Mirror Mirror

by David Allott

The true cost of anything is the price we pay for the alternative.

David and Margaret’s story is, sadly, not unique. Margaret was diagnosed with Alzheimer’s in early 2018. This is the real-life story of the husband and wife’s journey to seek support and care over the past few years. David shares their experience of dementia “care” so that anyone caring for – or living with – dementia can learn from what happened to them, and hopefully avoid the many obstacles, challenges and pitfalls that they had to overcome.

One in every 14 people aged 65+ have dementia, that’s around 900,000 people, and the numbers are increasing rapidly every year.

This book is an invaluable resource for anyone embarking on the journey to seek care and support for their loved one once symptoms of dementia set in. From getting a diagnosis to getting the right kind of support for them – and you – written with raw passion and from the heart, Mirror, Mirror is dedicated to the memory of Margaret. And to help every other person feeling lost right now.

An important read ahead of World Alzheimer's Month in September, and World Alzheimer's Day on 23rd September.

Paperback

First published September 23, 2023

Reviews

[Bookworm86 · Rating 3 out of 5]

BLOG TOUR REVIEW 



Review for 'Mirror Mirror' by David Allott.




Read and reviewed for David David, Literally PR, NetGalley and INK! School Of Publishing.




Publication date 24th September 2023



This is David's debut book. 



This novel consists of a dedication, preface and 15 chapters. The chapters are medium in length so easy to read 'just one more chapter' before bed...OK, I know yeah right, but still just in case!


'Mirror Mirror' discusses some topics that may upset some readers or may not be suitable for others. I like to point this out ahead of time in my reviews so you can judge if this book is for you or not. In this book David discusses dementia and Alzheimer's. 


I will start by saying that this isn't my usual chosen genre but I'm an eclectic reader and happy to read most books. I have got to admit that this book wasn't what I thought it was at all. I thought it may have just been myself reading the synopsis incorrectly but after asking my partner to read it too he was of the same opinion I was. We both thought it was going to be more of a diary type book where David speaks about his day to day experiences with caring for his wife Margaret. However, I believe the best way I can sum this book up is that it is how to apply for NHS CHC (Continuing Health Care) and of the obstacles that you may come across and of David's experiences in this. It has been written in a way where David's passion shines through and you can read his emotions in his words and the way he describes his experiences. It is a book that would have been of great use to myself and my parents when my Nan and Grandad were both diagnosed with dementia and my parents and the rest of the family were looking into the care options available. It is also useful information to retain and a handy book to keep for the future for when others I know are diagnosed, as sadly one in every fourteen people ages 65+ are. The book consists of 15 chapters and each deals with different topics that someone in the position of caring for someone with dementia will have to deal with. These topics are Insurance, Knowledge And Experience, Justice Or Injustice, NHS Continuing Care, Who Really Pays, Trying To Find Solutions, The Things You Need To Know And Do, The Use Of Professional Legal Services, Our Experiences From The Start Of This Terrible Journey, The Multi-Disciplinary Assessment For NHS CHC Funding, Who Pays: Self Funding Or Social Services?, People's Rights And Who Really Knows What About CHC Funding, My Hopes And Aspirations For The Future, Joining The Fight And Spreading The Word and Some Additional Food For Thought. I did find that many facts, figures and complaints were repeated several times unnecessarily and that the book could be a lot shorter of these repetitions were removed. However, it did also contain many intriguing and disappointing facts and figures in regards to support. I was also disgusted by the way David was spoken to and the lies he was told by those in trusted authorities and it is worrying how little those with dementia and those caring for them are prioritised by those in these so called care industries. Some of the things written by David I disagree with and we wouldn't be human if we agreed with everything one another stated but there were also many things that agreed or resonated with me from experience with my grandparents. This book is definitely worth picking up and reading but on the basis you understand it is more of a guidance book on how to deal with applications, obstacles and more when applying for NHS CHC than a personal diary of experiences living with someone with dementia. 



303 pages


This book is just £6.99 to purchase on kindle and £12.99 in paperback at time of review via Amazon which I think is an absolute bargain for this book!!! 


Rated 3/5 on Goodreads, Instagram, Amazon UK and Amazon US and on over 30 Facebook pages plus my blog on Facebook. 


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[Kirsty Stanley · Rating 4 out of 5]

What I Thought

As an Occupational Therapist who has worked in the NHS, as well as someone with chronic illnesses that means I am a user of NHS services, like many in this country, I am a full supporter of this National Institution and its founding principle to be free at the point of delivery. There can however, be no doubt that over the 13 years the Conservative government have now ruled, alongside the additional disasters of Brexit and the COVID-19 Pandemic, that our NHS has taken a battering. David talks also about the impact of successive Governments’ failure to protect this vital service. Care offered sadly often seems to not be what we expect, nor as staff members, what we want to give. The NHS has always been stronger at urgent care and dealing with non chronic conditions. Anyone who cannot be ‘cured’ by traditional ‘medical’ means or that have complex and multifactorial needs often slip through the gaps and David tells his and Margaret’s story here.

