After The Funeral – “Life” Goes On……

13^th January 2012 was James’ 23^rd birthday.

Everybody was feeling low after all the build-up to the previous day – we’d been working on adrenaline and that had kept us all going through the funeral and the get together afterwards.

But the 13^th was a really difficult day because Carol wasn’t there. The first one of our children’s birthdays without their mum.

Elaine and Carly bought some balloons and we released them from Fistral beach in the morning – there was something about watching a silver star shaped balloon rising into the sky and disappearing into the distance above the sea – it was a very poignant moment.

In the evening James had booked a meal at a local restaurant and all the family were there. This was a very emotional occasion because there was somebody missing. I know the whole family were feeling it too but the longer we sat there the more the room was closing in on me.

That weekend was about preparing for everyone to leave for home. Paul, Elaine and Carly left on Sunday and I drove my mum and dad to the airport on Monday morning to catch their flight. They’d been with us for a month, and it had certainly turned out differently than we’d planned when they arrived way back in the middle of December.

It was very strange walking back into the house – the empty house. Was this how it was going to be now? I can’t even begin to describe the feelings on that day.

There were still a few things outstanding and all of those were finalised on the Wednesday – we’d broken up the ramp from the front of the house and that was taken away, a courier collected the MNDA laptop and communication equipment that we’d had on loan and the Possum engineer came round to remove the system that had been so useful for Carol in times that now seemed so long ago.

I’ve not gone back to work yet – there’s no way I’m ready for that right now – they’ve been very understanding and have left me alone and that’s been appreciated. I know I’ll need to face up to going back at some point but at the moment it’s hard enough just getting out of bed and forcing myself to make it through the day.

I said in an earlier post that the grieving process started a long time ago – I stand by that but we were protected from the reality of grieving by the fact that Carol was still here and we all had things to keep our minds occupied. Despite having to deal with the changes that affected Carol so much she was still there in the middle of everything - there was a focus and the family was able to carry on.

Grieving the actual loss of Carol is something entirely different - and in these early stages every day is worse than the one before. I feel that there’s a point I’m going to have to reach before I can start to climb back up again. I don’t know when that will be but there’s some comfort in the fact that I’m even aware it’s happening.

The truth is that despite all the planning, despite the fact that we knew where the disease was taking Carol ,and what the end result would be, there’s no way to fully describe what this “feels” like. There’s no way to explain what it’s like to not have that person here – I mean that person, that actual person in that body, that physical being – that's the part I’ve come to realise we were never going to be prepared for -  the whole thing seems so unreal.

The children are being very strong – Carol’s spirit shines through in them all and that will always drive them on. There are bad times that we have to work through, and so many questions that we have no answers for, but I love them so much and I’m very proud of them all – and I know Carol feels the same.

The sympathy cards keep arriving and it’s been no real surprise to see just how many people have been affected by Carol’s passing, because Carol obviously meant so much to so many of them in life.

Each day is about setting yourself targets – sometimes you’ll start to drift off and then wonder what just happened and where the time went but we all realise it’s a slow process - hour by hour, day by day and so on.

We’re not looking too far ahead – there’s an Elvis concert in March and there’ll be a crowd of us going to that in celebration of Carol’s life, but there aren’t too many other plans being made right now.

The USA trip will need to be arranged but there’s time for that later – and Carol’s ashes are now ready to be collected, so that’s the next bridge to cross – as I said hour by hour, day by day and so on………   

   

  

Carol's Tribute Fund & Memorial Website

There's obviously still more to write about Carol, and our families ongoing journey - how we all carry on after the funeral, what life holds for the family as we come to terms with Carol's loss, and there's the small matter of a trip to New York and Memphis to fulfil Carol's wishes and spread some of her ashes in those places that were so special to her.

I've also set-up a Tribute Fund in Carol's name on the MNDA website. This is for any donations that people would like to make on behalf of Carol, and as a lasting reminder of her incredibly brave fight against the disease that took her life. The link below will take you to the website and personal donations can be made quoting Carol's name and Tribute Fund number 281673.

Carol asked for donations in lieu of flowers and we raised a total of £627 on the day of the funeral, thanks to the generosity of family and friends, and many other donations have been made directly into the Fund since then. If anyone is considering donating to charity or fundraising in the future, continued support for those living with MND and ongoing research into the disease is a valuable cause indeed.      

http://www.mndassociation.org/get_involved/tribute_funds/index.html

I'm also developing a memorial website for Carol - the link is below. This is a place for family and friends to leave comments, stories, thoughts and photo's and will allow us to remember Carol in our own way. Hopefully, in time, we'll be able to create a website that will honour Carol's memory and remind the world of the beautiful spirit that has been taken away well before her time.  

http://carol.gormley.muchloved.com/

Eulogy For Carol (12th January 2012)

EULOGY FOR CAROL - Written and Read by Mike

Carol - my soulmate, the love of my life, my best friend and my much better half – the most fantastic mum to James, Kyle and Bec, mum-in –law to Samm and Nanna to our beautiful baby Veronica – the real strength and guiding light behind the whole of our family. Sister, daughter, sister-in-law, daughter-in-law, auntie, niece, cousin, godmother and a great friend to so many people.

