Real Stories from Caregivers
Explore the realities and stories of other dementia caregivers here: Mothership.SG | RICE Media | Our Grandfather Story
“As a caregiver, it is very tough and emotionally draining to look after a dementia patient. Because of my love for my father, and also my prayer to my God to give me grace, strength, understanding, and patience to continue as a caregiver, I am able to care for him until today, even as I witness his memory loss and behaviour changes. I’ve also resigned from my job to spend quality time with him and to have time to rest. As a caregiver, we must remember to take a day out to refresh ourselves so that we have the strength to continue to take care of our loved ones.”
– Mdm Betty Kim Tan, caregiver for her father
Mdm Lee (not her real name) is a stay-alone person living with dementia. One of the challenges I faced initially was building rapport and gaining her trust. It can feel frustrating at times as she struggles to retain information given to her, and would often get upset with GoodLife! services due to episodes of confusion.
However, I see it as a privilege to be able to support her. I remember almost tearing up when she thanked me for the first time after a session, as she was mostly upset and sometimes raised her voice in previous sessions.
– Janna, Social Worker from GoodLife! Marine Parade
“Experiencing dementia caregiving through interacting with and taking care of a friend’s father who has dementia opened up my perspective about caregivers’ struggles and stresses. I hope there can be greater awareness for the community to become Dementia Friends to create a culture in which persons living with dementia and caregivers are empowered, supported, and included in society. As caregivers struggle to look for domestic helpers who are trained in dementia care, I hope that government agencies could explore including dementia care as one of the pre-requisites in their training.”
– Mazni, Senior Programme Executive from GoodLife! Bedok
“Three years ago, while I was still a newbie in the social service sector, my first case was to provide community-based support to a stay-alone senior who was diagnosed with dementia. Mdm H spent most of her time at home looking out of the window or laying in bed waiting for time to pass. It took me six months of standing on the ground floor looking up to her 2nd floor window and saying hi to her, before she finally opened her front door to welcome me. The conversations from outside her door initially lasted for 2 minutes, and eventually went on for 15 minutes.
Just before the onset of COVID-19, Mdm H unexpectedly agreed to attend day care. It was a huge leap forward, from an isolated senior who initially did not want to talk to anyone. The initial transition was not smooth sailing, involving every community partner in the case. However, Mdm H slowly developed a good appetite and started attending day care more often.
One day, Mdm H’s daughter called me and was in tears. Mdm H told her daughter: “This is a nice place; can I stay here?” This was the first time her daughter received acknowledgement and assurance from her mother that she was doing the right thing.
As I pen down this experience, Mdm H had been admitted to a nursing home and adjusting really well in the structured environment. She is not rejecting it nor causing any trouble in the nursing home. I spoke to Mdm H’s daughter today, she told me a huge load had finally lifted of her shoulder. She is finally assured that her mother is well taken care of.”
– Gary Mok, Senior Case Worker from GoodLife! Kreta Ayer
“When a caregiver shared the difficulties and pressure he has to face while caring for his wife, my heart was moved. Despite all his additional responsibilities, he tells me that it is now his turn to repay his loved one for all the care and support she had shown him in all their years of marriage.”
– Anonymous
“As a caregiver, I found it most difficult to seek help, as doing so made me feel inept and more importantly, unfilial. I would often berate myself. How could I put myself first when my father had done nothing but shower me with love and support from childhood through to adulthood? This guilt is something that I’m still trying to reconcile with and learning not be crippled by.”
– Caregiver (Anonymous)
A caregiver’s reflection on the difficulties of taking care of her husband.
30/09/2018
“Frightened; Distress; How to deal with William’s Sickness; Dementia”
Drawing of Burning Sun reflects caregiver’s burnout; “No tears to cry but must be brave.”
Drawing of 7 Star-Shape reflects the “power to overcome any obstacles in one’s way with the help, support from Angels.”
24/05/22
My husband [was] diagnosed with dementia in 2017. Walking [is] unsteady. [He’s] getting more forgetful, [and saying the] wrong words. [He] has trouble finding the right words to say. [Becoming] frustrated. So, [we] use sign language to point at things, and he will nod his head to agree. So, I must know his habit, likes, and guess what he wants.
