She sits across from me, mildly clouded eyes taking on a sudden glint of steel. There’s a slight trail of saliva trailing from the edge of her chapped lips and as I contemplated reaching forward with a tissue of my own, she roughly wiped at it with a napkin. It wasn’t fair! She always showered first thing in the morning. It’s always around 9 by the time I start showering. How am I supposed to wait that long? They never consider me, never care…
Needless to say, I found it a little difficult to empathize with Mdm Koh’s tirade that day about rigid shower schedules and monotonous meal plans. Surely it was for her wellbeing and that of the other residents. Mind you, this was the sentiment of a weekly volunteer, who turned up for 1.5h once in seven days. What more of the nurses looking after the residents, rushing on to meet a schedule that could barely be met with a dozen more irate complaints to follow?
As my undergraduate medical interviews wind to an end, I find myself looking back on the time I spent at the nursing home in relation to all I aspire to be. Gone are the days when Hippocrates extolled the need to “conceal most things from the patient while extending to him.” It is now all about the patient, the resident, the care recipient being at the heart of all we do. That made me wonder retrospectively how this was being applied to on the ground in our institutions of care, which mainly consists of nursing homes. I once asked a volunteer manager at nursing home what this meant for care on the ground and the everyday routine of those at the home. She gave me a resigned shrug and a tired smile.
“We try but it doesn’t always turn out the way we hope to.”
The unsolvable paradox of delivering timely care
Ask any healthcare professional or caregiver and the roadblocks to such individualized care become apparent in an instant. It’s a resource and manpower tight environment where there’s always somewhere else you need to be. You try coaxing the uncle at the end of the row to swallow his porridge in 30 minutes while he stares blankly at the ceiling. What’s worse is that you’re stuck in a paradox where catering to the needs of select residents mean being scolded at some time later for failing to be on time by others. At some point, it becomes difficult to see how the more efficient, regimented solution of schedules restricted options could be bad if it meant delivering all the care in a timely manner. We reside in a society which rides upon efficiency as a hallmark of success and the completion of a checklist as a means to track whether the needs of residents are being met. These requirements seem to be completely at odds with our aims to lend our nursing home residents greater autonomy. With increasingly complex home care treatments to be kept up and a greater number requiring such extensive care, our care institutions are only going to strain further under the pressure.
Holding onto dignity
When Aunty Valli grumbles about being sent to her room by 11 sharp at night before her favorite Indian drama, it’s more than a complaint about missing out on much loved entertainment. It’s driven by the nostalgia of being able to decide for oneself and to act on them. At a time when you are no longer in control of the fluids leaving your body or the tremor in your hands, these simple acts of self-determination go on to define your ability as a person. They etch onto stone the fact that you still have control over your persons and by extension the motivation to continue drawing in breath after breath. Wrestling everyone into the shower and clean robes on time can hardly be justified as a priority if it comes at the cost of the elderly feeling as if they no longer have any say over themselves or their physical bodies. If we are to support the caregivers at these institutions, it is by first accepting that strict schedules need not always be instituted. But more importantly, it’s to hear from the nurses themselves what would help them customize their care better. These are the heroes looking after the at-times difficult residents with an endless amount of patience and love, remembering things like their favorite color and food just as a son or daughter would. Letting them have a greater say in the care delivery system and granting greater legitimacy to their opinions might be the first step towards improving care.
Broadening the range of assistance and privacy in the care facilities might also help. The predominant nursing home layout is still very much an extension of hospital ward arrangements here. Two neat rows of identical bed frames and bedside cupboards to house residents no matter how long the stay. While convenient, this may not be the best arrangement of everyone needing a care facility. Few know of the assisted living homes that are already popping up around town, often manned by VWOs and ad-hoc volunteers. More cluster homes for the elderly could be introduced to lend greater agency to those who don’t need constant monitoring and assistance. Regardless of the setting though, it needs to be made clear to the nurses and caregivers that not everything has to be sacrificed in the name of expediency when looking after the elderly.
The moon, the stars and a sense of identity
“You know, it’s been many years since I last stepped into a temple. I know Lord Muruga is with me but I want to see Him again, I want to ask Him why I’m still here while my husband’s gone and children have left. Can’t I go see Him one last time?”
A second unexplored aspect of care is the spirituality of residents. Living their final few months within the four walls of such institutions, it’s unsurprising that the elderly are bound to become increasingly religious or spiritual as time passes. Yet the difficulties and constraints of communal living mean that residents like Aunty Mani are unlikely to visit religious sites in what might be their final few years. With the support of her family, Aunty Valli continues to visit the temple every once in a while but this remains a half to full day affair that requires the whole family down to transport her. This can be taxing even for the most accommodating of families. Especially towards the end of your life, you’re left with more questions than answers to accompany the solitude you are left in for the most part of the day. Spirituality then serves as a gateway to rebuilding an identity. It provides palatable answers to even the most heart breaking of dilemmas. When dementia steals so much of the thoughts in your head that you fail to recall the visit of loved ones, belief in the unknown might be your greatest consolation.
It’s thus about time that we give deeper thought and seriously consideration about how much religion might be valued by the elderly and other care recipients. It’s about making an active effort to make such avenues for expression available to them. Simply bringing it into our discussion of care plans for the residents is a step forward in the right direction.
Exiting the stage with grace
As residents in our care institutions prepare to take the final curtain call, an event that is possibly years away, it is our role as caregivers to orchestrate the best exit possible. We have always been guided by efficiency and pragmatism as apriori hallmarks of success but delivering care in our final years is a completely different ball game. Building communal homes centered around the residents involves an active rethinking of how we measure our success in serving them and changing our framework to better incorporate their wishes. There are no easy answers but with time and a willingness to change, Mdm Koh might finally feel at home away from home.
*A/N: All the names of the residents have been changed to preserve confidentiality. This will be Part 1 of a 3 part series on the healthcare landscape today that was triggered by both recent events, reads and my past experiences.