Now that’s a lot to fit into such a small package but that’s exactly what Carol was all about.

A fiery redhead (and a variety of other colours at times!) filled with such passion, love and joy for life that it was impossible not to be captivated by Carol from the first minute you met her.

Carol was all about family, our children were her life, she was an amazing mum and takes all the credit for doing the real work in raising them to be the wonderful adults they are today. Carol put all of her hopes and dreams on hold to raise our family and when I look at James, Kyle and Bec I see Carol. I see the different parts of Carol’s personality in all of them and her courage and strength shine through in them every day.

And I’m a very lucky man - that might sound strange today of all days but it’s the truth when I think that I was able to share the last 25 years of my life with Carol. I often asked her why she picked me all those years ago – in my “I’m not worthy” moments – but Carol would give me that “I’m not listening - you’re boring me” look. It’s a look that would reappear years later and become infamous within the care team. A look that the girls can no doubt use now to wind each other up, or to remind themselves of all the laughs they had and remember Carol with a smile!

And that’s the first thing people mention when they talk about Carol – her smile. A smile that could light up a room in an instant, a smile that was true and open and showed you the glorious heart of the person within. It was a smile that was often accompanied by a very loud laugh – a laugh that could be heard far and wide, a laugh that opened up Carol’s personality to the world - bright, bubbly, energetic, busy - always rushing around – Carol was just a free spirit that couldn’t be held back.

Of course that much passion and energy also leads to some blowouts and Carol could certainly get stressed when she put her mind to it! It was a source of much amusement at times – the New York subway incident is one the boys remember well! We got separated from Paul and Bec and Carol went into meltdown! There was no sign of them back at our hotel so I was ordered – yes ordered – to go out and look for them. Despite my protests that there were around 8 million people in New York, and Paul and Bec did actually know where our hotel was, Carol still ordered me to go! Needless to say they made their own way back while I was out searching – but Carol didn’t speak to me the whole of the following day because it was my fault we’d gotten separated and I hadn’t actually found them!  

We should also mention Carol’s “other man” – a certain Mr Elvis Presley. There’s not a great deal you can do to compete with The King so you just have to go with the flow. However I did stand my ground when it came to having a 6 foot cardboard cut-out of him right next to the bed – that’s just too much pressure so he was relegated to the landing! The experience of that first American trip, seeing the joy and the tears on Carol’s face when we got to Graceland is something that will stay with me forever, and Carol has requested that a part of her will make that return trip – this time to stay. In fact, wherever they are right now, I’m quite certain that Elvis has already had to take out a restraining order – I can see Carol chasing him around as clearly as I can see her dancing wildly to Suspicious Minds in front of the TV in the lounge – turned up full blast of course!    

I suppose it’s impossible to get through today without mentioning the last few years – we wouldn’t even be here today if it wasn’t for that - but Carol would not want us to dwell on what couldn’t be changed. Carol’s journey is recorded in our blog and that record shows how Carol fought so hard for so long and stubbornly refused to give in. There are a number of special people named there who meant a lot to Carol, they know who they are and we know the feelings were mutual. Carol touched so many people during her life and so many lives were deeply affected by her presence, and so many of us are better, stronger people because of Carol – she was quite simply the bravest and most inspirational person any of us are ever likely to meet.

Carol defied the odds and kept going for much longer than she should have – and that was just down to sheer bloody mindedness, willpower and never wanting to be beaten. We crammed as much as we could into those few short months and Carol always wanted to do more. Despite everything that happened to her Carol didn’t complain, there were some dark days but there was always that smile to bring us all out into the sunshine again. Carol was always in charge, making all the decisions right to the very end -and preparing well in advance to make it easier on all of us when the time came.

Somebody said that Carol and me were two halves of a whole. Well I know which half was the strongest one, which half was the bravest one and which half was the most amazing – and the remaining half now needs to honour the life and the memory of that most wonderful lady.

We should all remember what Carol taught us about life, it’s precious, it’s short, it’s there to be lived and it shouldn’t be wasted.

Carol, I owe you everything and I love you with all of my heart always.

Thank you for sharing your life with me, for the gift of our beautiful children and for bringing light into the lives of so many people.

You’ll never be forgotten and your smile will light all of our days – sleep well my lovely lady.

  

Carol's Funeral Service Script (12th January 2012)

CIVIL FUNERAL CEREMONY SCRIPT

Ceremony arranged by:             Mike for…

Deceased Name:          Carol Anne GORMLEY

Date of Ceremony:    Thursday 12^th January 2012

Time of Ceremony:                      3pm

Venue:                     Penmount Crematorium, Truro

Processional music –   ‘Suspicious Minds’ – Elvis Presley

Good afternoon and welcome everyone.  On behalf of Mike and his family, I thank you all for your presence and valued support here today as we are gathered to say a last, fond, rock n’ roll style farewell to the much loved, flame haired, ever smiling ‘pocket rocket’ that was Carol Anne GORMLEY.

