The Struggle We'll All Face March 25, 2019 00:00
I've highlighted a few individual struggles this month, but I thought it was time to explore something we will all eventually have to face.
I met Mel, a hospice nurse, and now cherished friend, a few years ago when she nursed my husband in his illness. My gratitude to her is immense.
The amount of struggling she witnesses on a daily basis is astounding, as she guides people and their loved ones through the last stages of their lives. Not only this, but her own struggle with the challenges of her work.
Most of us are terrified of death and the unknown beyond. Her words have touched me deeply and given me such comfort. I am honoured to share her story with you.
Hospice……just saying this word has people running for the hills in terror.
Hospice means one thing …Death.
In medieval times the word ‘’hospice” referred to a place of shelter & rest for the weary or ill travelers on a long journey. The word comes from the Latin “hospitium” meaning guesthouse.
The name was first applied to specialized care for dying patients by the physician Dame Cicely Saunders.
She began her work with the terminally ill in 1948 and went on to develop the first modern hospice in London called St Christopher’s Hospice.
Today there are Hospices worldwide; however the term Hospice is often associated with many misconceptions and myths.
Some of the false beliefs about Hospice in society range from:
- Hospice is there to end your life ,usually with a big injection
- Morphine and other medications used by Hospice will kill you
- As long as one avoids Hospice it means one is not dying (denial)
- Involving Hospice means you are “giving up”
- If a patient uses Hospice then the treating Doctors cannot be used
All of the above are myths & misconceptions and completely off the mark
Hospice provides Palliative care for individuals who are diagnosed with a life-threatening illness, including pain management, symptom control, psychological, spiritual and emotional counselling and extend our support to the family of our patients.
Our aim is to help patients live their lives to the fullest...yes we reaffirm life and we recognize that the patients LIVE until the day they die. Therefore Hospice aims to improve quality of life in every aspect through our holistic team approach to treatment.
We uphold the values of dignity, integrity and respect at the heart of everything we do.
I am a Home care registered nurse specialised in palliative care. I work over an allotted geographical area in Johannesburg and my primary focus is to guide & support patients and their family in their home on their unique journey of living with a life threatening illness. Take note of the use of the term “living with...”, not dying from...
I am only one part of the team approach we use at Hospice. The team includes a Medical Doctor, social worker, spiritual counsellor, pharmacist, administration officer & very valuable volunteers. The Home care nurse is the regular, primary contact with the patient and as such our role is to coordinate the care of the patient & family, as & when it is required, pulling in the resources from our team or at times beyond that for example: church leaders, psychologists etc.
Today’s modern society encourages us to live a fearless life that maximizes our pleasure. We should fight the good fight and make every effort to escape death and even defeat the very existence of it. It is very often a taboo subject and a conversation “killer”...
Try as we might the inevitability of death is inescapable.
Most patients living with a life threatening illness walk a very long, exhausting and utterly draining journey of treatments in the hope that they will reach the end of this journey cancer free/disease free. People with chronic diseases also walk a path of, very often, years of treatments in an effort to stave off the ravages of the disease and to adapt to that which they cannot change hoping for a “normal” or close to normal life.
As such many people remain in denial about the reality of their illness as they continuously strive towards health. “Stay positive!” is heard over and over again....
I am not implying the above is bad at all one absolutely has to have hope. Hope is fundamental to the human experience. Maintaining realistic hope is essential to achieving quality of life. Hope is resilient and can co-exist with suffering. The nature of hope is that it should change over time in accordance with the change in the reality of what is being physically presented and simply cannot be denied as the new reality.
When patients are able to adjust accordingly to the changes of their journey it can be, and very often is, deeply meaningful & profound to the individual and those closest to them. Aside from the physical discomfort which can be seen and attended to, adjustment to the ever-changing landscape of their life is the single biggest mental & emotional struggle. I call this space ‘no man’s land’ or just simply a ‘grey area’.
In “No Man’s Land” you are allowed to do just as you wish, there are no rules, no right or wrong, no certainties ....simply no direction. Just as if you were lost at sea. From one day to the next one never knows if you are moving forward or rolling back, giving in or fighting....the questions...endless questions.....no answers.
Nothing makes sense from moment to moment you can swing high and then suddenly without warning swing low. Dragging yourself to try find a way through the dust that you are kicking up in frustration, pain & anger. Emotions are an endless roller coaster, sometimes screeching to a halt leaving you to live in a numb existence. Exhaustion...wanting to let go ...and wanting to hang on. There are simply no answers.
“No Man’s Land” teaches us, if we will receive this lesson, that we do not have CONTROL.
Once you accept the realisation that you need to let BE (note not let go) & let your journey unfold exactly as it should BE an immense amount of suffering dissipates ... you see the perfection in the imperfection, wholeness in the brokenness.
Fighting to control is pointless. You have no control. That untethered boat out at sea, that you and your family are in....you have to ride it out...let it BE what it will BE.
