The pearl necklace of dementia

Madam Pai Wan-Chih (74), primary carer to her mother with dementia, was herself diagnosed and has been living with dementia since 2016.

Hello everyone! I am Wan-Chih and I graduated from the Department of Special Education of Taipei Municipal Teacher’s College. After graduation, I taught in junior high and elementary schools for 28 years. Some of my beloved children and lovely grandchildren live in Japan, and I miss them very much.

At the beginning of 2013, I noticed that my mother was behaving abnormally. She went to the doctor and was diagnosed with dementia. In the following days, while taking care of my mother, I too realized that I had similar symptoms.  For example, a rag I had just used disappeared. I couldn’t find it – no matter how hard I searched. So, I went to the doctor too, and I was diagnosed with mild dementia. It was in April 2016. For a long time, I couldn’t accept this news and I shut myself off, but, one day the pastor came to my house to pray for me. That was when I realized that my mother still needed my care, I couldn’t drag my children down, and I couldn’t give up on myself.

I began to actively participate in cognitive training and many other different activities. I went to the elderly service centre to participate in brain health, art creation and Taiko classes. I also joined the Japanese folk dance and sign language dance classes. I met a group of like-minded people and became good friends with them. Together we participate in public welfare performances, even travelling to Japan for cultural exchange.

Advocacy for dementia rights

In 2016, I joined the Taiwan Alzheimer’s Disease  Association (TADA) dementia advisory group. Two things made the greatest impression on me. The first one was being able to participate in the dementia-friendly MRT initiative. At that time, I found the font used in signs in the stations was too small, and the arrows used for showing direction were unclear. This meant that oftentimes I didn’t know where to go. I discussed this with TADA and the advisory group members, and suggestions I made to  government resulted in big improvements in this area. The second one was to create, with the advisory group,  the “Cherish Memories Calendar”. We included various features to make it suitable for people with dementia;  for example, we used pictures that corresponded to the seasons and enlarged the date grid. Also, we were able to share this calendar with numerous organizations, as well as with our friends. Everyone loved it, raved about it and pre-ordered one for the next year!

As dementia is not the end, embracing people is  really important.

After being diagnosed with dementia, my memory has gradually been lost. I find this very distressing. It’s like a  pearl necklace with broken strings – the pearls scattered on the ground. But then I figured it out. Just as each pearl is precious, so too is each memory. And, I don’t need to force myself to string either the pearls, or the memories, together again.

I want to tell everyone that dementia is just the disappearance of a certain part of life. Although it’s an inconvenience, God sends many angels to help. If you suspect your relatives or friends have symptoms of dementia, please be more caring and tolerant. Early dementia patients may not even know they have a problem. Therefore, please encourage them to seek medical examination as soon as possible, so they don’t miss the golden opportunity of early treatment. In addition,  people living with dementia need to stay active in order to delay deterioration. The government and many social groups have valuable resources to help people living with dementia, but not everyone has this information. I hope that, in the future, there will be more publicity to raise awareness of dementia and available treatment.