By Katherine T. //
At the time of writing this, my maternal grandmother Ah Ma was recently admitted to SGH due to severe dementia. Prior to that, we were hearing stories from my army of aunties and cousins on the daily challenges they faced taking care of and living with Ah Ma. The stories then gradually escalated, and were often accompanied by videos and voice recordings.
It started with typical episodes of forgetting that she had eaten and demanding another meal, being unwilling to go take a shower because she thought she has just showered, misplacing items (often valuable things like money or jewellery), to forgetting family members’ faces, mistaking family members for ill-intentioned strangers, accusing us of theft, and being suspicious of the medication that she had been taking for 20 over years. Most alarmingly, my mom once found her on the streets lost and confused with wads of cash in her hands. Till this day, we have no idea how she got there when she didn’t even have her ez-link card with her.
While my extended family has a hard time, Ah Ma really doesn’t have it easy either. She finds herself tired and cranky most of the day from all the hallucinations and mounting paranoia. Most of the dramatic episodes tend to occur in the evening as she barely sleeps through the night, which taxes her caregivers and for a while even caused rifts between family members. After one too many incidents when she was admitted at SGH, her team of doctors finally realised that Ah Ma has contracted Sundowner’s dementia, which sees symptoms tend to flare up in the evenings. Sundowners experience an aggressive kind of dementia, and a CT scan showed that Ah Ma’s brain had shrank by 37% at the time of diagnosis.
I just imagine how frightened and confused Ah Ma must be feeling, and am aghast at how this diagnosis was a result of many little things in her life. The thought of losing my faculties is frightening, but the thought of not knowing who’s with me, what they might be thinking of or are doing to me, constantly wondering what exactly am I fearing about or what am I even thinking is a heavy burden. I tried to lighten the situation with some black humor by suggesting keeping grandma somewhere without windows, but I suppose light-heartedness is somewhat lacking in my currently very stressed-out family.
All the experiences with my grandma is no news at all in our aging population. There are probably even scarier stories to be told out there by other families. As bewildering as these incidences can be sometimes, the common denominator is that caregivers and family members face an uphill challenge. And it doesn’t help when the only medical advice we often get from healthcare professionals is that pacifying and accommodating the patient is all that can be done, as there is currently no cure for dementia.
The level of awareness we have as family members has to go hand-in-hand with the care and love we have for both Ah Ma and each other. It is not uncommon for caregivers to feel guilty and ashamed when they find themselves exasperated in the process of caring for loved ones with dementia.
Adjustment from the initial shock of the diagnosis often takes quite a while for reality to set in, while they fumble with coordination of care at the same time.
What adds to the hurt most in this process is watching your love ones’ faculties fragmenting away, and dealing with the feelings of being forgotten, judged and untrusted by them. Being charged with the guilt of engaging external help isn’t a forgiving one in our conservative society either, where filial piety means hands-on caring for your parents till the end even when your resources are limited. Families may even take a hit in their pride whenever the option of a nursing home must be explored, as putting your ageing love ones in a home is still seen as a kind of abandonment. Furthermore, the cost of engaging a live-in caretaker and or sending someone to a nursing home has been skyrocketing. Sadly, it seems like eldercare has become a lucrative business in our capitalistic society.
The ultimate survival tip for my family is living in the moment and staying open-minded to all possible solutions. At this point, long-term planning is futile when the present situation is not conceivable. On the bright side, there are lots of support groups and educational resources out there available to both caregivers and people living with dementia. We may resonate with some ways of thinking, while others may take some time for us to get around to.
At the end of the day, the ones waking up and having to deal with my Ah Ma are my army of aunties and uncles and cousins. Thankfully, after much discussion and family meetings, my army of aunties have decided to hire a domestic helper to help cope with the situation. We call her ‘MeeCee’ (meaning ‘nurse’ in Hokkien), and constantly remind Ah Ma that she is here strictly on doctor’s instructions. It’s still an ongoing battle for her to accept MeeCee, but we hope that she will be able to accept her new ‘nurse’ in time to come.
Katherine holds a degree in Psychology, and has been serving in the non-profit sector since 2014. As a mental-health advocate and counselor-to-be, she’s deeply interested in exploring the full living potential of the human experience and senses, and believes that life is about embracing all it’s black, white and greys.