[It] is difficult to get help on your own. I try [to] approach some agencies providing information and services on dementia. But some need doctor’s referral letter. One [told me that the dementia] must [be] severe [before they] accept. [Another told me to] call [myself] when ask for help to contact Silver Support. I feel helpless, anxious, bitter, [with] no hope.
So, a doctor’s referral letter, help from community nurses, social worker, and silver Ambassadors will help to solve some problems and get needed help.
– Alice, Caregiver
“Whenever I spoke with her, it felt like I was catching glimpses of who she used to be in different times of her life. She could be a high school girl in a minute, and a hardworking mother in the next. My 80-year-old client with dementia reminds me that she is more than who I see in front of me, and I hope to continue embracing the ups and downs in our journey together.”
– Jessica, Social Worker from Kreta Ayer Family Services
“I used to feel lousy when my husband who has dementia makes nasty remarks at me or turn violent toward me, but I have learnt to cope as I become more aware about dementia. I have also learnt to explore different practical ways to manage his behaviour. Humour is also my way of coping with the stress and I allocate time daily to do things that I like.”
– Mdm Chang, Client of GoodLife! Telok Blangah
“我已经照顾我先生四年多了，这期间是挺辛苦的。虽然他改变了很多，也开始渐渐地认不出亲密的朋友和家人，我仍然希望能够好好地照顾他，陪他走完人生最后一段旅程。”
(“I have been taking care of my husband for four years and it has been rather tough. Although he has changed a lot and has slowly started to forget friends and loved ones, it is my hope that I will be able to take good care of him, and accompany him as he walks through the final journey of life.”)
– Caregiver (Anonymous)
“我今年70岁。不知不觉看护亲人已3年了，最近她好像记忆越来越差，我只要和她在一起，她什么事都要问，和她解释她又听不懂，好不容易让她明白了，她又反驳我，说我不会讲，真的很烦 。 明知这也不是她想要的，真的搞到我很累，情绪低落。”
(I am 70 years old. Unknowingly, I have already been taking care of my loved one for 3 years. Recently, her memory seems to be getting worse. She would keep asking questions but refuse to accept my explanations. Even after understanding, she would incite arguments and blame it on my inability to explain things. This really irks me. Knowing that this was not what she wanted makes me very tired and depressed.)
– Caregiver (Anonymous)
“The persons living with dementia are unique individuals with stories and characters who yearn to live a dignified life. It is essential for the family, caregivers, and social service practitioners to locate and open the ‘doors’ for connection and journey with them through recognition, respect, and trust.”
– Anonymous
“As an intern back in 2018, I co-managed a client diagnosed with dementia. The client was an active participant in our groupwork sessions, and I also visited his home a couple of times. On one occasion while I was heading home, I saw him at the market near my office and cheerfully waved at him. While he did not recognize me, he happily offered to buy me ice cream.”
– Damien, Social Worker from Marine Parade Family Service Centre
“My role as a social worker reminds me keenly of how it can be difficult for both persons with dementia and their loved ones to adjust to their roles of now receiving and giving care, and that we should seek to support them in this process in a manner that empowers and maintains their dignity.”
– Social Worker (Anonymous)
“以前一句话可以重复说不停，但现在老爸不喜欢开口。这才让我领悟到，可以交流的时候，多跟他交谈。这几年的陪伴和照顾爸爸，也会有辛酸流泪的时候，但他到目前为止，没有给我麻烦。比起其他看护者，我算是小巫见大巫，很幸运了。也许是我抱着感恩心才能走到今天。”
(“My father used to be able to repeat a sentence over and over again, but now he doesn’t like to speak. That’s when I realized that while we are still able to communicate with him, we should talk to him more. Accompanying and caring for my father over the past few years have brought about bitter tears, but he has yet to trouble me thus far. Compared to other caregivers, I’m very lucky. Maybe it’s my gratitude that got me where I am today.”)
– Ms Soh, Client of GoodLife! Telok Blangah
“When seemingly irrational behaviour is exhibited by a person living with dementia, it is likely that beneath that veneer of fear and baseless actions lies an underlying need. What we – as people with the ability to perceive what they cannot – need to do, is find out this underlying need. Though it is hardly straightforward nor easy to find, it is crucial in identifying the core of their issue, opening avenues to help them with empathy.”
