Everyday Inspirations #4

Today we have the chance to speak to Dr Mo Yin, a senior resident in Infectious Diseases, about the work she did with the World Health Organization in Liberia during the Ebola outbreak. If you are interested in doing overseas aid work, read on to find out about the obstacles she faced and how she stays motivated despite everything.

1) Tell me about your experiences in Liberia  

During the Ebola outbreak, I had the opportunity to work with the World Health Organization (WHO) in Liberia for 1 month, doing policy work on infection control and prevention.

On our first day there, we were woken at 6am for an emergency meeting. A man had escaped an Ebola treatment centre. He was very sick and hence he probably carried a lot of virus. On his way home, he fell off a cab and 2 young men helped him. They later fell sick but not before getting involved in a gang fight where a lot of blood was spilt. The outbreak had just been beginning to settle at this point and we really wanted to contain the area.

Later we visited the surrounding clinics and were surprised to find that despite being 1 year into the outbreak, they still had not implemented proper triaging and quarantining measures. I saw a man who was supposed to be in isolation take a seat amongst a group of women holding their babies.

In Monrovia (capital of Liberia), there is only 1 main road. There are no postal services and no addresses. Only 100 doctors that serve a few million people. An entire hospital of 700 beds may have only 1 doctor!

There were about 70 Non-governmental organizations (NGOs) working on infection control alone and as you can imagine, the situation was chaotic. Comunication and coordination of efforts were difficult despite the best intentions.

This was the kind of setting that we were met with. Our question was how could we unite everyone’s effort?

With guidance from my supervisors, I came up with an electronic database. We used a very simple online platform- google sheets. The idea being that every time an infection control specialist visited a clinic, they had to have their data entered into these sheets. This allowed us to compare the different areas such that we could easily spot and immediately target what they were lacking eg. personal protective equipment or better training. We could also keep track of how the different clinics were progressing and published this data to the NGOs to make sure they didn’t end up doing double work. All in all, it helped us decide how to allocate limited resources and directed the NGOs where help was needed.

I remember when I first presented it to the NGOs, people came up to me saying that they had been waiting for something like this.

Facilitating an infection prevention and control course to the Liberian county representatives 

Doing a simulation exercise with the National Infection Prevention and Control in-charge at a clinic in Monrovia

“These are the kinds of things that you can only pick up if you are there to see the situation on the ground- it can never be learnt through textbooks.”

2) What made you decide to serve overseas?

I am a big believer in equality. I feel that the most valuable thing to a person is opportunity- the freedom to choose. Regardless of where you are born or who you are born to, it should not limit the opportunities you have and one of the foundations you can never argue with is health. You can argue that they don’t need computers in the mountains but they need basic health care. With good health come opportunities. This was one of the most direct ways that I could offer life to people, so I decided to do medicine. Naturally, I am interested in developing countries because I feel there is a lot of room for empowerment there.

3) How did you decide which niche of overseas work to focus on?

Post-tsunami visit to Yogyakarta, Indonesia, doing post-trauma therapy with the children

Before medical school, I had gone on a few missions trips to China, post- tsunami Indonesia and aboriginal Malaysia. The longest of these was to China for 2 weeks. The main issue I have with these trips is the sustainability or the lack of it. There has to be a long term commitment to be physically there and for me, this is difficult.

So I am trying to fulfil [my desire to help] through other means, like training to be an Infectious Diseases (ID) physician and doing a PhD in infection control research. I believe that influencing policy leads to the most sustainable healthcare outcomes.

4) How can people working on the ground make their trips more sustainable?

It has to be about teaching skills and capacity building. If you are going there to build a school, you might as well teach someone how to build a school instead. It takes a lot of preparation to study what the socio-economic-political setup is in the region before you can deliver what is actually needed. Also, establishing a relationship with the local people is extremely important.

For every overseas trip that you make, it is important to assess the goals first. What can we contribute to the local community? How will it benefit them and ourselves? It is important to build up the skillsets before making the decision to help.

5) Did you have to make any sacrifices along the way?

Doing this PhD is taking time off my training and going out of my comfort zone. Sometimes I wonder what kind of career support I would get if I decide to focus on developing countries and not doing cutting edge science. And my mom is always worried about me being an old maid!

6) What are some challenges you faced on your trip?

