CARING IS A CALLING

Mpundu Valerie

Disclaimer: This is a true story from a carer. Names and identifying details have been withheld to respect the privacy and dignity of the patient and her family. This is personal experience and not medical advice

People think a carer looks after the patient. I learnt that sometimes the family needs your shoulder more than the patient does. I learnt this looking after a 73-year-old lady dying of pancreatic cancer, a lady who loved me so much her own family felt threatened by our bond.

The most common symptom is jaundice. She was literally yellow throughout her body. She could no longer be mobile and spent her last month in bed. Eating was also a problem.

She could only consume a tablespoon of oats porridge for breakfast, for lunch, just two teaspoons of jelly were enough and for dinner, maybe half of a soft-boiled egg. Due to the cancer, she could not consume more than that.

She persisted in using the commode for relieving herself, but it was no longer possible. She faced the risk of falling down due to lack of energy in the body, but eventually the cancer progressed, and we were now using diapers.

The first two weeks she was so verbal, but the final two weeks were so crucial. The lady was now non-verbal and so unresponsive. The only thing she could ingest was water. My colleague and I had to push for water till her final day. What I experienced as a carer, I had to balance looking after the patient and the family members. The family needed all the help they could through comfort.

Mostly, when a family member has a chronic disease like cancer, the family could need more of the shoulder of the carer than the patient. Fortunately, it was a family of believers, so I, being a believer as well, made the burden lighter.

I bonded with the patient and the family as well. We made sure she was happy, immaculate, and comfortable till her last day. She was in pain. She restricted herself from going outside because she was yellow throughout, in her eyes and every part of her body. She refused to take walks, worried about what her neighbours would say about her. In those final days, she would lose consciousness and regain it twice or thrice a day for about a week.

People ask me if the blackouts didn't scare me. I was never scared. I knew she was going, so I was patient and happy to be by her side, giving her all the assistance she needed. Nobody has to die alone. I was never scared, not one bit. I just waited for her to come back if she was, life would go on. Finally, she got to rest, and she died on my watch. I had to shroud her, and the people from the mortuary had to pick her body up.

As a carer, I noticed the family might need more of your support as a carer than the patient. We mourned with the family. They appreciated me and my colleague. We cleaned the place up, did all the laundry, and said our goodbyes.

What I learnt about pancreatic cancer:

1. The patient isolates him or herself because of their appearance.

2. The patient has difficulties eating - their tummy feels full or bloated even when they have not consumed anything.

3. The whole body turns yellow.

4. They might become easily offended due to their circumstances, so one has to be very patient and understand them, because they will know what they are going through.

5. They lose their strength.

6. The patient's bowel movements are affected as well.

7. They might experience losing consciousness, the heart stopping, and then the body reboots itself, and they come back several times before they finally rest.

So this was my experience. Nobody looked after me as a carer. I had to be the pillar of strength for both the patient and the family. One thing I want to emphasise is: Caring is a calling. If one is not called, the job can never be manageable. We continue to hope that one day there is a cure for this chronic disease.

If you have a story to share kindly reach us on 0774778179

pancreatic cancer caregiving