Parkinsons - the slippery slope to dementia
To go to this eBook's Amazon page, where you can preview the text for free, or order and download a copy, go to www.amazon.co.uk and search for Parkinsons - the slippery slope.
I am delighted to host this book written by Bill King (a pseudonym) to keep his identity and that of his wife and relatives confindential.
There is a YouTube introduction to the book which you can see here: Parkinsons Introduction.
Additional material will be printed in subsequent editions and if you click here, you can see a sneak preview of any recently added stuff.A sequel to this book has now been published. Click here to see more.
This is a personal account of my experiences as a carer for my wife, together with as much advice and comfort I can offer to anyone confronted with similar circumstances. After the chapter headings, you'll find a couple of sample extracts from the book.
Two sample passages coming up.
The trouble about being a carer is that you have to juggle two different roles simultaneously, or alternate rapidly between them. And, as I had indicated, there couldn't be anything more polarised than a loving relationship on the one hand and a detached and skilled caring one on the other. There's another important issue which kind of fits in here, and that is the question of your expertise as a carer in the awesome presence of consultants and others who have had the benefit of years of training and experience in Parkinsons, dementia and related ailments. In your defence, you should point out that this is the first time you have encountered this particular situation and are making it up as you go along.
By contrast, the professionals deal with similar patients on a daily basis and take a lot as said which we cannot be expected to be aware of. On the other hand, even though you are flying by the seat of your pants, so to speak, you do accumulate and exploit a very great deal of personal expertise along the way. There is another element to this, which the professionals can tend to overlook. You too are an expert - in your sufferer as a person, and this can be crucially important to guiding their attitude to the sufferer and should feed into their decision-making. So my advice is that you should not be overawed by anyone. Ever.
None of this is easy, and it doesn't get easier. It is even more challenging when you encounter the ignorance of folk who have not come into contact with a volunteer full-time carer dealing with a situation like yours. Be tolerant of them, and above all, if they are prepared to listen, talk to them about the pitfalls, challenges and satisfactions involved. Yes, I did write 'satisfactions', as it can be very rewarding when your sufferer recognises, even obliquely, the hard work and love you put into your role.
REVIEWSI found your book interesting, engaging, entertaining, and at times very moving. What made it particularly poignant is the fact that I do of course know both you and your wife personally, and although you hid her identity I could clearly recognise the person that I knew so well. I am sure the written account only gives a flavour of everything you have had to go through, and all the pain that you suffered at seeing a loved one deteriorate in this way. Being able to put all this down on paper will, I'm sure, be of considerable benefit to others who might find themselves in this situation. (Murdo Fraser, MSP) Most of us think we understand Parkinsons but in reality we don't have a clue, unless you live with a family member and have to deal with everything it throws at you, every single day, as you watch your loved one change in front of your eyes. This is not an easy read in places and I found it emotionally challenging. I felt I was being re-educated, to my shame, as I was one of those who wasn't aware of or didn't understand the obstacles and difficulties 'Bill King' has had to contend with as he lovingly cared for his wife. None of us knows what lies in store for us, and perhaps that is for the best in some ways, but this book brings to the fore love and despair in equal amounts. I would have no hesitation in recommending you buy it and let others know about it. (Provost Dennis Melloy, Perth and Kinross)
I have just finished reading your book. Thank you for allowing me to share your experience. Having worked in a care home followed by a spell in home care, I have witnessed this scenario many times, also personally, with each of the main carers being brought into a hopeless situation. This has been a sensitive, touching read and an experience echoed by millions throughout the land, but you have given a little light relief and understanding to the harsh reality and the book gives a true insight to make others feel they are not alone. (LMG)
You have given your wife love by the bucket load. It is clear that it has been a love match. You have done your best. Will she remember this? Who knows, but you will know this and I sincerely hope it will eventually bring you some comfort. You have in the greatest way bared your soul as well as given information of great value. I cannot tell you how impressed I am with the content. For me, it strikes the perfect note. It is as said informative, touching and with the degree of humour necessary. I thought you expressed yourself very well. I am sure it will resonate with many readers (MH).