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Posts Tagged ‘person-centred care’

A few months ago ‘Elizabeth is Missing’ was nominated to be our book to read in book club. It was completely new to all of us (including the member who presented it) which meant that we all went into the book blind, with nothing to go on but a handful of internet reviews and the knowledge that this novel was the author’s debut. That’s always a risk, but fortunately for me…. It turned out well.elizabeth-is-missing-emma-healey-620x350

Without spoiling the story for whoever may read it, the book is centred upon Maud, an elderly lady who is, throughout the book, progressing within the stages of Alzheimer’s. It is written from her point of view, as she embarks upon the quest to find her best friend Elizabeth who… believe it or not, is missing. This unusual ‘crime fiction’ is hindered, however, by the unfortunate problem that Maud can rarely remember a) that Elizabeth is missing and b) the enquiries she has already made. The investigation into this disappearance is intertwined with a flash back tale uncovering a greater story of sadness and pain from Maud’s childhood, which has been unresolved for so many years.

This book divided our group quite strongly, but for very specific reasons. Some found it very hard hitting, and too close to home for those who have had an intimate relationship with Alzheimer’s. Hearing the raw and frustrating feelings of a woman in the grasp of such a vicious disease was grating to the wounds of loved ones who had been taken by that same dignity stripping illness. Because of this, several members of the group could not read very far into the book before closing it, although many battled on through. Some were able to separate their own experiences from that of Maud, and enjoyed it for what it is. I, was a perpetual mix of a million and one feelings.

As a nurse, I have had an innumerable amount of encounters with Alzheimer’s sufferers in varying degrees of the disease. I’ve studied it, I’ve done case studies and I’ve strived to treat every dementia patient with as great a respect and understanding as possible. That said all that I’ve ever learned or observed has been from the point of view of healthcare professionals and family members. Never before have I had a true insight into the actual realities of being a dementia sufferer. Until now.

This book was so delicately and expertly written. For a debut novel it is truly phenomenal. The nature of dementia/Alzheimer’s is such a sensitive subject and one not to be explored lightly. It is also very prominent in society’s eye at the moment, and this book could not have arrived at a more perfect time. To be able to experience life through the eyes of someone with this illness is really amazing. From the frustration, and emotional trauma of not knowing who someone is, where you are, how you got there, and whether you’re safe or in trouble, to the irritation of not being able to recall simple words for simple objects. There is a point in the book where Maud is trying so hard to remember the word for pencil- she is racking her brain to uncover the word that just will not come. She explores many words that it could be called and she describes the elements of the object, before discarding the pencil and moving on. The interesting thing that struck both me, and in fact my mother also, was that she couldn’t remember the name- she couldn’t think what it was, and yet she uses the word ‘pencil’ when discarding it. This was as if her recall just would not compute, but naturally somewhere deep down she knew the word. It was that she couldn’t combine both areas of her brain to work together in the retrieval of this simple and yet at that moment, oh so complex, word. This could only have been portrayed by very clever writing and an astute knowledge of the working brain.

Relationships with anyone suffering with a form of dementia, is hard, and often very testing too. Emma Healey paints a brilliant and so real picture of the strain, guilt and aggravation that comes from looking after a relative with this disease. We spend the book watching as Maud’s daughter Helen battles with all of these feelings. At times, I found myself annoyed by her, and felt that she was much too hard on her poor old Mother, but then as the book progresses, you see that she is just frustrated and often feels so very guilty that she cannot keep her Mother safe and happy all the time. I definitely think that this was the beauty of the writing. It explores the snap judgements we make about other people when we see only a snippet of their lives and have no idea the strain that they are under. Everything that Helen feels and most of the way she behaves is actually highly natural when you stop and think about her day to day life dealing with her Mother’s differing memory and behaviour. So often when I have been nursing dementia patients, they would have a period of lucidity where they knew who I was, where they were, and everything in between. But then there are times when they would, very suddenly, become completely unsure of who I was, where they were and even who they were. And note that I’m not a close family member or friend. I’m an employed health professional, so everything I would feel in those situations would be very little in comparison to a daughter, a sister, a friend- anyone with deep roots in the relationship. Those times were distressing for the patient, and actually even for me. Moments like this, are helpless. There’s nothing you can do to alleviate the stress except sit with them, hold their hand and assure them that they’re ok. Maud’s granddaughter Katy is a brilliant example of this. In these moments, she does nothing more than love her, sit with her, and be normal with her.

Although it is the title of the book, Elizabeth’s disappearance is not the integral mystery to the tale but is merely a trigger for the greater story. I won’t tell you much about this area of the book, since I am hoping that you will read it for yourself, but what I will say is this…

The feature of a flashback to Maud’s childhood, where one traumatic event shapes the rest of her life, and more importantly to the tale, shapes the angst of Elizabeth’s disappearance for Maud, is very poignant. One thing that I notice regularly with dementia patients is their incredible memory of past events. Often, if I were to ask what they’d had for breakfast, they wouldn’t be able to tell me. (Although to be fair, my memory of earlier in the day is regularly the same!) But if I were to ask what happened 50 years ago, that is another matter entirely! The development of the story from her childhood is a brilliant addition to the book, for without it, it would be a very short and relatively depressing bunch of pages. The flashback and subsequent conclusion captivated me and spurred me on to the end. Many people in my book club were disappointed with the conclusion. I, was not.

