Even if she doesn't remember, I do. And I won't stop loving her.
Finding out granny has dementia
When I first knew that my granny had dementia, my heart did sink in quite a bit. Perhaps not fully understanding the full consequences of this condition, I didn’t know how and what that meant for me and my family, and my relations with her.
They say dementia is the long death of the soul, only made clearer to me to see someone that is physically there, but not.
It’s hard because it is a journey of continual disappointment to know that she isn’t the one person that you fell in love with when you were young.
The stigma of dementia
I think what contributes to this misunderstanding on what dementia really means for that loved one and those around her is simply the fact that people don’t talk about it.
They avoid talking about it like a plague, and just express the superficial face of profound sympathy because people don’t understand it. I don’t blame these people, because they do not understand. More needs to be shown, or done.
There was an initiative that I contributed my little voice to a year or two back, called “Before We Forget”, by Xian Jie and Jeremy, two talented and passionate youths that wanted to make difference in society. And they did, but alas, they are only one initiative amidst the many dementia sufferers in Singapore. I decided that I would be best serving myself and my fellow dementia caregivers the openness needed to cultivate discussion. Productive or not, I’m not here to judge — all we need is a simple resonant cry that we are not out there, alone in despair of our own disappointing grief.
Caring in the moment
In our every day lives, we expect a suitable outcome whenever we take an action to solve a problem. It is not the case when you care for someone with dementia. You care only for the moment.
The love you give, and still give, everyday, to that someone, is all that you will get as a reward — because you know that after a few fleeting moments, it all ends. It gives way to the stubborn self throwing a tantrum, gives way to the fear and loss in her eyes, gives way to the worry and pleas and paranoid hallucinations.
There is none of that nostalgic happiness that comes when a sweet memory is made, only the sombre reminder that she is gone, all gone. After all that you’ve given, and then some.
And it becomes a cycle. You keep giving that love, that care, that patience, till one day, you feel utterly spent.
You have nothing to hold to, not memories, no , because it becomes to painful to remember and compare what she once was to the shell of the person that she is now.
No, you don’t give for the future, because you know she’ll just get worse. The despondent stare out of the window of an empty flat… is one of the most heartwrenching moments a person like me can ever observe as a young adult — caught in the heat of his impatience to fulfil his never-ending quest to want more from his life.
This is a short exposition on what life means to us, living with a dementia patient. It is only a glimpse of what we give in our time and love everyday, to care for a person that we will cling on to desperately till the day she leaves us. And we will, hang on, and never give up.
Because we never give up in our capacity to love another person.
My bond with her runs deep, cultivated at the excitement of being able to stay over at her place during the school holidays. I enjoyed those moments, where I would just enjoy her cooking, talking and accompanying her whenever she went, and helping her out with the household chores.
But those days are over, and only memories remain. And even then, I’m not sure if she remembers.
But I do, and I don’t stop loving.
"Story was first published on Project We Forgot. His full story can be found here."
Project We Forgot is a community of support for caregivers to persons with dementia. Focusing on the pillars of awareness and advocacy of dementia among the young, the initiative aims to educate on the impact the illness has on a person with dementia and their family members. They are also focused on advocating and building a community of support for young caregivers who may be caring for a parent or a grandparent with dementia. Are you a young caregiver in need of support ? Reach out here.
Lim Mu Yao