The key to managing this boat ride is what you see and feel beside you, and in you, and all around you...each other.....LOVE. Love in its purest form .Love that is so exquisite that no words can describe it. Love will carry you from moment to moment and eventually breath to breath. Love points you into the moment and no further just the moment you have before you.
In my experience the ability to allow or to let things BE just as they are is the key to making space for deeply meaningful life until Life leaves you or your loved one. This space can and often is the most sacred, beautiful space where life as we know it is transcended and all that remains is love.
Family & loved ones find that allowing life to BE feels like they are not doing enough, they are not fighting enough. It makes them feel helpless, guilty beyond words and angry at the lack of control. Counselling and support from Hospice or any resource that is acceptable to the family can make a huge difference by allowing the family to understand that they have permission to stop struggling against a demon (disease) over which they simply have no control. When all of the medical treatments or non-medical treatments (or for that matter no treatments) have been exhausted its time to allow things to just BE. This is most often the greatest challenge for family & loved ones.
Family, loved ones and especially the patient mostly fear suffering & pain. The most essential & crucial support from Hospice is the constant reassurance that they will walk the journey with the patient & family and will endeavour to alleviate pain in every possible way to ensure best quality of life until the end.
The best way to support a patient is to meet the patient exactly where they choose to be. This means honouring & respecting the patient for the choices they are making, the emotions they have and the perspective they choose, regardless of what you may think or feel. It means allowing the patients journey to be the most important journey to focus on instead of your pain and your journey. It’s about allowing and accepting the way they choose to live or die. It means not imposing on patients and families your well-meaning (mostly unsolicited though) advice of which they will most likely be receiving left, right & centre. But rather offering practical help in the form of meals, lifts, shopping or quietly sitting at a bedside while the family take a break. Just BEING again, a presence, purely existing alongside the sick BEING. It’s at such a bedside where we finally learn that we have no ‘fix’ or ‘save’ to offer those who suffer deeply. And yet we have something better. Our presence. This attention invites the others soul to show up. As Mary Oliver has written:
“This is the first, the wildest & the wisest thing I know:
that the soul exists and is built entirely out of attentiveness.”
I have also found it’s crucial to keep things real if you want to be allowed into the patients’ circle of trust, pussyfooting around the reality they are facing with useless platitudes only serves to infuriate patients at the utter stupidity of such words. Keeping it real means that tears can and should be commonplace around seriously ill patients however one should hopefully be aware enough to know that the patient does not have the energy to make you feel better.
I have found that humour really does have its place at a patient’s bedside. Many a times there are the most unexpected crazy events that can occur on this journey and a hearty, deep belly, crying tears laugh can dissipate the most intense stress that a family & patient are enduring. Family tend to feel guilty if they laugh but if they see it is a shared sentiment it allows them to just enjoy the relief of the moment.
I was once caring for a large, very restless & confused patient who was not responding to sedation and insisting that although he could hardly move he wanted to wee out the window (of an apartment complex) after an hour of struggle between the patient his wife and I, his wife relented and said fine he should just do it, he could barely manage to do this but during this craziness she saw my constrained chuckle and she began guffawing whole heartedly, non-stop. To this day she mentions this incident with such fondness at what a relief it was at the reprieve of just feeling human for that short while of laughing out loud.
Many people comment that they could never do my job and they don’t know how I can do this day after day dealing with death, sadness & the stress of it all. There are a few reasons and ways that enable me to cope.
My perspective is different. I am comfortable with this work as I am comfortable with death. I am comfortable with death because I have had to face my own mortality many times in different circumstances. My own experience of living with a painful chronic disease for 21years has given me a deep understanding and insight into pain & suffering at all levels physically, emotionally & psychologically and this enables me to relate to patients very closely. It has also given me a deep appreciation of life and what it means to live.
It is a privilege to be in this position of understanding and I am able to use this to make a difference in the lives of the patients & families I work with. It is rewarding to be able to touch lives in a positive way especially in such a dark time of their lives. To be able to shine light & love where most fear to tread is incredibly special even if only for a short while.
I accept death as a normal part of the wondrous cycle of life whether it arrives sooner or later its inevitable. It is sad but it is also incredibly beautiful if you open your eyes and heart to the process and the profound love that is only ever experienced in this sacred space.
Through this work I feel I make a difference and my contribution to making the world a kinder, “softer” place brings me personal satisfaction that nothing else could match.
I cope because I have learnt to accept that which is. I don’t search for answers or ask why, I just accept it. My experiences have led me to trust that life does indeed unfold perfectly in its seeming imperfection, including my own.
This is my solace when things do not turn out the way I hoped they would.
My work reminds me every single day to live in the moment just as it presents itself, and not how I wish it would have been. It reminds me that all I ever have are the moments, moments in which to love & appreciate that which I treasure in my life, and for that I am so grateful to do the work I do.
Nurses are notorious ‘doers’, myself included and one of my most valuable lessons that I have learnt is that presence which comes with a frequency of joy, love & peace into situations of great suffering makes the difference . The human soul doesn’t want to be advised or fixed or saved. It simply wants to be witnessed- to be seen, heard and companioned exactly as it is.