The little things, they really are the big things

It would not be an understatement to say that this time, this strange dystopian time of lockdown and social distancing, has been really tough for me.

Having cared for a  child who was frequently immunosuppressed for twelve years,  the concept of social isolation is not a new one.  In fact for all of my friends who care for children with complex needs this is not a new situation. Having to stay at home to avoid infection, practicing aseptic non touch technique, meticulously washing hands, keeping germ free....this was our life for so many years.  Staring at the four magnolia walls of an NHS hospital was my world.

This is a picture of Andy, going through chemo, FaceTiming Daisy who was in the next room as he was immunosuppressed and Daisy was colonised with some pretty nasty bacteria.  We know all about social isolation to protect the vulnerable here....

It's felt tough, having tasted freedom after years of cancelled gigs, holidays, wasted food plans were thrown awry when Daisy became suddenly and unpredictably felt like I was going back into my gilded cage.  No novelty to it, it's a world I know well.

I've felt vulnerable and alone, missing Andy as I try and keep my children safe and be the strong adult once again for them, knowing that despite the fact that they are now teenagers/young adults, I am the one they look to.  I feel a sense of deja vu as we shut the door and hunker down...this was  our life for years... no choice, no freedom, just an institutionalised life of hospitals and unpredictability. 

Yes...the PTSD has  reared it's head.

But I'm in a different place  I can't deny it's hard but I'm trying to reframe it all.  I am better equipped than most people for this life.  After all it's one I know well.  And this time, it's all of us, I'm not alone.

When I speak at conferences I'm often asked what is the one thing I'd like to tell people who have found themselves in circumstances where their lives, like mine, are turned upside down....

The little things are really the big things......

Anyone who has heard me speak knows this.  That's what life with Daisy taught me.

I have never ever taken for granted the little things.

A walk in the park

Time with my family

Sitting on the sofa

Sitting at the dining table

Food together

Being together

The little things

They really are the big things aren't they?

That's the one thing I hope we all take away from this time.  An appreciation of what we have, not what we don't have.  While I struggle to keep my PTSD in check I remind myself of this.

Even though I've been taken back to a time I remember, even though I miss Andy and Daisy more than ever .....

The loneliness is hard, the isolation...but it's not forever. 

We'll get our lives back...and maybe by experiencing just a little of the lives that are lived by so many carers and people isolated by chronic illnesses the lives we get back will be more enriched, our eyes opened.

Most importantly I hope that we will all learn that the little things are really the big things.... take nothing for granted.

Faces behind the fight - Lisa

I'm going to share some of the faces behind the fight.The people who are working to keep us safe, to counter the threat of Covid19.  I keep thinking about all of my lovely friends in the NHS, London Ambulance and emergency services  People who kept Daisy, and Andy, safe and well.  I feel so helpless....I want to be able to help, so I'm using my platform to share some of the faces behind the fight, people I know who are working to help us during this unprecedented time.

Say hello to my friend Lisa. 

We were at boarding school together. She's a doctor, an out of hours GP in a busy Edinburgh hospital. When Daisy was dying she was there, on the end of the phone, all night, answering my questions. Now she's on the front line, treating people with suspected Covid19. She's putting her life at risk, night after night,, day after day,  being exposed to the virus. Her husband is sleeping on the sofa, her kids can't hug her. 

She's there frontlining, treating the sickest, the dying. She doesn't do it for the money, she does it because this is what you do, when you have the skills and experience....she's the kindest, most generous person I know. I want her to be safe but I know if I was fighting for breath at home and the 111 service sent a doctor out to assess me, I'd want it to be Lisa, because she'd fight tooth and nail for me. I

 stood outside my house and #ClappedForCarers tonight - for Lisa, for the nurses, doctors an carers who supported Daisy and Andy, for everyone who is going through this, for all of us. 

Do your bit, stay at home, flatten the curve, make sure Lisa can hug her kids again, when this is over, please.

Is this the wake up call?

I was in Dublin last week for a little mini break and I did what every visitor to Dublin does, I went to the Guinness Brewery and took a tour. While I was there I watched a presentation about the Guinness Family, and about Arthur Guinness, and his wife Olivia.  They had  21 children, only 10 of them survived to maturity.

OK, so that's a lot of kids, but the statistics were still the same, without antibiotics, without immunisations, children died, babies died.  Death was all around; you just need to visit a cemetery to gain some perspective, you can spot the graves of the people who died in the Spanish flu pandemic in 1918. Now we can vaccinate against common strains of flu, against polio, against measles and so many other diseases....

We are no longer surrounded by death, modern science sanitised us and saved us, wiped out diseases that once struck fear into the hearts of parents and we have fallen into an easy complacency, confident that modern medicine will have the answers.

 We have come to rely on wellness and on science being able to help, to intervene, to make things better.