– Lin Aiting, Director of GoodLife! Marine Parade
“My husband had been diagnosed with mild dementia in early 2020. It really pains my heart when I see my husband, who had always been a capable gentleman and retired teacher, gradually lose his mobility and memory.
As a man who took pride in his independence and values dignity, it was also difficult to get him to accept physical help at the start. Nevertheless, I was eventually able to encourage him to ease into a day care, which allowed me to cope better.
However, a year later, age caught up with me as I experienced frequent chronic pain in my knees, shoulders, back and fingers. I was not able to cope with housework on top of caring for my husband, whose functions declined further with frequent urine overflows on the bed. The frequent cleaning stressed me out and disrupted my sleep, and I knew I needed to seek further help. Thankfully, I signed myself up for three caregiver support groups to support my husband’s care, and also signed myself up for three caregiver support groups organised by GoodLife!, to learn more about how to manage my husband’s dementia care needs, and also my own stress levels. I also make it a priority to go for daily morning exercises, to take care of my own health, in order to be able to support my husband for the longer haul. While the caregiving journey ahead remains uncertain for me as his dementia progresses, I choose to take things a step at a time, and appreciate that God has given us this life to make every moment count.”
– Dorothy, 76, Caregiver for Mr Kang (husband), 83, who has dementia
“I first knew I desperately needed help when mum’s dementia behaviour escalated to her frequently threatening to end her life when her wants were not met back in 2020.
The process of seeking help was not easy, but I did not give up, and learnt to have patience to keep reaching out. Initially, I tried to enrol mum in Dementia Day Care. It was a good respite for me in the day as I could take time to run errands, attend to work, and volunteer for food distribution – doing little tasks that I enjoy. However, mum eventually started to reject Day Care, complaining about it being “too cold”.
A year after enrolling into Day Care, mum experienced vertigo which caused her temper tantrums to worsen to the point that the Day Care could not manage her at the centre; I had no choice but to bring her back home, and care for her 24/7 on my own.
I felt immense pressure as I had to constantly watch over mum, who also has Parkinson’s disease, as I was afraid of her falling. Mum would also frequently call for me to attend to her needs and would get agitated when I could not respond to her as quickly as she wanted. While I coped by talking to friends, seeking professional help, and slowly learnt to adapt to mum’s behaviours by taking her out for walks which she enjoys and distracting her, I found myself increasingly unable to make time to take care of my own needs. It got to the point that I kept missing and postponing my own medical appointments, including essential ones for my cancer, asthma, and increasingly swollen ankles from caregiving.
After years of tumultuous caregiving, I made a difficult decision to apply for a dementia nursing home for my mum. On one hand, I was worried about the toll years of caregiving had taken on my own deteriorating health. On the other hand, I was immensely afraid about mum’s health taking a toll after admitting into a nursing home.
After months of difficult deliberation and help-seeking process, mum has recently been enrolled into a nursing home. While I am relieved mum has been adapting well to the nursing home thus far, I still carry with me heavy feelings of guilt and worries about her. I can’t help but feel sad sometimes thinking about whether I could bring mum back home again. While I know mum is taken care of by professional nurses in the nursing home, I find myself not allowing myself to enjoy myself ‘too much’ as I think about mum being away from home. I am learning to adapt to this new caregiving role, and I’m grateful that I can visit mum weekly in the nursing home. I hope that I can bring her favourite food, and I hope that whenever I visit mum at the home, she knows I have always been doing my very best to care for her.”
– Priscilla, 67, Caregiver for Mdm Lim (mother), 87, who has dementia
Silvia is an ex-teacher who gave up her career to take care of her late mother who suffered from dementia. She has recently also assumed the role of a full-time caregiver for her mother-in-law (who suffers from dementia) and husband, leaving little time for herself.
Through Montfort Care’s caregiver support group sessions where Silvia is able to share openly with fellow participants, Silvia has found it easier to cope with caregiving stresses.
“Montfort Care is always ready to listen to my troubles and frustrations
with social workers who are ready to lend a hand when needed.”
