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 do....like 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 accounts...how 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

Happy Birthday you imperfect, beautiful thing #NHS70

Happy 70th Birthday to the NHS.

To me you are like a favourite aunt, cantankerous, imperfect but full of love and always there when you need them.

I truly believe that without the NHS we would not have had twelve wonderful years with Daisy.

NHS doctors and nurses cared for me when I was so poorly and pregnant with her.  She was scanned and monitored and eventually the decision was made to deliver her by caesarian section.

Tonight I'm thinking of.......

Tonight I'm thinking of the mum of the 18 year old first year nursing student who answered the ward phone during a night shift to have the word "murderer" screamed at her down the line.

Tonight I'm thinking of the little girl who is lying in a hospital bed desperately ill as her family gather around her bedside listening to the sound of protesters outside.

Tonight I am thinking of that girl's aunt who had to have a security guard escort her to the ward to visit her niece.

Andy took this picture of Daisy & I in the Interventional Radiology Suite,
as she recovered from her 13th central line insertion

When Life Gives You Lemons: Lucy Watts MBE

-->

I'm delighted to launch a new series on my blog today, it's called When Life Gives You Lemons.  Over the years I have had the pleasure to meet and get to know some incredible people, many of whom have faced adversity and have decided not to be defined by this but instead to seize the day and make the most of their situation.  Andy would always say "When life gives you lemons, make lemonade!". It as always been the spirit by which I have chosen to live my life so I thought it was about time I shone the spotlight on some other people who are also making lemonade.

Today I would like to introduce Lucy Watts MBE.

 I first met Lucy online about 5 years ago and got to meet her face to face in 2014  I was speaking at an event for the children's Palliative Care Charity, Together for Short Lives and Lucy was there also with her mum Kate in her role as a young ambassador for the charity.  We have stayed in touch ever since and I am so glad that she was also able to meet Andy.

And then she was gone

You were here and now you are gone and my arms ache for you.

Did I do enough?

Did you know how much I loved you?

Did I spend enough time just being your mummy?

My lovely girl.  My Daisy Rose.

I miss you so much.  We all miss you. We miss your voice calling for us, the way you chose which sibling would have a hug depending on what you needed them to do for you.

I miss our cuddles, our special times together.  Chatting to you and telling you funny stories to keep you entertained on the endless trips to hospital for appointments. Singing together as I set up your infusions.  Answering your endless questions.

I avoid the shops you loved, it hurts too much to remember your request for shopping, for money, for big girls clothes, for a new toy....

I talk to you a lot, I dream of you a lot.  I wave to you in the stars.

The house echoes with emptiness.  The silence is deafening.

When you died I switched off your beloved ipad, with all your music and TV shows and games and photos.  I have not switched it back on since.  It still has your fingerprints.  Tomorrow I'm going to turn it on again.  Once more the house will be filled with your soundtrack.

I'm reliving every last moment. It pains me that you were in so much pain at the end, that you were poked and prodded in your last hours.  But we didn't know.  We had been so close to the edge so many times, every time you let us glimpse into the abyss then you turned the corner and came back.  This time you didn't, I knew you were so tired.  You had been tired for so long.  Since daddy died.  your beautiful spark was gone and you tried so hard but it was all such an effort.

And I knew, at the end, it was time to let you go.  And much as I hate the thought that your last hours were filled with fear and pain I am glad we were able to reclaim you and bring you home again. Bring our girl home just as you asked.

I hope that you knew how much you were loved.  How we made sure that we fitted in a lifetime of memories into your 12 years.  We did so much, everywhere I go in London there is a memory of a place we went together, time spent together, precious time.

I always knew our time was going to be short, I could never imagine that we would have the gift of twelve years with you.  Yet I want more, just a last hug, to hold you in my arms, to feel your little curly head against my cheek.

I hope I did enough, I hope you were happy, I hope you knew how much you were loved.

I was so lucky to have been your mummy.

xxxxx

22/12/04 - 31/01/17

#rememberingdaisy
#wasthisintheplan

Always on a Friday evening.....

I had a dream the other night, it's one I have quite a lot .  The one where I am on my own at home, doing Daisy's IVs late at night and I go to the drawer to get out some more syringes and there are none there.  I feel that familiar panic, "what do I do now? , it's the middle of the night, the children are asleep, I'm on my own, how will I finish these IVs?  They are time-dependent, if I don't get them done now then the schedule will be thrown, putting Daisy at risk....."  I wake up, my heart pounding.

