Editorial Write-Up

When my grandmother was diagnosed with advanced dementia, my family and I unexpectedly fell into the role of being her primary caregivers. We spent a good number of years scrambling to meet the needs of our loved one, whose illness brought about a 180-degree change in temperament. 
 
Before her dementia set in, my grandmother's demeanor was mostly gentle and calm. She enjoyed gardening, cooking, and making traditional Teochew kuehs for her children and grandchildren. 
 
When her memory began to falter, she lost all interest in what she used to love doing. Over the course of two years, her illness took over, and we witnessed the once-placid old lady become highly anxious, agitated, and angry. She was severely underweight, yet embodied the physical strength that the entire family collectively could not handle. On top of having to deal with her constant screaming and increasingly violent tendencies, as caregivers who took turns watching her round the clock, we often found ourselves exhausted, confused, and feeling helpless. 
 
In the midst of her illness, I had just embarked on my journey of learning mindfulness, and I consider our family extremely fortunate to have had the practice and skills of mindfulness at hand to support us through the seemingly endless days of caregiving.  
 
Caregiving can be an overwhelming experience, which drains us physically, mentally, and emotionally. Sometimes there seems to be no end in sight, thus leaving us feeling depressed, anxious, and hopeless. Caregiver burnout is a very real phenomenon, with our determination to persevere and devotion to care giving way to resentment, withdrawal, and even numbness and apathy. When there is no other option but to keep going, sustainability becomes the key to navigating some of the most stressful and difficult moments that may come our way. 
 
Mindfulness has indeed received much attention over the past decades, in large part due to strong research evidence on its efficacy in improving our personal effectiveness and quality of life. Mindfulness can be integrated into the caregiver's life as a proactive and preventative approach to our health and wellbeing. Research has shown that practicing mindfulness consistently and effectively improves our focus, reduces anxiety and depression, as well as hones our ability to manage stress, build resilience, and prevent burnout, so that we can not only take good care of ourselves, but also improve our quality of care for the people who need us. 
 
Caregiving is a highly emotional experience, especially when we are taking care of our loved ones. When we meet with difficult and intense emotions such as sadness, anger, or grief, and when negative thoughts hijack our mindspace, they can quickly overwhelm and even debilitate us. Having mindful awareness of what is arising within the mind helps create space between ourselves and our experience, so that we can step back and see our thoughts and emotions more clearly, understand that they do not need to consume us, and learn to work with them. 
 
The role of caregiving also encourages us to neglect our physical health and overwork our body's capabilities for the wellbeing of someone else. When we practice paying attention to our body, our attention becomes a physical barometer that offers us a better understanding of what the body is experiencing in each moment, and whether we should take rest or seek medical attention for ourselves.
 
These skills of self-awareness and self-observation are what we need to keep a gentle watch over our own mind and body, and remind ourselves to take a pause when necessary, so that we can return to a state of balance, before moving on again from a better place. 
 
Mindfulness also lays the groundwork for cultivating self-compassion, which is the willingness to turn our attention towards our own struggles and suffering, and attend to ourselves with more gentleness and kindness. Many caregivers are also living with feelings of guilt and the perception that they are never doing enough. With mindful self-compassion, we will be better able to mitigate any unnecessary thoughts of self-criticism and self-judgment, and learn to embrace our limitations and award the necessary care for ourselves.
 
One of the more surprising discoveries of mindfulness is that when practiced regularly, it not only benefits our emotional and mental health, but also our physical health as well. Studies have shown that mindfulness improves our sleep quality and strengthens our immunity, thus making us more physically resilient as caregivers. 
 
The most important insight I have gained from my ongoing mindfulness practice is that having a purely intellectual understanding of mindfulness is definitely not enough. We should see mindfulness as a set of skills that we need to develop in order to reap the benefits of this wonderful practice. It is not difficult at all to get started with mindfulness, and for a beginner, a little practice every day goes a long way. 
 
As we persist in our learning and practice of mindfulness, and as we improve our capacity to attend to the present experience, we will eventually be able to witness positive shifts in how we navigate our caregiving journey. 

They say the two occasions where one gets to meet everyone in our family network are weddings and funerals. When I was younger, it seemed like every year we will all congregate at some wedding banquet and catch up with relatives and guess who is next to walk down the aisle. Those were happy celebratory moments.

As a sign of the times, and how rapidly our generation is aging, these days I am more likely to meet relatives at a funeral wake. The topic of conversation often relates to what next for the family members and this is where it dawned on me that as much as we prepare for the welcome home of a new-born baby, we often neglect the preparation for our eventual demise.

This was particularly pertinent when the caregiver passes on before the one who is being cared for. We all assume that as caregivers we will outlive our loved us, unfortunately Life is not always so predictable and throws us curve balls.

This is not the most comforting topic to talk about, but it is a practical reality for every caregiver to plan for especially if your loved one has special needs. As I was doing my research, it became evident that death and estate planning can be a complex tedious affair if we do not prepare for it.

Supporting our loved ones financially after we are gone

Funeral wakes are busy times for the immediate family, it invokes a conundrum of emotions, stress and fatigue. I am particularly concern about the caregiver for whom the loved one is totally dependent on, what happens when the caregiver passes on? The responsibility has to shift to someone else, and in some instances to institutional care as a last resort. As uncomfortable a topic to talk about death, it is nevertheless crucial for all caregivers to make estate planning for their loved ones as the next phase of care.

There are practical steps we can take to ensure that our financial assets can be liquidated to support our loved ones after we are gone.

i.                     Every Singaporean has a sum of money in their CPF and Medisave account, this is perhaps one of the more accessible funds to disburse after our demise. The important point is to make a CPF nomination to your loved one so that these funds can be disbursed directly to the nominee.

ii.                   Make a will. Consider this the caregiver’s ‘to-do list’ for the assigned person(s) of how to carry on looking after your loved one. It is similar to how we prepare for a long journey where we leave behind instructions for someone responsible to take over.

iii.                 You are the best person to draft this list of instructions and it will also give you peace of mind that no matter what happens, or when it happens, your loved one will be well taken care of according to your care-plan. We should not assume that any family member will know what to do in your absence. I have personally witnessed family conflicts when well intentioned motives are misunderstood simply because nobody knew what exactly was needed.

iv.                 Look for resources how to do estate planning, and a good reference can be found at the government website aptly named as my legacy (www.mylegacy.life.gov.sg)

What happens next after I am gone?

I have started to ponder on this during my quiet time, for many of us who have dependents, their lives carry on, it is in our innate nature to want to ensure that our surviving family and loved ones make the transition to the next phase of their lives as stress free as possible. For them they have to face the inevitable grief that comes with the demise of their caregiver.

We can alleviate the stresses that may come later, by ensuring that we have left sufficient instructions both in legal documentation as well in personal written form so as that whoever takes over the role as the next caregiver understands our loved one’s needs as well as we did.