– Silvia, Caregiver with GoodLife! Bedok
“As a caregiver, it is very tough and emotionally draining to look after a dementia patient. Because of my love for my father, and also my prayer to my God to give me grace, strength, understanding, and patience to continue as a caregiver, I am able to care for him until today, even as I witness his memory loss and behaviour changes. I’ve also resigned from my job to spend quality time with him and to have time to rest. As a caregiver, we must remember to take a day out to refresh ourselves so that we have the strength to continue to take care of our loved ones.”
– Mdm Betty Kim Tan, caregiver for her father
Mdm Lee (not her real name) is a stay-alone person living with dementia. One of the challenges I faced initially was building rapport and gaining her trust. It can feel frustrating at times as she struggles to retain information given to her, and would often get upset with GoodLife! services due to episodes of confusion.
However, I see it as a privilege to be able to support her. I remember almost tearing up when she thanked me for the first time after a session, as she was mostly upset and sometimes raised her voice in previous sessions.
– Janna, Social Worker from GoodLife! Marine Parade
“Experiencing dementia caregiving through interacting with and taking care of a friend’s father who has dementia opened up my perspective about caregivers’ struggles and stresses. I hope there can be greater awareness for the community to become Dementia Friends to create a culture in which persons living with dementia and caregivers are empowered, supported, and included in society. As caregivers struggle to look for domestic helpers who are trained in dementia care, I hope that government agencies could explore including dementia care as one of the pre-requisites in their training.”
– Mazni, Senior Programme Executive from GoodLife! Bedok
“Three years ago, while I was still a newbie in the social service sector, my first case was to provide community-based support to a stay-alone senior who was diagnosed with dementia. Mdm H spent most of her time at home looking out of the window or laying in bed waiting for time to pass. It took me six months of standing on the ground floor looking up to her 2nd floor window and saying hi to her, before she finally opened her front door to welcome me. The conversations from outside her door initially lasted for 2 minutes, and eventually went on for 15 minutes.
Just before the onset of COVID-19, Mdm H unexpectedly agreed to attend day care. It was a huge leap forward, from an isolated senior who initially did not want to talk to anyone. The initial transition was not smooth sailing, involving every community partner in the case. However, Mdm H slowly developed a good appetite and started attending day care more often.
One day, Mdm H’s daughter called me and was in tears. Mdm H told her daughter: “This is a nice place; can I stay here?” This was the first time her daughter received acknowledgement and assurance from her mother that she was doing the right thing.
As I pen down this experience, Mdm H had been admitted to a nursing home and adjusting really well in the structured environment. She is not rejecting it nor causing any trouble in the nursing home. I spoke to Mdm H’s daughter today, she told me a huge load had finally lifted of her shoulder. She is finally assured that her mother is well taken care of.”
– Gary Mok, Senior Case Worker from GoodLife! Kreta Ayer
“When a caregiver shared the difficulties and pressure he has to face while caring for his wife, my heart was moved. Despite all his additional responsibilities, he tells me that it is now his turn to repay his loved one for all the care and support she had shown him in all their years of marriage.”
– Anonymous
“As a caregiver, I found it most difficult to seek help, as doing so made me feel inept and more importantly, unfilial. I would often berate myself. How could I put myself first when my father had done nothing but shower me with love and support from childhood through to adulthood? This guilt is something that I’m still trying to reconcile with and learning not be crippled by.”
– Caregiver (Anonymous)
A caregiver’s reflection on the difficulties of taking care of her husband.
30/09/2018
“Frightened; Distress; How to deal with William’s Sickness; Dementia”
Drawing of Burning Sun reflects caregiver’s burnout; “No tears to cry but must be brave.”
Drawing of 7 Star-Shape reflects the “power to overcome any obstacles in one’s way with the help, support from Angels.”
24/05/22
My husband [was] diagnosed with dementia in 2017. Walking [is] unsteady. [He’s] getting more forgetful, [and saying the] wrong words. [He] has trouble finding the right words to say. [Becoming] frustrated. So, [we] use sign language to point at things, and he will nod his head to agree. So, I must know his habit, likes, and guess what he wants.