It was very difficult to even get to Liberia. I was originally thinking of volunteering with Médecins Sans Frontières (Doctors Without Borders) but the day I applied, their first international staff got infected with Ebola- so they started declining all international staff. Then the WHO opportunity opened up. I had to convince WHO to take me even though I was not that experienced and had to get approval from all levels- my residency committee, my immediate supervisor/programme director, the hospital CEO, the Ministry of Health…(laughs) my family. Then there were the questions of what if I import the disease? What if I fall sick there? In the end, I was very lucky- my head of department had been there twice and said he would supervise me.

On the trip itself, implementation can be very difficult. The education level and concerns are all different. Cultural differences are subtle but can make a project fail terribly. For example, during the Ebola crisis, vaccines went in to help them. But when we were there, there were signboards saying ‘it’s a conspiracy, they are coming to jab Ebola into us!’ A lot of this suspicion is based on the history of the country.

How do you bridge this gap?

You have to build friendships and trust. You must find the key person, whom the people trust. In certain communities, it may be the religious leader, in others the clinic leader.

7) What keeps you going despite the difficulties?

“I feel that we are all here because we are meant to contribute something. We need to find a sweet spot between what the world needs, what we are good at and what we like. Only when we find that sweet spot can we really contribute.”

I haven’t completely figured out what my role should be. But for me, I like to narrow things down. I first decided that medicine was something I wanted to commit to and then that ID was something that could open doors for me. Going on to do a PhD is simply a further exploration of something that I may be good at.

Of course, there are a lot of obstacles along the way. The more you expose yourself to opportunities, the more fatigue and burnout you face. Many days you have no time for yourself and you will begin to ask- ‘What am I doing?’ But you have to learn to re-prioritize- it is all part of a learning journey.

“What makes a person great is not how successful you are at one thing, but being able to tell yourself at the end of the journey that you haven’t given up- that you are still moving towards your goal.”

8) How do you balance your work and personal life?

Someone once told me- ‘find something you enjoy doing and do more of that’. I really enjoy working with my patient population. Because work makes me so happy, I can put my interests aside for a time and focus on my patients. When work is getting tiring and I need to focus on something else for a while, I will do that.

I used to tell myself that I needed to do one run and one reading session each week but it is really difficult to stick to that. So just do whatever keeps you happy.

9) What advice would you give to someone who is considering doing overseas humanitarian work?

To me, helping people is not about going overseas or doing a project.

“It is about brushing up your communication skills, making a connection with another person or spending that extra hour with a patient that has the potential to change his/her life. It is a lifelong commitment.”

Before committing to overseas work, you need to know yourself, your limits and your family situation. You need to know what the needs of others are before contributing. There is a lot to do everywhere. Even for the people right beside you.

Thank you for sharing your experience with us!

If you would like to find out more about Dr Mo Yin’s time in Liberia, you can check out this article or this publication. 

Everyday Inspirations #3

Today we speak to Ms Norma and her family about end-of-life care decisions and what it means to live life to the fullest. We hope that sharing their story will help others begin to have these important- yet often overlooked- conversations with their own loved ones.

At 90, Ms Norma was diagnosed with uterine cancer during the 2 weeks that her husband, Leo, was dying. Faced with treatment options or a stay in the local nursing home, Ms Norma chose instead to embrace life, embarking on an indefinite road trip with her son (Tim), daughter-in-law (Ramie) and their dog (Ringo). In the 9 months since, they have travelled to over 60 different campsites across America, and their story has inspired countless others. You can read about their adventures here.

 "SMILE!"- Image by Driving Ms Norma

Q1) How did you broach the topic of end-of-life planning with Ms Norma?

Tim and Ramie: We were scared to death to broach the topic. Every summer we would drive across the country to visit with Leo and Norma for a few weeks. Each time we talked about how this was going to be the year to talk about their wishes and the reality that someday they wouldn't be able to live independently in their rural home. 

There was always a to-do-list when we arrived. We would trim trees, power-wash the deck, make repairs. We would do all of these things and then it was time to go. We would put the talk off for another year.

It wasn't until we arrived to an absolute crisis that the topic was really talked about. Leo was dying and Norma had a large tumor, before Norma was ready to talk about it. 

We had not received Norma's diagnosis yet, but had a feeling it was coming when we finally brought up the topic at the kitchen table. 

Q2) What went through your mind in making your decision?

Ms Norma: I knew I couldn't stay at home by myself without Leo and I didn't like the idea of going into a nursing home. When Tim and Ramie asked if I wanted to come along with them, I thought that would be best.