First of all let me introduce myself, I am Suzanne Brown, a Civil Funeral Celebrant and it is my privilege to have been asked to lead this ceremony through which we will focus on and celebrate Carol’s 47 years of life in a manner very much as she had planned it.  In doing so it is hoped to provide some comfort to those of you most affected by her passing. I know it will be with heavy hearts that you have made your way here from far and wide to pay your last respects. It demonstrates the esteemed regard in which you all held Carol.  I know there are some who, for circumstances beyond their control, could not make it today but I am sure they will be thinking of you all at this difficult time.

When I say we are here to celebrate Carol’s life you may find it difficult to contemplate celebration when many of you will still be struggling to come to terms with the pain of your loss.  Loss raises all manner of questions and emotions - most of all a sense of injustice for a vibrant, valuable life cut so short by the debilitating effects of Motor Neurone Disease. I have learned that Carol faced up to MND with a brave heart and a business as usual attitude so very typical of her and even when her physical movement and speech failed her she was still able to project her will and feelings – ensuring that even when the end came peacefully at home on 29^th December … it was on her own terms.  Celebration of Carol’s life is therefore vitally important or what has it all been about?  That said, we all know we cannot change what has happened to Carol but it is possible, in time, to accept and embrace the fragility of this life we all live. We can learn to make the most of our time so that no matter what lies ahead we can strive to make a difference to the world and those we live among… just like Carol.  

Mike has asked me to say that you are all invited to join him for refreshments after this service at The Lanherne in Newquay where you can share your memories of her and raise a glass or two. Should anyone wish to make a donation to charity in Carol’s memory the proceeds will be for the benefit of the Motor Neurone Disease Association, you will see a box by the exit door.

This ceremony today has been prepared with the valued help of Carol’s friends and family with the emphasis very much on her life and character. When I visited the family home last week I was immediately struck by the little plaque on the wall by the front door which simply said ‘An Elvis fan lives here’.... hence the opening music we just heard. We will share in a moment a short reading before we hear some tributes to Carol from many sources and a moving eulogy written and delivered by Mike.  Mike’s niece Paula will read a poem.  Mike and Carol’s son Kyle will play a special piece on guitar before the words of committal and some thoughts for the future as we conclude.  Knowing what was to come, the songs you will hear throughout have been especially chosen by Carol reflecting her diverse taste in music and to fulfil her wish for a non-religious, colourful, rousing and uplifting exit.

I would like to read for you now, a thought provoking piece sent to me by Carol’s cousin Ann.

A ship sails and I stand watching ‘til she fades on the horizon and someone at my side says ‘She is gone’

Gone where? Gone from my sight, that is all.  She is just as large now as when I last saw her.  Her diminished size and total loss from my sight is in me, not in her.

And just at that moment  when someone at my side says she is gone there are others who are watching her coming over the horizon and others take up a glad shout, ‘There she comes!’

That is what dying is… An horizon and just the limit of our sight.  

Regardless of status or creed, everyone leaves a trace of themselves behind in our thoughts – whether by kind word or deed or through achievement and example – we are each unique beings with strengths and weaknesses and a story all our own to tell.  You are now going to hear how Carol has made her own special mark on the world through these tributes from friends and family… It is only fair to warn those of you of a delicate disposition that some of the content makes reference to the practice of ‘Happy Slapping’, swearing by Lite-writer and the now infamous, Gormley middle finger salute!!

We begin with Cousin Ann’s memories of Carol from when she was a child….

I remember when Carol was adopted by Annie & George (Jud as he was Known). I can’t quite remember how old she was but was just a babe in arms. Everyone was so excited about this new baby that was to become part of our lives. I can remember saving my pocket money to buy a dolly that rattled from Altrincham market for one shilling. It was probably pretty naf, but I couldn't wait to give it to her. I remember how happy Aunty Annie was to have a child of her own, she felt truly blessed when this beautiful baby arrived with a mass of shocking red curls. 

I remember the first summer was very hot. Her mum had taken her out in her pram. Carol got a bit sun burnt & poor Annie was horrified. She didn’t realise how sensitive Carol’s skin was at that time, and poor Carol got covered in all exposed areas in what I recall as thick white cream after that!

Carol grew to be a wonderful loving person. (I think we are all aware of that) She went to more Chippendale shows than anyone I know, and then of course moved on to Elvis.

After she married Mike and had the children, Aunty Annie was the proudest grandmother that I know. Carol was so selfless and asked her mum to be at the birth of her first baby. A wonderful thing to do, so typical of Carol. Annie said that it was the most amazing experience of her life; because of course she had never actually given birth herself.

When the family moved to Newquay, Annie told my mum that Carol phoned her every day without fail and told her she loved her. She was as proud as punch when Carol was training to be a nurse; she never tired of telling us how well she was doing.