[It] is difficult to get help on your own. I try [to] approach some agencies providing information and services on dementia. But some need doctor’s referral letter. One [told me that the dementia] must [be] severe [before they] accept. [Another told me to] call [myself] when ask for help to contact Silver Support. I feel helpless, anxious, bitter, [with] no hope.
So, a doctor’s referral letter, help from community nurses, social worker, and silver Ambassadors will help to solve some problems and get needed help.
– Alice, Caregiver
“Whenever I spoke with her, it felt like I was catching glimpses of who she used to be in different times of her life. She could be a high school girl in a minute, and a hardworking mother in the next. My 80-year-old client with dementia reminds me that she is more than who I see in front of me, and I hope to continue embracing the ups and downs in our journey together.”
– Jessica, Social Worker from Kreta Ayer Family Services
“I used to feel lousy when my husband who has dementia makes nasty remarks at me or turn violent toward me, but I have learnt to cope as I become more aware about dementia. I have also learnt to explore different practical ways to manage his behaviour. Humour is also my way of coping with the stress and I allocate time daily to do things that I like.”
– Mdm Chang, Client of GoodLife! Telok Blangah
“我已经照顾我先生四年多了，这期间是挺辛苦的。虽然他改变了很多，也开始渐渐地认不出亲密的朋友和家人，我仍然希望能够好好地照顾他，陪他走完人生最后一段旅程。”
(“I have been taking care of my husband for four years and it has been rather tough. Although he has changed a lot and has slowly started to forget friends and loved ones, it is my hope that I will be able to take good care of him, and accompany him as he walks through the final journey of life.”)
– Caregiver (Anonymous)
“我今年70岁。不知不觉看护亲人已3年了，最近她好像记忆越来越差，我只要和她在一起，她什么事都要问，和她解释她又听不懂，好不容易让她明白了，她又反驳我，说我不会讲，真的很烦 。 明知这也不是她想要的，真的搞到我很累，情绪低落。”
(I am 70 years old. Unknowingly, I have already been taking care of my loved one for 3 years. Recently, her memory seems to be getting worse. She would keep asking questions but refuse to accept my explanations. Even after understanding, she would incite arguments and blame it on my inability to explain things. This really irks me. Knowing that this was not what she wanted makes me very tired and depressed.)
– Caregiver (Anonymous)
“The persons living with dementia are unique individuals with stories and characters who yearn to live a dignified life. It is essential for the family, caregivers, and social service practitioners to locate and open the ‘doors’ for connection and journey with them through recognition, respect, and trust.”
– Anonymous
“As an intern back in 2018, I co-managed a client diagnosed with dementia. The client was an active participant in our groupwork sessions, and I also visited his home a couple of times. On one occasion while I was heading home, I saw him at the market near my office and cheerfully waved at him. While he did not recognize me, he happily offered to buy me ice cream.”
– Damien, Social Worker from Marine Parade Family Service Centre
“My role as a social worker reminds me keenly of how it can be difficult for both persons with dementia and their loved ones to adjust to their roles of now receiving and giving care, and that we should seek to support them in this process in a manner that empowers and maintains their dignity.”
– Social Worker (Anonymous)
“以前一句话可以重复说不停，但现在老爸不喜欢开口。这才让我领悟到，可以交流的时候，多跟他交谈。这几年的陪伴和照顾爸爸，也会有辛酸流泪的时候，但他到目前为止，没有给我麻烦。比起其他看护者，我算是小巫见大巫，很幸运了。也许是我抱着感恩心才能走到今天。”
(“My father used to be able to repeat a sentence over and over again, but now he doesn’t like to speak. That’s when I realized that while we are still able to communicate with him, we should talk to him more. Accompanying and caring for my father over the past few years have brought about bitter tears, but he has yet to trouble me thus far. Compared to other caregivers, I’m very lucky. Maybe it’s my gratitude that got me where I am today.”)
– Ms Soh, Client of GoodLife! Telok Blangah
“When seemingly irrational behaviour is exhibited by a person living with dementia, it is likely that beneath that veneer of fear and baseless actions lies an underlying need. What we – as people with the ability to perceive what they cannot – need to do, is find out this underlying need. Though it is hardly straightforward nor easy to find, it is crucial in identifying the core of their issue, opening avenues to help them with empathy.”