Q3) What does having a good quality of life mean to you?

All: We all enjoy good food and being outdoors. We also like to see new things and are interested in the diversity the world has to offer. Now that Norma is not experiencing the side-effects of the many medications she was previously taking, her quality of life has improved tremendously. 

"She lives in the present moment and has taught us to do the same."

Enjoying the view at Niagara Falls Canada/ USA

 Tim and Ms Norma take a walk

Getting her feet wet at Hilton Head Island Beach

- Images by Driving Ms Norma

Q4) In your opinion, what is the best way to go about doing end-of-life planning?

All: We certainly are not experts in this area. This trip came about in a panic to do something that made the most sense to our family. We have learned that our story has helped other families start that difficult conversation much sooner than we were able to. With that said, the circumstances of every family are different and can change at the drop of a hat. If end-of-life talk becomes part of a normal conversation way before anyone falls ill, it will likely be much easier to modify the plans when the time comes. 

Q5) How did the medical community react to Ms Norma’s decision?

All: That is an interesting question. One of Norma's doctors begged her to undergo the standard treatment for her type of cancer, saying "Don't you want to live to be 95?" Another doctor first laid out the standard treatments (surgery, then chemotherapy and radiation in some order) assuming that we would make an appointment for surgery upon leaving his office. Once Norma told him she wasn't doing anything for the cancer and instead was traveling with us, he immediately encouraged her and said, “As doctors, we see what cancer treatment looks like every day: ICU, nursing homes, awful side effects. Honestly, there is no guarantee she will survive the initial surgery to remove the mass. You are doing exactly what I would want to do in this situation. Have a fantastic trip!”

Since our story has gone viral we hear from medical professionals every day. They are all in support of Norma's decision and wish that more elderly patients would make similar choices for themselves.

Q6) What kind of support would you have liked to have gotten from the medical community?

All: It amazes us that the choice of doing nothing is not offered. It takes a strong person with a medical advocate to overcome the pressure to continue to treat a condition, especially when the treatment could very well lead to a much poorer quality of life. 

Q7) How has Ms Norma’s condition been since hitting the road? 

Tim and Ramie: We have taken her off all her medications (there were several) with one exception (thyroid medication.) We have noticed an increase in her energy and her brain function. She had many side- effects that impacted her quality of life that have now gone away. She is quick to smile and is in no pain.

 Getting a kiss at Georgia Aquarium

  Giving it a go at NC Therapeutic Riding Center

Tim suprises Ms Norma with a lobster

- Images by Driving Ms Norma

Q8) What has been the most rewarding part of your journey thus far?

All: Never in our wildest dreams did we think anyone would care about our family's simple solution to a common issue. Many people take in their parents at this stage of their lives. Our home just happens to have wheels. 

We started a Facebook page so that our friends and family would know where we were in the country. We have since gone viral and we hear heart-warming and heart-wrenching stories from our many followers, and they also give us love and support. 

"People from all over the world are now saying "yes!" to living, not just to life. That is rewarding."

Q9) Do you have any regrets?

Ms Norma: Oh, no. I can't think of anything.

Ms Norma fulfills her dream of riding in a hot air balloon!- Image by Driving Ms Norma

Q10) Looking forward, where do you think Driving Ms Norma is headed?

All: Right now Norma intends to travel with us for the remainder of her days. She would love to see the redwoods in California, so we will probably head in that direction later this year.

Q11) Do you have any advice for others who are facing end-of-life care decisions?

All: We certainly aren't in the business of giving advice. We believe this is a very personal decision and we hope that everyone has the strength to be clear about the ones they make. 

In our case, we supported Norma and didn't try to change her mind. Having us by her side when she was talking to the doctors gave her the strength to stand up to them without feeling pressured to do something she really didn't want to do. She knew we had her back, if you will.

Many have shared stories of their dying loved-ones who made the choice to artificially extend their lives just to please loved ones. Their final days were neither peaceful nor natural. The writers tell us they wish they had not pressured them to fight when those extra days, weeks or months were filled with pain, discomfort and strife. Fortunately, we were all on the same page.

Mother and son climbing Cadillac Mountain in Acadia National Park- Image by Driving Ms Norma 

Thank you for sharing your story!

Feed your mind #1

‘The Mighty’

“Having a disability or disease doesn’t have to be isolating.”

As medical students, we are often reminded to see the person before the disease. It’s a child with autism, not an autistic child, our instructor at Rainbow Centre would say.

