Everyone’s sorrow: Families of dementia patients share their highs and lows

Families of dementia patients open up about the never-ending challenges of caregiving.

By Cahaya Ratomo

Devoted: Dewi 'DY' Suharya (left) is pictured with her arm around her mother, Tien. DY's hand is holding that of her father’s, Yaya Suharya.

(Courtesy of Dewi 'DY' Suharya) (Courtesy of Dewi 'DY' Suharya/Courtesy of Dewi 'DY' Suharya)

Growing up, Dewi “DY'' Suharya noticed strange behaviors developing in her mother, Tien. From temperamental attitudes to poor decision-making, the most heart-wrenching symptom arose in 2014, when Tien began forgetting that DY was her daughter, thinking she was a stranger instead.

Though DY did not know it for roughly 20 years, such behaviors were symptoms of dementia, a syndrome that progressively affects critical brain functions. With dire consequences such as memory loss and an inability to control thinking abilities, Tien eventually lost the capability to function independently, until she began requiring a caregiver to assist her with everyday needs.

DY and her 93-year-old father, Yaya Suharya, were Tien’s primary caregivers. Up until her death in 2017, they assisted her with eating, bathing, incontinence and other tasks throughout the day — all while being forgotten.

“There was [an occurrence] when my dad was accompanying my mom to help her bathe, and she said, ‘Don’t touch me; I have a husband,’” DY recalls.

Such anguish was only further augmented by confusion and frustration, given that there were no Indonesian organizations to provide information and training in dealing with dementia patients. As a result, DY established the Jakarta-based Alzheimer’s Indonesia in 2013, an organization dedicated to improving the lives of dementia patients and their caregivers through education and awareness.

“I basically vowed to be really committed to helping other families to not be as confused as I was,” the 50-year-old explained.

Source of information: Dewi 'DY' Suharya poses next to various resources provided by Alzheimer’s Indonesia, most of which are in their signature color, purple.

(Courtesy of Dewi 'DY' Suharya) (Courtesy of Dewi 'DY' Suharya/Courtesy of Dewi 'DY' Suharya)

Caregiving

Pao Pheng, Jakartan writer of Brave Your Fear, is part of one of the families DY has helped. Discovering the organization after her mother’s diagnosis in 2019, Pao is now an active caregiver and member of the community, which she says has provided her with training and support.

However, she admitted that caregiving still came with its fair share of hardships, given that it requires her to be present “24 hours a day.” Furthermore, she explained that it also affected the daily lives of her family, even for seemingly simple affairs such as going out to a restaurant. Technicalities, including the availability of wheelchair ramps and accessible parking, must now be taken into account. Naturally, excursions are even more challenging to organize.

“Anywhere that we want to go as the four of us — me, my husband and my kids — the next question would be from me is: what about mom?” Pao explains.

'Never give up': Pao Pheng, a volunteer at Alzheimer’s Indonesia, is a caregiver for her 73-year-old mother with dementia.

(Courtesy of Pao Pheng) (Courtesy of Pao Pheng/Courtesy of Pao Pheng)

Stigmatized

DY discussed the abundance of stigma surrounding dementia, which she says can prevent patients from receiving help altogether. Symptomatic behaviors — specifically, the loss of judgment — can drive families to feel ashamed or embarrassed of the patient’s mental conditions, thereby keeping them secret in order to protect their personal dignity.

“Because [dementia patients can’t] control their behavior, they can be wandering around naked, they could be screaming, they could be just behaving [strangely] and making other family members [feel] ashamed,” DY explains.

Furthermore, willful ignorance or a sheer lack of regard have also been proven to prevent patients from receiving diagnosis and proper support. Believing that forgetfulness or senility — even to such a pronounced extent — are normal factors that come with age, some families reportedly brush off the possibility of dementia altogether, refusing to consider it as the reason behind their relatives’ strange behaviors.

“Do not underestimate memory loss,” DY warns, reiterating Alzheimer’s Indonesia’s tagline. “Dementia is not a normal part of aging.”

Support system: Dewi 'DY' Suharya and her team wear purple shirts that read Alzheimer’s Indonesia’s tagline, 'Do not underestimate memory loss'.

(Courtesy of Dewi 'DY' Suharya) (Courtesy of Dewi 'DY' Suharya/Courtesy of Dewi 'DY' Suharya)

Paradigm shift

In order to ameliorate such stigma and misconceptions going forward, DY hopes to curate a dementia-friendly society through education, awareness and partaking in dementia-related activities. 

Ranging from family caregiving to volunteering at Alzheimer’s Indonesia, she stresses that there is a plethora of areas that still require assistance, encouraging those of all ages to “have empathy, to contribute their skills in supporting this [movement]”.

Pao, a mother of a 12-year-old daughter and a 6-year-old son, has taken this advice to heart. Ever since she became a volunteer at Alzheimer’s Indonesia, she has invited and encouraged her children to regularly care for their grandmother, hoping that they will curate a tolerance for the occupation and oppose any stigma.

“From my own experience, it is very important to involve the young generation — in my case, my two kids — to be aware of this situation,” Pao explains. “It’s a good thing to learn from our society to never be ashamed [of] taking care of the elderly, like our parents or grandparents.”

However, DY stresses that simply being mentally present when around patients, such as by putting away gadgets and electronic devices, can also be of great value.

“It’s better to have one good hour [of] time with [patients] than lingering for a day but [being] busy with your own mobile phone,” DY explains.

Furthermore, she hopes that the younger generation will also “take care of their brains” in order to prevent dementia from materializing in the first place, specifically by partaking in and adhering to key prevention methods. Two notable ones — avoiding smoking and limiting alcohol consumption — are of chief concern, given that they prove challenging to Generation Z, or those born in the years 1997 to 2012.

In 2018, Indonesia’s National Health Indicator Survey concluded that adolescent use of electronic cigarettes had reached 10.9 percent, while a 2017 survey of young people living in Greater Jakarta by Nahdlatul Ulama found that 65.3 percent of respondents consumed alcohol.

Still, though she acknowledges that such steps will take time to be implemented, DY has faith that they will result in a more inclusive community; one that accepts and supports dementia patients and their caregivers.

Accordingly, Pao offers a message of reassurance and hope.

“Never give up,” she voices. “The key is: never give up.”