At the Alzheimer’s Disease Foundation Malaysia’s (ADFM) two Alzheimer’s day care centres, they spare the carers, not the care.
I HAVE one wish; that Mum’s condition will not deteriorate further as I do not know what to expect and fear that I might not be able to cope,” reads one entry in the From the Carers column of Sharing, the Alzheimer’s Disease Foundation Malaysia (ADFM) newsletter.
Other entries expose the cares borne by those mired in the twilight years of a loved one’s Alzheimer’s Disease (AD).
“It is important to realise Mum repeats the same question or statement five times in 10 minutes. She is in a different reality. I remind myself to have loads and loads of patience,” says one.
“The nightmare began mildly,” recounts another. “He used the pot of the electric rice cooker to warm up rice over the gas stove and burnt the rice and pot without realising it. He tried to flush some magazines down the toilet ‘to dispatch them to his friend.’ On more than 10 occasions, he went out and lost his way coming home. It was the most heartbreaking day of my life when we admitted him to a nursing home.”
A third entry sums it up: “As a caregiver, I am sometimes overwhelmed with frustration and often shed silent tears.”
AD is the most common cause of dementia among older people. In AD, nerves in the brain progressively die. At the same time, the brain produces less of the chemicals that allow nerves to communicate with each other.
Memory is usually affected first. Early-stage patients may also experience difficulty in finding the right words and mood swings. Later, patients may suffer deeper lapses of memory; have difficulty understanding what they’re told; forget daily living skills; undergo personality changes; appear indifferent to those around them; lose their sense of time and place; and become unable to speak, walk, and eat independently.
Some drugs can slow disease progression and alleviate symptoms like depression, paranoia, insomnia, and hallucinations. But loving care, patience, understanding, and a safe, stable environment are what a patient needs most.
This can be costly to achieve at home for a family already burdened with medical expenses and caregiving. As consultant geriatrician Dr Lee Fatt Soon notes, “When you have one ill AD patient, you have two people knocked out in terms of productivity.”
Fortunately for the residents near Taman Seputeh, KL; Section 11, PJ, and Johor Bahru, there is an affordable solution - daycare centres run by the ADFM and Johor Baru Alzheimer’s Disease Support Association (JOBADA.)
For RM30 a day, carers can leave their loved ones at these centres from 8am to 5pm on weekdays. (ADFM subsidises this fee for those in deeper financial need.)
There, they receive home-cooked meals and participate in strength and dexterity exercises; fun activities like sing-a-longs; and games like checkers, mahjong, congkak, and Bingo. They can also have a bath in elderly-friendly facilities or catch 40 winks in comfy cots in quiet “rest” rooms.
The purpose of these centres, says ADFM chairman Datuk Dr Yim Khai Yee, is to relieve carers of the day-to-day care of their loved ones while they go to work and have a normal life.
Such centres provide much needed respite for carers and connect them with local support groups. After all, the burden is not on the AD patient, but on the carer, says ADFM trustee and MOH Health Promotion Board head Toh Puan Aishah Ong. “The population needing this service is just going to grow,” she cautions.
“People need to earn a living. A centre is needed in every town,” stresses Dr Yim.
To find how you can make your, or someone else’s, caring journey that much lighter, contact ADFM at 03 7956 2008 or firstname.lastname@example.org; or Deva at 012 708 8706 or Ng at 012 758 5027 from JOBADA today.
Unforgettable Royal Concert
DAYCARE centres need to pay their way too. Here’s one way you can enjoy supporting them: attend a night of sheer symphonic magic at the KL Convention Centre in November.
The concert will feature New York-based conductor Eugene Pook, American virtuoso violinist Jessica Lee, and AIM Award-winning artist Sean Ghazi. Expect selections from Phantom of the Opera; John Williams tributes (think soundtracks from Star Wars and Superman); and favourites like Unforgettable, Bridge Over Troubled Water, Semalam, and Hujan Di Tengahari from Sean.
Tickets are priced from RM83 to RM383 for the Charity Concert Night (Nov 14); from RM100 to RM1,200 for the Royal Charity Gala Night (Nov 15); and are available at Axcess outlets, via their hotline (603-77115000), or online at www.axcess.com.my.
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