Even after carol was diagnosed with MND, she tried to protect Annie until it was impossible to do so anymore. I remember seeing Carol at her mums. She had come to spend time with her. Aunty Annie had told us that Carol had hurt her leg and it wasn’t getting better. She had also said that she was having difficulty hearing Carol on the phone but blamed it on the fact that she was quite deaf. I was so surprised to find that Carol wasn’t speaking well. We went to make a brew in the kitchen-that’s when carol told me that she had MND. She told me not to tell her mum yet. She didn’t want to tell her until she had to, so very typical of that cousin of mine. I told Carol that if anyone could cope with it she could, but if I’m being honest at that point I had no idea of what it was. Carols response was yes she would be fine and oh boy did she teach us all how to be strong, brave and so determined.

The only thing that I would add is that I am so proud to have had such a beautiful person as my cousin. RIP Carol-Still loved by so many. Forever in our hearts.

When I visited the family home last week I sat and tried to absorb as much information as I could about Carol knowing I was to be standing here today. The house still resonates with her presence and with her special memorabilia for a rock legend which I will leave Mike to tell you more about.

I asked her brother Paul what his impressions of her as his sister were.  He thought for a moment and then he said…. ‘We never fell out …. just as long as I did what she said, Carol was only 5 feet tall but she was the one in charge’

Paul described how when they were children growing up in Timperley they went on caravan holidays to Wales and hung around together in Blackpool. Carol did quite well at school as he recalled but was never sporty. Her music was the main thing Paul remembered – the punk era and the Bay City Rollers. Most of all Carol was always there for him when it mattered, hard working and very supportive.

I have received numerous emails this week from people wishing to pay their respects and tell me about Carol … this is another

I am Ruth Wilkinson and was married to Carol's cousin William (divorced some years ago!)

In the early days of our marriage we saw quite a bit of Carol and Paul when they were in their teens as we were regular visitors to Aunty Annie and Uncle Jud's but the memory I will always have of Carol is December 1980 when she was my one and only bridesmaid. It was a quickly arranged wedding (less than 6 weeks) as her cousin and I had been offered a council house near to where Carol lived with her mum and dad. Her dress was borrowed (which was a good job really as i think she only actually wore it for the ceremony and for the reception up to the speech's) As soon as we left church all she wanted to do was take off the dress and kept asking when she could get changed and put her jeans on, she was quite a tomboy then and horrified that we had asked her to wear a dress! My mum still laughs about it even though it was 32 years ago. When I told my mum the sad news, she smiled and said do you remember Carol and the dress..........

She may have hated wearing the dress, but she smiled all the way through in typical Carol style.

My thoughts are with Mike and the children who have lost a special wife mother and grandmother, and also to Paul who has lost a very special sister.

Carol - a truly inspirational lady who I am honoured and proud to have known and will never forget.

Those last two words ‘never forget’ lead us nicely into the next song Carol has selected by Take That.

Music:  ‘Never Forget’ – Take That

Friend - Theresa Dearn

I am writing to let you know of my memories of Carol

We have been friends since our children were little so I have trillions of lovely memories, but a few we always laughed about are here :

We used to Walk to playgroup and back to collect the kids, one particular day we had no coats on as Carol had checked the weather and it was going to be a glorious day ! Yes you guessed it on the way home it absolutely threw it down and we were drenched to the skin ! But as we were running we were laughing so much we kept stopping so it took us longer.
We were out in my car and it started playing up, we ended up kangarooing down the road with carol hysterically laughing in the passenger seat !
We used to meet regularly for lunch and ending up spending till tea time chatting away and laughing at each others houses !
I would phone carol or vice versa and could spend time chatting for ages only to be meeting up after, Mike and Colin (my hubby) could never understand how we had so much to talk about !
Carols birthday is in December and my hubby's is in February so he has always ribbed her by saying she was a year older once she hits her birthday each year. Carols response was the Gormley finger !
The Gormley finger (middle finger) is another memory but possibly not apt lol :)
Laughter, lots of it, chatting away for hours and hours, and just knowing I had the best friend ever in carol. Always there no matter what.

Love Theresa xxx

True friends are everything at times like this, Carol was fortunate to have so many. Having devoted her time to raising her family and taking on a number of different jobs over the years to help Mike provide for the family, Carol’s personal ambitions had been put on hold… but that was to change – here is a tribute from another friend Steph Jolley to pick up the story…

I worked with dear Carol at the Celtic Sheepskin company about 5 or 6 years ago now. There were three of us, myself, Carol and Tess and we all became great friends. I felt I had to tell you this story just to show how determined and strong dear Carol was. (god life is so cruel!!)

Carol knew that she would not work at Celtic for too long, she was far too talented for that, but it was only when I happened to mention that a close friend of mine was an astrologer that she decided to get her birth chart done. ( I believe that she also had those of the children done too - not sure)  On the chart it mentioned that she should consider taking up nursing and that she would make a success of that career. As Carol had indeed considered taking this path that was all she needed, so she took the huge step and began her nursing training. She took to it like a duck to water and was about to start her final year when she was struck down by this terrible disease. What a wonderful nurse she would have made, god she would have brightened up any ward on a bad day with that smile!!

