Guilt, burnout and sacrifice: Dementia patients’ caregivers ask ‘have I done enough?'

Guilt, burnout and sacrifice: Dementia patients’ caregivers ask ‘have I done enough?'

How do you do enough for the person who needs your help, and leave enough for yourself too? Caregivers share what they go through - and how love keeps them at it.

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She's cheerful one minute - then angry and violent the next. People used to love being around Galen's sociable mother - now, she's draining to be with. How do you care for someone like that without burning out and losing hope? Read more. Watch the full 5-part series, Facing Dementia.

SINGAPORE: Day by day, the son watched as the illness stole away his mother’s independence, her memories and her personality.

It made Mrs Yeo Liu Hin confused and agitated to have to struggle for the thoughts and words that once came so easily to her. Once a sociable hostess whom friends loved being around, the 78-year-old became prone to fits of aggressive temper - hitting and pinching her caregivers, whose bruised and scratched arms bear testimony to her mood swings.

Her son, Galen Yeo, series producer of the Channel NewsAsia-commissioned programme 'Facing Dementia’, understands only too well the challenges faced by caregivers of such patients, and the emotional and physical burn-out that can take place.

“It tires people out, looking after someone with dementia. Even my own family, my sister, she will call me up and say she can’t cope,” said the creative director of The Moving Visuals Co.

“My helper has been chased out of the house a few times. She had to sit at the park next door and wait out my mother’s tantrums. So it takes a lot of patience to deal with this…

“You have to deal with her as you would a child. You have to smile and laugh and not take it too seriously if she has a temper.”

THE BALANCE THAT’S ‘ALWAYS OUT OF BALANCE’

Mr Yeo’s world was turned upside down when his mother was initially diagnosed with dementia in late-2013, and specifically Alzheimer’s disease in 2016. (Dementia is often used as an umbrella term for cognitive-decline diseases like Alzheimer’s.)

'You have to deal with her as you would a child,' said Mr Yeo.

Her growing inability to remember things like her address or even friend’s names brings with it a particular pain for her loved ones.

“There’s that element of guilt,” said Mr Yeo.

With the person with dementia, you cannot really do enough in a sense, because it’s like whatever you do, the person will forget what you’ve done.

“Even if I saw my mum an hour or two ago, if I speak to her again, she might have forgotten that I had actually spent a few hours with her that day.”

“How do we find the balance? How do you do enough for the person, and do enough for yourself?” he asked. “So I think it’s important for caregivers to look after themselves - because I think that balance is always out of balance.”

Mrs Yeo is one of some 40,000 people in Singapore suffering from dementia. Come 2030, this figure could triple. The implications for family members who have to look to their needs are enormous.

How do they “do enough”, and does it mean the wholesale sacrifice of their own personal dreams, career and social life? Can a balance be struck?

Watch: Journey into dementia (10:41)


HOW DEMENTED IS SHE?

One other caregiver featured in Facing Dementia is Mr Danny Raven Tan, who teared up describing his struggles looking after his mother, Madam Thian Chin Ngoh, 82, who was diagnosed with dementia in 2015.

An only child, Mr Tan left his marketing job to become a full-time artist, working at home so that he could care for her, with a helper’s assistance.

He and his mother clash sometimes, for instance over her belief that friends long dead are still alive. “She will say ‘Oh, they are coming so make sure, you know, the place is clean.

“If you ask like 10,000 times, I will flare and I will say ‘they are dead!’ I will bring out the obituaries, ‘See, see, look, they are all gone!’ And then she will argue and we will start to fight,” he said.

Danny Tan sometimes had trouble getting his mum to eat.

She often refused to eat, insisting that she was full. Mr Tan remembers once flinging a plate of anchovies on the floor in despair and running out of the house.

“I ran downstairs, I was crying, I was drinking and smoking. Of course, I felt very guilty about what I had done.

“After a couple of hours, I came back up. And the maternal instinct kicked in – she asked, ‘Who bully you?’ Of course that made it worse… So sometimes I wonder how demented she is,” he said.

