The invisible army

Photo credit: George Arthur Plueger @Unsplash

I was struck by the comments of two friends this week on social media which did more than anything to help me understand the true plight of the staff who are caring for people in residential homes during this pandemic.

One friend is a doctor in Scotland, she often has to make visits to care homes, it's part of the normal workload of a busy GP .  She told me that while staff nursing Covid patients in an ITU are in the front line, the viral load when someone is dying is high, wherever your care facility is.  And as we know, now that our government has at long last included care home deaths, a lot of residents are dying.

My friend then commented that given this situation she sees the staff in care homes working in the same PPE (or less) than she would wear to see someone with appendicitis....gloves, maybe a plastic apron...

And later that evening another friend posted on twitter that she had been laying awake thinking about the care home staff she had met that day.  She is normally a hospital-based palliative care nurse but is part of a special team which certifies deaths in care homes during the pandemic.

She is seeing first hand what the staff are having to deal with.  The nurse in charge of one of the homes she visited that day was 81, vulnerable and high risk herself but a dedicated nurse through and through, putting her life on the line. 25 of the 90 residents in that home were Covid positive and the staff were doing what they could to protect themselves and the other residents.

These carers are the invisible army.

They work for low pay in residential care homes across the UK, looking after our senior citizens.  They get to know them as people, their lives, their stories, their families.  And when one of their residents dies they are the last people to see them alive.

Frontline staff in an  ITU don't have time to form these bonds with their patients, not in the same way as carers in residential homes.  They are the invisible army and they are as much at the forefront of the pandemic as the staff in hospitals.

Today the government included the statistics for care home deaths in their overall Covid death rates.

It's harrowing.

And it puts into perspective how our broken and underfunded social care system is struggling under the burden of the Covid pandemic as thousands die in homes where staff lack equipment and resources to protect themselves and other residents.

And to know that day in day out there are people risking their own lives with minimal support and protection - it's sobering.

"What can I do? What can we do?" I asked my friends.

There is no answer. This is not a problem we can solve but all we can do is show that we see them, we know what they are facing, we feel their pain as a resident they have cared for, often for years, succumbs to this awful virus....

My GP friend put out a call for donations of snacks for the carers, so that she could drop them off.  She knows that on the world scale of things it wont make a difference but it shows that they are seen.

Maybe when we are thinking about taking cakes and treats to hospital staff we could also include the invisible army facing an impossible task.

If you make masks or scrubs, maybe drop some off to your nearest residential care home. Or just leave a box of biscuits at the front door, with a note to say "I see you, I appreciate you".

These are the people who care for our senior citizens, people who deserve better as they care for people in their final days.

Let's shine a light on them, they deserve so much better.

Maybe it took Covid19 to open our eyes ?

I remember the weeks after Daisy's birth, when she was in the neonatal unit, and the hours turned to days, the days turned to weeks and the weeks turned into months....two long months.

I remember feeling numb and scared and confused at first and then, I settled into a routine, I went with the flow.

It was December when Daisy was born, just three days before Christmas.  The lights and decorations were up, the weather was dark and stormy and the big tree outside the neonatal unit was bare of leaves.

By the time she was discharged, two months later, the evenings were slowly getting lighter, there was a sense of impending spring in the air as the first leaves appeared on the tree and the Christmas decorations had been replaced with easter eggs.

And in a strangely familiar way I've settled into lockdown life.  From my previous post of feeling as though I was being put back into my gilded cage I now feel very peaceful, I can't change the situation but now I've reframed how I feel about it.

This is a time to stop, the whole world is on pause, I'm not going to miss anything. It's a bonus extra time with my children, I have often felt guilty about the time I missed with them when they were growing up and I was caring for Daisy, torn between home and hospital, I didn't anticipate this time would come but it has and while it's not always smooth sailing at home with four very strong and very different personalities under one roof, I know I will never have this time them again.

Yes there is a daily battle about the state of the kitchen and who is going to put the bins out.  They seem to sleep an inordinate amount of time and when not sleeping they eat, a lot.  I'm trying to juggle work commitments with being with them, and yes, still homeschooling (I still have one in full time compulsory education after all). But we are enjoying family time together, cooking on the barbecue, getting creative about what is available in the shops and planning menus around it. I am learning how to master the playstation (game of choice is COD: Modern Warfare, for such a pacifist I really like to shoot machine guns!), I'm getting to grips with the house admin and paperwork, I'm still managing to do some freelance work, I'm writing, I'm catching up with friends online, as always I'm running - but most importantly I'm resting and enjoying the slower pace of life, the peace...I'm taking time literally and figuratively to smell the roses.

