Monthly Archives: June 2014


Today (27th June 2014) marks 3 years and 5 months since Steve stuck two fingers up to Huntington’s disease and went to sleep without waking up to face another day of getting weaker and weaker.

This week I saw the last episode of the television programme My Last Summer. The programme follows a group of people facing dying.

Each member of the group had been informed by their doctors that they were not expected to live beyond a year. Three of the five members have since died; Junior; Jane and Ben. At time of writing this, Andy and Louise are still fighting on, but acutely aware it is likely to be just a matter of time. The family and friends of those dying were also able to give perspectives by being very much involved in the filming.

When I opened a copy of a letter sent from Steve’s neurologist in September 2010, which stated ‘I believe that his life expectancy is less than one year’ I truly thought that Steve had more time! I thought the specialist was being a bit liberal with the truth to get one up on the financial sector on our behalf.

The letter was part of our looking into getting Steve’s private pension released early so that we could spend more on the here and now together. That being rather than have to scrimp and save or feel guilty about spending so much money in order to still live life together as long as we could. It was important to enjoy doing things as far as possible whilst still able to, (see my last entry The Show Must Go On).

Sadly the specialist was simply being realistic. I was in total denial though… Steve died within five months of that letter and we had already turned palliative care away as we seemed to be doing just fine thank you. Neither of us could accept it was time to start talking end-of-life in such brutal detail.

I did actually contact palliative a few hours before Steve died. With the pneumonia his breathing had become very laboured. He was struggling to take the oral syringes of penicillin and paracetamol and I called the GP to ask for oxygen (or possibly morphine if he started showing signs of pain). The GP said he could not arrange home oxygen or anything without the sign-off from palliative.

Palliative were in the middle of an evening shift change when I called them straight after. Unfortunately, the “computer said no” as they had lost us on the system. It was suggested we call in the morning when the office would be properly open again. Nothing they could do for us without the paperwork, and the GP’s hands were tied without palliative’s agreement.

I asked Steve “Hospital or home?” He mouthed twice “Home… Home”. I could have panicked and called an ambulance but if Steve was going to be strong enough in time of such distress it was the least I could do to abide by his wishes. He didn’t make it until the morning but did die peacefully and I was holding his hand watching his face. It was a peaceful and, dare I say, beautiful death.

It wasn’t always total denial insofar as we did discuss the practicalities of death a few times when still emotionally strong enough to have a discussion about it. We both set up our funeral plans at the same time. Both chose the cremation option and selected our coffins (rosewood). Choosing a funeral plan, and paying up front, seemed a practical thing that would give us something off our tick lists and could be forgotten about until need be. Even if we both lived to be one hundred we would still be needing a funeral plan at some stage.

I actually forgot we had plans in place the night Steve died until my brain snapped into gear again. The two GPs, who came to sign off Steve as being dead, said they would let themselves out. I was on the phone to someone who had just heard and wanted to call me.

I got rid of the caller and shouted back at the GPs “what do I do now?” For some reason I had not thought that they would just walk off and leave me alone with Steve dead in the chair. I suppose I thought an ambulance would be called to take Steve to the hospital mortuary but no.

The GPs simply said in a nonchalant way “you need to call an undertaker.” After they had gone, I looked on-line for a local undertaker and then remembered I had a contact card in the papers for the funeral plan.

It was all a bit surreal. I shaved Steve one more time, brushed what I could of his teeth where his mouth was still slightly open, and covered him in his comfort fleece to keep him warm. Having called the undertakers to come at 11.30pm (they had already said just call when you are ready) I sat and talked to him as if he were still alive and told how much I love him. I was grateful in the end to have had so much time alone together.

The next time I saw him, he looked so young and healthy all suited and booted in his coffin. Actually, that’s not strictly true. The next time I saw him was when he came to me in bed the night he died. He was floating above me and tried to pull me upwards but I lost his grip. Was that a dream? It seemed very real to me and my body was in a state of abject pain throughout. I thought I was having a heart attack at the time with the pained racked through my chest and back.