Friend and work colleague – Susan Rivett

It was fate that I met Carol, when she was a Student Nurse at Newquay
Hospital and we both knew we were destined to meet and become such good
friends, as we shared so many similarities through our life history. Carol
was, without doubt one of the best Students I had ever met, and the humour
in hospital culture was just perfect for her. It was difficult to keep a
straight face sometimes when working with Carol, as we just knew if we
looked at each other we would burst out laughing at the wrong moment.
Everyone Carol came into contact with at work loved her, and I remember a
very elderly patient asking where the lovely nurse was who had drawings
all over her!!!!
Carol showed me so much during her illness, her sense of fun continued,
and she always wanted to know how everyone was, and all the gossip, she
advised me and I always left her with a smile on my face, how could you
not, after being told to leave by her litewriter with a Father Ted phrase!
Went around one day and she was sitting in a new chair, she looked like
Ronnie Corbett in his famous chair , and so funny, her face was like
thunder, but within minutes we were laughing so much, Carol could always
take the Mickey out of herself, however that chair was not used again!! We
had a couple of girlie nights in when Mike went out, and a real battle of
wills went on, about what we would watch on TV sorry Carol, but, despite
what you said I'm sure you did enjoy the X factor auditions a bit.
How lucky am I to have had this time with Carol as a true friend, and an
inspiration for the rest of my life. Her smile is wrapped around my heart
and will always stay there.
My wonderful friend who I love loads
Sue

There have been many other contributions, not least from her carers and fellow nurses – little snippets jotted down and passed to Mike …. and I quote..

 ‘She had a beautiful smiling face, cheeky grin and a dirty sense of humour’…

‘Carol was always stylish and colourful, we all admired her sense of fashion’…

‘She was a fantastic confidante’

‘Happy Slapping’ – when we raised Carol up from the chair and used to massage her bottom… we shared fits of laughter with her whilst doing this’

‘We all enjoyed our music sessions in the mornings – one day Bohemian Rhapsody was playing, me and Lisa did some head-banging to it with our ponytails swinging! Had to jump back quickly when the Doctors arrived and pretend to be professional!!’

‘Visiting Carol was more than just a job, we all loved her like a sister’…

I am now going to hand over to Mike to read for you his own very personal tribute to Carol and the life they shared…

Eulogy for Carol – Written and Read  by Mike GORMLEY

(Published in the following blog post)

Music: ‘Sherry’ – Frankie Valli & The Four Seasons

Poem

‘Don’t think of her as gone away’ -  Author unknown  – read by Paula ROGERS

Don’t think of her as gone away-

Her journey’s just begun

Life holds so many facets-

This earth is only one.

Just think of her as resting

From the sorrows and the tears

In a place of warmth and comfort

Where there are no days or years.

Think how she must be wishing

That we could know today

How nothing but our sadness

Can really pass away.

And think of her as living

In the hearts of those she touched

For nothing loved is ever lost-

And she was loved so much.

Before we commit Carol’s body we shall have a few moments of peaceful reflection for each of you to recall your personal memories, to pray if you wish.

Music – son Kyle to play guitar -  ‘Canon’ - 

Please stand for the committal

For to everything there is season,

A time for every purpose on earth

A time to be born and a time to die

To Carol

We say a fond and final goodbye

Carol Anne GORMLEY…

Your compassion and generous nature we commit to our memories

Your love, humour and friendship we commit to our hearts

Your body we commit to its natural end.

With love we leave you in peace,

With respect we bid you farewell.

I sincerely hope that, in time, you can all be comforted to some degree by this important last act of love and respect that you have shared in here today. Carol’s life has been like a tapestry into which you are all woven to some extent. It is made up of many threads of memories which, no matter how time passes, will always remain somewhere in your hearts, safely stored to be accessed when you need them.  The greatest testimony to her memory is to make the most of your lives now, live every day as if it were your last…. Now for that Rock n Roll exit…

Exit music: ‘Sweet Child ‘ o’ Mine’ – Guns n Roses  

Close curtain

Thursday 12th January 2012 – Carol’s Funeral

Thursday morning we all went to the funeral home to see Carol – that was the hardest visit because everybody was there and we all knew it was the last time we’d be able to actually see Carol.

It was also the first time Margaret, Fran, Elaine and Carly had seen Carol so what we were now very used to was obviously more difficult for them. We spent the whole morning there, and each of us left flowers or notes in the coffin - we all got the chance to spend some time alone with Carol before we had to go.

I must be honest and say this was the most emotional time for me personally since I’d seen Carol that first time in the hospital. Throughout the last week I’d taken a lot of comfort from being in the chapel of rest and I’d chatted to Carol about things, played music for her or just sat and held her hand and watched. But that morning I did break down for quite a long time – the reality of that last visit was all too much. What I didn’t do though was say “goodbye” to Carol – I chose not to use that word as she’ll be with me forever.

One thing I will say is that it was the release of all of that emotion in the morning that allowed me to function during the afternoon, and get through the things I so desperately wanted to do for Carol.

Paula, Gary, Chris, Theresa and Kath had all arrived by the time we got home, having driven down that morning, so there were more tears, hugs and questions. Everyone gathered at our house while we waited for Carol to arrive.

