Mama “Can’t Recognize Me”

Indonesian Diaspora Debora Nainggolan in San Jose, California still remembers when her mother, who had Alzheimer’s disease, started not recognizing her in 2015.

“(Life) is a mess. The relationship between brother and sister is breaking up. I was sad like that, Mama Alzheimer’s heart was broken and she couldn’t recognize me.”

Debora said she was ‘misled,’ because of a lack of understanding among the family about the dementia and Alzheimer’s that had been seen in her mother since 2011.

Alzheimer’s disease for which there is no cure is indeed slowly causing not only memory loss, but also speech, and behavioral changes.

“Alzheimer is like destroying a family. It’s like my mother. She is like a pillar in the family,” said Deborah.

Mama, the Mighty Woman

“Mama used to be the woman who made me very strong,” recalled Debora.

Although only a high school graduate, Mama’s figure named, LS Veronica Sinaga is the main breadwinner in the family and the mother of 6 children. At that time his father, who was a law graduate, worked as a contractor.

“We had a lot of Metro Minis. At home, I don’t remember (there were) 12 or 15,” added the woman, who has lived in the US since May 2003.

LS Veronica Sinaga and children (doc: Debora Nainggolan)

LS Veronica Sinaga and children (doc: Debora Nainggolan)

In addition his family owns several properties, including 5 houses and land. Deborah recognized her mother’s keen business instincts despite never having attended business school.

“I think when Mama was sick, we all lost a true leader,” said Debora.

Trapped In Grief

For three years Deborah was trapped in grief. Mama, who used to be very independent, now has to depend on others to find her toothbrush or clothes.

“He doesn’t recognize the house. He often said he wanted to go home. Then he doesn’t know how many children he has,” said Deborah.

Debora Nainggolan (right) with her mother, LS Veronica Sinaga (doc: Debora Nainggolan)

Debora Nainggolan (right) with her mother, LS Veronica Sinaga (doc: Debora Nainggolan)

The peak of her sadness occurred in 2020 on Deborah’s birthday. At that time Deborah asked her mother to pray.

“At the end of the prayer he called me by the name of his sister who died 7 years ago. That’s what broke me. I went out on the street, drove the car, cried on the side of the road until the police thought I was going to kill myself,” said Debora.

Rise and Receive

Trying to get up from her sadness, Debora also tried to accept her mother’s condition, and enriched herself with knowledge about Alzheimer’s, by reading books, also through various organizations, such as the Alzheimer’s Society and Alzheimer’s Indonesia or ALZI San Francisco branch.

Deborah changed her mindset instead of her mother’s. He was determined to give the affection and love he had received from his mother. Even though her mother can’t recognize her now, Deborah believes that traces of her are still embedded in her heart. In accordance with the motto of the Alzerimer Society organization which says, “I will remember for you,” or “I will remember for you.”

“For me, my mother remembers me enough. My mother already knows me enough, ”he said.

“Sometimes people when they are in a situation like this like to please themselves or deceive themselves, saying, ‘Hopefully this can be healed. It can heal.’ Nothing. We must accept it with a happy heart,” he said.

Separate Distance and Time

Deborah experiences various challenges when communicating with her 79-year-old mother. Especially when you have to do it remotely via telephone or video calls, considering that her mother lives in Indonesia.

“I want us to talk while holding her hand to get her attention. When he was on the phone, he suddenly walked back and forth, the kitchen, the living room,” said Debora.

Deborah admits that it’s hard to find something to talk about that can grab her mother’s attention.

“Sometimes Mama bright moment Yes, the mood is good, yes, this is often the case, isn’t it moody So, it’s hard to talk to, “explained Deborah.

“Maybe because we use cellphones, yes, for the elderly like Mama, it’s still a bit difficult,” he added.

“Happy When We’re Two”

Despite being separated by distance and time, Debora, who works as a piano teacher, as well as a music therapist at a local clinic, finds an effective way to communicate with her mother, namely through music.

“So I used music as a medium to connect with him. And usually it connects. If I’ve been, ‘Come on Mama sing. Later, we will sing this, shall we.’ I fished first. For example, I sing with him, only later when he joins in, well, I immediately (say), ‘play the piano first.’ Later, when you play the piano, (Mama) connects,” said Debora.

Debora Nainggolan with her mother, LS Veronica Sinaga (doc: Debora Nainggolan)

Debora Nainggolan with her mother, LS Veronica Sinaga (doc: Debora Nainggolan)

Indeed, Deborah’s mother used to be very active in singing in church. The change in her mother’s mood when singing and listening to music made Deborah touched. He still remembers in his memory at that time, when he played a Batak language song, entitled “Nasonang Do Hita Nadua,” which means, “It’s good when we are both.” The song managed to put a smile on her mother’s face.