Not too long ago this wasn't a dream.  This was my reality.  24/7 worry.  Constantly topping up the medical supplies, trying to forecast how many syringes, needles, saline flushes we would need, whether the doctors would change the dose and this would throw my calculations and we would be short. 

There was nothing more satisfying to me than a tray of IVs that I had draw up myself, quite frequently there were 2 trays worth to be drawn up and administered.  It kept her out of hospital.

Snakes and Ladders

I haven't updated for ages, once again the poor blog has been neglected.  My life has been taken up with lots of writing projects, some freelance commissions as I try to earn some money and lots of opportunities to speak and share my story.

Sharing my story - that's the common theme in everything I've been doing recently, not just to simply share my own story but in doing so hopefully encourage others to share theirs or even be a voice for those who cannot share theirs.  I want to share our story because talking about Daisy and Andy keeps them alive, it helps people to know them as people, not the pieces of an awful tragedy.

I find it therapeutic but it is also emotionally draining, I watch the faces of the people in the audience and I see their reactions as I speak.  Some people inevitably cry.  But the more I share the more people open up with their stories and that must be a good thing.


I've been involved in a couple of "Was this in the plan?" versions of Death Cafes over the past few weeks.  Amending the traditional "Death Cafe" format to include conversation starters and an opportunity to share my story to demonstrate to the attendees that it's OK to talk about death, it's actually quite liberating.  There was a lot of laughter at both events and there will be more, I promise.

The decision no parent should ever have to face

Nearly 6 months ago I had to make a decision that no parent should ever have to face.  I had to agree to the hospital turning off my daughter's life support and to let her go.

I always knew the day would come.  I knew that Daisy would die before me but I just did not know when or how.  As it was we had 12 years with her.  In her final three years the effect of the seizures and long term total parenteral nutrition (TPN) caused brain and neurological damage. We could see a clear deterioration, a very slow but painful decline.

When Daisy was about 7 she was referred to the palliative care team, she had been under hospice care since she was 6 months, but in agreement with the hospital we understood that we needed to focus on maximising Daisy's quality of life and enjoying the time we had with her.

The long goodbye

We took Daisy back to school for her funeral, one last trip to the school she loved and had attended from the age of three.  I wanted to hide under a rock but because Daisy touched so many lives it was important that everyone got a chance to say goodbye.

We did her proud.  My beautiful rainbow girl even arranged for a rainbow to appear over the school at the very end.

Coming to terms with it all

It's so hard to believe that Daisy has gone, that we will not see her any more, that I won't hear her call out "mummyyyyy!!!!!!!".  She was the centre of our home.  Everything revolved around Daisy, because she insisted it should.  Her siblings were at her beck and call, in and out of her room, sorting out her ipad, responding to her demands, cuddling her, just being there.  That's what Daisy liked more than anything, to know that we were there.  She just needed to have us around.

Over the past couple of months she had been spending more and more time in bed or lying on the sofa, with her ever present ipad, she liked to observe the domestic chaos of our home.

And now this focal point has gone.  And we wander in and out of her room like lost sheep.

How can it be that in the space of less than fourteen months we have gone from a family of six to a family of four?  The house is too quiet.  The washing basket a testament to the reduced numbers.

Daisy passed away on the intensive care ward at Great Ormond Street hospital.  The team did everything they could but in the end it was Daisy's time and she was tired.  She had been tired for a while.  I knew it was coming.  But even when the end came it was such a shock.

We moved her to a lovely room the hospital has on it's intensive care wards.  It's the room for the children who have passed away.  There is no medical equipment, they have made it as homely as possible.  In this room we shed our tears for our girl and kissed her goodbye away from the beeps and alarms in the main ward outside.  The nurses washed her and thanks to our hospice team we then brought her home for one last time.  She just wanted to come home.

Our hospice at home nurse met the boys at home and got her room ready, setting up a cold blanket on her bed.  Xanthe and I followed behind, bringing an empty wheelchair and a bag full of memories.  The funeral directors who had dealt with Andy's funeral the previous January brought our girl home and she spent the night in her bed, surrounded  by all of her favourite toys as we drifted in and out, each spending quiet time with her, stroking her face, hardly able to process the reality of what had just happened.