David does acknowledge the individual staff who have supported them and this is a critique of services and not individuals, although as individuals we all certainly play our part - whether in a positive or negative way is up to all of us to determine. David suggests wearing the NHS logo upside down so it reads SHN - its corresponding catchphrase then becomes ‘Stop Hypocrisy Now’. Be warned that this is a political book because healthcare is a human right and as such it is political. If you are not ready to engage at this level I would love to challenge you to do it anyway but this isn’t simply a personal story of struggle but a rallying call.

At the heart of this book though is a love story between husband and wife, and David’s righteous anger about how Margaret was treated (or not) is palpable. He shares details of the early indications of the disease taking hold through to letters between him and the healthcare team and assessments of her function at different stages of the disease.

In the book at large though is a discussion of societal ableism and the seeming determination that disabled lives simply mean less. My colleges and I at AbleOTUK often hear stories of disabled colleagues being treated inequitably and of course if this happens to our own, how do these attitudes filter out to those for whom we care? David talks about the false dichotomy between medical and social needs - a dichotomy often reinforced because social care is means tested and healthcare is not! (Currently I would say this is somewhat debatable).

David underpins what he is saying with a discussion of concepts such as justice and injustice and looks at the legal protections that people can try to enact and at the concept of NHS Continuing Healthcare (something I only actually got involved in a couple of times in my career and honestly didn’t know too much about before then). This book provides a comprehensive overview where David has used his personal insights, his and Margaret’s experience and learning and works this into practical tips on how to work within a broken system, in the hopes that others supporting loved ones with Dementia don’t face the same battle.

In my personal experience with Long Covid, even as someone with a healthcare background I have found it challenging to access the right care. In my work in Long Covid Advocacy I am collaborating with others to make good healthcare something that isn’t reliant on postcode or the Individual practitioner you get. David says in Chapter 2 - “If you can’t ask the right question, you will find it extremely difficult to get the right knowledge. You are then reliant on gaining knowledge purely by chance.”

The level of detail on the specific policies does mean that the reader in years to come will have to review the current framework as these things often change (and that change at a policy level takes ….a while…. to filter out into general practice. But this provides an excellent framework for using knowledge as power and will remain a good starting point for families facing these issues.

In this book David focuses on Dementia, a truly challenging disease that sadly can take a person away from their loved ones years before their life has ended. But there are supports that can be put in place to improve the quality of life for the individual and their loved ones. This relies on early detection, continual monitoring, truly listening to and understanding needs and this takes time which clinicians are not often allowed. I still professionally believe that it is better to give someone one or two hour-long appointments on diagnosis with a new condition and find about them, their life, their wants and work collaboratively on a plan and over a 10 minute consultation and a lifetime of trying to chase for answers. David does share Margaret’s story and like any others could find the content triggering where it reflects their own experience or where it appears to lay out a challenging experience to come. But for more it will echo their lives back to them and make them feel not as alone.

This book to me demonstrates the immense power of lived experience to shape and inform quality healthcare. As healthcare professionals we can work generally seeing people with a wide variety of conditions or we can specialise, but honestly without that personal insight of living something day in and out our education is not complete. Sure someone facing a new diagnosis may need more guidance and support but give those families 3 months, 6 month, a year, 5 years etc. and they become the expert. Where people have the skills they read up and learn everything they can, to give them and their loved ones the best chances at living a quality life. But again the NHS does need to be able to offer this level of insight to families who can’t - for whatever reason - get an honorary degree in Dementia.

Using peer support and peer groups can seemingly be frowned upon by some healthcare practitioners but it is key for many in accessing the knowledge and rallying troops to face the many battles people have to face - let’s not get into the discussion of benefits here or I might not shut up. David shares some key charities and organisations that may be able to support individuals.

David also makes the excellent point about having discussions of what you might do in these sorts of situations early including topics such as Power of Attorney but in the U.K. in particular we are particularly avoidant of talking about disease and death and then those conversations are left to when emotions are running high or sadly to times when individuals no longer have the capacity to make decisions.

There is a lot of information in this book which could be quite overwhelming. But it doesn’t have to all be read at once and can certainly be referred back to. But who is the book for?

Just people who have familial experience of Dementia.

I say No.

Anyone who has the potential to influence the lives of someone with Dementia?

Yes.

For Politicians and Senior Health and Social Care Managers definitely.

For Individual Health and Social Care Practitioners whether they work in Dementia services or not - Yes.

I would certainly recommend to fellow OTs who want to become more aware about the impacts of the day to day decisions we make for individuals and wider society at large. Sadly these troubles are replicated with other conditions and we can learn much from David and Margaret’s story.

