It was first proposed to me by my mum’s cardiologist in August, 2021. He suggested that I contact UMSC’s palliative care as he could not longer treat my mum’s heart failure, bar invasive measures, which were too dangerous at her age. She was already on prescribed medicines. I researched UMSC’s website but didn’t follow through because I didn’t like/want that option. At the same time sister number 4 spoke to me about palliative care. Nurse Aspier from whom we engaged the first caregiver, Maria, also recommended I make an appointment with Dr. Felicia of Beacon Hospital’s palliative care.
To me, palliative care was about giving up hope on your loved one, and accepting the inevitable – the end of life. I could not have been more wrong.
‘…Palliative care is a medical specialty able to help people during many different stages of health, not just during a terminal illness. Importantly, the services offered could help you or someone you love enjoy a a better quality of life, ease uncomfortable symptoms and avoid unnecessary hospitalization.[1].
While … ‘Hospice care is for patients who are not expected to survive their illness or recover from their condition and are nearing the end of their life[2].
‘People receiving palliative care can also receive other types of curative or life lengthening treatments like dialysis, chemotherapy, and radiation. Palliative care recognizes the burden and challenge of managing a chronic disease or severe illness and focuses on reducing physical and emotional suffering to improve quality of life[3].
My mum was in an indescribable place for a good two months after she became ill. Her cardiologist and respiratory specialist, helpful doctors while she was under their care, weren’t as forthcoming as they could no longer assist her. With no medical support, I went to Beacon Hospital on Oct 7, 2021. That very afternoon, Dr Felicia and Dr Ros visited my mum.
The two doctors, brother number 1, yes, he was present on the day, and I had a multi-way conversation. They asked questions. We asked questions. We described how my mum had changed after her fall on Aug 10. She didn’t eat. She didn’t sleep. She wasn’t interested in anything, not reading, not even watching her Tamil soaps, which said a lot. She stared into space much of the time. She was bloated. The medicines she was on were not helping. We also spoke about her daily schedule. Her medicines. Her bowel movements. Her shower routine. Her sleep patterns. Her repetitive dreams.
An initial diagnosis was made. The palliative route helped my mum, albeit progressively. At the very beginning, we had no clue how palliative care worked or how relevant the role of carers was in caring for our mum. We used our already drawn up to-do list or a sort of makeshift care plan to document our mum’s daily vitals including blood pressure, oxygen saturation, heart rate and temperature. And, daily medicines that we administered at set times and stipulated dosages. To that we added the new medicines prescribed by the palliative team. Even when my mum was asleep or not very interested/cooperative, the medicines were given to her no later than one to two hours from the specified time. The to-do-list/care plan was important to measure her progress, distress and to detect changes, and new symptoms that may require immediate attention.
‘Palliative care focuses on improving quality of life. There are many factors related to living with a health condition that can impact quality of life: pain, breathlessness, sleep, mental wellness, loss of ability, financial strains, family concerns and more. Palliative care focuses on reducing symptom burden and physical distress, in addition to supporting the social and emotional impacts of living with illness[4].
As the on-site carers, we were the eyes and ears of our mum and the palliative team. Our mum didn’t know what she needed to be comfortable. To not feel pain. To feel well again. As her carers, we had to be vigilant so that we could identify and explain any changes/symptoms clearly to the palliative doctors/team so that they could better understand and better diagnose our mum. Keeping track and/or making notes of what was/is happening on a daily basis in the to-do-list/care plan helped inform and align all carers. Our mum still needs 24×7 support. Her situation is currently manageable.
Now, brother number 1 has been assigned to palliative care from oncology. Like my mum, but far more critical and intense. A to-do list/care plan and diligent monitoring may help towards his daily care. That said, brother number 1 has a cohesive, loving, caring and attentive family, who is on-site at home and working together, to keep him stable and comfortable, and God willing… recover.
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