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With You On My Mind: A Personal Experience of Caring for Someone with Lewy Body Dementia

By Brian Hallett

When Jeanne became increasingly forgetful, Brian simply put it down to the ageing process. Gradually it occurred to him that it could be dementia, that it might be the onset of Alzheimer’s disease. He acquired one or two books on Alzheimer’s – just in case. 

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They were helpful but he realised that Jeanne’s condition had significant differences. In particular, it was hugely variable, sometimes by the minute.

He searched the internet for other conditions that related more accurately to her signs and symptoms which, by then, included paranoid delusions – particularly against himself. Anything that seemed relevant was referred to the medical profession. It was mainly the paranoia that confirmed the diagnosis of Lewy Body Dementia.

Brian searched for a book that would help him understand her condition more thoroughly, and how it might develop. None was forthcoming.

If you find yourself in a similar position – he has written this book for you.


Review sent in by, Mr J Morrisey in reader comments.

From Comment
2018-03-03 Paula .... When someone you love becomes seriously ill and disabled, you are catapulted into a new role. Becoming a carer involves managing medical appointments and medications, but it gradually expands to include looking after mundane household chores and communicating situational updates to family and friends. All of this is physically and emotionally draining, especially set against the desire to communicate love and affection to a spouse or partner whose fluctuating moods and temperaments may make this a constant challenge.
In his book, ‘With You On My Mind’, Brian Hallett has written an honest and touching account of his life with his wife Jeanne during her final two years of life. What began as forgetfulness ended with her death from Lewy Body Dementia which accounts for 10% of diagnosed dementias. Patients affected by the disease experience confusion, delusions, hallucinations and paranoia, the latter, in Jeanne’s case, often resulting in dark suspicions about her own husband Brian.
While describing Jeanne’s advancing illness and the pressures of his own role, Brian gives his own insights and understandings which will be of immense comfort and help to others in similar situations. Initially, Brian and Jeanne went to some lengths to keep her condition a secret, even to close members of their family. It was nine months before Brian shared the information with his family and he describes his huge sense of relief when he was now able to share the burden of support with them. Others have found that including close friends in the situation can also help share the worry and care. Brian gives excellent practical advice about granting Power of Attorney to the children of those in a similar predicament to ensure that the affairs of a surviving but disabled partner can be securely administered.
Carers will identify with the unremitting search for an accurate diagnosis and for the appropriate medication and dosage of same and trying to evaluate their side-effects. It took a year and nine months after she displayed earlier symptoms before an accurate diagnosis of Jeanne’s disease as Lewy Body Dementia was made. Even then, Brian and his family were given no literature or advice on dealing with her situation. It was this that inspired Brian to write his very helpful book.
The pressure of seeking out medical specialists and the frustration of evaluating their sometimes conflicting opinions are well-described, as are the constant searches on the Internet for information about symptoms and medication. What is striking, as is often the case, is the absence of one consultant or specialist who would take an overarching and holistic supervisory view of the patient’s condition, its evolution and medication.
Jeanne’s deteriorating medical condition is described in a gentle tender fashion. Running parallel with it is an honest account of the physical and psychological pressures on Brian as he became an overstretched carer trying to keep his cool and stay optimistic despite the burdens of caring for a very sick wife, shopping, cleaning, ironing, selling their old home and buying a new one and visiting Jeanne twice a day in the care home to which she moved later in her illness.
As might be expected, coming to terms with the death of his darling wife of fifty-seven years has not been easy for Brian. He has been supported by the unconditional love of his family. He has returned to his painting and has taken up a role as a volunteer guide in Poole Hospital. I imagine that he has found the writing of this book cathartic. He has certainly done the rest of us some service.

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