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As I see the first daffodils bravely open – shades of yellow brightness defying the relentless grey of winter – I am reminded of the deep sense of privilege I feel working as a health care assistant with Marie Curie. Throughout these last few weeks however, many of us have been feeling distraught and helpless wondering just what we can do to help the people of Ukraine in the light of the unfolding brutality and devastation being inflicted upon them. 

Being so far away we find ourselves limited, not only politically but also geographically. I am sure we will all do what we can to play our part to support these brave people and their country. 

As many of you will be aware, March is the month of The Great Daffodil Appeal which is the main fundraising event for Marie Curie. With consideration to the evolving crisis in Ukraine, the charity is currently adapting its campaign while acknowledging the necessity of continuing to support patients living with terminal illness, as well as their families. 

Our work must continue at this troubled time just as it has continued throughout the pandemic. As Marie Curie nurses in Dumfries and Galloway, we delivered care in patients’ homes while adhering to strict regimes of infection control. Although kitted out in masks, visors, plastic aprons and gloves, we were fully aware that we were putting ourselves at risk on every shift. With most cottage hospitals closing their doors, any respite care for our poorly patients became almost impossible and with only eight palliative care beds in the Alexandria Unit in the Infirmary, Marie Curie services for home nursing were in high demand. 

More than half of our services are paid for by fundraising, so the success of this year’s Great Daffodil Appeal is essential. It will be unusual to walk down any main street in Scotland or around the UK throughout March without encountering a volunteer clutching (but not shaking!) their yellow collection and tray of daffodils. Pop a pound coin in their tin if you have one handy! 

In our role as Marie Curie nurses in this area, we provide day and overnight support for patients living with terminal illness in their own homes. The one thing our patients have in common is that they don’t have a lot of time.

We feel privileged to be able to share some of that time with them. It is commonly thought that our main focus is the fact that our patients are dying. Although in reality this is true, as Marie Curie nurses we concentrate our care around embracing the fact that they are living and doing what we can to make sure their ‘living’ is pain free and worry free.  Their time may be limited but every day is valuable. It is important that we remember that although these peoples’ care may be palliative, we try not to allow their illness to define them totally.

During my shift there are no designated tea breaks, no ward routine, no clock watching . . . The whole of the 9 hours we spend with them belongs to our patient and their family. I think we would all agree that the most difficult part of the job is trying to stay awake if our patient is settled, especially if it is our first night on!

Each new shift, each new patient, brings us a new challenge.

When we arrive at the patient’s home, we arrive slap bang in the centre of their world. And there lies the difference. Through a planned service, we are invited into this world and without exception the families make us feel very welcome.

Perhaps this is why, in my experience, most of the patients I have worked with are relaxed, at ease and at peace with themselves, or with their dogs, cats, photos, books, and the familiar paraphernalia of their lives all around them. All this helps to provide a visual tapestry of their world.

When we arrive at 10pm, our first priority is of course the patient, and usually that will involve spending a little time talking with them if they are able, making sure we are fully aware of their wishes on how they would like to be cared for throughout the night. Any necessary basic nursing care is carried out with the patient’s permission before we try to help them settle. 

The family who are caring for their relative can raise their own concerns. Sometimes they are coming to realise that providing such care is much more challenging than they expected when they started. We listen, try to reassure and offer as much support as we can.

Hopefully they can then go off to bed, and sleep knowing we are there to provide all necessary care. We assure them that we will contact them if there are any significant changes in condition.

It never ceases to amaze me how families do cope in providing such dedicated loving care for their family member as they approach the last weeks or days of their life. From our point of view, the shifts can be challenging, they can be quite peaceful, sometimes heart-breaking, and not uncommonly, happy and uplifting. 

Every night is different. Sometimes we do see the same patient over several visits and in these situations, it is difficult not to become involved and saddened, especially for the family when that patient does pass away. 

We have that unique privilege of spending time with each patient, and alongside the essential basic nursing we talk, we laugh, we share stories, we hold hands, listen to music or watch dreadful through-the-night TV, and in the summer often we hear the first bird song followed by the dawn chorus. 

I feel so fortunate to have met and worked alongside such a diversity of wonderful people –both in my colleagues at the Rapid Response team, the Macmillan nurses, community nurses and doctors and most importantly our patients and their families. 

In a troubled world, I have seen such a wealth of love and human kindness at its very best.

Judy Lever

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