We drove out along Cliff Road, taking Carol past the beach and sea for one last time, and headed to Penmount Crematorium in Truro. When we arrived there was a sizeable crowd gathered – I estimate there were around 80 people in the chapel for the service, including some very welcome faces, which was a wonderful reflection of the deep feelings people had for Carol.

Me, James, Kyle and Paul carried Carol into the chapel to the sound of “Suspicious Minds” – Carol’s favourite song of all time - and then Suzanne proceeded with the service.

I’ve decided to publish the whole of the funeral service script as the next blog post. I apologise in advance that it’s quite long – but I wanted to make it available for everybody to read. Suzanne did an excellent job of capturing Carol’s personality and there are some lovely words from family and friends. Kyle played “Canon”, which was one of the pieces Carol always loved to hear him play, and Paula read a poem. I was able to read the eulogy I’d written for Carol and will publish this as a separate blog post following on from the service one.

Baby Veronica provided an absolutely classic moment during the eulogy that brought the house down (and helped me get through it) when she let out a really loud chuckle just as I’d said that Carol was “my much better half” – it was as if Carol was right there laughing at me herself.

Carol’s other song choices were excellent – “Never Forget” by Take That, “Sherry” by The Four Seasons and her specially chosen exit song that was as loud as she was herself in life “Sweet Child O’ Mine” by Guns ‘N’ Roses.

The funeral was absolutely perfect – it was exactly what Carol had asked for, a celebration of the life that had been lived remembered by the people who had lived it with her. Yes, there were some tears but there were a lot more smiles and plenty of laughter as well – it couldn’t have gone any better.

There were lots of people to hug and speak to outside afterwards, and all that passes by in a bit of a blur, and then around 50 of us all got together at The Lanherne in Newquay for drinks, food and a celebration that lasted well into the evening.

Overall we had managed to provide the funeral that Carol had wanted and had organised for herself a year before – and that’s something that I’ll treasure forever.   

   

What Now? – Friday 30th December 2011 – Wednesday 11th January 2012 - Things To Organise

Writing this now it’s difficult to remember how we functioned through the following days – all I can recall is a kind of fog and a pain in my stomach, just like an empty feeling inside.

But there’s so much to do isn’t there – and it somehow keeps your mind occupied for periods of the day. I was able to talk to a few more people on the Friday – at least I could talk then, not like the previous evening. I can remember speaking to Paul and Margaret, no idea what we said but we did talk – I think I must have gone through with them what had happened.

I went to the funeral directors on that Friday – Co-operative Funeral Care were Carol’s choice when we put everything together a year ago. Yvonne, in the office there, knew Carol well as they used to work next door to each other when we first moved down, and she was also Carol’s Avon lady! Yvonne started the process of organising what needed to be done  and booked me an appointment with the Registrar – being the time of year it was I had to wait until 4^th January to register Carol.

I was desperate to see Carol – the Thursday evening had been such a blur and it felt as if the hospital funeral directors had whisked Carol away so quickly. They hadn’t actually done that at all – it just felt like it the following day when Carol wasn’t in the house. I rang the hospital and arranged a viewing for Saturday afternoon. My dad, James, Kyle and Samm came with me – Bec wanted to come but I was worried about what Carol would look like so I asked her to stay at home.

But Carol looked beautiful – at rest and sleeping peacefully and that terrible disease couldn’t do anything more to hurt her.

We insisted Kyle and Bec went ahead with their New Year plans – Carol would have wanted them to carry on and be out with their friends – but that New Year weekend was very hard for us all.

The District Nurse and Healthcare team helped us to remove all the medication and medical equipment that was in the house – they also requested collection of all of the large items that we’d been using for so long (electric bed, hoist, commodes etc ) – but it would be Friday before all of that was taken away. The excess food and feeding system (pump, giving sets) also needed to be returned so I spoke to the company and arranged that.

I organised collection of Carol’s wheelchair for the Tuesday – when the guy came round he commented on how Carol was always smiling and seemed so happy whenever he had visited the house in the past.

Then I had to start sorting out bank accounts, Carol’s DLA, insurance policies, Carol’s will and numerous other things that needed attention – but the priority was making sure Carol’s funeral was what she had asked for.

Because of the Bank Holiday there was an issue with getting back into the hospital to see Carol, and Bec really wanted to see her, so I kept us both busy organising the funeral. We met with Yvonne to sort out dates and times, service books, newspaper notices etc, and the funeral was arranged for Thursday 12^th January. We also met with Suzanne who was the Registrar we’d chosen to carry out the actual funeral service (remember Carol’s exact words were “No God Crap!” – so a civil service it was going to be!)

Suzanne explained what she needed and we all had the chance to talk about Carol. We then sent Suzanne’s contact details around to everyone else as she’d asked for stories, thoughts and comments from anyone who knew Carol so they might be included in the service. Lots of people sent replies to Suzanne, we couldn’t use them all but the thoughts were gratefully received and greatly appreciated. Suzanne also asked me to write Carol’s eulogy –this was not easy to do but I would write it in stages while sat with Carol in the chapel of rest.