– Lin Aiting, Director of GoodLife! Marine Parade
“My husband had been diagnosed with mild dementia in early 2020. It really pains my heart when I see my husband, who had always been a capable gentleman and retired teacher, gradually lose his mobility and memory.
As a man who took pride in his independence and values dignity, it was also difficult to get him to accept physical help at the start. Nevertheless, I was eventually able to encourage him to ease into a day care, which allowed me to cope better.
However, a year later, age caught up with me as I experienced frequent chronic pain in my knees, shoulders, back and fingers. I was not able to cope with housework on top of caring for my husband, whose functions declined further with frequent urine overflows on the bed. The frequent cleaning stressed me out and disrupted my sleep, and I knew I needed to seek further help. Thankfully, I signed myself up for three caregiver support groups to support my husband’s care, and also signed myself up for three caregiver support groups organised by GoodLife!, to learn more about how to manage my husband’s dementia care needs, and also my own stress levels. I also make it a priority to go for daily morning exercises, to take care of my own health, in order to be able to support my husband for the longer haul. While the caregiving journey ahead remains uncertain for me as his dementia progresses, I choose to take things a step at a time, and appreciate that God has given us this life to make every moment count.”
– Dorothy, 76, Caregiver for Mr Kang (husband), 83, who has dementia
“I first knew I desperately needed help when mum’s dementia behaviour escalated to her frequently threatening to end her life when her wants were not met back in 2020.
The process of seeking help was not easy, but I did not give up, and learnt to have patience to keep reaching out. Initially, I tried to enrol mum in Dementia Day Care. It was a good respite for me in the day as I could take time to run errands, attend to work, and volunteer for food distribution – doing little tasks that I enjoy. However, mum eventually started to reject Day Care, complaining about it being “too cold”.
A year after enrolling into Day Care, mum experienced vertigo which caused her temper tantrums to worsen to the point that the Day Care could not manage her at the centre; I had no choice but to bring her back home, and care for her 24/7 on my own.
I felt immense pressure as I had to constantly watch over mum, who also has Parkinson’s disease, as I was afraid of her falling. Mum would also frequently call for me to attend to her needs and would get agitated when I could not respond to her as quickly as she wanted. While I coped by talking to friends, seeking professional help, and slowly learnt to adapt to mum’s behaviours by taking her out for walks which she enjoys and distracting her, I found myself increasingly unable to make time to take care of my own needs. It got to the point that I kept missing and postponing my own medical appointments, including essential ones for my cancer, asthma, and increasingly swollen ankles from caregiving.
After years of tumultuous caregiving, I made a difficult decision to apply for a dementia nursing home for my mum. On one hand, I was worried about the toll years of caregiving had taken on my own deteriorating health. On the other hand, I was immensely afraid about mum’s health taking a toll after admitting into a nursing home.
After months of difficult deliberation and help-seeking process, mum has recently been enrolled into a nursing home. While I am relieved mum has been adapting well to the nursing home thus far, I still carry with me heavy feelings of guilt and worries about her. I can’t help but feel sad sometimes thinking about whether I could bring mum back home again. While I know mum is taken care of by professional nurses in the nursing home, I find myself not allowing myself to enjoy myself ‘too much’ as I think about mum being away from home. I am learning to adapt to this new caregiving role, and I’m grateful that I can visit mum weekly in the nursing home. I hope that I can bring her favourite food, and I hope that whenever I visit mum at the home, she knows I have always been doing my very best to care for her.”
– Priscilla, 67, Caregiver for Mdm Lim (mother), 87, who has dementia
Silvia is an ex-teacher who gave up her career to take care of her late mother who suffered from dementia. She has recently also assumed the role of a full-time caregiver for her mother-in-law (who suffers from dementia) and husband, leaving little time for herself.
Through Montfort Care’s caregiver support group sessions where Silvia is able to share openly with fellow participants, Silvia has found it easier to cope with caregiving stresses.
“Montfort Care is always ready to listen to my troubles and frustrations
with social workers who are ready to lend a hand when needed.”
– Silvia, Caregiver with GoodLife! Bedok