Apologies that this has become more of a reflection that a pure review of the book but in itself I believe that demonstrates the power narratives like this can bring. Publishers take note. Stories can change the world but we need a critical mass of them so they are not able to satisfy our ableist view of these as ‘inspiration porn’ about the brave families doing battle with the system but they are used as manuals to break down and build up systems that truly work for all.


Huge thanks to Literally PR for the gifted copy for the purposes of an honest review and to David for sharing his and Margaret’s Story. Do check out reviews from others on the tour to see how they responded too.

[Helen Lewis · Rating 5 out of 5]

A hugely personal true story about one British couple's journey with dementia and the (struggling) UK healthcare system. Sadly, this story reflects that of many around the world. Alzheimer's disease is the most common form of dementia, and it's this that changed David's life when his beloved wife Margaret started to show symptoms, and then finally got a diagnosis. David has written this book to try to save others the heartache and pain they went through trying to get the right support and care for his wife. David writes with passion and pain. This is a book that will resonate with - and help - the 40,000+ people in the UK over 60 with Alzheimer's and their loved ones and carers.

[Aurélien Thomas · Rating 3 out of 5]

It's a trope that the NHS has been so poorly managed and neglected over the past decades that it is now in complete shamble. From disgruntled patients to disillusioned professionals, there are many harrowing stories that have been told indeed, and things don't look too good for its future itself. But what about the direct impact upon some of our most vulnerable members of society; here, people with dementia and their carers?

David Allott's wife was diagnosed with Alzheimer, and he acted as her carer for many years. This, in itself, makes for quite a heart-breaking experience since, as we know, many relatives find themselves being the primary carer of affected people yet without having the required experience nor support to do so. His experience as an untrained carer, though, is not the main topic of this book. The main topic, here, is about funding. What about it?

In the UK, funding for the care of vulnerable adults is supposed to be straightforward. If you can financially afford it, then the whole cost will be on you. If you can't, then either the Local Authority will cover part of it, or, the NHS will cover it all -depending both on your financial situation and the level of needs required. Now, put like that it seems fair enough. The thing, though, is that it's everything but! How so?

The author believes that he and his wife were entitled to full-funding from the NHS (through a scheme called NHS-CHC) since her cognitive abilities had become so bad (with no hope of getting any better) that it impacted even her health care needs; so much so, in fact, that there was no way the Local Authority would be able to cope. This funding option, though, was denied to them.

Now, at this point, one may shrug the case off and believe that they must have been unentitled indeed and that this book is, therefore, just a rant against a system he wrongly believes has wronged him. The fact that there are many angry passages that are quite irrelevant to the point (but are just his own venting off against some aspects of our society in general) doesn't help making him sympathetic, nor does -at times- his unkind language against NHS professionals. Fair enough. The thing, though, is that his core arguments remain: the NHS is so badly funded that, when it comes to its supporting of needed individuals, the whole thing is just a massive hypocrisy in serious needs to be exposed. And the author, no matter his poor way of doing so, does that brilliantly by retelling his own personal experience whereas people potentially entitled are not being informed about their rights in the first place; many professionals have various and contradictory views of what the legislations mean and/ or are supposed to mean; interpretations and implementation vary greatly depending on where you live (the infamous "NHS postcode lottery"); and, to top it all up, dementia patients especially have been shown to be discriminated against, not least, because theirs has been too often considered as being merely a matter of social needs above all and not that of healthcare needs (despite the two being deeply interconnected!) besides being mostly left bereft of professional advocacy support when navigating the system.

In the end, then, 'Mirror Mirror' surely should have been edited better than that (again, because of its poor language at times and unnecessary rants being nothing but distracting). However, as an exposé of how we, the public, are being bamboozled into believing that the system is adequate and will be there for us and/ or our loved ones if and when necessary (aren't we all paying taxes for that!?) it is right on point. If you care, then Stop the Hypocrisy Now indeed.

[dSianb · Rating 4 out of 5]

Personally this was a hard read for me due to personal experience with the subject matter. However, I was determined not to shy away from it and to give it the attention that it deserved.
I was in my late teens when my Grandmother was diagnosed with Alzheimer’s. She was living at home with us and I experienced first hand her pain, confusion and the subsequent impact this horrific illness had on everyone in the household.
The emotional journey was painful enough but thankfully I wasn’t personally involved in the practical challenges that the author has had to face with trying to source the best care for his beloved wife.
The experience of losing someone to Alzheimer’s over a gradual decline is agony enough, but to overlay that with trying to navigate the many obstacles in obtaining the right level of care is almost too much to bear.
The experience that David, Margaret and their family have had to endure was extremely frustrating to read and David’s passion about their journey has fuelled this book.
This isn’t a light read, but if you are supporting someone who has been diagnosed with dementia or know someone else who is trying to navigate the challenges, then I would suggest that this is essential reading.
It has also reminded me of the importance of considering Lasting Power of Attorney for both Financial and Health and Care decisions and the debate of Joint Tenants vs Tenants in Common. Not comfortable conversations to have but David and Margaret’s already difficult journey would have been even more arduous if they hadn’t had those practical considerations already in place.