Yet, sometimes I find myself forgetting and saying ‘bed XX is the COPD (Chronic Obstructive Pulmonary Disease)’, which horrifies me. It isn’t entirely our fault. The sheer intensity with which medical students are required to swallow conditions wholesale (and regurgitate them for our exams), means that we can spend far too long characterizing the sputum and skim past the social setup. Plus, it is more efficient to say ‘bed XX is the COPD’ than to say ‘the uncle in bed XX is the gentleman with COPD’. Both of these are not excuses. Since circumstance is such that it is easy for us to slip into bad habits, then we owe it to our patients to make an extra effort in reminding ourselves that they are, first and foremost, persons.

Which is why, websites such as The Mighty are so wonderful. The Mighty aims to build a community for people to ‘face disability, disease and mental illness together’ and is a platform for patients (and their families) to share their unique experiences in living with their medical conditions. Many of the stories are about strength and how their conditions add to (not detract from) who they are.  

This video made by a photographer in honour of her sister who had Downs Syndrome is one such example. In it, she invites families of children with Downs Syndrome to give advice to parents whose children have just been diagnosed. Watching it taught me that Downs Syndrome doesn’t just mean Simian creases, wide set-eyes and a sandal gap. It can also stand for a loving family, strong parents and children who are beautiful- not in spite of, but because of their condition.

To anyone who has ever wanted to know more about the person behind the disease, I would recommend ‘The Mighty’. 

Everyday Inspirations #1

Interview with 2 long-term primary caregivers

I want to start off this ‘Everyday Inspirations’ series with 2 people who are very close to my heart- my aunties, Anna and Li Choo. They took care of my grandparents for a total of 12 years, when they themselves were in their 60s. Their decision to be the main caregivers to their parents meant the rest of their siblings did not have to uproot their lives and scramble to make care arrangements. Many of us know of caregivers or are caregivers ourselves- I hope that that this story will provide insights into the challenges and joys faced by them and give you some ideas on how to better support your loved one/ yourself!

Note: for ease of reading, red= Li Choo, blue= Anna

Q1) How many years did you take care of your mother and father?

Our mother was 10 years. Our father was one and a half years.

Q2) Tell me about their medical conditions

Our father had a stroke, end-stage kidney failure (on peritoneal dialysis) and diabetes. For our mother- high blood pressure, diabetes since she was 40 years old, vascular dementia, ischaemic heart disease, a fall that left her with a tracheostomy followed by a heart attack, then 2 more falls- fracturing her ribs and pelvis.

Q3) Describe a typical day caring for them

We used to have to get Papa up very early in the morning- 5 something- for dialysis before we went to work. And if he was very tired he would say ‘5 more minutes please’ and we would let him sleep for 10. After that he would get up, no complaints. We would go and work. Our brother would take the morning shift and do the second dialysis. At 3pm, we would come back and do the third dialysis. Then we would cook 2 meals (dinner, and lunch for the next day) before doing the last dialysis at around 10pm. In the later stages, we had to do dialysis 5 times a day because his urea was very high. In between we would settle medication counting and send him for red cell injections 1-2 times per week.

He was [traditional] so he didn’t want females to have to bathe him. Most of the time, it was our brother bathing. But then when my brother wasn’t there, Anna would bathe him.

For our mother, every 2-3 months we had to bring her to the hospital. It was very stressful. We would leave by 7am (so that she could have her blood test first thing in the morning) and come back at 12 noon. She would be very hungry from fasting (to draw blood) and we had to settle her food along the way. 4 people went- while some of us were settling the medications, the rest would keep her entertained.

The worst was when we had to bring her to the hospital in Malacca. I had to drive down to Malacca every day for two weeks! We would take shifts. Some would stay there, while we took the laundry back to wash and hang up. By the time we drove back it would be night. The next morning, we would go to work. Then, after work, drive down again.

Bathing her was ok because by that time, we were retired, so we had more time. But her legs were weak and we were afraid she would have another fall.

Q4) What were some of the daily challenges? How did you cope with them?

At first, our daddy had difficulty accepting his condition. He would see the many stacked boxes [of his medications] and ask ‘why do I have to use so much of these things?’ But my younger sister told him it was the same thing as needing many boxes of milk powder to keep his grandchildren alive. After that, he accepted it.

By the time we were caring for our mother, we were already over 60 years old, so it was tiring to keep having interrupted sleep.