And yet, Mr Tan refuses to put her in a nursing home. “I love her very much,” he says simply. “And even though it’s a love-hate relationship, it’s okay.”

Watch: A love-hate-love relationship (9:09)


Mother and son’s angst-filled, heartwarming story was shared by CNA Insider on Facebook, and it has since drawn more than 4 million views - as well as thousands of comments from many individuals who identified strongly with his daily struggles.

‘IT ROBBED MY LIFE’, AND YET…

Among them was Singaporean Marie Johnson.

“I have a strong mom too, who controlled almost all my life. Then she became sick (with dementia) and suddenly I became the person around the house, taking care of her, studying and working at the same time,” she wrote. It’s “like you become their mother… and they are just like our children”.  

She has been looking after her mum since she was nine, she said. “I’m in my late 50s now… and a grandmother”, she added.

Taking care of her robbed a lot of my life. I have lost a lot of things that I dreamt of doing. Most of my time, I just look after her.

Ms Johnson added: “Some people told me that I cannot waste my life sticking by her and cooped inside the house with her all the time.” They have suggested that she put her mother in a nursing home.

But she cannot imagine leaving her  - even for a few days to travel abroad for her granddaughter’s baptism  - in a place where “nobody is going to look at her every second, talk to her every minute, listen to her nonsense … kiss her and manja (pamper) her.”

And therein lies the dilemma that many caregivers face – the difficulty of letting go once in a while, even as they face the inevitability of burnout if they don’t.

Caregivers may find it hard to let go once in a while, even as they face the inevitability of burnout if they don’t. (Photo: Reuters)

“It’s so hard for me to think (of leaving) my mom while I enjoy life. But I also want to enjoy something I’ve always longed for, like travel,” Ms Johnson said.

Dr Cameron Camp, director (research & development) at the Centre for Applied Research in Dementia in the US, said: “Many times, (caregivers) assume that they, and they alone, are responsible for taking care of this person with dementia.

“And we’re not just dealing with a cognitive issue, we’re dealing with physical issues, physical frailty, and personal care. It’s a 24-hour day job and it can be exhausting.”

GUILT OVER PUTTING MUM IN HOME

The unpredictability of the condition is what often makes it draining to be a caregiver. Afflicted loved ones might repeat questions constantly, have problems finding words during conversations, and feel overwhelmed by new situations.

Facebook user Loh Weiling described it as an emotional roller-coaster, “up and down”, to watch its progressive effect on her 83-year-old father.

“For the first year, it was just hard to accept. (I) had to make many adjustments in my daily routine just to suit him, and every day, seeing his memories (being) wiped out bit by bit was not helping.

And for some, the burden gets too much to handle on their own.


One Facebook user with the handle Love Tan Toh shared about the guilt she felt after putting her mother in a nursing home. Her mum is in her last stage of dementia where patients may even need to be fed via a tube.

It was not an easy choice to make as the only daughter, with two kids of her own to look after, she said.

All her siblings said that I'm not a good daughter, but they don't understand how I feel, putting my own mum in the home, which I don't wish to do so. This guilty I will carry inside my heart forever.

“After seeing the video clip in which Danny (said he) never thought of putting her mum in a home, I felt worse,” she added.

This sparked a debate among other commentators, a few of whom questioned her decision.

But Jey Chin wrote: “(It’s) easy for some folks to judge… They don’t consider that it might be the safest thing to do.

“My grandmother had to be placed in a home. She had severe dementia. It broke our hearts.  I felt like such a useless person, and that I let her and my late mom down by not taking care of her during my grandmother's last two years of her life.”

It broke our hearts to put her in a home, wrote one caregiver. But it was for everyone's safety. (Photo: AP)

But there comes a point when a dementia patient might become a safety risk, Ms Chin wrote.  

“My grandmother was a highly independent woman. She doesn't like depending on anyone to do things for her. So there were many times when she cut herself with a knife trying to butter her bread.