There were lots of cards arriving and phone calls to answer – all proving just how much our beautiful lady was loved by so many. The healthcare / nursing team were very upset – they’d been caring for Carol for over 18 months and a deep bond had been formed during that time. Carol was much more like a friend to them and we never viewed what they did as a job – there was far more to it than that and their reaction to Carol’s loss was proof if any were actually needed.  

Carol was moved to the funeral home on Tuesday 3^rd and I dropped off the clothes for Carol to wear so that they could get her ready for us all to visit. Carol had requested that she wear odd socks (brightly coloured of course) and her favourite green Desigual jumper. We also selected her multi-coloured leggings to complete the outfit and she looked wonderful.

Paul arrived on Wednesday 4^th, it was good to see him and we’d spend some important time together in the coming days.

Carol was ready on the Thursday afternoon (5^th) so I went to see her and told her everything that we’d been doing. I was able to spend around 5 hours each day with Carol for the next week and Bec finally got the chance to see Carol on the Friday. Paul, Bec, James, Kyle, Samm and baby got to spend lots of time with Carol during that week and my mum and dad also popped in regularly. There was something about being in that room with Carol that’s difficult to put into words – but it was important for us all to be there as much as we could.

I can’t thank Yvonne enough for everything she did for us during those 2 weeks, she was an absolute star and helped everyone in the family over a number of days. She couldn’t do enough for us, whenever we visited to spend time with Carol in the chapel of rest, and I’ll always remember that kindness.

Of course all of this was building towards Carol’s funeral and Margaret, Michael, Fran, Howard, Elaine, Carly and Brian all arrived on the Wednesday evening. There were tears and hugs and we sat and talked everything through – while all wondering how it could ever have happened in the first place.

Thursday December 29th 2011

December 29^th – How I wish we could relive this day – just to get the chance to do things differently – there I go being selfish again trying to keep Carol here when it wasn’t my choice to make.

 It started the same as any other day, Carol was up in the morning and then had a nap after lunch. Dr Anderson came round as she hadn’t seen Carol for a while so I filled her in on everything that had been going on, just confirmation of what she’d read in Carol’s notes plus my own input. There are 2 key things that stick with me from this conversation.

Dr Anderson talked to Carol about how hard she’d fought and how it was ok to stop – at the time it just sounded like a sensible discussion to have but looking back it was almost like Carol being given permission to let go. When I spoke to Dr Anderson the following day she said it was strange just how often it happens like that – a doctor says it’s ok to stop fighting and many people decide to do just that.

The other key point was Carol agreeing to a diamorphine injection. Dr Anderson explained that the dose was very small and there would be no impact on Carol’s breathing. What we needed to do now was keep Carol as comfortable as possible for as long as possible – days / weeks / maybe even a month.

Carol was calm and appeared very accepting of what was going on – it’s difficult now looking back but I’d like to think that Carol had already made up her mind that it was time.

I spoke to Dr Anderson before she left and we discussed how I was coping – “just getting on with it” was my usual reply, that brave face being put on again. I asked about the urine problem and Dr Anderson said it was possible that as Carol’s body was weakening her kidney function was being affected. We would keep an eye on it over the next few days.

Carol wanted to get up then and a short while later one of the nurses arrived to give the diamorphine injection. It made Carol sleepy, but that was nothing out of the ordinary so we just carried on as we would have done on any other day.

When it was time for the evening healthcare visit I said to Carol that I wanted her to go back to bed as she couldn’t keep her eyes open. This had been the regular evening visit routine for a few days now but this time Carol flatly refused, saying that she wanted to stay up in the chair in the lounge. Again looking back now I firmly believe that Carol had made her mind up, and she didn’t want to be in the bedroom on her own. But, despite this being my personal belief, on the actual day Carol didn’t say anything to me.

When Carol came back into the lounge I noticed she looked very pale, but when I asked if she was ok she said yes. The girls finished and left with the usual “see you tomorrow, hairwash in the morning” – you see there was nothing out of the ordinary about the day.

I’m really struggling to remember what happened in the last 2 hours. I’m trying to find something, just some sign that Carol was trying to give me that I missed, just something that would have told us it was time – but I can’t remember anything like that at all. I got the bedroom ready for bedtime, as I did every night, and we were just sat together watching TV as we did every night – me on the sofa right next to Carol in her chair. My mum and dad were also in the room with us. I kept checking Carol (as usual) and she was dozing in the chair (as usual) and then…..I just turned to her as I’d done a million times before…..and she was gone…..

Very quietly, very quickly, very peacefully – my beautiful, brave, amazing lady just fell asleep.

Despite all the bravado and the stiff upper lip crap I’d put out there for everyone to see over all those many months I just collapsed. Despite all the planning and preparation leading up to this precise moment I was just not ready to let Carol go.

My mum must have made the phone calls because the next thing I remember was one of the ambulance crew having to pull me away from Carol so they could do their checks. This acted as some kind of spell breaker because part of the sensible, organised me suddenly reappeared.

