This story is about Masturah, a single daughter, in Singapore, who quits her fulltime job to provide care for her mother with deteriorating physical health and also dementia. The role of the caregiving is often unseen and unaccounted for.
Caregiving can be a very lonely journey and is an assumed role that is undisputedly taken by the daughters in the household. The story details how the strain of caregiving eventually affects Masturah’s mental health with her presenting with mental strain and helplessness. Trainings and support services available may not reach out to all, especially in the Muslim community where caregiving is seen as a blessing and not a role that is taken on.The caregiver may not seek help and external care services may be shunned due to the belief that caregiving is a ‘family matter.’ The strain and loneliness of caregiving might lead to deterioration in the caregiver’s mental and emotional state. May we learn to take better care of each other and especially ourselves. May we show love and kindness to those noble souls who care for others.
‘Siapa nak jaga mak?’
When Mak (mum) fell down again at night and had to be rushed to the hospital. I stayed overnight to take care of Mak and to make sure she was comfortable. No one asked me to. It was implied that I, as the only daughter should take care of Mak. It was common sense for anyone. It was the natural order of things for everyone else.
‘Siapa nak jaga mak?’
The doctor said Mak has dementia. Dementia? How could that be? Mak has always been a strong woman. She raised all 7 of us when Bapak (dad) passed away. She worked odd jobs cleaning people’s homes so we could get a decent level of schooling.
On top of her dementia, mak also has other conditions. She has diabetes and high blood pressure. I, too, have diabetes and high blood pressure.
‘Siapa nak jaga mak?’
Everyone who comes over to visit brings food, fruits and gives money. Everyone asks how Mak is doing. No one ever asks me how I’m doing.
I’m exhausted. I need a break. I need to be away from Mak. I want to go back to work.
I want to be with my friends at work.
I want to have my life back.
‘Siapa nak jaga mak?’
Caring for Mak is exhausting. People think caring for an old person is easy. They think most old people just sit there. They do not see the amount of time it takes to get her to bathe or to get her to eat. Taking care of my mother is more than a full-time job.
Furthermore, Mak has dementia. She forgets. She forgets whether she has eaten and accuses me of starving her. She forgets that she has bathed and tells people I do not take care of her. She forgets that she has not taken her medication and accuses me of trying to kill her faster by over-medicating her. She tells everyone who comes to visit that I do not take care of her.
Some people understand that it is the dementia, but most don’t. They go around telling stories. I know, I can see it in their eyes when they look at me. When they come over to ‘check’ on her, they make snide remarks and look at me from the corner of their eyes.
I know the look.
‘Siapa nak jaga mak?’
The people who come to check on mother tell me that I can get help to take care of her. They share the different schemes and services available for persons with dementia. They tell me about a day care centre that she can attend.
They do not understand. I do not want other people to take care of her. I need to take care of mak. I have to take care of mak.
It is my duty.
‘Siapa nak jaga mak?’
What will people say if I place mak in a day care centre?
What kind of anak perempuan (daughter) would I be if I cannot take care of my own mother; my mother who had seven children and was able to raise them single-handedly?
During a religious class I attended when I was young, I remember the ustaz saying that ‘syurga di bawah tapak kaki ibu’. It means that your mother is the key to your entrance to Jannah. Who doesn’t want to go to Jannah?
‘Siapa nak jaga mak?’
It is a role that is imposed on me.
A role that is assumed on me.
A role amongst all the other roles that are assumed and imposed on me.
‘Siapa nak jaga mak?’
At the expense of myself. At the expense of my life.
No one prepares you for caregiving. It is assumed that you would know how to care. Did your mother not care for you? Does anyone teach you how to care for an elderly?
How do I ask for help?
‘Siapa nak jaga mak?’
No one tells you this but caregiving is a lonely journey. It’s only me and Mak. Every day, all day.
I can feel myself losing it.
‘Siapa nak jaga mak?’
I need help. I’m drowning. I don’t know how to do this anymore.
I can feel myself spiralling downwards.
If I don’t seek help soon, I might hurt myself.
I might hurt Mak.
‘Siapa nak jaga mak?’
Mas dah tak boleh jaga mak lagi
Bukan Mas tak nak, Mas tak boleh lagi
Mas nak jadi gila jaga Mak.
(I can’t take care of you anymore Mak
It’s not that I don’t want to. I can’t.
I’m going crazy Mak.)
‘Siapa nak jaga mak?’
Illustration by Ishibashi Chiharu
Source: https://projectweforgot.com/caregiver/siapa-nak-jaga-mak-a-narrative-on-the-mental-health-toll-of-caregiving/