Alzheimer’s through a daughter’s eyes
JOURNALIST Catherine Siow was just 37 when her mother was diagnosed with Alzheimer’s Disease.
It was 1998 and her mum was 66 then.
But it was not really a surprise to her and her elder brother. The symptoms started manifesting four years before, after their father died, leaving a void in their mum’s life.
The most obvious symptom was the forgetfulness and repetitive questions.
“The diagnosis was a great relief to me because in the four years prior to it (diagnosis), I did not know about Alzheimer’s and just thought Mum went mad after Dad passed away and I was also grieving for Dad then.
“Initially, I used to have heated conversations with Mum when she would forget things and keep repeating questions. I didn’t understand what was happening and thought it was part of her grieving for Dad,” explains Catherine, who later became familiar with Alzheimer’s because her friend’s grandfather also had it.
In the mid-1990s there was not much awareness about the disease as well. After learning about it, Catherine started reading up more about the disease and looking for support groups for caregivers.
She then found and worked on the committee of the Alzheimer’s Disease Foundation of Malaysia (which was only registered in 1997) as its “publicity member”. She also became the pioneer chairman of its caregivers support group.
Two months after the diagnosis, Catherine quit her job at Star Publications to take care of her mother on a full-time basis. She rejoined the company two years later.
About a decade after the diagnosis, it became more heartbreaking when her mother eventually forgot that Catherine was her daughter.
“I couldn’t accept it at first because I was the only one taking care of her, all the time. Some days she couldn’t remember me and my name. As time went by, she forgot my name and I needed to prompt her, tell her my name and that I was her daughter,” says Catherine.
She did her best to take care of her mum and in July 2011 finally, with a lot of anguish, made the tough decision to put her mother in a nursing home. Her mum at that time needed nursing care round the clock.
According to Catherine, other “old age” illnesses had also cropped up by then.
In the 14 years since diagnosis, her mother had major surgeries for the removal of gallbladder stones and cataract for both eyes. She also had a uterine prolapse and had to have a pessary inserted and changed every six months. The gynaecologist said it couldn’t be operated on nor could she have a hysterectomy because the post-surgery management was too risky for Alzheimer’s patients. For most women, the pessary change is just a half hour at the gynae’s clinic. For Catherine’s mum, it was under heavy sedation and included an overnight stay at the hospital.
The decision to put her mum in a nursing home still fills torments her today.
“It’s a decision which I still cannot forgive myself for making. I felt terrible. I wouldn’t want it and so I don’t think she would have wanted it. But I was making all the decisions and thinking (supposedly rationally) for her. Today, I am having issues reconciling this decision and my pyschiatrist is still trying his best to help me resolve this issue which is eating me up emotionally, physically, morally and spiritually,” explains Catherine, who returned to work after her mother was placed in the nursing home.
The first nursing home was in Banting and Catherine would visit weekly. She almost rented a house nearby but gave up the idea for the usual reasons of traffic jams and travel time to office and from home.
Finding a nursing home that would take in an Alzheimer’s patient was not easy, especially for those with difficult or violent behaviour. Luckily, her mother was a model patient and a cheerful one at that.
Nonetheless, her mother changed nursing homes a few times.
“When she was at the one near our house (a 10-minute drive away), I took her home during my long off days and took care of her at home. It wasn’t easy as I wouldn’t get to sleep much as Mum would get up often to urinate,” says Catherine.
She tried to make life as normal and happy for her mother as possible, even taking her for holidays abroad.
“It wasn’t easy either when we travelled abroad for holidays but it was worth all the ‘hassles’ because Mum was so happy. She felt on top of the world when she saw Mat Salleh (caucasian) people. So, just to see her happy, I only took her to Mat Salleh cities like Sydney, Melbourne, London, Paris and Perth.
“She also loved flying, so we also flew locally to visit friends and stayed at hotels. I was ecstatic to see her so happy!” explains Catherine, admitting they would never say goodbye at the end of the holiday because her mother would forget it anyway.
Of course, these holidays would be draining on Catherine, physically, mentally and emotionally. Plus, it would not be cheap as they could not join tour groups and needed to go on their own as Alzheimer’s patients cannot be rushed as it agitates them.
“In the later years, she could only remember me by my familiar face as I visited her daily on the way to work. When not working, I would spend more time with her and talk to her in Hakka,” says Catherine.
According to her, her mum also gradually lost her language skills, daily living skills and memory (first the short-term and with time, more and more of her long-term memory).
“Mum, who was very cheerful and talkative, gradually lost her speech and on good days, with prompting, could repeat after me. But she always smiled for every one and of course for me,” explains Catherine.
Catherine’s mum passed away on July 5, 2014. She was 82.
In her last days, she could only remember her surname (she had always been very proud to be a Yap, which she linked to Yap Ah Loy).
Naturally, it was heartbreaking all the way to the end.
“The signs were clear and we read about it: the stages in the illness and the estimated lifespan from diagnosis and the stage when diagnosed. But you are never prepared, I suppose.
“Even now, I miss her a lot, especially as this was my first Chinese New Year without her. The attachment is very strong after 20 years of just me and her. Even now, my heart is still in pieces and I am taking a long time picking them up.
“I am a changed person, and still changing, which is neither good nor bad at the moment, but very ‘broken’. But I have great support group friends who are still supporting each other till now from our pioneer days in 1998,” says Catherine, whose journey with her mum through Alzheimer’s lasted 20 years.
Her advice to others taking care of family members with Alzheimer’s is “Be kind to yourself. Try.”