The journey is important, not merely the destination.
Funny story (one of life’s ironical stories!). My journey with palliative care began when I was appointed CEO of Hospice Rustenburg in 2001 and continues now that I have been diagnosed with bulbar onset MND (or ALS as it is known in Europe). My symptoms began nigh on 20 months ago, but I was officially diagnosed in April 2022. I am a professional nurse, my greatest passion and where my heart lies, interspersed with a few other specialities, is and has always been for palliative care.
Unfortunately. most people associate palliative care with cancer, but as a person with MND, I too qualify for the services available through hospice. There is no greater joy nor satisfaction than journeying with a patient, family, and friends – bringing caring, empathy, compassion, and relief of distressing symptoms associated with their diagnosis. This is not necessarily just a physical care, but the approach of hospice ensures that holistic care is provided.
One of the saddest days for me came in September 2022 when, as the manager of the in-patient unit at St Luke’s Combined Hospice, due to disease progression and after 37 years and 5 months of nursing, I had to hang up my epaulets. Not a day goes by that I do not miss my patients and families and the wonderful joy, honour, and privilege of rendering palliative care. God has a remarkably interesting sense of humour. I love to talk, with anyone about anything and as much as possible! Changes in my speech and fatigue were the first indications that I had that something was amiss. Now that speech has become challenging, I find I listen more, my senses are tuned into the person I would normally have jabbered to.
Being told you have an aggressively progressing terminal illness is shattering to say the least. My initial feelings were extreme fear for what the disease holds in store, the effect this would have on my loved ones in terms of could they have inherited MND from me and the burden of care this would place on them. Even with a terminal diagnosis, one can still find useful ways to contribute to society – I agreed to become a part of a clinical research study conducted jointly by UCT and GSH. From the outset, it was a no brainer that I would opt for palliative care. Sadly, there is no treatment or cure for MND.
I was hopeful that the progress may not be rapid, but it is racing along like a train on steroids. Being able to rely on palliative care from the point of diagnosis has dramatically impacted on my coping mechanisms and has brought my family understanding of my disease, the care required and peace of mind that none of us will have to face or undergo this journey alone. Every step of the way, from doctors, prof nurses (also now friends), social workers, spiritual care workers and the extended hospice family at large, I have had a safety net available which is only a call away.
Currently I benefit from home visits but know that if my team of carers get tired and frustrated with me (or visa versa), I have the option of respite care in an in-patient unit. I would like to die at home knowing that I will be cared for and supported by my family and my care team. If this becomes too difficult for my family, I know that I can be admitted to the in-patient unit for terminal care. There is no end to their caring. I am grateful from the outset of my illness that I have peace of mind that hospice and all of its services has my back and will embrace my family.
An important aspect of palliative care for my condition revolves around emotional care – not just for me, but also for my loved ones and close friends. I have the advantage of a great team assisting with my Advanced Directive and a Quality of Life Care Plan which has helped all of us to make some order out of the chaos of the disease and bought us great peace of mind. Through these processes I have been able to express my wishes, desires and directives regarding my life and my future. They help me in settling my mind to an extent. They also go towards helping my family emotionally, now and in the future. Instead of each family member grappling with my condition in their own individual way, they now can come together and deal with my future around my wishes. It is my hope that this will help remove divisions that may occur and remove some of the emotional trauma for them as this dreadful disease progresses. These are powerful Palliative Care tools.
One of my life’s mottos has been “to live my life – not to merely exist.” MND continuously throws up very large hurdles that challenges my ability to cope with normal daily living activities and live a quality life. The darkness of my future sometimes weighs heavily on me. I wish to therefore acknowledge and appreciate all those that are assisting and supporting me through this journey.
Such is Palliative Care.