This book is an invaluable resource to any families/friends currently embarking on the journey to seek care and support for loved ones upon a diagnosis of dementia.

[Esther Peacock · Rating 4 out of 5]

Mirror Mirror by David Allcott
Facing the hard truth of ''Dementia Care''
for sufferers, their families & everyone concerned about this dreadful disease.
One in fourteen people over 65+ have dementia, and the numbers are increasing every year.
Firstly, thank you to David and his family for putting pen to paper and producing such an interesting, explanatory companion to this heartbreaking, debilitating disease.
I wish I had had some of this information when sourcing help for my parents and mother-in-law; I know first-hand how difficult it is to get the correct diagnosis and source an appropriate care package. If you don't have enough to worry about whilst your heart is breaking and the relationship you shared with your loved one is vanishing before your eyes, you also have so many stumbling blocks to navigate, including financial implications and the legal rights of the diagnosed.
This is a deeply personal story, and David has written about his and Margaret's heartfelt journey with love, frustration and raw passion and shares their experience of 'Dementia Care.' the many obstacles, challenges and pitfalls they had to overcome so it may not be as problematic for people going through a similar scenario.
I want to thank publishers Ink, author David Allott and Literally PR for a place on tour and a copy to read and review.

[Laura · Rating 5 out of 5]

David and Margaret's story is a heartfelt account of their journey in seeking support and care for Margaret's Alzheimer's diagnosis. Their experiences are unfortunately not unique, shedding light on the challenges faced by those living with dementia and their caregivers.

The narrative provides valuable insight into the obstacles, challenges, and pitfalls that David and Margaret encountered along the way. By sharing their story, they aim to offer guidance to others in similar situations, allowing them to potentially avoid the same difficulties they had to overcome.

The strength of this story lies in its authenticity and personal perspective. It humanizes the struggle faced by both the person with dementia and their caregiver, emphasizing the need for a support system and understanding within society.

Overall, David and Margaret's story is an important reminder of the challenges faced by individuals living with dementia and their caregivers. It serves as a call for improved support systems and resources, while also offering lessons for those currently navigating similar paths.

[EdenB15 · Rating 4 out of 5]

thank you for sending me this book in exchange for a honest review.Heartfealt emotional, raw but extremly enjoyable and insightful rolled into the one.For soemone who has a family member with dementia i can relate a lot to this book and the way david writes is so personal and menaingful and I have already recommended this book and passed it on to family to helthem to come to terms a bit better with whats happening as i think this book does a great job in doing so. The struggles David and his family faced are raw but important for people to read about. Worth a read

[Courtney Lewis · Rating 4 out of 5]

A very deep and personal story on David and Margaret coming to grips with Margaret’s Alzheimer’s diagnosis.

This was slightly different to how I imagined this book to be, but it showed the problems faced with the NHS on the support and care of dementia and Alzheimer’s, not just in those diagnosed, but in the family, friends and carers.

David shares his experience with such passion and love, that this story really does stay with you and makes you realise just how fleeting life really is.

Lovingly dedicated to Margaret.

[Staceywh_17 · Rating 3 out of 5]

Making a comparison to a hotel with breakfast included to the cost of a care home has no comparison. The author clearly has limited knowledge of the things that purtain to this ie courses in manual handling, medication, food hygiene, first aid etc, how much they cost and that each staff member needs to do them to work in this environment. I have worked in the care sector now for fourteen years and come from a family of women who have worked in care homes / had a family member in a nursing home. And food, isn't necessarily like a hotel, do you know the requirements of the homes individuals, whether they need assistance to eat or have medical conditions that cause problems when eating?

Whilst the book does have some good points and some totally irrelevant, to me the book is written by someone bitter because his wife didn't get the care he thought she should automatically be receiving. He does nothing but slate the NHS, but I'm sure he wouldn't have any qualms about being under their care if he himself became ill.

[Karen · Rating 4 out of 5]

A great book for anyone touched by dementia.
This book details the authors view of the health service, experiences in sharing his wife’s journey through dementia care and the hard facts of trying to gain adequate support.
Touches your heart.
Many thanks to team @literallyPR for my copy in exchange for an honest review.

[Owen Hollifield · Rating 3 out of 5]

I'm always interested to read books on the subject of Dementia and people's experiences with dealing with everything that goes with this awful condition and although the book wasn't quite what I was expecting it was still an interesting read.