Publication date: 27th November 2018
Publisher: Clink Street Publishing
ISBN: Paperback 978-1-912562-96-1
Pages: 158 pages
Genre: Home and Community care
Format reading: Paperback
Copy provided by: Faye from Authoright in exchange for an honest review
Blurb (as seen on the back cover)
Elizabeth Orr is the first to admit that she had no knowledge of the realities of caring for someone desperately ill in the UK.
That was until she found her brother Norman, collapsed on the bathroom floor.
Overnight, Elizabeth was catapulted into the medical and care worlds as she battled to support her brother. The learning curve was vertical, as Elizabeth struggled with the litany of paperwork, red tape, finance issues, and working with myriad NHS departments and resources required to keep her brother alive.
Who Can Care For Me Now? Charts Elizabeth and Norman’s emotional journey through this complex care system- in hospital, at a neurological nursing home, and receiving care at home- from his initial collapse to his untimely death, just twenty-nine months later.
My thanks goes to Faye from Authoright and Clink Street Publishing for asking me to read and review Who Can Care For Me Now? by Elizabeth Orr. I also want to thank Elizabeth for writing a guest post to add with my review.
The front cover for Who Can Care For Me Now? is a very simple design. The backing colour is a bright and eye-catching being post box red. The title is in white taking up the top half and then there is two curving round a heart; the outline is in yellow. Below that the author’s name in black. I personally think the image of the heart being cupped by two hands say it all really.
On reading the blurb of this book I know that it was going to be an emotional read and I was right!
Who Can Care For Me Now? is Elizabeth recounting her and her dear brothers journey from his unexpended collapse, the care he received through out his illness, the issues she faces trying to get Norman the care he deserved and ultimately getting Norman home with Elizabeth and her husband.
I have to say there were a lot of bits through out this sad story where I found myself crying; because alough Normans sister did all she could do for her brother some of the care he received in the NHS care system was awful. I was shocked to read how information on care etc is not widely given which seems madness, Elizabeth had to find things out by herself making an already stressful and emotional situation even more so. We all know that our NHS is under a lot of strain but I’m so glad that Elizabeth has written this and I sincerely hope the powers that be at the NHS read it also and learn from it.
I can’t say I enjoyed reading Who Can Care For Me Now? for obvious reasons; however I do think this will be helpful to anyone going through something similar, the NHS as a whole and care organisations.
Thank you Elizabeth for sharing yours’ and Normans sad journey with the world and hope it goes some way into bringing these issues to light.
Marie’s Book Boutique gives
Who Can Care For Me Now? by Elizabeth Orr
4 Sparkly Stars
Don’t forget you can always follow me on:
Now Elizabeth has kindly written a guest post. So I will hand you over to her.
FIVE THINGS I LEARNT WHILST CARING FOR NORMAN
For me, it is fair to say that caring for Norman was a life-changing experience on many levels. Even today I continue to be shocked at my own naivety regarding coping with the care of Norman once he fell so ill. I had no idea how devastating and debilitating brain disease could be. It seemed that overnight Norman’s mobility was stolen by Mother Nature – how cruel she is! He could no longer walk, stand, hold his own sitting position, turnover in bed, or cut his own food up. He was now 100% reliant upon others to live. His prognosis was poor as he was unlikely to improve. Overnight, our worlds were changed forever and I was forced to come to terms with the extent of my own naivety – some of which I share with you below:-
Fortunately Norman had made a Will but neither he nor I had considered Lasting Powers of Attorney for either Finance or Health & Welfare. Not having these documents plagued me throughout my care for Norman. Sadly, it was only Norman that suffered as one of the effects of not having Lasting Power of Attorney for Health & Welfare was that Norman was constantly subjected to Mental Capacity Tests which put him under incredible stress. I learnt the hard way as to how important these documents are. If I could turn the clock back I would, most certainly, put them in place before Norman fell ill and have already done so for my husband and myself.
NHS Continuing Health Care
My naivety extended to NHS Continuing Healthcare – I had never heard of it and had no idea of its importance, especially to someone as ill as Norman. The importance is that if you are found eligible for NHS Continuing Healthcare, your care will be fully paid for by the NHS, but if you are found not eligible and you have funds over the limit you will have to fund your own care. Norman was found not to be eligible and at the time, I believed every word I was told by the NHS. However, after Norman had passed away, I was pointed in the right direction regarding NHS Continuing Healthcare. I researched the subject myself and after following the NHS procedure right through to Independent Review Panel and winning, I now regard myself as fairly “informed” and I have great sympathy and empathy for those currently embroiled in the tortuous and emotional journey.
Wealth of Services & Information Available
Throughout the time caring for Norman, I was amazed at how much information is available let alone the numerous services all to help the disabled, seriously ill, and/or their carers. However, it still bemuses me today as to why these services are so challenging to discover. It seemed to me that I only learnt about them once I was unable to make use of them. Examples include “bed positioning”, and being allocated a “matron”, but there are many more.
Care/Nursing Ratios and Training
Whilst Norman was in hospital, the ratio of nurses to patients seemed unacceptable to me but that was the system. My heart went out to the nurses and doctors who were trying their hardest to care for the patients but forced to work under extremely difficult circumstances. How can an individual receive adequate care if there is not anyone there to care for them? In addition, so often I came across carers caring for Norman who had not been adequately trained to carrying out the specialist care he required.
Quality of Life and Psychological Wellbeing
When I reflect on our care of Norman, I am so pleased that I put his Quality of Life and Psychological Wellbeing first and foremost. I know that we were able to give him a far better Quality of Life and Psychological Wellbeing by caring for him at home. Even so, had I not been so naive at the start of this extraordinary and challenging journey, I could have achieved more and I hope by writing Who Can Care For Me Now? I will help others to achieve more than we did.