When I discovered my mother has dementia

Mrs NI Lou (68) was diagnosed at 67. Her story is  shared by her son and carer, Danny Leong.

My mother is a housewife. From the time I was born, she has taken care of me and my younger brother. We have always felt that she was very adaptable, and that her life was very interesting. She has been involved in various foreign exchange and stock markets. She has also researched, developed and written many recipes. Regardless of anything else, she has always made time for us. Unexpectedly, while she was still young, she was diagnosed with dementia.

About three or four years ago, I realized that she had become quite forgetful. The most notable time was when she forgot my birthday. On that day, there was no “red envelope” (a traditional Chinese blessing of monetary gift). On my birthday, first thing in the morning, I had always received this gift, so I was very disappointed.

However, I thought that she had simply forgotten because she had been spending a lot of time and energy on her newborn grandson. I felt a little concerned and helpless, but then I reassured myself, saying, “I am already in my 30’s. Should I still expect a red envelope?” Of course I expected it.  But right now, my only wish is for a healthy mother, though it’s a wish that cannot be fulfilled.

Apart from significant dates, our mother has gradually forgotten other things too. The most dramatic incidents involved the family and occurred when she forgot to turn off the stove, about three times in the same year. At this stage,  everyone realized the situation was serious!

I remember seeing her on the street two years earlier. She was ready to go home but confused about which direction to take. This image was deeply imprinted on my mind. Will her condition improve? Occasionally I still think so.

After more than a year, with various approaches and input from many relatives, friends, and indeed the whole family,  she finally went to the hospital and underwent some tests.  As expected, she was diagnosed with dementia. Since I  knew that this disease was irreversible, in the early stages of my mother’s diagnosis, I took some courses offered by the Macao Government, and in the library, read books relating to the disease. I learnt that consulting a doctor and taking medicine could only delay her decline and that the impact of dementia would soon be reflected in her everyday life. We had always relied on her to take care of the whole family’s needs, but with this situation being reversed, each family member would have to change their role and personal responsibilities in order to adapt.

At present, although our mother seldom walks in the street, in her mind she goes to the park for exercise in the mornings and evenings. She also shops at the market in her free time and has trips with her friends. She says these same things to us every day, so maybe they reflect her favorite way of life!

With regards to family life, my mother’s ability to look after herself in this context is fine. Furthermore, because she lives with her family, everyone helps takes care of her. But away from home, all kinds of situations and difficulties are possible. So, gradually, family members have made various adjustments in order to deal with this.

Personally speaking, the change of roles, from care receiver to carer, means we interact differently. In the beginning, I did not know how to get along with her. I was irritable, I was angry with her, and occasionally I  sulked. Then, I slowly learnt to be more tolerant, patient,  and understanding. This is a very special process, and I suddenly found myself growing up. One evening, my mother and I were chatting. I was talking to her about something when she said, “Just speak to me slowly. I  will understand.” At that moment, I recalled her love for us over the years. Although the word “love” has never been said out loud, she expressed it through decades of actions. She taught us systematically, and with great patience. She was meticulous and she was diligent. Now it is my time to contribute. In the days to come, I will do  my best to take good care of and cherish this “young  friend” – my mother!

我的媽媽是一位家庭主婦，從我出生後，一直全職照顧我和弟弟二人，總是感覺她 很靈活，生活也不枯燥，各種外匯、股票買賣，研發菜式，閒話家常聊八卦，沒想 到尚算年輕的她，竟然患上失智症。

大約三四年前，已經發現她比較健忘，最深刻印象的一次，他忘記了我的生日，沒 有紅包的早上，我非常失落，因為自我有記憶，生日的早上第一時間就是收到紅包 ！

當時僅僅以為她只是忘記了，可能把較多的時間、心血放在初出生的孫子身上，一 點點介懷，一點點無奈，還安慰自己說， 30多歲人還期待一個紅包嗎？當然期待 ，但現在，我最期待一個身體健康的她。

然而這個期待，終究沒有實現。

她漸漸忘記一些重要日子，而最令家人們印象深刻的是，大約在一年內發生了3次 煮食後忘記關火，大家都覺得事態嚴重了！後來回想，在更早的2年前，我在街上 看到她準備回家，發現她搞不清方向，這個畫面在我腦海深深烙印着，如果當時我及時發現這個情況，對她的病情會否更好呢？偶然我還是會這樣想。

經歷了大約一年多的時間，各種方法、連親朋好友、全家出動終於威逼利誘下帶去 醫院做檢查，不出所料，確認是失智症！

因為我知道這個病症，沒有逆轉的可能。在媽媽確診初期，上了一些澳門政府開設 的課程、到圖書館翻閱相關書籍，了解到就診及吃藥只能延緩她的衰退！同時，失 智症的影響很快就反映到生活上，家庭角色的轉變，個人的責任，都需要重新適應！

一直以來倚賴他她照顧家庭生活所需，現在已完全反轉過來！

現在，她越來越少走到街上，但在她的腦海裏她早晚都到公園做運動，閑時到市場 購物，還有和朋友去旅行，每天說着同樣的事，這或許是她最喜愛的生活吧！

因為跟家人們住在一起，大家都共同照顧着她，在家庭生活里，媽媽的自理能力還 是不錯！但是離開家裏，各種情況就會出現！慢慢地家人們都有各種調適、學習！

我個人來說，角色的轉變，從被照顧者變成照顧者，使我們的相處不一樣，剛開始 不懂與她相處，偶爾煩躁、偶爾罵她、自己生悶氣，到慢慢學會包容、忍讓和體諒，這是一個很特別的過程，發現自己也突然成長了！

有一天的傍晚，只剩我和媽媽在聊天，我在跟她說著一些事情，「你這樣慢慢跟我 說就好啦，這樣我就會懂！」她突然說道。

那一刻我回想到多年來她對我們的愛，雖然「愛」從沒說出口，但她用了幾十年的 行動表達了，循循善誘、無微不至、任勞任怨！現在是時候回饋她了！

在往後的日子裏，我要盡我的力量好好照顧、愛護這個「小朋友」，我的媽媽！