And this is why we are currently paralysed by shock and fear.

This new mutated virus, Covid 19, a corona virus, has reminded us of our frailty, that medicine is not infallible, that it does not have all the answers.

Those of us who care or who have cared for the sickest and most vulnerable of our society know that already.  We are professionals at hand washing and infection control, the majority of us will take up offers of vaccinations if the person we care for is able to have it, after all why expose them to any further risk?

 We tell people to stay away if they they have a communicable disease, knowing that for the person we care for even a simple cold can end up with a hospital stay.

This is the reality of thousands, day in day out, forced to self isolate in order to protect their loved one

And now we have a global pandemic and I see people questioning government and health professional advice, panic buying, confused and complaining.

So here are some facts as I , as simple lay person who just happens to have a lot of health care experience, understands them.

Yes Covid is in many cases just like a bad cold.  But in some people it's not, in the weak, the immunosuppressed, the vulnerable, it's more than that, it can be fatal.

This evening I read that there are 900 people in Italy in intensive care, 900 people needing ventilators to breathe.  A simple cold to one person is a death sentence to another .

And because this virus has never been seen before and therefore there is no herd immunity, that's why if we suspect we may have it, we need to self isolate, to protect others.

It's not for ourselves, if we are strong and healthy, hopefully we won't need hospital care.  But it's for those who are not, for those who can't fight it.  It's about them not us, it's about protecting the most vulnerable of our citizens.

And those who care for them and those we rely on to care for us.

If we are ill we expect doctors and nurses to be there, but what if they are ill?

And this is why I support vaccination....this is what our world would be like if we did not have vaccinations, only multiple times worse.  We are seeing deaths from Covid 19 and are shocked.  This is the reality when we don't have immunity to a virus.

So what can you do?

From where I sit , I am now in a position of privilege.  For 12 years I cared for a very fragile child who spent a lot of her time bouncing in and out of hospital, susceptible to infection, especially in her final years.  I spent a year caring for her daddy as his immune system was wiped out by chemo.  I needed to be well to care for them and keep them safe.  If I was in that situation now I would put our house on lock down. But to know that the less vulnerable people in our community were able to protect me and my family, that's what I would have needed.

So look around, who lives nearby who may be at risk, for whom contracting Covid 19 will be far worse than "just a simple cold".  Minimise your risk of spread by meticulous hand-washing - why does it take this pandemic to hammer this home?  Didn't we talk about this when there was a lot of scaremongering about MRSA and Cdiff...hand-washing was and will always be a simple precaution that we should all do, pandemic or not, to prevent cross infection and protect the vulnerable.  Those of us who care for the vulnerable know that.

And the other thing, if you are shopping and stock piling, why not buy for two? Stop being selfish, think about the people who are genuinely in need, knock on their door, ask them if they need anything, deliver a bag of groceries.

If you have ever posted a "be more kind" meme then this is your chance to put it into action. Get to know the members of our society who are more vulnerable, less privileged and help them, protect them.

Oh and lastly, maybe, just maybe, this is the wake up call you need if you have ever wavered , that vaccines are a good thing , they protect the weak and vulnerable....this is a glimpse into a world where vaccines didn't exist, where people died where parents lived in you really want to return to that world?

This is our wake up call.

What's your grief

This is the last ever picture I shared of Daisy before she died.  It's the day before she died, she was deteriorating but had not reached crisis and the point of no return.  I had asked for a visit from one of the hospital's Pets as Therapy dogs as Daisy was so sad and missing home and really missing her dog. 

This visit was a stop gap, I had plans in place to bring her beloved dog Pluto to the hospital to meet her, by hook or by crook, at the hospital entrance so that they could be together and he could hopefully cheer her up, she was asking for him constantly.....

The visit from Pluto never happened....24 hours after this picture was taken, Daisy had taken her last breath...

And this picture makes me sad, because it's a reminder of that last promise that I was not able to keep. All she wanted was to go home, and most of all to see her dog who she loved so much.

I know I did everything possible during Daisy's life to make her happy.  I fought to ensure that she was seen as a little girl and spent as much time as possible doing the things she loved.  I advocated for her to get her the support she needed, I trained to administer the most complex of regimens to keep her out of hospital....I know I did everything for her....

....but grief can cloud your rational brain.....

Tonight it's three years since that picture was taken, it's the night before the third anniversary of Daisy's death and seeing that picture made me sad. Sad that despite everything else I had done, I didn't do that one last thing for her, even though I know events took over, even though my rational brain is screaming that I'm wrong, I still feel sad.

Grief is a really is.  Those five stages of grief that we are supposed to move through: denialangerbargainingdepression and acceptance , I can confirm that grief isn't like that.

