Ring around the rosies

Pocket full of posies

Ashes, ashes

We all fell down

“Ring around the rosies” is a popular nursery rhyme. Ironically, this light-hearted tune is associated with the Great Plague and cremation. This reminds me of my late aunt Rosy, a passionate lady whose favourite colour was red and was so named by her teacher because of her rosy cheeks and gregarious personality. She left us on 17 September 2014.

Aunt Rosy was single, so being her favourite niece, I was naturally the “first in line” to see to her needs. Our story is not one of triumph nor defeat but a sharing of what we can do for the sick and elderly loved ones.

A short but intense battle

Aunt Rosy was diagnosed with final stage pancreatic cancer in May 2014. We were caught by surprise as there were no signs prior to this brutal diagnosis of a silent killer. Between May to September 2014, aunt Rosy’s condition deteriorated drastically but we thank God for making it a swift battle.

Self-adjustments of a caregiver

She vomited numerous times every day and grew increasingly short-tempered. She fired the private nurse we hired for her. At times, I struggled with her emotional outbursts as it seemed unreasonable but I was prepared as I read that cancer patients are especially hot-tempered when undergoing treatment.

We should adopt a humble attitude and understand that the frustrations and rejections we face as caregivers are secondary to the sufferings of the one being cared for. In her final week, she lost her strength to walk to sit up, to bathe, to eat, to speak and finally lost her consciousness. It was also this week that our helper ran away from home as she found this caregiving duty demanding.

Indeed, caregiving is fueled by love, which is more sustaining than a paid caregiver. It then fell upon me and another aunt to look after her fully. I found myself bathing the very aunt who once took me out when I was a young girl. I also found myself cleaning a motionless body with the wet wipes that I use for my two-year old son. I never knew how difficult it was to clean up and put on the diapers for an adult as I thought I was already proficient in doing it for my son.

Engage in the end-of-days dialogues

Having done some studies on advance care planning, I understood how important it is to allow the sick and the dying to share their concerns and wishes with us.

As compared to my previous attitude of brushing aside my grandma’s instructions about her funeral and care plans (because I did not want her to have negative thoughts about dying), this time around I embraced end-of-days conversations with Aunty Rosy and encouraged her to instruct me on what to do when the time comes. My late grandma did not have assurances from me that I will do as she instructed because I always responded with “please don’t talk about such things, I don’t want you to keep thinking that you are going to die anytime soon.”

Do your best to fulfill the wishes of the sick and dying even if it means heavy personal sacrifices

Aunt Rosy told me that she wanted to stay at home as much as possible, so we avoided sending her to a hospice despite urgings from some relatives. We held family discussions on scheduling time to look after her, as she was increasingly agitated.

We also discussed about sharing the $7000 monthly cost of hiring a private nurse. This seems unrealistic but I know how important it is to give my aunt the environment she wanted because she was an individual who highly valued cleanliness. I was prepared to empty my savings even if this costly arrangement drags on for a year. After all, our lives and resources are not only for ourselves but also for those whom we claimed to love. Advance care planning requires the caregiver to act based on principles (e.g. Cleanliness) that are valued by the sick as not all details are always clearly expressed by them.

Aunt Rosy also told me that she wanted to listen to the hymn Amazing Grace when she was in pain, so we played the tune repeatedly while staying up for the last vigil. She also instructed me that she wanted a sea burial and she was assured that everything will turn out the way she wanted it to be even when she is semi-conscious or unconscious. Such dialogues and assurances are important to your loved ones if you would like them to “leave in peace”. Please do not shun away from such conversations because of the taboo placed on death and dying topics. Contrary to what you may consider as “unfilial”, a truly filial child will see to these matters and offer assurances while the sick is still alive.

The “last vigil”

The toughest part of this journey was on the final day and night of 16 September 2014. I could still vividly visualise the darkening of my aunt’s feet and fingers as her peripheral body parts and organs shut down. These darkened patches on her body indicated to me that she was already in the irreversible process of dying and it was only a matter of hours before she totally left me.

The palliative care team (a doctor and a nurse) visited my aunt and gave us morphine and sedatives to inject. The closest interval that we could administer these drugs was every two hours. Despite giving my aunt the morphine in the highest dosage allowed by the doctor, my aunt was still in agony. I could hear her groaned with pain even though I was in a room upstairs. My brothers stayed with her that night and took turns to administer the morphine. I was supposed to look after my two year old in another room, but I could not sleep and checked on her periodically. At 11.30pm, we ran out of morphine. I called Dover Hospice for more morphine and my dad went down to collect it.

At 8am, I was still awake and was very disturbed by her groans because the pain must have been so unbearable that  my aunt still groaned despite slipping into semi-consciousness (she could no longer open her eyes). I called Dover Hospice out of desperation again as the morphine did not seem to work. This time, they told us to administer the sedatives. Soon after, my aunt stopped groaning and appeared calmer. Her heart was still beating. I thought that she could finally have some sleep after a night of hellish sufferings. I left the room as visitors came.

At 10am, an aunt visited aunt Rosy and checked her blood pressure. It was flat. She checked again and it was really flat. My aunt Rosy left us in peace, under the effects of the sedative.

After an hour of grieving, I took on the lead role in making the funeral arrangements. It was a quick change-over from the grieving to a clear-headed organiser but I was able to do so because this time, I was the one who was assured that my aunt was no longer suffering and I will see her again in heaven as we are both believers in the faith.

We moved on by God’s grace. Amen.

– Stephanie, early 30s, Founder of a transporting company for wheelchair users