Seeing Sonia in My Last Summer, talk about the pain of losing Junior, and his still being in the home with her; feeling the breeze in a certain part of the garden; and the Robin visiting and being Junior does not seem at all odd to me. I know exactly where she is coming from.

I think it’s wonderful that there have recently been so many programmes that have been brave enough to talk about and explore what was once seen as taboo subjects. Death itself; the process of dying; and the subject of openly grieving.

They all help to make it acceptable to talk about what is the inevitable for each and every one of us. It’s all about having the opportunity to retain control for as long as possible.

It was heart-breaking, and also heart-warming seeing Ben’s post it notes on the items he wanted people to have. Ben’s preparations for his service, including choosing the music for his funeral Time to say goodbye and a deliciously witty ‘Committal’ to the strains of a Big Brother eviction of him.

I too have chosen my music. There’s a CD in the paperwork which is left out in my bedroom with funeral instructions. It includes this narrative and downloads of the tracks as it can be tricky trying to work out what people really wanted.

Talking of which… The paperwork also includes my formalised Advance Decision, plus organ donor decision which have been discussed with family and a copied on my medical file.

I don’t have a terminal illness that I know of; I’m 53 so may have a few years left in me. I start a new job next week (This one is full time permanent). I have at least one more book project in me hopefully. However, by setting out my wishes now I am in control. That gives me comfort more than anything. I can always make changes if I feel the need after all…

Extract from my instruction to my nephew Barrie who is the Executor of my Will:

 On this CD I have downloaded a selection of songs. Those in red are non-negotiable. Not that I would haunt you if you didn’t go with them but I’d like to stipulate it would mean a lot to me and Steve if you didn’t change them.

 Entering the Chapel (the coffin on the shoulders jobby) 

Killer Queen by Queen [In red]

 I really would like a bit of Queen and my chosen track is ‘Killer Queen’. Queen was a big part of mine and Steve’s life and I’ve always loved that song. I’m aware the lyrics are apparently about a high class hooker but hey… I have the word ‘Bitch’ tattooed on my arse so it’s not like I am a prude 😉

 ‘Time of Reflection’

 I’d like one of these songs but would be happy if anyone else has another one they’d prefer to use (unless it’s AC/DC’s Highway to Hell lol.)

 Suggestions in alphabetical order by artist:

 Feel my Love by Adele

 This Woman’s Work by Kate Bush

Clocks by Coldplay

It’s a hard life by Queen

The Great beyond by REM

 That last track, in particular, resonates with my real belief that Steve remained with me even in death.

 For leaving the Chapel

 Starting over by John Lennon.

 I’d like to think, and also like others to think, my death is not an ending but a beginning and I will be back with Steve. Only this time, it will be better. He won’t have HD and I will appreciate him more. 

 PS Whilst typing this up and listening to Arrow Radio Station, ‘I don’t want to go to Chelsea’ by Elvis Costello came on. I think Steve is having a laugh Barrie [Barrie is a huge Chelsea fan]

I have also stipulated that I want Steve and my ashes buried with a rose bush planted over us. Seems incredibly romantic, which we were not actually. There was a time we both stipulated being scattered in the Garden of Remembrance and a tree being planted. Steve’s tree is another part of the country but his ashes are still with me. Steve was so dependent on me it felt wrong to scatter his ashes, as if throwing him away and then simply walking away. I brought him home and still look after him. He can also see I haven’t forgotten him.

That leads me to another incredible sensitive programme, which gave me comfort in my early time of grief, also involving Phil Turner.

 When Teenage Meets Oldage.

I remember taking comfort in seeing Zoe show Roy her father’s room ( at 11 mins 20) . Having opted to keep Steve’s ashes at home with me it helped to see I was not the only person who has built a kind of shrine at home.

Steve’s casket is on one of our tables by the computer and I have, at last count, 76 photos of Steve around me (it doesn’t look as bad as it sounds and some are tiny). That doesn’t include the two digital photo frames and the screen saver on this pc. Or several hundred that are downloaded on various memory sticks etc. And let’s not forget the table is next to the chair Steve died in which is now occupied by two ‘cats’ and a cuddly toy leopard. I still feel gutted though that I don’t have many videos of Steve, none of us together at all. I suppose I envy those in the Last Summer programme that they have a well recorded memory to look back on even though it’s such sad times we are talking about.

