Being the Main Caregiver

HOW IS CAREGIVING CURRENTLY?

Our day begins about 10-11am when Wai Leng wakes up. It is clean up, feeding her breakfast and medication. Lunch would be around 1-2pm. She takes her afternoon nap from 3-6pm. Dinner is around 6pm with soft diet followed by desserts. Bedtime is around 10pm.

While she rests, I can read, study, write and prepare my sermon, do some household chores and cook the next meal (if needed). Once a week we will get out of the house for a meal and walk around.

SHARE WITH US ABOUT YOU LEAVING THE  PASTORAL VOCATION AND TAKING ON A NEW CHAPTER OF CAREGIVING.

When she was still able to walk on her own and could follow simple instructions, I was able to leave her in the morning with my mother, who has since passed away. I would bring her out for lunch and then bring her with me to the office where she would be with me for the rest of the day. This arrangement worked for about six months. After it became apparent that she was having “separation anxieties”, I decided to bring her with me to work everyday (from 2016).

The church board and staff allowed me this “new” arrangement—she rested in the office on a collapsible bed while I continued my work and ministry. I brought her along for everything: meetings in and outside the church, hospital visitations, in counseling sessions, in preaching at other churches, for wakes and cremation services, and three overseas missions trips together. This continued for the past two and half years before it became untenable to continue.

As her condition worsened and she became wheelchair-bound, the church then allowed me to work from home for two days a week which helped greatly.

When it became clear that I could no longer effectively discharge all my ministry responsibilities and look after her at the same time, I made the decision to resign from my full-time pastoral ministry. Ample notice was given to the church board and staff as I made known this decision to them one and a half years before my last day of work.

HOW DOES THE CHURCH COME ALONG TO SUPPORT YOU?

Help from the church came in other ways as well: her close group of friends in church never fail to greet her whenever we were able to attend church. They would try to bring her out to lunch, so I could be “free” to meet with others. We also received many offers of material stuff in kind.

HOW DO YOUR FAMILY MEMBERS SUPPORT YOU?

My siblings would come over to the house to care for her when I need to run some errands. We either eat out or at home.

Our children volunteer to keep her company when I must go out for ministry. They will also help to clean, bathe, and change her when needed. My second son bought his new house near to ours so that he can respond if and when we need help.

HOW DO YOUR FRIENDS ENCOURAGE YOU IN THIS JOURNEY?

Wai Leng’s former colleagues visit her at least once a year. A few pastor-friends call me regularly to check if I am alright and try to meet up for meals.

We receive surprises (e.g. deliveries of food and gifts) sent to us by concerned friends and church members.

A WORD OF ENCOURAGEMENT OR WISDOM:

Someone once told  me that “caregiving is a full-time job.” It is!

Besides just seeing your loved one ‘going down a path of deteriorating mental  and physical health”, I must admit that the challenges you face are multi-faceted (physical, emotional, social, mental, spiritual).

If you find yourself in a similar situation, my advice would be:

• Read up and find out 
  Read about their medical condition to prepare yourself. Information and knowledge would dispel unnecessary anxieties and fear and can help prepare us for better action and response. Be realistic about the prognosis.
• Spend as much time with them
  Talk, discuss, dialogue with your loved one while they are still able to. Find out what they need and how best to help them.
• Get the Lasting Power of Attorney done
• Build a network of help and support for your caregiving journey.
  Don’t reject help when offered.
• Keep a journal
  For your own reflection and for remembering.
• Get yourself some space and time 
  Have time to recharge, reflect, and regain perspective. Get some regular exercise and stay healthy. This would help you last the journey.
• Pray often
  Hebrews 7:25 says “He is able to save completely those who come to God through him, because he always lives to intercede for them.” and Ephesians 3:20 reminds us that He is “able to do immeasurably more than all we ask or imagine, according to his power that is at work within us.”

NOW WE HEAR FROM REV ALVIN’S FAMILY MEMBERS AND FRIENDS:

IVAN NGO, SON: It came pretty naturally for the three of us to pick up what we were all good at helping out with, after a few test runs, helping to take care of my mum with my dad. I’m the secondary caretaker for my mum. Isaac handles the logistics, and Isabel handles the finances for the house and for my dad. My wife and I also made an intentional decision to have our new house be located nearer to my parents’ so that I could still be the secondary caregiver for my mum and help my dad. I didn’t want to ‘abandon’ them just because I was getting married and my wife was more than understanding. It wouldn’t be fair to my younger sister to take on such a role alone without my help just because I am married. She needed the time to focus on her studies as well. We three siblings eventually came to our specific roles in supporting our dad quite effectively.

Special message: Dad doesn’t like asking for help as he thinks he is burdening us. But the truth is, any one of us will drop everything we have just to help him when he asks. He always say, “My wife, I’ll take care” and we want to also remind him, “Dad, she’s our mum too.”

REV ROBERT LUM, SP OF ETERNAL LIFE ASSEMBLY: We are glad that being friends for more than 30 years, we would travel overseas together with Ps Alvin and Wai Leng e.g. attending the AG Centennial in USA. Arrangement was made with the church board and staff for Ps Alvin to work in the office twice a week with her. The staff would look after her when he needed to go out for personal matters or for a short break. They still join us occasionally for celebrations with our group of close friends.

Special message: Ps Alvin, we will always be there for you and Wai Leng—we are more than friends, we are family in Christ!

REV TAN HOCK CHENG, CLOSE PASTORAL FRIEND: Back in the pre-COVID-19 days, Ps Alvin and I used to hang out with a group of pastor friends, notably during the annual Pastors’ Prayer Summits in Malacca. Our friendship grew even closer after we traveled to Taiwan together with our spouses in 2014. When Wai Leng’s condition deteriorated and mobility became more difficult for her, we switched to texting and calling to encourage one another. Last Christmas, we had a great time of fellowship over a lovely home-cooked meal single-handedly prepared by Alvin.

Special message: Dear Alvin, thank you for being an exemplary pastor and an outstanding husband and dad. I’m deeply grateful and blessed to have a loyal, generous, and trustworthy friend like you.

REV THOMAS TAN, CLOSE FRIEND: My relationship with him goes way back when we were in Pakistan together with Operation Mobilisation. Upon knowing his wife is suffering from dementia, I seek to encourage him. To encourage him, I stay in touch with him through calling,  texting, having meals together, visiting, and ordering special coffee for him.

Special message: Bro Alvin, you are a living testimony to Ephesian 5:25. You are exemplary of how one should love his wife with sacrificial and heartful Christlike love.