It’s a long journey.  Let there be laughter.

Jenny Lim shares positivity in caring for her mother living with dementia, Madam Tan Giak Moh (91).

Madam Tan Gaik Moh was born in Songkla, Thailand. She was adopted by a childless couple in Penang. During her early teen years, she started working to support her family. She married at the early age of 17. She began sewing to earn a living and later she ran a factory manufacturing clothes. She has three daughters and one son. Her eldest daughter lives in Dallas, Texas. Her second daughter is in Butterworth, Penang. Her youngest daughter and her son both live in Kuala Lumpur. Her hobbies include watching movies, sewing, and playing cards. Fashion designing was her passion, but recalling the steps are a challenge these days.

Madam Tan’s forgetfulness started about 10 years ago. We noticed she kept stitching the clothes incorrectly, then she started to lose interest in sewing altogether. She began sleeping more during the day, but sometimes she would wake up at 1.00 am to take a shower. Gradually she also gave up cooking. She started to ask us how to do this or that because she had forgotten. She also forgot how to write words that she knew, so she would draw pictures to represent the words.

Because our family unit has different generations living together, our  Mother’s care has been relatively easy to manage. We would say that involving her in family life and giving her responsibility for tasks entrusted to her helps her self-esteem. She continues to assist by doing whatever she is still able to do.

There are good days when she remembers things; when she is more alert and engaged. Then there are times when she sleeps more during the day and wakes up at night, asking if it is already daylight. She will keep saying that she is not hungry, but with encouragement, she will eat. She forgets what has happened and sometimes says she wants to go out to work and be financially independent. Nonetheless,  together we share many good memories.

We have noticed that engaging my mum in tasks to fill the time has definitely helped in slowing down the progression of dementia. Sometimes we need to re-teach her how to do things she used to do. Then she remembers, but in just a couple of days, she will forget again. Although it is a long journey, living in unity and letting her forgetfulness generate laughter, rather than anger, will soothe and calm the situation.

We understand that engaging a full-time carer may not be the answer;  the burden on one person simply being too great. Furthermore, a  single carer may not have the capacity to provide the 24/7 care that would be available in a nursing home. In other words, we know that there will come a day when we may have to rely on long-term care in a home for our mother. Our wish is to see the realization of the  National Dementia Policy, so that important regulations will be passed and benefit persons living with dementia and their carers. To further enhance the Standards of Care and Quality of Life for Persons with  Dementia, much planning is still required. This should be based on:  culture, infrastructure, religious perspective, economy, etc.

The list goes on, but let us take one baby step at a time and do what we can.

Thoughts from Madam Tan Giak Moh…

I am Tan Giak Moh, and I am 91 years old. I have many grand-children and greatgrandchildren. I am currently living with one of my granddaughters. Every day I keep myself busy with the little things that I am still able to do. Previously, I owned a manufacturing clothing business where I designed, made samples and later mass produced the clothes. My daughter says I have to ‘work’ to keep my memory intact. My daughter and granddaughter do the laundry every day. My job is to fold the clothes and also to iron those that require ironing. I have cataracts in my eyes. I am on medication for hypertension and sometimes I have gastric problems.

Sometimes I cannot remember things, and I do not know what I need to do. Most days I hear voices… a man’s voice singing in the distance, in the Teowchew dialect (my original language). I also see people passing by me. When I try to see who that person is, it is very strange – they are just not there.

My daughter asks me to exercise and socialize, to keep myself active and healthy. I am still able to climb the stairway to my room. My other 3 children and relatives call me on the mobile phone. They keep me updated on what is happening around us. Most nights I will dream that I am walking on a very long, uphill journey, with no one in sight. Initially, I was scared. Now I have gotten used to it. I do not understand why. It is very strange.

My great grandson keeps me company after school. He tells stories about his friends. He wants to learn Mandarin and I speak with him in this language. In turn, he will talk to me in English (but I do not understand). He cannot speak Hokkien very well, but he is a good boy.

Time passes quickly with many things to do each day, and I am happy.
My granddaughter likes to take me out, but most times I do not like going, because of the COVID-19. Also, my legs are not steady, and I do not like the inconvenience of going to the washroom when we are out.

Thank you for listening to my story.