So… having used this blog to download more of my own grief today, I will end on one of the poems from my book. And on the photo side, a photo of Steve on the Orient Express. He looks fabulously smug with himself. Love that picture!

Before that though, I am putting in a link for another kind on download.

The people past and present gave so much by taking part in My Last Summer. I hope that people reading this watch the documentaries which can be seen on Channel 4OD. It would also be wonderful if the power of social media could be used to get Andy’s song in the charts. Surely we owe them that much at least for baring their souls so openly and honestly!

Andy Priest A Space for Me

I’m not clever enough to put music to words, can’t play an instrument any more, and can’t sing but I do poetry of sorts. I guess that, although written about Huntington’s, this could apply to lots of couples facing death.

The Grief


In 1969 Dr Elizabeth Kübler-Ross, a Swiss born American psychiatrist, wrote a best-selling book called ‘On Death and Dying’. Dr Kübler-Ross dedicated her career to closely studying the emotional and psychological needs of the terminally ill. In her work she went on to describe five stages of grief.

Interpreted very loosely they cover:-

Denial:             “This can’t be happening to me!”

Anger:             “Okay… It’s happening… I didn’t do anything wrong or deserve this so who do I blame for this?”

 Bargaining:      “Okay, you win… I accept it is happening but let’s come to some arrangement here. If I promise to live a better life now and give up something wil you just let me live to see another birthday?”

Depression:     “I may as well give up. I’ve run out of answers. I can’t do anything so why bother with anyone or anything?”

 Acceptance:    “We have all got to die one day. My time just happens to be sooner than others. I am ready. I am at peace with what is coming”.

Although the observations of Dr Kübler-Ross were based on people dying of cancer in hospital, her findings could easily be considered to apply to the phases of grief in many other circumstances of death, and indeed life.

It’s very sad that HD is referred to as a terminal disease. It normally takes many years from onset of being symptomatic to death itself. However, with no cure at present, telling someone they have tested positive or are even just at risk it may have just as much of a devastating impact. As if telling the person they have a disease with a very short life expectancy.

And then there is the Anticipatory Grief element. The following has been taken from a Cruse Bereavement Care training brochure:

‘What is anticipatory grief?

Lindermann (1944) first used the term.

 Anticipatory grief as a concept is interpreted in different ways:

 –           Relating to grief that occurs in preparation of impending death

 –           A journey towards the ultimate loss through a death, but is composed to adjusting to many losses, of the past, present and future.’

Everyone deals with grief differently; be it after the actual death of a person or anticipatory grief. The following poem was written as a kind of duet. Both parties grieving for the same things but in different senses. It is ultimately about anticipatory grief. The person with HD himself grieving as much as the carer. The loss of self being acknowledged here.

I do miss and grieve for my husband but because of how the disease was, and how I feel it would be selfish to wish he were back here now, it feels wrong to mourn him in many ways. It’s strange but it feels as though because of the anticipatory grief I have moved straight on to Stage five:


“We have all got to die one day. His time just happened to be sooner than others. I am ready, as I have to believe he was, and I am at peace with what happened to him“.

Will the other phases come back to hit me like a tonne of bricks? We shall have to wait and see…

Her to Him

I grieve for the man I used to know;

I grieve for the places we once used to go;

I grieve for the life we shared together;

I grieve for the wit from one so clever.


Him to Her

I grieve for the man I used to be;

I grieve for the places I’ll never see;

I grieve for the walks held hand in hand;

I grieve for the wit I no longer command.


Her to Him

I grieve for the times, both good and bad;

I grieve for the intimacy we once had;

I grieve for the future we’ll now never see;

I grieve for the loss of you and me.


Him to Her

I grieve for the memories once in my head;

I grieve for loss of you in my bed;

I grieve for loss of planning my life;

I grieve for the loss of you as my wife.



The saddest part is it wasn’t the dying,

That led to the grief and the sorrow and crying;

This grief has been growing in you and in me,

From the very first day that we heard of HD.

7 Orient Express