventures with Hussin, whom she fondly refers to as ‘Abah’, alongside her mother and siblings as good memories. According to her, Abah was a pilot, an active diver and a racer during the good old days.
“Although he was constantly travelling, he made sure he had time for us,” she recalled.
Hussin was a fighter pilot for the Malaysian Air Force. Although Shima was not born yet during that period of time, Hussin would often talk about his adventures through old pictures.
She also said that growing up with Abah and her siblings was so much fun. “Our time with him was always spontaneous, filled with imaginations just like the person he was.” She remembered their old house, where the yard and the hill behind became their playground.
“We were so influenced by the 80’s show Punky Brewster’s beautiful treehouse, that Abah built a make-shift ‘treehouse’ with wooden planks on a mango tree in our yard,” shared Shima.
“And every time we watch the ‘Top Gun’ movie, he will proudly say that Maverick, the character played by Tom Cruise, is him and we would roll our eyes every single time,” she chuckled.
A silver lining
Shima admits that taking care of Abah has been quite a challenging affair for the family. At the same time, to them, it is also a learning experience.
“My father used to be the head of the family, and also the officer during his career. Thus, having to receive instructions and restrictions from us was hard for him as he is still adjusting to his condition,” shared Shima.
The family then discovered a centre in Kuala Lumpur that helps care for dementia patients. “They had various activities to help improve patients’ physical and mental well-being.”
Albeit the strong stigma in Malaysian families regarding sending old folks to care centres, Shima said that there are more than just physical presence when it comes to caring for a dementia patient. “It is important to know how to care for them. It is a different story when it comes to caring for the patients’ emotions and mental health (retirement depression, loneliness).”
Hence, Shima believes that it is important to seek the right help, which is ultimately the children’s responsibility to manage. “This is also a different way to show that you care and love them.”
Shima said that sending Abah to the centre for weekly sessions improved his memories. “We noticed that he would anticipate each session and he can recall the activities that he’s done at the centre.” Emphasising this, Shima added that her father needed one to one attention as guidance, hence making the sessions fruitful.
“Now, Abah always looks forward to his sessions at the centre. And also his time with his grandchildren, our weekly visits, tending to his cats, and sports on the television,” Shima added.
Shima’s guide in caring for her Dementia father:
- Patience is key.
- Be a good listener and to give the instructions with empathy and compassion.
- Do your research and readings on Dementia and its stages, be prepared and learn to manage your expectations.
- Laugh and joke around with him, make him feel like he is not sick or remind him of his situation.
Tips to communicate with Dementia patient by caregiver.org:
- Set a positive mood for interaction.
- Get the person’s attention.
- State your message clearly.
- Ask simple, answerable questions.
5.Listen with your ears, eyes, and heart.
6.Break down activities into a series of steps.
- When the going gets tough, distract and redirect.
- Respond with affection and reassurance.
- Remember the good old days.
- Maintain your sense of humour.
How to handle troubling behaviour by caregiver.org:
- Learn that we cannot change the person.
- Seek medical help.
- Understand that each behaviour has a purpose.
- It is important to note that a behavior is triggered by something.
- Inculcate ‘What works today, may not tomorrow’.
- Get support from other.