Rare Parkinson's Heroes Who Changed the World
Mr. Lloyd Tan is the icon and hero of the Parkinson's community. His spirit lives in us forever. Let us feel his energy as he guides us to live with Parkinson's, reaches out to us to give hope and inspiration.

1st Dec 2009.

From Indonesia with love

With the rapid advances in the treatment of Parkinson’s, the overall quality of life of patients has certainly improved. Nevertheless, due to its progressive nature, the impact of Parkinson’s on the physical and mental well-being of Parkinson’s patients remains significant. After walking along the “long and winding road” for some years, some Parkinson’s patients do become demoralized. This is where the role of loving caregivers is – the emotional support and comfort that they provide do help to bring meaning to the lives of Parkinson’s patients.

I have always believed that the stories of “loving Parkinson’s families” should be documented as they serve as a source of inspiration to Parkinson’s patients and caregivers. Parkinson’s patients can motivate each other as seen in support group activities. These inspiring Parkinson’s stories teach us that despite having difficulties and obstacles in carrying out daily activities, there is still something precious that Parkinson’s patients can look forward to in their daily lives – i.e. their caregivers’ love.

One of the Parkinson’s patients who were blessed to have such loving family was the late Mr. Elim Wijaya Nagasari, an Indonesian Chinese gentleman. After suffering from Parkinson’s for nine years, Mr. Elim passed away on the 27th June 2009, at the age of 69. Throughout his illness, his wife (Mrs. Elim) and daughter (Lois Nagasari) gave him all they could, in order to make sure that his life continued to be as meaningful as ever.

The story of Mr. Elim is very touching because it is about giving a Parkinson’s patients the very much needed love and comfort for nine years, till the very last day.

Right from the very first time I met Mr. Elim on 26th Jan 2007, I have to admit that I have enjoyed each and every meeting with him. He was a really pleasant gentleman (so were his wife and daughter!). Even right from the beginning, I had a very good impression of this loving family, as they were all very polite and well-mannered. Each time Mr. Elim entered my clinic, he would greet me “Good morning, Dr. Chew” in Mandarin, with a sweet smile. It was also easy for me to get along with them as we had something in common – we were all Chinese.

My meetings with Mr. Elim were also memorable because I spoke Mandarin with them – something which I actually rarely do (throughout my entire life). As I am not Chinese-educated, my Mandarin vocabulary is extremely limited. In fact, when I told my mother about how I spoke Mandarin with Mr. Elim and his family, she said, “how did you manage to communicate with them using your broken Mandarin?” As such, sometimes I had to speak English with them while Lois often had to do the translation (from Mandarin to English). I did learn some new Mandarin words from Mr. Elim and his family.

Apart from my short stay in London back in 2003, I have always been in Malaysia since I was born. Therefore, I actually don’t really know about how people live their lives in other countries. Being an ethnic Malaysian Chinese myself, I have always been curious about the Chinese people’s lives in other countries, especially in Indonesia. Do they celebrate Chinese New Year every year? Do they eat Chinese food everyday? Would they have been happier if they had not migrated from China to other countries? Do they speak Chinese everyday? In fact, Mr. Elim was the first Indonesian Chinese whom I knew quite well.

Mr. Elim started having the symptoms of Parkinson’s in 2000. During the first five years of his illness, he was doing quite well with his Parkinson’s medications (Madopar, Amantadine, Selegiline and Benzhexol). In fact, in Sept 2004, he managed to travel to China with his wife for a holiday.

29th Sept 2004 – Romantic couple in China.

Mrs. Elim always made sure that her husband could still live life to the fullest despite his Parkinson’s.

All his life, Mr. Elim had believed in giving his best to the community. He served as a pastor at a church in Surabaya for 15 years. Despite his retirement in March 2004, he still continued his work with the elderly people in a church at Surabaya till October 2007 (left). Subsequently, he moved to Malang, which is about two-hours drive from Surabaya. I think that the love that he received from his family was a “reward” for whatever he had given the community all these years.