“Moved. So music is like (delivering) a message, right,” said Debora.

“When you enter the middle, you sing along,” he added.

For Debora, this month of Alzheimer’s is like an encouragement to continue caring for her mother.

“This year is something special. What’s special about it, here is my awareness and understanding and there’s also my sister, so we’re like, ‘Mama, I have Alzheimer’s, we have to do this.’ We used to be sad, now we are sad switch mindset Yes, we can’t be sad all the time.”

Caring for Alzheimer’s Patients Through Yoga

While Debora Nainggolan uses music to treat her mother with Alzheimer’s, the Indonesian diaspora, Vitri Rachmadiyanto teaches yoga to maintain the health of the elderly, especially those with Alzheimer’s in Aurora, Illinois.

When asked to teach in day care for adults with Down syndrome, people with Parkinson’s and people with dementia, including Alzheimer’s dementia, he refuses to be paid and chooses to volunteer.

“I said, because they are the opposite of me. At this moment I was given the power to remember. My memory is so strong that some things that I should have forgotten just kept reminding me and traumatized me. Meanwhile, these people (are) people who want to remember but can’t remember,” said Vitri, who has worked at this daycare center for almost two years.

Most of the activities that take place at Vitri’s place of work are done in a sitting position, considering that many have difficulty standing. This is where Vitri’s important role is needed.

“Because they often sit, the need for yoga to stretching their bodies so that they are not stiff. Because if their minds are already difficult, with bodies that are not flexible, they can get sick, they will be even more uncomfortable with their body condition, and as a result, they get angry easily, easily get emotional,” explained Vitri to Mouab.

According to Vitri, the biggest challenge is keeping their moods fluctuating. He also has to be smart to seduce.

“Sometimes they get annoyed, yes. We are also annoyed when we want to find the key, for example. How come you didn’t find it? Yes they are the same. They don’t know why they are in the center. Once, while teaching, one of the patients said, what am I doing here? And why do I have to follow whatever you told me to do? I’m healthy, how come. So it’s hard. In the end, he got angry and disturbed the other patients. Sometimes it’s good to be seduced.”

For Vitri, this month of Alzheimer’s is a reminder to always be grateful for one’s health.

“We have to appreciate what we have, in various ways. Yoga is not the only way, there are those who like zumba, there are those who like to run, whatever it is if they can be active, be active. He can attack anywhere, anytime.”

Alzheimer’s Organization Indonesia in San Francisco

Since 2019, the San Francisco branch of the Alzheimer’s Indonesia organization or ALZI has been established in the US. It is part of ALZI in Indonesia. This organization has 16 branches spread across Indonesia and a total of 5 branches abroad.

“ALZI San Francisco helps Alzheimer’s Indonesia, especially the Indonesian community in America, especially in San Francisco. So those who are temporarily living here and starting to have symptoms or their parents who are in Indonesia have symptoms, so we can help connect interested families with experts in Indonesia,” explained the chairman of ALZI San Francisco, Ake Pangestuti to Mouab.

Ake Pangestuti (left) with Febe Lim, instructor arranging flowers for the elderly (doc: Ake Pangestuti)

Ake Pangestuti (left) with Febe Lim, instructor arranging flowers for the elderly (doc: Ake Pangestuti)

ALZI San Francisco often helps the Indonesian diaspora such as Debora or collaborates with Vitri to carry out activities. This year, ALZI San Francisco is holding various special activities related to World Alzheimer’s month.

“Activities with the elderly, as a preventive activity, are arranging garden flowers, because if the elderly and people with dementia have a hobby, the hobby will still continue. It can be therapy too. And also cook a healthy menu for the brain. So our activities are mostly meaningful activities to reduce the risk of developing Alzheimer’s dementia,” explained Ake Pangestuti.

Ake Pangestuti at the running event he dedicated to the world Alzheimer's month 2021 (doc: Ake Pangestuti)

Ake Pangestuti at the running event he dedicated to the world Alzheimer’s month 2021 (doc: Ake Pangestuti)

In an effort to raise public awareness of this year’s global Alzheimer’s month, Ake, who loves to run, took part in running competitions as part of the San Francisco Marathon and dedicated it to this month of Alzheimer’s.

Don’t forget Ake’s message to always live an active and happy life.

“If we are healthy, our families are also healthy, and also for our caregivers whose families have ODD, hopefully we will keep our spirits up and support each other,” you are not alone.”

The latest data from the Alzheimer’s Disease International organization shows there were more than 55 million people living with dementia worldwide in 2020. This figure is said to continue to increase, reaching 78 million in 2030 and 139 million in 2050. [di/ka]

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