When this crisis hit my instinct was to go into my default hyper-vigilant mode, to busy myself and to think about what I could do to help.  I wanted to be on the frontline, I have skills in this area, I am used to being around very sick people, I was exploring healthcare assistant roles, ward domestic roles...anywhere I could help.  But I stopped, because I realised that my kids need me, I don't need to contribute to anymore anxiety by putting myself at risk of exposure to Covid.  It's time to be selfish for once and just slow down.

And it's a good feeling.  Having this time.  It's allowed me to reflect on the things that I care about, the causes that I talk about .

I really hope that when this is over things will change.  For me the learning has been very personal, that it's OK to slow down, that it's OK to put myself first.

But for the world I really hope that we take away two things:

Medicine doesn't have all the answers - this has been the starkest wake-up call for the world. I knew that for years, I knew that the team treating Daisy did not have a magic wand in their back pockets to make her better, to keep her alive until adulthood, I still remember a registrar at Great Ormond Street telling me that "when we get to this level of medical complexity it's all academic guesswork" and I accepted that, I still looked for possible ways we could help Daisy in my quest to leave no stone unturned but ultimately I knew that no matter how brilliant science is, it doesn't have all the answers.

And this is the world we are facing now, we are forced to peep out from our sanitised view of health and face some stark realities.  As you know, I write and speak regularly about the importance of vaccination for healthy communities and to protect the vulnerable.  Now, we are all vulnerable, there is no vaccine or treatment for this disease and we are still learning how it impacts different members of our community.

This is the world where medicine does not have all the answers, were we have to become more self reliant, where we have to think about taking care of ourselves and those around us.  This is what the world is like when there is no vaccine to protect us.

And the other thing that the Covid pandemic has taught us is that we all live finite lives.  That death is inevitable and sometimes it visits when we least expect.

If you read my blog regularly you know this (here's a particularly relevant post).  The scale of death and illness that this virus has spread is unspeakable. It breaks my heart that dying people are separated from their loved ones in their final hours, that those left behind can't find solace in a funeral gathering.

Now more than ever it's important to "get our affairs in order" - that curiously victorian is the time to speak to our loved ones about our wishes, about resuscitation, about funerals, about wills, all those things we put off or think are for people who are dying or older, they are for all of us.

I know there is so much pressure for those of us to stay at home to use this time productively: bake stuff, make stuff, do zoom fitness, learn a skill....a few years ago that would have been me, hyperbusy to avoid actually thinking about things, now maybe the best thing we can do is to just be calm and reflect and enjoy this time.

But the most important thing we can use this time to do is to sort out those big things on our to do list that we really have not wanted to do, we ALL need to "get out affairs in order" no matter our age or health status, and this means the following:

1. Make a will - even more important if you have children under 18, what happens to them if you don't name guardians for them? Do you want to be buried or cremated? Where do you want your ashes scattered? Who is going to end up with your prized collection of gig tickets and festival lanyards?

2.Write an advance directive.  I've written about this here . It's about thinking about your wishes should you find yourself in a resuscitation situation or unable to communicate for yourself.  It's not just about DNARs (do not attempt active resuscitation) it's also about ensuring you communicate your wishes for full active resuscitation in certain scenarios. This is especially important if you are in a situation where you can't speak for yourself.

3. Sort out some life insurance if you have dependent children.  Without life insurance when Andy died we would have lost our home, the only certainty and stability my children had in their lives, the place where they feel safe.

4. Think about your digital legacy. This is another thing I've spoken about a lot; what happens to your social media if you die?  who knows how to get into your phone contacts, your email, your bank account?  Make a list, you don't have to give it to someone but ensure that at least one person knows where it is in case of your unexpected death.  Think about legacy contacts for your social media, I still have access to Andy's facebook information because he assigned me as his legacy contact (he also wrote down all of his passwords and log ins before he died), if I did not have this there was a risk of his account being deleted and along with that all the photos and videos and posts that he had made.

Sadly it's taken Covid19 to open our eyes to these important things, but it's also given us some precious time to pause and reflect and regroup and think about how we want to live our lives when this is all over.

Right, that's it, I'm off for my daily exercise, of course I don't walk, I run, some things will never change!

Sending love to all of my lovely friends working on the NHS frontline - stay safe, you are always in my thoughts 🌈