Grief makes you think in an irrational way, it makes you lose logic and reasoning.  And then when you think you've got the better of it, it comes back, through a smell, a sound, a taste, a touch, a photograph....and you are right back in the moment.

I have learned a lot about grief over the years. It affects us all so differently.  It isn't always the keening women at a wake, or the tears and widows weeds.  For me it's been channelled into doing,  into making meaning of all of the things that have happened to me.  Keeping memories alive and using my experience to help others.

Grief doesn't have a pattern or a predictability, it isn't a stereotype.  It's something I carry with me, always.  And it doesn't make me a sad person.  Well sometimes it does, when something unexpected hits me , out of the blue, like this photograph.  And then, very privately I allow my tears to fall.

Despite my decision to share so much of my life with Daisy through this blog I am actually very private, my grief is mine.  It's my burden to carry. And I will always carry it, tucked away inside me, it's a part of me that will always be there.  It waxes and wanes....

The anniversaries are the hard times and time, while it lessens the intensity, doesn't heal. Three years since that last time I held Daisy, I live every moment leading up to it, like it was yesterday, I allow my grief to surface and to take me back to that place....I need to do it, I need to connect with my daughter, I need to remember....I'm scared to forget.

I am scared that if I don't feel it that she will slip away and the umbilical connection I have with her will be finally severed...and I'm not ready for that yet.

I'll tgo back to the hospital tomorrow, to the chapel where we held her wonderful memorial service.  I'll go to the place where the big book is kept, every day the page is turned and tomorrow it will be January 31st , and I will see her name inscribed in the book....the day she died.

I'll have a cry and a moment of reflection. Then I'll tuck my grief back deep inside me, living with me always. My life, my grief.

Make 2020 the year you write your Living Will

I love lists. Ask my children. There are lists everywhere in the house. On the blackboard in the kitchen, on the whiteboard in my office. Christmas sends me into list frenzy and our family group chat goes into warp drive as I share my to do lists with the kids.

I end my work day with a list in my project book and every year I write down the things I'd like to achieve. Not resolutions, but things I'd like to the cycling holiday to Jordan I've just booked, it's been on my list for a while....

But, because I'm a woman of contradictions, I'm a procrastinator too, and sometimes things stay on my list for a while...I know I need to do it...updating this blog has been on the list for  while ...along with the great big elephant in the room.

I need to write my Advance Decision document.

These days much of my time is spent talking to people about talking.  About having difficult conversations, about sharing plans and opening up and talking about the most taboo of subjects...death and dying.

I share openly my own experience of caring for my life limited daughter Daisy, making plans and discussing with her palliative team how far we would go with medical interventions.  Similarly I talk about how we dealt with my husband, Andy's, terminal cancer diagnosis and how we prepared for life after he died, how he made me the legacy contact for his social media accounts and shared his passwords for his bank we spoke about his wishes for end of life and medical intervention.

And I share how I was able to give both my daughter and my husband a good death; advocating for them at the end, knowing that we had discussed end of life plans. And despite Daisy's death being medicalised how I felt that at the end I made the right decisions for her and how I brought Andy home with the support of the palliative team for his final days......

I've altered my will as our circumstances changed, I've sorted out life insurance and I've discussed what sort of funeral I want with my children and which undertaker to use . I've made my eldest son my social media legacy contact and he has the passwords to access my digital life...

But what I haven't done, what I know I need to do, is formalised my wishes for end of life care.

Why should I?  It's not like I'm going to die anytime soon after all?

At this point I refer you to the title of my blog, because I know more than most that life can have an uncanny habit of throwing you off course, who knows what it has in store?

Celia and Jenny Kitzinger are sisters who, like me, also have a vested interested in encouraging people to open up and talk about death and dying.  We have found ourselves speaking at the same conferences and through them I have got to know the story of their sister, Polly.

Polly was a similar age to me when she was involved in a terrible car accident which left her with devastating brain injuries.  The family knew from conversations they had with Polly before the accident that she would have preferred not to have had the medical interventions that kept her alive, initially in a persistent vegetative state and subsequently in a minimally conscious state .  The family told the doctors who were caring for their sister that she would not want life-prolonging treatment but despite showing evidence through Polly's writing and letters that she would not want to be kept artificially alive, the doctors persisted with treatment.  And 10 years later Polly still needs 24/7 care and it's unlikely that she will ever be able to make a decision for herself again.

Jenny and Celia have campaigned tirelessly to open up the conversations about the need for everyone to make an advance decision and to communicate it.  In fact medical professionals are expected to talk to family and friends in order to make a "best interests" decision but it really becomes a lot simpler if there is an advance decision document in place, because it's something that you have thought of, when you had the mental capacity to do so, and most importantly, it's legally binding.

Because just telling your spouse, next of kin, friend to "switch off my life support if the worst happens" isn't as easy as you think, as Polly's case illustrates.

