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Old 12-05-12, 01:46 PM   #131
Trish
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Default Re: Curse in Verse - the poetry of HD

I have just flagged up an excellent Thread started by Brian2001 on Anticipatory Grief.

I have reproduced a poem from my book below. In it I try to set out grief is not just about the actual death of someone and grief can start years before but just not recognised.

The Grief

Introduction

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 will 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:

Acceptance:
"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.

Together

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.

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Originally Posted by Trish View Post

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Old 12-05-12, 03:53 PM   #132
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Default Re: Curse in Verse - the poetry of HD

Wow Trish, this is beautiful! You put my feelings into words, Thank you so much!
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Old 13-05-12, 01:56 PM   #133
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Default Re: Curse in Verse - the poetry of HD

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Wow Trish, this is beautiful! You put my feelings into words, Thank you so much!
Thank you Katinka

I have given below the link to my WordPress Blog. Every so often I add a poem or update on things. Where Steve would have been 51 tomorrow I went in and put up a new poem

Toasting and Boasting
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Old 19-05-12, 08:38 AM   #134
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Default Re: Curse in Verse - the poetry of HD

Another plug for the book UK Paperback

Also a sample poem taken from the Kindle edition

The Check-ups

Introduction

By the time my husband needed medication and dietary intervention, to help cope with the changes taking place in him, our communication was becoming more difficult. I use the word ‘our’ as opposed to ‘his’ as communication is always a two way thing.

My husband may have found it harder to express himself due to physical; Cognitive; and emotional problems, but I also found it harder to listen due to my own tiredness and confusing the signals being given by him. Couple with that my need to adapt my ways of talking; listening; intuitively knowing things, and also change habits of a lifetime (talking fast/doing everything at 100 miles per hour – see ‘The Rushed Hush’).

If you have read my poem ‘The Cocktail’ you will have already gathered I hold a suspicion of drugs being dished out without enough thought to their side-effects. Look at any warning leaflets and labels given with medicines or supplements and you will see any number of potentially harmful physical and psychological changes which may occur as a result of taking.

It’s all very well if we can feel and express the side-effects in ourselves, but what if we couldn’t because of our disease masking them? Or worse still... What if we could feel/sense changes but have no way of getting it across to someone as we can’t communicate our physical feelings or worries? Without being able to say “STOP” the unintentional torture goes on!

When giving my husband new medicines and supplements, I took pains to chart as much as possible his reactions/changes (temperature; bowel and bladder movements; skin changes; irritability; sleep patterns etc). However, it would have been wise to have pre-empted things by asking for a full blood and allergy test before it got to the point where I was having to second guess if my husband might be reacting to/allergic to what was being introduced to his body.

Take a simple - normally harmless - thing like milk for instance... To help weight gain we were given a milk based protein drink. Overnight my husband was being filled with a high dose of milk and minerals etc. He had not expressed any intolerance before when drinking milk, but that was not at the same quantity. A drop of milk in his hot beverages and a small amount with his cereal etc. I did wonder after a while when he showed a rash if he had an intolerance to cows milk. Should I have switched to goats milk boosting the lack of calories in another way? Wouldn’t it be great if those at risk of HD were given a full health and allergy screening as part of their general well-being checks at – say – eighteen?

And then there’s the matter of blood tests. Because my husband had been so healthy before HD took hold, and not needing blood checks previously, we found there was no recorded base-line data on what his normal blood counts would be in areas such as sodium; potassium; creatinine; calcium; alkaline phosphotase; gamma glutamyl; white blood count; red blood count; albumin; globulin etc. Changes in such areas are vital to giving clues to what may be disturbing a body and what needs treating and/or balancing.

There are ‘normal’ ranges which are used to try measuring whether a person has a particularly higher or lower count than should be expected. However, it differs from person to person where they may naturally be higher or lower anyway, much like body temperature. What about the changes to blood with regards to medicines and supplements? Unless all introduced toxins and dietary changes were screened out it would never be easy to see what is ‘normal’

There are other things to consider... When the disease had progressed to the point where blood tests might be needed for this and that, my husband had developed a fear of needles and nurses in general. This made it hard to do tests and extremely distressing for him. I wish we had at least a file showing what my husband’s system was like before HD started taking over, and before I started giving him Tetrabenazine; protein drinks; cod liver oil; creatine; pure cacao etc. That could have reduced the amount of tests and saved time for someone so vulnerable and terrified at what was happening to him.