The next day she was taken to her beloved hospice, ShootingStar-Chase, as we always knew she would.  She stayed on her cold blanket and rested in one of the bedrooms as the special chilled bedroom was already occupied.  This was a better option for us as we could sit in Daisy's room with her and in time allow some close friends to come and say their goodbyes.  Xanthe and I chose her Princess Anna from Frozen dress to wear and my friend Sam brought a beautiful flower crown of fresh roses and eucalyptus.  We sat with her smiling and laughing and remembering so many happy times.

When a child dies and is resting at the hospice the team hang a butterfly outside the front door.  For many years I visited and saw the butterfly, and then it was Daisy's turn.

The hospice seemed so quiet without Daisy, without her pumps beeping or her constant presence checking what everyone else was up to.  I stayed in one of the parent flats and being there cocooned me from the outside world and allowed me time to process what had happened.

But I knew we had to face the reality so last Friday Daisy was moved to the funeral directors and tomorrow I will visit and tuck her in for the last time,  surrounded by toys.  On Wednesday we will take her to school for a final journey and hold her funeral there, it's only fitting that Daisy should do things differently after all.  Her cremation will be held privately with just myself and the three children on a separate date.

We had twelve wonderful years with Daisy, she taught us so much, it's time to let her go and say goodbye.  We will do her proud.

This is the link to the page for donations in Daisy's memory to our hospice

https://www.justgiving.com/fundraising/DaisyRoseNimmo

We are a family, not a cost

Sometimes it feels like I'm a character in some Orwellian nightmare.  Not because of losing Andy or because of any of the children's issues but because my life, my plans, my hopes are all controlled by someone called "The Commissioner"

The Commissioner is a faceless person, they sit in an office, they are not always the same person,  they change frequently.  I have rarely met them but they know me, or rather they know my daughter.  They don't know her name, just her initials.  It's better that way.  The more you know about someone the easier it is to become emotionally involved.  And The Commissioner doesn't want to become emotionally involved.

The Commissioner holds the budget.  They look at their spreadsheets and they see the big figures and wonders who is eating up all of their budget, who is this very expensive person? 

Talking about it doesn't mean it's about to happen

I know I talk about death a lot in this blog, but everyone who knows me personally also knows that I am the most optimistic, positive person out there.  Because I talk about death doesn't mean it's going to happen imminently,  it just means that when I die I will, as the British so quaintly say "have my affairs in order", as you can imagine my affairs are somewhat complicated so all the more reason to make sure they are in order.

Death and taxes, they are the most inevitable things about our life on earth.  Yet people who will easily visit an accountant to manage their tax affairs would not consider going as easily to a solicitor to sort out their will.

St Andrew's Day 2015

30th November, St Andrew's Day.

Andy was born on  on the 26th November in Kilmarnock , Scotland.  His parents registered his birth on St Andrew's Day, giving him the name Andrew Paul in honour of the Scottish patron saint.

So we thought St Andrew's Day would be a good day to tell you some sad news.

Last week Andy was told that the cancer that his medical team had worked to hard to make operable was now infiltrating the liver and no further active treatment options were available.

His care is now palliative, supporting his symptoms in order to make him as comfortable as possible during this final phase.

We always knew this time would come, we just did not expect it to come so soon - a year, five years, the outcome was always going to be the same.  The brilliant medical care Andy has had has given us a year.  And what a year.

When you know your time is limited you have to seize every moment.  We learned this early on with Daisy, we  knew that our time together as a family of 6 would be shorter than most, we just did not think that it would be Andy who would go first.  But as we always say, it is what it is and while it is so sad, Andy's diagnosis has created the most precious opportunity to say goodbye and plan for a good death.

We are enjoying this time together, seeing friends,  fitting in a 24 hour visit to family in Scotland, looking at old photos, sharing memories and having the biggest laughs as we remember all the incredible things we have done and the people who have been part of Andy's journey.

We feel privileged to have this time to prepare and say goodbye.

Seize the moment and take nothing for granted.

Sending all the love - it's a wonderful life.

Give the invisible children a break too

A few years ago I wrote a blog post about whether respite was a right or a privilege.  It has always felt like I should be so grateful to the powers that be for the opportunity to get a full night's sleep.