I resorted to hiding all sharp objects, yet she was able to find stuff. She insisted on boiling her own water for drinking… Once, she almost burnt our house down with herself inside.

“Another time, I woke up one morning with blood all over my floor. She had cut her thumb trying to slice her bread which was already sliced. How she found the hidden knives, I don’t know.

“We could not afford to hire a maid, full-time or part-time. And I couldn't be with her 24 hours as I have my own to handle (with) their activities and extra classes. It was one of the toughest decisions of my life to make... But I did it for her safety,” she wrote.

‘THE HAPPIEST DAUGHTER ON EARTH’

There is no definitive cure for dementia, as the exact causes are unclear, but it is possible to minimise the symptoms or slow their onset with treatment and by staying active.

Von Tan wrote that at 76, and in the early stages of dementia, her mother is still at her job of the past 10 years with a motel.  

“She doesn’t usually have a lot to do because her bosses are aware of her condition,” said Ms Tan. “My brother and I are very skeptical of letting her work … but we need her to be agile, alert and active.”

They make sure she doesn’t get lost by walking her out, and giving her an address tag which she can show to cabbies. She has trouble remembering the day of the week, refuses to shower sometimes, and asks the same questions repeatedly. Said Ms Tan:

It’s not easy, but we are taking small steps at a time… At times, she gets on my nerves but I always remind myself that this is not what she signed up for.

“She’s taking medicine to slow down the process. I cannot imagine the day when she can't remember me anymore.”

Ms Tan admits that she and her mother didn’t get along when she was younger - but these days she blow-dries her mum’s hair, trims her nails and takes her out to dinner.  “She’s always holding my hand when we are out. This makes me the happiest daughter on earth.

“I love her with all my heart and I know we will take care of her till her very last breath,” Ms Tan said.

Mr Galen Yeo sings to his mother now and then.

LIVING WELL, EVEN WITH DEMENTIA

Meanwhile there are many sources of useful advice and help for anyone dealing with this frustrating disease.

Dr Camp has adapted the Montessori method of teaching to help caregivers better understand and empower people with dementia.

This includes engaging the senses, through physical and art or music therapy, to help such patients and their loved ones rediscover the world around them. He said:

We are not paralysed in the face of dementia. Persons with dementia can learn. Persons with dementia are persons first, and it is about learning to live well.

Mr Galen Yeo, for one, has found music to be a great help for his mom in coping with her condition. She has attended music therapy sessions at Khoo Teck Puat Hospital, and at home, he gets her to watch music videos on Youtube and listen to the music of yesteryear.

Music has always been a big part of his mother’s life  - she used to manage clubs and bands when she was younger. Said Mr Yeo: “Music can either excite or calm you down. It does both for her and it keeps her a bit more centred. She doesn’t become so agitated.”

In happier times, at a birthday celebration. Music has long been a part of Mrs Yeo's life.

Music therapist Jane Tan said that music can provide another way for dementia patients who are losing their speech to “express themselves”, as well as for others to communicate with them.

And that is what Mr Yeo does, often singing to his mother songs like Over the Rainbow or Que Sera Sera accompanied on a ukulele or guitar, sharing that special moment.

“I suppose past a certain point, you just realise that you cannot control all these things,” he said. “Her dementia is advancing pretty fast. Who knows? She might not remember me in the next few months.

“I used to worry about how much time I could spend with my mum… but really, what it boils down to is you take things moment by moment.

"If i sing my mum a song, and she’s happy, that’s great. Even if she gets upset later, at least, I’ve given her a little bit of joy.”

Watch the 5-part series, Facing Dementia, online now.

More resources for caregivers:

The Alzheimer’s Disease Association is made up of caregivers, professionals and all who are interested in dementia. It also provides caregiver support services. 

A health information and services portal which links caregivers with self-care tips. 

Forget Us Not aims to raise the awareness of the problems dementia patients face and ways for the public to support them.

Filmmaker Galen Yeo and his mother, Mrs Yeo Liu Hin.

Source: CNA/yv