“If I speak I am condemned
If I stay silent I am damned
He gave me strength to Journey on
Who am I
WHO AM I”
You look into me. I am feeble. I am frail. I am clumsy. I am dazed. Still, as I struggle to find myself from the reflection in your dreary eyes, I feel your hands gently caress the contours of my shriveled face. I can feel your eagerness; anticipation; a straightforward childlike desire, driven by the resolve to get me to find those words you have been waiting to hear for so long.
But I am sorry, I just cannot string those words together even if they have always been there, stuck at the tip of my tongue. I ask instead,
“Can I go home?”
Given the influencing power of mainstream media and popular culture, it has been taken for granted that a person with Alzheimer’s disease will eventually be reduced to a hollow shell of his former self. The progressive deterioration in his cognitive function strips away the familiar characteristics that formed the core of his personhood, so much so you wonder if the person you once knew was simply a figment of your imagination.
Singapore’s present situation
According to official statistics, with increasing life expectancy, Person with Dementia (PWD) will number about 80,000 by 2030, far beyond the projected increase in capacity for accommodation in nursing homes and daycare centres. Be that as it is, how will this affect our lives and as students, what can we possibly do to impact the lives of PWDs? In searching for an answer, we may anchor ourselves to a social reality where the test of our national character and moral values becomes paramount in deciding the timeliness and relevance of this issue. Moving away from our national consciousness about the notion of filial piety that we are so familiar with, let us not justify the importance of this topic with the hope of exemplifying moral goodness through a collective conscience.
Reflecting Community through the Diversity of Social roles - ‘self-differentiation’
Within each neighborhood in Singapore, a sense of solidarity is fostered when we acknowledge that each of us embodies certain lived experiences that are reflected in the idiosyncrasies that have come to shape who we are as a person. While we are part of a community, each of us is also an individual with subjective interpretation of what aging in Singapore represents. Expression of such varied life experiences of PWDs are revealed through their ongoing relationships with their caregivers and family whose motivations for caring come in many dimensions. Be it a student who helps her working mum to deal with the emotional burden in caring for her grandma or a full-time caregiver who cannot bear to send his grandpa to a nursing home, both instances demonstrate how the feelings of wanting to cherish a PWD despite his or her vulnerabilities, affirms one’s identity as more than just a caregiver. Beyond the role of a caregiver, we see that each of them is simultaneously a son;a daughter; a brother; a sister etc and all these roles overlap as multiple layers to create a distinct social self that is fluid yet grounded in the present.
Why we should care
As such, the relevance of learning about dementia becomes apparent. It is a learning process that encourages us to confront the forces driving our need to differentiate ourselves from others when establishing our sense of self as we perform our social roles. Through this differentiation, we affirm and validate the values and ideals that become the foundation upon which we locate our sense of self. The caregiving relationship reflects how the sense of self of both the caregivers and the PWDs can be found rooted in their interaction with each other in their everyday lives. Together, the experiences of PWDs present a mirror into our own insecurities as we explore just what it means to lose autonomy over our bodily and cognitive functions. What happens then when one no longer differentiates between the past and the present? When the ‘me versus them’ distinction no longer becomes applicable in the construction of categories for one to make sense of the world, how do we reconstruct our sense of self? Thinking back to the times that we got lost, I believe you can empathise with how frustrating or disorientating it gets when we cannot navigate our way to a certain destination. To (re)orientate the direction we are facing requires the help of a certain signpost. Similarly, tying this into the case of PWDs, caregivers and the community, of which we are a part, will be the ones who will serve as those signposts.
The Effects of a Homogenizing Discourse
Having said that, we need to understand that the celebration of active aging is part of a discourse to promote inclusive and healthy living for the elderly and encourage them to live a dignified life. Yet inadvertently, the homogenizing effect of such a discourse serves to further the message that it is through one’s personal effort to make certain lifestyle changes that will determine one’s health outcome. The vision of a healthy elderly staying productive is endorsed as the ideal archetypal portrayal of our elderly. How far we accept this narrative and our subsequent reinterpretation of such a portrayal will shape the kind of lenses through which PWDs and their caregivers view themselves, in relation to this whole idea of ACTIVE AGING. An external reality is thereby imposed onto them that restricts the choices they make.
Not surprisingly, PWDs may become sidelined as dependent liabilities who have to rely on the care provided by community health agencies and caregivers. Therefore, Dementia – an umbrella term – takes on a life of its own as a reductive label that overshadows the agency of a PWD. Insofar as caregivers come to rationalise the infantilization of a PWD’s behaviour as an inevitable natural outcome - to cope with the latter’s mood swings, tantrums, repetitive questions and changes in personalities, they will be inclined to fall back on the past to situate the self of a PWD. As a result, a PWD becomes dependent on his caregiver to reconstruct his own present identity and will more often than not, find himself being pigeonholed and confined to how his caregiver has perceived him to be. Instead of seeking solidarity with their loved ones, PWDs’ cognitive impairment becomes a source of shame and despair which turns into disappointment and anger that is directed to both themselves and their caregivers.
Possible baby steps for us to move forward
Therefore, it becomes essential to challenge the notion that PWDs are simple passive recipients of care. With a new paradigm of thinking that has heralded a shift from hospital to community based care – one that adopts the principles of strength and resilience or Person Centred Care (PCC), can PWDs escape from their ‘social death’ in institutionalized homes? As we work towards the vision of a dementia-friendly Singapore, how can we transform the cognitive impairment of a PWD into a resource that does not turn one’s biological deficits into a disability? With more exposure to the challenges facing the dementia community, the level of interconnectedness amongst residents living in a same neighborhood suggests that social networks will become the critical mitigating factor that will contribute to the quality of care received by PWDs.
I have heard some elderly lament that the past can only be fondly reminisced and I have come to associate this saying with melancholy and regret. Perhaps what is truly expressed in those words is the fact that they would like to treasure what they have now in their lives, hopeful yet satisfied. This is especially true for some PWDs who are stuck in their memories of the past. While I envy those elderly who have stayed contented with what they have, I wonder if they still have any dreams that are yet to be realized. If so, does this imply a new set of needs in the elderly – one that is independent of the desire for normalcy, predictability and security in our living environment?
How you can help them to break out of this tension between past and present
In Denmark, there is a ‘Dementia Village’ catering solely to PWD, most of whom are elderly, where they can reside in homes from the 1950s, 1970s and 2000s. As more of such villages are built, are caregivers trapping themselves in an imaginary past together with these PWDs? From whence do they locate their self then? Will they and the PWDs end up forever stuck in a limbo grounded in an imaginary reality, where they can never recreate a purposeful self? At the end of the day, it is important that we never belittle a PWD’s agency in locating and reconstructing a meaningful self that is situated in the present given the validation from their caregivers and a supportive living environment.
We need to ask ourselves to what ends should we continue keeping up this illusory veil for PWDs by constantly harking back to their past such that they do not become synonymous with dependent liabilities in relation to the homogenising effect inherent in the discourse of active aging. Otherwise, how can we go about adopting a forward-looking mentality that empowers PWDs to reclaim their own voices? It is an ongoing journey, one that offers no one-size-fits-all solution. Only when different voices come together can we expand the choices we have in defining who we are, not just for the PWDs and their caregivers, but also for ourselves as someone who will have to deal with the unforgiving realities of society.