LOVING GRANDMA THROUGH DEMENTIA
World Alzheimer’s Day in September reminds us about the struggles faced by families living with the disease. EL Ng, a ballet teacher and yoga practitioner who currently lives with her parents and 91-year-old grandmother in their family home, shares how practicing satya helped her to cope with the challenges of her grandma’s personality and behavioural changes
Looking after my grandma can be exhausting. She’ll demand to be moved from her bedroom to the kitchen… then five minutes later, she decides she doesn’t feel like eating, and wants to go back to her bedroom. Then she wants to go back to the kitchen again. This can happen umpteen times in an hour.
I don’t remember exactly when it started because at the beginning, we put Grandma’s increasing forgetfulness down to “old age”. It started gradually: the inability to recall people’s names, forgetting grocery items, or misplacing her spectacles.
Then one day, she said, “I wonder if Swee Eng is has been discharged from hospital. It’s been so long since I last saw her, let’s visit her, okay?”
Alarms bells started going off in my head… Grandma was referring to a sick friend who had passed away some time ago. She’d even attended her wake. I asked, “Ah Ma, you don’t remember her funeral?”
“Oh, yes. I remember now. I am a muddle-head. Old people are like this”, Grandma replied, tapping her temple with her finger.
By and by, more gaps started to appear in Grandma’s memory. I took her for medical tests and was not prepared for the doctor’s diagnosis. “Your grandmother has Alzheimer’s disease,” he said.
Over the years, as the condition has taken hold, my bright and jovial grandmother’s personality has changed. She’s now like a child, totally self-centred, and at her caregiver’s mercy.
She also easily becomes irritable, suspicious or fearful, and is constantly “on guard”. She can be happy and friendly, then suddenly launch into a tongue lashing at the very next minute. It’s been very difficult coming to terms with this total change in my grandma.
How could this once-upon-a-time sweet, loving woman who helped raised me, turn into an entirely different person right before my eyes?
Grandma remains devoted to her great-grandson and looks forward to his return from school every day. If she thinks that he’s being mistreated, she can get nasty. “It’s three o’clock. Have you given lunch to Ben?” she’ll ask our domestic helper. When we point out that lunchtime is already over, she scolds, “You haven’t given Ben lunch? How can you ill-treat a child like this!”
The fact is: Grandma is totally disoriented. She has lost the ability to comprehend when and where things are, what to do, and when.
It’s heart-breaking. Especially when I remember how she used to be. Grandma used to be so good at counting money and could remember to the cent how much she had in her pouch. It had a string attached that she would tie in a certain way. She still keeps that pouch, but now she can no longer count. Even worse, she misplaces the pouch frequently and says “someone” has stolen it. We search the house each time, and find she’s tucked it away into random drawers.
Grandma also has trouble communicating. She keeps using “hello” in her sentences, saying things like, “Hello, hello, you eat already? Hello.” It’s become the word she uses for all the other words she’s forgotten.
COMING TO TERMS
I was blindsided and found the change in Grandma jarring. So in the beginning, I struggled to accept her behavioural changes. I detested the disease for turning my beloved Grandma into this person that I no longer wanted to be around. Every time she passed unpleasant comments, I wanted to shout at her. I wanted to tell her that she was a really mean person and the only reason why I didn’t talk back, was because she was my senior. I wanted to tell her how I hated feeling like I had to walk on eggshells around her, listening to her spout rude comments – only to forget an hour later that she’d ever mouthed those hurtful words.
But it was also precisely this – the knowledge that this was not my Grandma, but the disease manifesting, that made me hold my tongue.
Nonetheless, I started to withdraw from my grandma, and I felt very guilty about it. I didn’t fully grasp what it meant to have Alzheimer’s, even though the doctor had pre-empted my family on what to expect and encouraged us to read up more.
While teaching dance was my job, dancing was also my therapy. And whenever I felt frustrated and upset, I turned back to the mat to find calm and ground myself. It was often in those moments that I found clarity.
The yogic concept of satya, or ‘benevolent truthfulness’, means being honest with oneself, and with others. I realised that I had to acknowledge my difficult feelings and address what was really happening, in order to process them and move on.
I decided to speak to my parents about my emotional pain – I missed the sweet and loving Grandma that I grew up with. It’s incredible how, simply bringing such feelings into the open, releases us from their grip.
Through our talks, I learned that it was ok to feel scared, angry, frustrated, and sad.
Being a caregiver is stressful. People tend to focus on how the patient’s life changes, but forget how life-changing it gets for families as well. Grandma is now our priority. Her needs come first before our own. Before we go anywhere, we first have to think about how Grandma will be affected and how she’ll be taken care of. Even something that seems as simple as going out for a meal takes planning – getting ready to go out as a family now takes at least an hour because we’ve to pack Grandma’s toiletries, help her to get ready, and assist her in the toilet before we can head out.
While Grandma is still able to walk, I’ve noticed her starting to have difficulty figuring out how to walk up and down the stairs. Getting in and out of the car has almost become impossible for her. It seems she can’t figure out which leg needs to go where. Grandma has also picked up a very distracting tick: clapping her hands to a rhythm only she knows in her head. Often times, she says, ‘Hello, hello, hello,’ while clapping to that secret rhythm.
THE PRACTICE OF SATYA BEGINS FROM WITHIN
Sometimes I bury my face into the pillow and yell my lungs out when my patience wears thin. I would give anything to have my old Grandma back. I still get angry, but I know now that anger often conceals feelings that we may find hard to face.
Dealing with anger in the spirit of satya, requires us to be vulnerable by being truthful about how we really feel. So rather than give in to the impulses brought forth by anger, I’ve learned to spend time sitting with the pain and fear that lies beneath that mask. It isn’t easy, but struggling with our emotions is part of being human.
A little compassion and understanding towards those with Alzheimer’s can go a long way. I’ve heard people gossiping about elderly neighbours behaving in an unacceptable way. I want to say, ‘It’s not their character to behave in this manner, it’s their medical condition. They are trapped by it, and at the weakest point in their life.’
An elderly person suffering from dementia may blissfully believe that they are in their youth, surrounded by childhood friends and family. But is there any point in reminding them that they are actually old and “losing their marbles”, or living in a nursing home? Just because something is true, doesn’t mean that it’s appropriate to stick the harsh facts of reality into their face. Asking ourselves, ‘Is it more important to be kind or to be right?’ is a good litmus test for when to speak out – and when to practice benevolent honesty by remaining silent.
WHERE TO GET HELP
– Visit the Health Promotion Board website, www.hbp.gov.sg, or dial the toll-free Dementia InfoLine: 1800 223 1123. It operates in all four national languages.
– If you need financial assistance or subsidies to care for a loved one with dementia, find out more at www.moh.gov.sg.
– The Alzheimer’s Disease Association helpline gives tips on caring for a person with dementia, as well as runs counselling services, support groups and caregiver training programmes, in all four national languages. Call 6377 0700 from Mondays to Fridays, 9am to 6pm.