If you are looking for a fast paced action book with guns and constant adrenaline, you won’t find that here. What you will find, however, is a very eloquent and intimate depiction of the reality we are faced with in a world ever increasing in the number of people living with dementia. You will enter into a life seen through the eyes of an elderly lady slipping into the grips of Alzheimer’s, and the pull that it has upon her life, and the lives of those closest to her. This book is beautifully written, with times of laughter, sadness, and all the other emotions you can find wrapped into one. It’s delicate, and it’s thought provoking, and ultimately it’s just a wonderful read.

I truly think that if you are in any area of healthcare, this is a novel that you should read. It has made me check myself, be mindful, and really has changed my view of dementia for the better. This is an insight that is incredibly important to have. There are some illnesses in life that you can fully sympathise with, and even empathise, but there are also some that with all the sympathy in the world, you will never know what it’s like unless you’ve been through it. This disease is the latter. But as Nurses, Doctors, and really just as human beings, it’s important to strive to, where we can, really understand the workings of those around us, so that we can reach them, look after them, and give them the respect they truly deserve. This book highlights that very well to me, and I am thankful to Emma Healey for sharing it with the world!

Elizabeth is Missing

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The night before my first day of work, I was rather upset and terribly worried about what was to come and the prospect of being a nurse for-EVER. Sitting on my bed, crying, what can only be described as a river of tears; my wise mother told me a story which I would like to share with you today.

(I cannot promise that I will tell it as well as she did on this particular night, but  I will endeavour to do it the justice that it deserves.)

There once was a beach, a rather vast expanse of a beach. One day there was a terrible accident and the starfish of the sea were mercilessly washed up on to the yellow sand that covered the area. Hundred of little pink starfish were stranded on the beach with no way of being saved. A young boy, who was walking along the sand that day, spotted the victims from afar. He looked at them, and without a split second of a thought, he began to pick them up one by one. Running to the water side, he threw them gently into the sea, giving each one back their life. The little boy’s father came to join him, and as he looked at the task his son had begun, he stopped the boy in his tracks. ‘Son’ he said, ‘what are you doing?’ The boy looked at his father and said ‘I’m putting the starfish back.’ ‘But Son, look how many there are, you will never be able to put them all back, you will never be able to make a big difference, there are just too many to save. Why are you bothering? You could work all day, but it won’t make a difference.’ As he held a soft pink fish up to his father’s eye-line, the boy replied ‘It makes a difference to him.’

The wisdom that my mother brought to me that night was this: though it seems like you are not even close to making a difference to anyone’s life on the big scale, you’re making a difference to that one single ‘starfish’.

In the last three weeks I have persisted in an overwhelming struggle to adapt to the pressures that the modern health service has for me. Since beginning my new job I have faced a variety of challenges both emotionally and physically. If I’m honest, I have questioned at many points whether Nursing really is the job for me. My passion is person-centred, holistic care. It feels as if this is something that is un-obtainable and un-achievable within the hospital setting, and with more relevance, within the ward that I work on. Many people have declared that it is possible to give person-centred, holistic care if you ‘just make the time’, but I question whether these people have truly worked within the pressure of emergency care. It is almost impossible to even talk to a patient for longer than to ask a question, already it has become a never-ending battle with being pushed from one task to another, the persistent drive for discharges is overwhelming. I am constantly frustrated with the lack of opportunity to give my full attention to the patients and to look after not only the physical needs of those I care for, but their emotional and spiritual well being, too. This irritation makes me question my career choice even more. However, I have clung on to the wisdom of my mother, striving to visualise the lonely starfish of my ward and although I may come home at night thinking that it’s too big a task to make any real difference, I live in hope that I may have saved just one person’s physical, emotional or spiritual life.

Last Sunday I had decided that I would not be going to Church. My plan was to sleep until I woke up and then relax in front of the TV for the rest of the day. God had other plans. I woke at 10:30 with time enough to get ready for church. I arrived after deciding that I would just stay for worship… In the worship time I really felt God remind me that struggles and suffering is sometimes a good thing but that he is standing right beside me through it. This was such a relief.

‘…we rejoice in our sufferings, knowing that suffering produces endurance…’ (Romans 5:3)

 I stayed to hear the preach and was blessed so well by Hugh Pearce speaking about ‘rest’. It was a perfect reminder that the ‘rest’ that the world offers does not revive and refresh, but Jesus alone brings true ‘rest’. This was a much needed message to hear. (There was a lot more to it than that… If you have some time I’d very much recommend it. You can find it HERE.) Man, does God speak when you least expect it. I’m very blessed to have a wonderful counsellor in my life who cares about MY holistic care and I just hope and pray that I can take Him with me to the starfish of Kent.

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