A complexity of emotions

Kanchana Davey, a carer to Madam Letchimy (78) shares her multiple ‘roles’ as ‘older sister’ as well as daughter.

My name is Kanchana Davey. I am my mother’s carer.  Mom thinks I am her ‘older sister’, but every now and then she remembers me as her daughter, though this only lasts for brief periods.

Four years ago, mom was showing symptoms of dementia. Quite unexpectedly, we all became her carers.  This was a new experience for us. Caregiving for a person with dementia was (and is) totally different from everything else. It is both confusing and frustrating. Furthermore, as carers, we have no outlet for expressing our own concerns or emotions. Although caregiving plays an essential role in the lives of those with Alzheimer’s disease, people fail to see that Alzheimer’s disease and caregiving go together, hand in hand.

Now I am my mom’s sole carer. This is a complex task; one that is often underplayed. It is physically and mentally stressful, due to the complexity of emotions  (including resentment), the anticipated loss of a loved one, and the loss of income. It also involves loss of free time, and neglect of friends and hobbies. This often manifests as social isolation, with a consequent decrease in the quality of life. We, the carers, also age alongside the person with dementia.

Furthermore, the caregiving journey experienced by a family member significantly differs from that of externally hired carers. As family members, we are emotionally involved. For example, every day I go  through the five stages of grief: ANGER – DENIAL

– BARGAINING – DEPRESSION – ACCEPTANCE.

When I go to bed at night, I have to accept the fact I  can’t change what is happening – all I can do is come up with ways of dealing with it. For example, being familiar with carer tactics means I can learn how to manage things better. My mom is in the stage of the disease where she cannot function without me. I am at the stage in life where caregiving is a 24/7 job.

One can imagine the frustration of caregiving when I  can’t even have 10 minutes to myself. This is where  Alzheimer’s Disease Foundation Malaysia (ADFM) daycare centre comes in handy. It’s a lifesaver. I was on the verge of breakdown – feeling so lost and lonely. But now, two or three times a week, I get some time to refresh, regenerate and recharge. With ADFM’s daycare support, I am able to attend to my personal and marriage issues and I have more time and energy to plan my daily activities with mom. I am no longer angry or impatient. ADFM Daycare works wonders with mom too. She is happier and more active, compared with our mundane life at home.

As carers, we need support that goes beyond what has been provided by doctors, or hospitals. My wish for the future is for the government to allocate more funding –  not only for research but also for the wellbeing of carers and for setting up more affordable daycare centres. Such assistance will help relieve the burden on carers and ease the journey of caregiving.

Thank you.