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  • Writer's pictureBefore Beyond

Journey of a Caregiver

Updated: May 10, 2021

The author shares her journey from the day her mum was diagnosed with final stage neuroendocrine cancer to her last mum's last days.

The unexpected gift of time

The author and her sister took unpaid leave from work to care for their mum. She reflects that it was probably the best time of her life.

"How many of us have the luxury of time to spend 24 hours a day and seven days a week with our parent without ever leaving their side?"

Being diagnosed with terminal illness can be heart-breaking at first, but it also allows people to have the opportunity to give and receive things they wouldn't have been able to under normal circumstances when life is taken for granted.

"I am grateful we were gifted a few months together with her and  that I had the chance to thank her properly for everything that she had done for us."

The lingering memory of the final moments

The author also describes the immediate moments leading to her mum's death and after death. The moment of death is not often talked about but it can result in recurrent flashbacks and nightmares. If these issues lasts for more than 6 months or cause significant disruption to daily life, consider seeking help from a counsellor. The underlying causes of the recurrent flashbacks and nightmares may require professional help in order to be resolved.

"For hours, she would stare ahead at nothingness. She would react to us less and less. She stopped eating completely. And then she stopped drinking. ... The sight of her lifeless eyes staring straight ahead still haunts me today. I wish she had looked at me for one last time, instead of looking through me as she breathed her last."

Process of grieving and healing

Lastly, the process of grieving and healing from a death that occurs from terminal illness is different from a death that occurs suddenly and unexpectedly. Grieving usually starts much earlier i.e. at the point of diagnosis. The course is usually protracted as there are multiple "losses" that occur along the way: the loss of normalcy, the loss of opportunities, the loss of independence, and finally, the loss of life.

"Although the process of healing generally begins after a person's passing, mine had already started during the time we spent with her in the hospital."

Concurrently, the process of healing can happen at the same time as grieving. Healing happens when the loss is accepted (this usually takes place slowly so remember to be patient with yourself) and decisions are made in order to invoke change - these changes can be in the form of actions or thoughts.

Re-framing the narrative is a useful way to facilitate healing. For example:

Instead of "My mum was diagnosed with a terminal illness despite being young and healthy. She wouldn't be able to see me get married or get to see her grandchildren."

Try "My mum was diagnosed with a terminal illness. In our last months with her, I will do my best to make her happy by spending quality time with her, learning new things together (e.g. pottery, knitting) and learning how to cook delicious food for the family."

The situation essentially has not changed, but the focus has shifted from opportunities loss to opportunities made. Healing can be an arduous uphill climb and the distinction between the states of healing and grieving are often blurred (just like the distinction between being sick and well).

Have lots of patience and faith that good things will come (because bad things can only exist in contrast to good things, right?) and schedule regular breaks to momentarily let go of all that worries you and find peace and enjoyment in simply being alive.

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