By mid-2007, his illness had significantly progressed. He developed confusion and visual hallucination, e.g. seeing strangers in his house. He also became paranoid – he thought the “police officers” were going after him. As such, he was admitted to my hospital on 23rd July 2007. I had to start him on medication (antipsychotic) to treat his abnormal mental state.

5th August 2007 – Hospital Pantai Cheras, Kuala Lumpur.

Even when he was unwell, I could often see a smile on Mr. Elim’s face – I think it was partly because he found comfort in knowing that his wife and daughter were always beside him.

Even when he was unwell, I could often see a smile on Mr. Elim’s face – I think it was partly because he found comfort in knowing that his wife and daughter were always beside him.

Throughout the three-week stay at my hospital, Mrs. Elim and Lois were always beside him. Each time I examined Mr. Elim in his room, they would always spend at least 20-30 minutes describing (in great detail) to me on Mr. Elim’s response to his medications. They knew Mr. Elim’s medication schedule inside out – the name and timing of each medication. Lois always had her father’s medication schedule written on a piece of paper. Being so familiar with her father’s treatment, Lois had even noticed that occasionally the medications were not served at the right time. However, she was so polite and considerate (just like her parents were) – I remember that she informed me about the nurses’ inconsistency only during the last few days of her father’s hospital stay, in a very “diplomatic” manner.

Mr. Elim’s illness was not that straight-forward though. He was unusually very sensitive to Parkinson’s medications, especially levodopa. About one hour after each dose of levodopa, he would become confused and restless for about two hours. Managing his problems was quite challenging. Almost everyday, I had to go through his medications schedule with his wife and daughter.

 

One evening, I went to Mr. Elim’s room with a nurse, to find out how he was doing. I think it was about 11 pm. When I quietly opened the door, I saw Mr. Elim lying on his bed while Mrs. Elim and Lois were lying on the other single hospital bed beside him.  All three of them were fast asleep. I decided not to wake them up. I knew Mrs. Elim and Lois were already exhausted at this stage. Only the caregivers will understand how hard it is to provide care for Parkinson’s patients day and night.

 

The next morning, I went to Mr. Elim’s room again. Lois was giggling away when she said, “The nurse told us that you came yesterday evening. We are so sorry that we were fast asleep. We were really tired.” I replied, “Don’t worry. I fully understand how tired both of you are.”

 

Gradually, Mr. Elim’s mental condition improved. By 14th August 2007, he was discharged from the ward.  At this stage, he was quite well and could walk in the ward without needing assistance. The constant encouragement and support of his family certainly played an important role in his recovery process.

 

It was during one of the days during his hospital admission when I jokingly told Mrs. Elim, “Why don’t you and husband spend some time at Cameron Highlands (a famous hill resort in Malaysia)? This romantic place is suitable for romantic couples like you!” A few days later, I found out from Lois that her mother had commented that it was “inappropriate” for me to make such remarks as I was younger than her parents!

 

Nevertheless, in November 2007, this romantic couple really found their way to Cameron Highlands.

 

 

  

Nov 2007 – Cameron Highlands, Malaysia.

Mrs. Elim was always beside her husband to encourage him to travel as long as he still had the strength.

By 2008, Mr. Elim’s condition deteriorated again. His memory was obviously fading away. His body became weaker day by day. Taking care of him was much more challenging. In Nov 2008, following a stroke, he was paralyzed and wheelchair-ridden.

At this juncture, communication became a real problem. His speech was soft and slurred. As it was difficult to make out what he spoke, most of the time Mrs. Elim and Lois had to use sign language. Due to difficulty in swallowing, feeding (usually using a syringe) took almost one hour for each meal. I was amazed that they never resorted to using nasogastric feeding (a plastic tube inserted through the nose, which goes all the way into the stomach, for the purpose of feeding), which is commonly needed by patients who can’t eat the usual way.

Mrs. Elim had a maid who helped her to clean the house, especially when Lois went back to United States. Throughout his illness, Mr. Elim had never been sent to the nursing home. He was always well taken care of at home by his family.

12th Dec 2008 – Malang, Indonesia.

Even after the stroke left Mr. Elim wheelchair-ridden, his wife and daughter made sure that he still had some outdoor activities.

