An abstract based on the account of a caregiver:
Of all my favourite people in the world, my mother is the most special one. She always put others first, went above and beyond to care for them. She had so much love to give that I thought I would never be able to give it back.
8 years ago, my mother’s health unexpectedly took a bad turn. She was diagnosed with dementia. The loving independent woman I once knew and adored slowly yet devastatingly became dependent, struggling to manage simple tasks. The day she forgot my name for the first time, I cried. I have yet to grasp the fact that this will dictate my future.
Indeed, there are violent outbursts that are not easy to deal with and witness. The repetitive questions gets too infuriating to answer. There were multiple times I wanted to yell back or respond irritably. I am most definitely guilty of it.
One minute I was her daughter, and the next I was nothing but a stranger. One minute, I could be laughing with her hysterically, and the next we could be trying to calm her down because she does not remember who I am and starts pushing me away. It is akin to walking on eggshells at home. And then it hit me: I just had to be flexible and “go with the flow”.
The body gets exhausted from running around all day, helping my mother do all the things that she can no longer do on her own, i.e. bathe, go to the bathroom, changing of clothes, etc. The mind gets tired from dealing with medical appointments, bills, phone calls, etc. Emotions get drained from doting her so much but hating this disease that is essentially taking her away from me.
The list is not exhaustive, ruminates in our minds, and culminates in sleepless nights. It is an unavoidable process that will hopefully result in a more resilient psyche.
While I have been busy with bringing my mother to for doctor’s appointment, medication management, managing her activities of daily living at home, my peers have continued with their life plans. Couples have bought homes and had children, relatives have moved abroad to live out their golden years, school mates have become successful businessmen and women, doctors, and engineers. I feel like the world has been moving at accelerated speed while I stand still, clueless about what the future holds.
And, although my life didn’t proceed in the way I thought it would, I can still make a difference, and the first and most important difference of these being the decision to be her full-time carer at home. On better days, she knew exactly who she was and those were one of the greatest moments of my life. Even if the next day she forgets, in the moment she knows. She knows with all heart. She comes to life and I get to see the woman I have known and loved all my life and that’s what really matters.
Apart from dementia, my mother’s health has not been the most optimal. On non-pandemic days, I was with my mother in her hospital room day and night. On pandemic days, I was told “strictly no visitors”. My anxiety escalated. A mother or father accompanying a hospitalised child is not simply a visitor, they are parents. In the same vein, hospitalised adults need their caregivers, they aren’t just visitors.
Of course, assessed based on the acuity of clinical issues, I was especially thankful to have come across Ninkatec from word of mouth recommendation. My mother was able to be cared for at home for almost a week before she fully recovered from a mild infection alongside daily visits by the team of clinicians. Despite not being able to have her around in day-care centres for engagement activities this pandemic period, we have had experienced nurses coming in for a few hours daily to keep her engaged.
In the early years, I spent time searching for resources to help support my caregiving journey only to be disappointed by how little information is available to and geared toward caregivers.
Patience – Refrain from using an irritable tone when responding to a question you have probably answered a thousand times before. Logical reasoning, ability to make judgement and decisions have vanished completely so don’t get upset at them. Concentrate on their actions and feelings, not the facts.
Self-care - Don’t forget to love yourself as well. Recognise your physical and mental limitations. Take all the time-space and time you need to unleash your feelings. Reach out to your family, friends, support groups, You are doing the best that you can, and that is more than enough. Remember that.
Observe – Study and analyse her “usual patterns”. Learn what she perceives as reality, and what makes her angry or upset. With that, I could try to contain the next flare, or at the very least, get prepared for when her mood changes abruptly again.
Forgive – Forgive her for things she says or does, as ridiculous as it might get. Forgive yourself for not being able to comprehend and appease her well enough, for you are also learning how to manage these situations.
Love – Love her, despite the times you feel like pulling your hair out. Remind yourself that your loved one feels lost, confused about who they are as an individual. Remember that having this illness is not her fault and she is hurting too, perhaps even much more. Do not let this diagnosis overshadow who they really are. For me, I know my mother still remains as the same woman who will lay down her life for me.
Dementia is a confusing disease, not only for the people who suffer from it but for their loved ones and caregivers affected by it. No one likes to ponder over what happens when life does not turn out accordingly as planned, or inevitably, reaches an expiration. While I wish my family didn’t have to watch my mother succumb to this cognitive disease, I understand now that everyone’s story in life plays out a little differently. To be present, every day, be the strength and voice of those who can no longer speak or fight for themselves – these are my callings and I shall pursue them for as long as I am allowed.
She has cared for me all my life, it is now my turn to care.
While we care for our loved ones, it is also important not to overwork and to prepare ourselves better for the caregiving road ahead. As a caregiver, it’s important to realise that you are not alone. There is always help available – help and support are never more than a phone call away, Ninkatec care plans are here, right at home.