Our mother was always in pain. I would tell her I was going to have a shower and she would say ‘pain, please don’t leave me alone’ (in Teochew). I explained to her that Anna was cooking and that I needed to bathe, so could she please sit and do her prayers for awhile? She told me she had forgotten her prayers! And I said, ‘just do what you can remember and when I come out, we can do the rest properly’. But of course, every time, before she got very far, she would doze off! (They both laugh)

"Now that we are older, we understand that she just wanted some attention. Because otherwise, all she had were the four walls in her room."

There were times when we were stressed and I would lose my temper. My voice would rise and Li Choo would say Anna Sim. Sometimes, you just need someone to remind you (to remain patient).

We also had a maid in the last year of my mother’s life.  At first, we didn’t want a maid, because you had to train them and worry about someone new in your house. But our siblings convinced us. They told us ‘you can’t continue like this- you will collapse’. So we got one. But mummy didn’t trust her! It took a month before she got used to her and allowed her to assist in anything.

Q5) What was the lowest point in caring for them? How did you get past it?

Oh! Putting her tracheostomy in- I cried! I could see my mother struggling so much and I thought to myself- how can I do this? If I am a little bit late, she might die. Luckily, she got better and no longer needed it. What a relief- that was really the most stressful time, when I had to learn how to do that.

Q6) What were some of the most rewarding parts about caring for them?

They were always appreciative of what we did for them. Every time we did dialysis for him, our daddy would say ‘thank you’. It really made all the hard work worth it.

And there were moments! One week before my father passed away, he was watching Pride and Prejudice, one of his favourite shows. And he was laughing at the old couple on the show, bickering. I could see his eyes twinkling! He was very lucid, till the very end.

Q7) Did you ever feel resentment about being the primary caregivers?

There was only one time. Our brother took a holiday with his family and when they came back they didn’t immediately come and see mummy. We were very stressed out about other things at the time, so we couldn’t understand how they could wait to see her. That was the only time we felt resentment. But we accepted it. After all, he has his own family to take care of, that’s just the way it is.

Q8) Did you ever discuss with your parents where they wanted to die?

Our father was very good, he had foresight. He told us from the beginning he wanted to die at home and be cremated and housed at the temple so it would be easier for us to visit. And when we asked our mother, she said ‘just follow your daddy lah!’

It’s very important. You have to discuss to find out what they want. It’s very difficult for the children if the old people say ‘don’t talk about death!’ They have to be realistic. Death is death. Nobody can run from it. You should write out your wishes.

Q9) After your mother and father passed away, what was the transition like?

It was quite easy because our siblings made us feel welcome. They told us to come over to see them and took us on trips.

Also, our father had settled a lot of things before he passed away- money, shares, land. It would have been very difficult for us to settle that on our own. And all the siblings had an understanding that everything would be shared equally.

"Sometimes, we miss them but we think to ourselves- they were in so much pain and suffering, would we rather they had stayed?" 

No one wants their loved ones to suffer. It is harder if they go suddenly, but if they were sick and you took care of them for years, then you would know they were suffering and it is easier to accept. Religion helps too- whatever you believe in, whether they are reborn or go to heaven or what.

Q10) Do you have any regrets?

When our mother was bedridden, it was the last few days of her life- maybe we could have spent more time with her. By that time, we were very tired, but we should have let the maid take on more house duties and focused on talking to her and keeping her company.

Some people are working and feel like they cannot give enough attention to their parents, but it cannot be helped.  You know if you are sincere. If you have tried your best, then that’s it. No one is to blame- you have to accept it.

Q11) What advice would you give to caregivers who are struggling?

The first thing is your attitude. Don’t take it as ‘why me, why me?’ See the positive side. It is an opportunity to learn to be more compassionate and generous, to practice patience, and to give back to your parents. If you think about it, our parents gave so many years bringing us up. To take care of them- it is only right.

Next, get support. Respite- it is very important. Not just for a few hours, but you need to really get away for a time, to recharge. For us, our younger sister would take us away on breaks while someone else took over. Nowadays, we hear that you can place your parents in a nursing home for a few days for respite care. Whatever it is, you need to find some way to get help.

Finally, finance. We were really fortunate- our siblings and their spouses were never calculative. Whoever saw the hospital bill first, tried to pay it. But if you don’t have this, then you must find some other means of help. A lot of worry comes from this, so if you can take that off your mind, then you will feel less stressed.

Thank you very much for sharing your story with us!