Learning > Inspiration

She's 91, has dementia - and is also a caregiver

More families face care crisis as more 'old old' are caring for 'young old': Experts

Janice Tai on 12 Nov 2019

The Straits Times


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Former cleaner Ang Swee Huay is 91 years old and should have been able to put her feet up a long time ago. But she has spent much of the past 40 years caring for her two mentally ill children who used to live with her in their four-room flat in Hougang.


Son Cheong Poh Fatt, 56, has schizophrenia, and daughter Cheong Mee Choo, 57, has polio and depression. Both have been afflicted since their teenage years.


Madam Ang would wake up at the break of dawn to prepare their breakfast and lunch, remind them to take their medication and then leave for work. Once she returned home, she would cook dinner, and then go down on her knees to bathe Mee Choo on the toilet floor as her daughter is paralysed from the waist down.


Eight years ago, Madam Ang was diagnosed with breast and colon cancer. Four years ago, she started showing signs of dementia such as mood swings and memory loss.


But she continued to care for her two children and refused to take medication for her dementia as she feared it would make her sleepy. She wanted to be there for her children as much as she could.


In the past two years, however, she kept collapsing from exhaustion and had to be taken to hospital in an ambulance.


It was then that she realised that not only was she ageing, she also could not depend on her other three daughters, who are seniors themselves, to care for her and their mentally ill siblings. Madam Ang's husband died of lung cancer in the 1980s.


Eldercare organisations say more families are facing a crisis in care as the "old old" take care of the "young old".


This is because a number of "old old" caregivers eventually find themselves battling the scourge of dementia, making it almost impossible for them to care for their "young old" children, who may be especially vulnerable if they have mental illness or other disabilities.


Ms Peh Kim Choo, chief executive of the Tsao Foundation which specialises in eldercare, said: "On the ground, we notice a rising trend in elderly caregivers, and among these, more elders who are facing dementia while providing care to other adults, including spouses with dementia and children with disabilities or special needs."


She was unable to give statistics.


Ms Peh attributes this trend to the ageing population, the prevalence of dementia and smaller household sizes.


Around 82,000 people now have dementia, a number that is estimated to exceed 100,000 by 2030.


Ms Priscilla Tan, assistant director of nursing at St Andrew's Nursing Home, said its facility in Taman Jurong already has five different parent-child or sibling pairs staying there, even though the facility was officially launched only two months ago.


NTUC Health, which provides eldercare services, also has similar observations. A spokesman said: "We have seen more instances of elderly couples living alone who depend on each other to look after their needs, or situations where the 'old old', such as a parent, has to look after the 'young old', a child who is mentally challenged."


He did not give figures.


Mr Stephen Chan, head of caregiver support services at the Alzheimer's Disease Association, said it is very rare for a person to be both a caregiver and also have dementia, although it is still "definitely a concern".


"The caregiver will be vulnerable himself and will have difficulty performing complex tasks, and will face many challenges depending on the individual's and his charge's needs," he said.


Fortunately, in July, Madam Ang and her two dependants managed to find a suitable nursing home that was able to take in all three of them.


One of Madam Ang's daughters, Ms Rose Cheong, 61, who lives on her own elsewhere, said: "I called a few nursing homes, but they could not take them in as their conditions - dementia, depression, polio, schizophrenia - are all quite different."


Ms Cheong confided her woes to a social worker from the Institute of Mental Health. After a period of searching, the social workers found that St Andrew's Nursing Home was able to accommodate the family as it has the relevant expertise. It is one of the few nursing homes here with general wards, psychiatric wards and dementia wards all under one roof.


Madam Ang stays in the dementia ward on level two, her daughter is in a general ward on level three, while her son is in the psychiatric ward on level five.


For those who prefer to age at home, eldercare organisations such as the Tsao Foundation have been organising their services to serve the "duet" of client and caregiver.


Mr Chan said these families would also require befrienders to step in to help them on a daily basis if the caregiver's condition declines.


"Monitoring their condition is important to balance between minimising risks, yet allowing for auto-nomy and independent decision making," said Mr Chan.


"For instance, a person with dementia who is a caregiver would be strongly advised to apply for Advance Care Planning, Lasting Power of Attorney or a will, which would ensure some form of support for his charges when his own condition deteriorates."


Though Madam Ang and her children are all staying on different floors at the nursing home, they make it a point to gather daily.


After lunch at 2pm, Madam Ang is wheeled up one floor to chat with Mee Choo. Poh Fatt comes down at 4pm to join them for tea. Madam Ang stays on to feed Mee Choo her dinner before returning to her own bed.


Watching their interaction, it is clear that the family is close.


Madam Ang asks Mee Choo if she has eaten enough for lunch, while Mee Choo nags Poh Fatt to take his medication. Madam Ang then teases her son, mimicking the chattering of his teeth that occurs whenever he does not take his pills.


Her children are aware of the sacrifices their mother has made to bring them up. When money was tight, they often scraped by on bread or porridge, and would collect water in a bucket for their showers.


Mee Choo said in Mandarin: "I am worried about my mum. I hope she lives until 102 or 107 years old."


Madam Ang, who now has stage three cancer, replied in Hokkien: "I am getting old, and I know I need to start letting go of them. That is why we moved (to the nursing home), so they can get used to life here."


Source: The Straits Times © Singapore Press Holdings Limited. Reproduced with permission.



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