Until I had met Jenny and Celia I had always assumed that an advance decision or "living will" was something for older people, something that I should discuss at some point with my parents, along with who was going to be the lucky recipient of an extensive collection of crystal vases and seaside mementos. But now I know (as I should have realised) that everyone over 18 should write an advance directive if they have strong opinions about what they do or don't want to happen to them should the worst happen and they cannot speak for themselves.

I was lucky, cancer gave Andy and I time to discuss things, make plans , to think about resuscitation and end of life care but a sudden devastating event; a car crash, a stroke , doesn't give you that luxury.

So sorting out my advance decision document and getting it witnessed has been on my to do list all year.  Not long after hearing the Kitzinger's speak for the first time I was involved in a minor accident that left me with concussion and the realisation that I was actually not infallible or immortal, none of us are. The only guarantee we have in life is death after all.

So, what is an Advance decision and how do I make it?

It lets your healthcare team know your wishes if you are not able to communicate them. It's a legally binding document and informs your family, friends and the medical team with your wishes for refusing treatment if you're unable to make or communicate those decisions yourself.  You can find out more information about Advance decisions here.

Creating an Advance decision takes time, it involves difficult conversations with family members, and the need to really think about what you do and do not want for your end of life care.  I think that's why I've been procrastinating so much, it involves me going to a place that I encourage everyone else to go to, to think about my mortality and ultimately what for me constitutes a good quality of life.

Compassion in Dying have an excellent form on their website which guides you through everything that you would need to consider in drawing up the document and what to do once you have written it.

It's all relative, there are no rights or wrongs, no judgements, it's just about planning ahead and ultimately making things easier for those who are going to have to make decisions on your behalf should you for any reason not have the mental capacity to do so.

It's not something I will enjoy doing and hopefully it's a document that won't ever be used (but I will definitely be revisiting it to make sure it's still what I want) but it's got to be worth a few hours of my time.  If the worst did ever happen to me I would want to know that my kids have some guidance from me to carry out my wishes.

So if you are making a list for things you would like to achieve in 2020 here's my suggestions:

1. Sort out your legacy contacts and passwords for your digital/social media accounts
2. If you have children who are still in education or you have outstanding debts sort out life insurance
3. Write your will
4. Discuss your funeral wishes with your family
5. Fire up the Compassion in Dying website and sort out your Advance Decision (Living Will)
6. Decide who will be receiving the collection of whimsical figurines that you have been amassing since childhood.... (OK, this one's not obligatory).

Wishing you a procrastination-free 2020

Hospice UK Conference Talk

Last Friday I was honoured to be invited to speak at the Hospice UK conference in Liverpool.  I was interviewed by Tracey Bleakely, their CEO and the result is nearly forty minutes of video covering everything from life adjusting to caring for a disabled child, paediatric palliative care, end of life planning , supporting young carers, anticipatory grief and grief.

I think the interview gives some really useful insights to health professionals, carers, parents and anyone interested in knowing what it's like to have to suddenly change your life when things don't go according to plan!

Please share the link with anyone you think might be interested.

And thank you to Hospice UK for inviting me to such a brilliant event!

My speech to the Institute of Medical Ethics

A few weeks ago I was invited to deliver a memorial lecture at the Institute of Medical Ethics.

For the benefit of those who were unable to attend, here it is:

In January 2017 my daughter Daisy was admitted onto the intensive-care unit at Great Ormond Street for the last time.  She was put on a ventilator and it was clear that she was septic and her organs were beginning to shut down.  She had a cardiac arrest as the physio therapist performed a bronchial lavage in an attempt to identify the bug that was causing such havoc.  I walked in on the crash team working on her.  

It is possibly the worst thing I have ever seen, my little girl, just a few weeks past her 12th birthday, limp like a rag doll as the crash team performed CPR.  They brought her back but it was clear that this time, unlike all the other times, Daisy was not going to leave PICU.  Doctors and nurses worked on her constantly.  The consultant took me to one side and told me what I already knew, the Daisy I knew would never come back, there were options, they could start dialysis, they could keep resuscitating but the outcome would be the same, all it would do was buy time.  I already knew the answer.

A Family Reunion

"Find your tribe", it's the advice I give the many parents of children with additional needs who contact me.  It doesn't matter if you child has a confirmed diagnosis, you need to find people who "get it", who understand what it's like to live 24/7 with a child who has taken you for a ride on the extreme parenting roller coaster.

We were lucky (I'm ever the optimist), Daisy received a confirmed diagnosis of Costello Syndrome when she was 6 months old.  At the time she was one of the first children in the world to be tested for the sporadic mutation on the hras gene which causes the syndrome, at the time we were told that it was so sporadic the chances of having a child with Costello Syndrome were 1:1.25million.