When you become a parent you expect that the early years are going to strongly feature broken sleep and long hours watching the latest Disney offering, but eventually your child will sleep through and become independent and your evenings are reclaimed.  And as they grow older they go on sleepovers at friend's houses, stay with Grandparents and go away on school residentials.  Eventually you find yourself (as I often do with Theo) texting them to see if they are coming home that night and will it be OK to put the lock on the door!

Let's talk about death (so we can get on with living)

We really don't handle the whole issue of dying well in this country do we?  It's just not something spoken about, a taboo subject.  We are all going to die so why do we not make sure our wishes are clear so that whenever or wherever it happens those who are left behind know what to do.

We have been thinking and talking about death a lot recently in our family. For 10 years we have lived with the knowledge that one of our children will likely not reach adulthood.  She has defied the odds over and over but medical intervention keeps her alive and that can't keep working forever, we don't know when, we don't know how but we do know we have to cram in a lot of living with Daisy because she is not going to be around for as long as the rest of us....or so we thought.

The Sad Book

I have a thing for cemeteries - it's back to that old anthropology training again I guess, but a visit to an old cemetery in the UK tells you so much about social history. Living in London we have some amazing cemeteries on our doorstep, particularly the Magnificent Seven - a group of Seven urban cemeteries built by the Victorians, sprawling gothic burial grounds for the great and good of society.

So far I have visited three of the seven, West Norwood, Old Brompton and last week, Highgate - last resting place of Karl Marx and Malcolm Maclaren.

I also discovered it is the burial place for the writer Douglas Adams, a collection of pens at the foot of his headstone and reading glasses ontop of it (people do that sort of thing, Oscar Wilde's Headstone at Pere Lachaise in Paris is covered in lipstick kisses from adoring pilgrims).  Next to Douglas' headstone there is a smaller, rougher stone with the words "Eddie Steele Rosen" .

Just keep swimming........

Those readers who have followed my blog for a while know that sometimes I drop off the blogging radar, mainly because of workload at home or sometimes because I have lost my blogging mojo.  I guess the last few weeks has been a combination of the two.  Poor Andy still has his arm in plaster following a (non-alcohol related) fall the day after his 50th birthday, and this has meant my workload has gone sky high as a broken

Extreme Multi-tasking

On Sunday I completed my last run in the challenge I had set myself earlier this year to run 7 races to mark 7 years of care by our hospice, ShootingStar-Chase for our family.  The last race in my series of runs was the Loseley 10k - a very challenging cross country run over fields, up hills and down sandy tracks - made even more challenging by the torrential rain we drove through to get there!  I was joined by my lovely boys, Theo and Jules who had been cajoled into running the 4k version of the race.  I had also agreed to give a speech to the assembled runners on the start line about the hospice and what it means for our family.  This is what I mean when I titled this post extreme multi-tasking  - really how many other people turning up for that race had had to get up several times the night before to administer pain relief to their child, disconnect her TPN, rouse the reluctant boys, battle through driving rain and closed roads then stand up and give a speech before jumping off the stage and running 10K across muddy fields????

When you least expect it.....

I ran my first half marathon since 1996 yesterday.  Last time I ran a half marathon I was considerably younger and the following day I also discovered I was pregnant with our first child, Theo.  I was so pleased at my time yesterday, I exceeded my expectations and came in at 1:49:07 still feeling strong and definitely with enough mileage left in my middle-aged legs to cover the full marathon - a commitment I have agreed to take on for our hospice next year!

But something happened yesterday which hit me like a ton of bricks - a mile into my run, getting into a steady rhythm, I started to notice my fellow runners, the majority, like me, were running for charities, many had signs on their backs dedicating their run to a late mother, or father or friend.  And I was struck by the enormity of what I was doing, early that morning I had tucked the blankets around a peaceful Daisy - hooked up to her drip, with extension bags on her gastrostomy to drain bile, her ileostomy to drain faecal waste and her catheter - surrounded by her toys and books....and at that moment, a mile into the race, I wanted to stop and sit on the side of the road and sob my heart out.

Take time to smell the roses

When I walk home with Jules, my 9 year old son, from school we pass a house which has roses in the front garden.  These are not the weedy, insipid offerings you see on garage forecourts, these are big, blousy, fragrant roses - the old fashioned ones I remember from my childhood.  And more often than not I stop to smell them. Just have that moment, breathing in their heady scent, before the chaos of the evening descends.