I had to go through Carol’s Advanced Directive with them (they’d not seen one like it before) explaining Carol’s wishes – even though they were clearly visible in their computer system. They informed us that the Police would be visiting, as they do for any death outside of hospital. That was initially a shock but it made sense that they needed to ensure all was in order. They all did their best in very difficult circumstances for our family and the way they handled Carol and our situation was appreciated.

Only Kyle was in the house at the time (and he was a great support for me right at that moment) - we had to get Jim, Samm and baby to come round and get Bec from Jasmine’s house. That’s when the enormity of the loss really starts to hit home – our children have lost their mum – that just shouldn’t be happening when their mum is so young.

The rest of the evening was a blur of tears, phone calls, despair, anger and such pain at the loss of the beautiful lady that held everything together and fought so bravely for so long.

The house felt empty – so empty – as if it sensed that such a massive presence was gone.

I hope that was how Carol wanted the end to be – with no fuss – in my mind I know it was, but all you do afterwards is question yourself. You just can’t help feeling guilty – that’s a stage of the grieving process that isn’t on the list…..

…..and suddenly that scary future is here.     

                     

Carol's Final Days

I'd already started to write the next blog post before 29th - but obviously wasn't planning for what came next. I think it's important for Carol's journey to follow everything through to that day and beyond. So this is what happened over those last days.

A couple of weeks previously I'd spoken to Liz from the McMillan team about the fact that Carol was getting very tired, and I was wondering if we were moving on another stage. Liz had said to me that the next thing to look for would be Carol starting to sleep more than she was awake – she also said that when it happened it would probably be quick (how very true that actually turned out to be).

It started to happen just before Carol’s birthday, with Carol looking more and more tired (I thought it was all down to the sleeping problems) and then escalated to the point where Carol was in bed and could barely keep her eyes open for more than a few minutes at a time.

Carol did say that she felt we were nearing the end - but she felt it would be at least a couple more weeks rather than just a few days. Carol made a very important decision at this point – she didn’t want to go into hospital at all and wanted to stay at home until the end. I’ve got to say I was relieved to hear this as I felt it would mean Carol would be able to control things herself (again with hindsight that’s exactly what Carol did). Carol also told me not to tell anyone what was going on – she didn’t want everybody worrying or coming down and sitting around staring at her.

December 24^th - really the first day when Carol spent more time in bed than sat up in the wheelchair. An uneventful day overall with Carol just seeming to be catching up on the sleep she'd been missing so much. We watched a couple of films in the bedroom and Carol dozed most of the day.

December 25^th - in many ways a repeat of the 24th and Carol spent a large part of the day in bed, but she did get up later on when Jim, Samm and baby came round. There were also a couple of things worthy of note. This was the day I finally realised what was going on with the sleeping problems. It was so obvious that when it came to me I felt such a fool for not seeing it before. I sat with Carol and asked her for an honest answer to the question "Are you forcing yourself to stay awake because you're scared of not waking up?" - and the very obvious answer was "yes". Suddenly it all made sense, despite all our attempts with so many different medications that didn't seem to work, it all came down to the fact that Carol's willpower was stronger - quite amazing really. What also happened was a change in urine output, with Carol suddenly passing very little despite the regular daily fluid intake being maintained. On Christmas Day we had the catheter changed, as it appeared to be blocked, but there was more to this than we thought at the time.

December 26^th - more like a regular day with Carol up in the chair and watching TV.

December 27^th - Carol was up in the morning watching TV but had really bad palpitations early in the afternoon and she also had severe pain in her diaphragm. The nurses were fortunately visiting at the time, sorting out the syringe driver, so we discussed using one of those “just in case” medications to calm Carol down - midazolam. Carol agreed to this being used but also asked for the paramedics to be called to make sure nothing else was going on. Fortunately the medication worked almost immediately so by the time the paramedics arrived Carol was calm and more relaxed – but the pain was still there. It was at this point that Carol admitted she’d been in pain at times in the past but had not said anything to me. Forgetting how I felt hearing that at the time I really believe now that Carol needed to deal with the pain herself as it kept her focused on feeling something. This admission led to a further discussion about diamorphine, which was also in our “just in case” box at home. Carol refused this as she was concerned about the effect it could have on her breathing. The paramedics left having confirmed that Carol didn’t want to go into hospital. The urine output problem had continued so the nurses changed the catheter again and a GP visit was arranged for the following day. Carol stayed in bed for a while but got up during the evening.

December 28^th – Carol didn’t seem too bad today and actually decided to have the midazolam added to her syringe driver for constant delivery and symptom relief. This would keep Carol more calm and relaxed and alleviate any anxiety she may be feeling – it would hopefully mean the end of the palpitations. The GP came and assessed Carol and she seemed ok, apart from appearing to be bloated due to water retention. The GP advised we should change the catheter again, and then use a dose of furosemide. This actually worked very well and Carol was more comfortable almost immediately as things started to move.

So despite Carol having been through a rough few days everything seemed to be under control, and even though we could probably now look at a date in the not too distant future there was absolutely no indication that date would be tomorrow.