“Taking care of him was so challenging at the advanced stage of his illness. We gave him constant encouragement to keep going. It was disheartening to see him lying motionless and speechless on the bed or chair. We just hoped that his condition would get better. Sometimes, whenever he could finish even half a plate of meal, we would thank God for it. At certain times, even if we heard only one word from him throughout the whole day, it already felt like heaven,” recalled Lois.

“Even though we clearly understood his physical disabilities, there were occasions when we lost our patience when we thought that he was taking too long to respond to us. But we were just humans. Nevertheless, we always made sure that our frustration or anger did not show on our face,” said Lois.

6th Feb 2009 – Malang, Indonesia.

Mr. Elim resting in his bedroom. He had a special bed and mattress which were designed for home nursing and prevention of bedsore.

7th April 2009 – Malang, Indonesia.

Mr. Elim resting in the living room. You can see that his wife made sure that he felt as comfortable as possible – pillows, blanket, cushion, etc.

During the end of June 2009, Mr. Elim’s condition had suddenly turned for the worse, probably because of lung infection. His wife arranged for a doctor to visit him at home. As he was too frail to be fed, the doctor started him on intravenous drip to maintain his hydration. Three days later, when his condition did not improved, Mr. Elim was admitted to the hospital, at 10 pm. He passed away the next day, on 27th June 2009, at about 7.30 pm.

Moments before he died, his wife noticed that there was something not right about her husband’s facial complexion. She had just finished her prayer when she saw her husband’s eyes were wide open. This was unexpected because during the preceding two weeks, Mr. Elim barely opened his eyes. Somehow, she knew what her husband needed. She whispered into his ear, and said, “If you can’t hold on much longer, you can go joyfully to meet God, who is waiting for you. And when the time comes, I assure you that I will meet you in heaven. Your children are on their way here and you can leave in peace now.” After a short while, Mr. Elim’s eyes were closed while his breath gradually stopped.

Mrs. Elim added, “Immediately, I could see the change in his facial expression. He seemed to be smiling. I think he found peace at last. Even I myself could feel a sudden onset of peace in my mind, probably because I knew that his sufferings had finally ended. It actually hurt me to see him suffering.”

One day after Mr. Elim passed away, I received the sad news from Lois through the email.

I did not hear anything from them until 15th Oct 2009, when they came to Kuala Lumpur to pay me a visit. They brought along some of Mr. Elim’s previous medications, which they wanted to donate to other Parkinson’s patients who needed to purchase the same medications. “Some time before my husband passed away, he expressed his wish to donate his personal belongings to the needy people. Even his spectacles and shoes have been given away,” said Mrs. Elim.

I had a long chat with them on that day. After getting their permission to write the present article about Mr. Elim, I asked them what would be their best advice for all the other Parkinson’s caregivers. Mrs. Elim said, “The most important thing that caregivers should do is to put themselves in the patients’ shoes, and try to feel and think as the patients do”.

Lois added, “Yes, I completely agree with my mother. We always made it a point to imagine what we would have felt if we were in his position. Whatever we gave him, we always tried them on ourselves first, just to make sure that he would not cause him any unnecessary discomfort. For example, once I bought an essential mint oil to help him cough out his phlegm. After mixing 3-5 drops of mint oil with hot water, I deeply inhaled the vapor to make sure it was alright before I gave it to my father.”

I said, “It must have been a very tough time for you and your mother, especially the last few years.”

“We don’t know how we did it. We don’t think we can do it again,” Lois replied. Well, I knew for sure that they did it for the sake of their love for Mr. Elim.

“We are going back to Indonesia in a few days. We will come again to Kuala Lumpur from time to time. My mother needs to see you for her annual medical check-up,” said Lois. I told them to keep in touch with me.

A few days later, while talking to a patient in my clinic, I received a phone call from Mrs. Elim. She said in Mandarin, ”Dr. Chew, we are boarding the plane now. Goodbye.” Her “goodbye” reminded me of Mr. Elim’s polite greetings (“Good morning, Dr. Chew”) again.

Yes, I certainly look forward to meeting this loving family next year.