It’s a simple little tablet,
And it’s there to help your pain,
But that tablet in your tummy,
Has set off your sweats again.

And the food that I just gave you,
Whilst it won’t do this to me,
Will because it’s so abundant now,
Cause you a rash or three.

Our confusion doesn’t help us,
When you try to tell me “Stop!”
But I miss the vital signals,
As blood pressure starts to drop.

And the doctor looks at me for clues;
His records do not state,
If your vital signs are up or down,
Or just your normal rate?

So in dark we keep on working,
And the needles scare you so,
But without the map to plot our start,
We don’t know where to go!



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Old 26-05-12, 08:57 PM   #135
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Default Re: Curse in Verse - the poetry of HD

Time for another book plug

UK Amazon paperback

Amazon Kindle

USA Amazon


Alternatively, the HDA are selling copies for £5 + £1 P&P

Click here for HDA Form

A whole host of other goodies are also available from the HDA Shop

HDA Shop - General Merchandise

Hoping to be at the HDA Stand for BUPA London 10K tomorrow. I don't do the running thing. In this heat it is just as well.

Good luck to all the runners
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Old 04-06-12, 01:03 PM   #136
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Default Re: Curse in Verse - the poetry of HD

Time again for another book plug.

Don't forget next week is HD Awareness week

Quote:
Originally Posted by Trish View Post

UK Amazon paperback

Amazon Kindle

USA Amazon


Alternatively, the HDA are selling copies for £5 + £1 P&P

Click here for HDA Form

A whole host of other goodies are also available from the HDA Shop

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Old 16-06-12, 10:08 PM   #137
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Default Re: Curse in Verse - the poetry of HD

Time for another Book Plug

Quote:
Originally Posted by Trish View Post
UK Amazon paperback

Amazon Kindle

USA Amazon


Alternatively, the HDA are selling copies for £5 + £1 P&P

Click here for HDA Form

A whole host of other goodies are also available from the HDA Shop

HDA Shop - General Merchandise
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Old 23-06-12, 09:43 PM   #138
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post

UK Amazon paperback

Amazon Kindle

USA Amazon


Alternatively, the HDA are selling copies for £5 + £1 P&P

Click here for HDA Form

A whole host of other goodies are also available from the HDA Shop

HDA Shop - General Merchandise
Well...

Yet another HD Awareness Week has passed. Managed to sell a few copies to colleagues (for 'sell' read give away as they were sold at cost price).

More people on the planet now know about HD.

Another sample poem below :

The Touching Moments

Introduction

This poem was penned on a day when I managed to stupidly knock my head on the metal part of the ceiling track hoist when attending to my husband. I was emotionally overwhelmed by my husband’s sweetness and concern for me.

At the time of writing my husband had cognitive difficulties; he was in a wheelchair; he was incontinent; he had weakening muscles in his mouth and tongue making speech harder and more frustrating for him by the day. Shall I go on...?

Although he had an unbearable illness he suffered it with no self pity or real bitterness towards anyone. That said...He would get angry and frustrated with himself and me at times, who could blame him? I am sure I would have been an unbearable patient in his shoes.

However, at ‘late stage’ he seemed to have resigned himself to his fate. It must have been so humiliating for him having to be looked after like a baby! As strange as it may sound, there were times I’d have given anything for him to go back to the man he was when shouting and agitated as it meant he had fighting spirit, even if it was me he was sometimes fighting.

Bending down to put on the pad,
I straightened myself up when done.
Head was raised and on metal I grazed;
A shout out of pain where it stun.

The fear on his face as he looked up at me;
But I smiled and just pushed hoist away.
“I’m fine” I said, whilst rubbing my head,
As I heard him slur “Are you Okay?”

It was only a bump but it made us both jump,
And it frightened him much more than me.
As the evening progressed, the same question addressed,
There was hardly a mark I could see.

As I tucked him in bed, his eyes fixed on my head;
Again he slurred was I “okay?”
It was touching to see, that he still cares for me,
When his own life is ebbing away.
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Old 24-06-12, 06:58 AM   #139
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Default Re: Curse in Verse - the poetry of HD

beautiful and touching poem, Trish!
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Old 24-06-12, 08:26 AM   #140
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beautiful and touching poem, Trish!
Thank you so much Katinka.

Steve was a very special man and my inspiration
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