Alzheimer's update

The first thing most people say to me when first learning of June's Alzheimer's is "But how are you?"

I think this is probably an empathetic response based on their own experience with the disease either as a professional or someone who has been challenged with it more directly.

You see, to care for someone with Alzheimer's is not an easy process and it only ever gets harder.

When you love someone and witness their struggle but can do little to relieve them it leaves you quite numb and becomes all consuming. Much of the time you are grieving for a person who is still alive. The professionals all warn you that things will only get worse but you cling on to the faintest of hope that maybe it is a misdiagnosis and a miracle will happen. On a good day (haven't had one for some time) the glimmer of normality lulls you into a sense of false security and you find yourself celebrating the tiniest of successes only for the stark realisation to quickly snap you back to reality.

Doctors, nurses, psychologists and friends all tell me how important it is for me to have a life and not to let the circumstances overwhelm me. They mean well of course and as I say I understand that this is a natural response from people who know they cannot help the actual patient so try and do the next best thing. The problem is this disease makes you bare your soul and strips you naked of emotion. The guilt is always there. Why June, why not me or someone else who was less good than a woman who has only ever spread love all her life.

I often contemplate when June first showed signs of dementia and I have worked it out to be a fall she had in Weymouth two or three years ago. June fell through a bus shelter when she leaned against what she thought was a glass siding which turned out to be smashed. The fall itself was nothing major, a cut shin and abrasions to her head which the local hospital x-rayed and found nothing amiss, but June's reaction was just out of character. June is tough but she looked so forlorn when she staggered towards me and she cried like a baby. At first I thought it was just shock but as the day went on she seemed more and more distant and was not responding in the normal way to concern. June spent the next few days in bed and I was very worried about her as everything seemed doom and gloom in her mind. The GP thought it was shock but I knew it was more than that. I'm not saying the fall caused the condition, I just don't know, but I do know that nothing was ever the same again after the fall. June became terrified of falling, terrified of cars, terrified of Christmas. I found her sometimes saying "June and Trevor" to herself just as she does now. The ever present smile was no longer there when I caught her unguarded. Yes, the clues were there but I was in denial.

Since June was diagnosed officially just over a year ago things have worsened rapidly, almost on a daily basis. At this moment in time June can no longer cook, clean, shop, dress, bathe or leave the house and she is incontinent. All these things she could do to some extent at Christmas. Now a good day consists of getting up out of bed. It takes a lot of reassurance and a lot of cajoling. June is aware of her condition which makes it worse of course. We do not use the actual name, preferring to call it anxiety caused by memory difficulties, but she knows. She tells me every day she wants to die, she wants to shoot herself. She tells me that she has given up hope of getting better and feels she is only going to get worse.

She sees things and hears things that stop her leaving her bedroom. The kitchen is often guarded by some unknown entity. She used to try and go to the shops but invariably never made it past the porch. I asked her was she scared of losing her way home but she told me there was somone stopping her leaving the safety of the porch. The frustration is now etched on her face as she is such a dignified person.

The worst thing for me is the mood swings. If I forget to buy sugar I'm inconsiderate, if I show even a glimpse of frustration I'm accused of being evil. This is from a person who has no malice no temper and so it is at these times I am more aware than ever of her struggle.

Fortunately the Lord gives me strength and June and I together will overcome. What would I do without my faith? Well I'm trying to hold down a full time job as a writer/publisher. I'm dealing with printers, newspapers, retailers, wholesalers, salesmen and the media on a daily basis. June is always here by my side, often in the sofa bed I put up in my office to save me the walk to my bedroom! I don't know how the Lord works, I long since gave up trying to second guess Him, but I do know that all this is for a reason. It might be as the consequence of sin but I rather think it is something else, something too complicated to even express. God only gives us what we can endure. He knows what is best for us. That goes for me, June and every one of you!

Sun has it wrong again!

Just thought I'd mention that contrary to reports the 81 year-old gentleman who The Sun cited as having the world's lowest heart rate has tachycardia compared to my HR which often goes down to 24 at rest and sometimes has more than three seconds between beats, so erratically slow that the medics have advised me to have a second ablation procedure. I suppose it was an interesting story but frightens me a little to know that my low heart rate is out of this world!!

Shame on you Virgin Media

So my television went on the blink last week and I arranged for an engineer to come out the following weekend. I arrived home on Friday to be met by a very distressed June who informed me the phone rang and a "computerised voice" from Virgin Media confused her and asked her to press buttons.

Now, June suffers from Alzheimer's Disease and cannot turn the heating on and off or even the television so I understand why this was such a trial for her. I immediately rang Virgin Media only to be told June had cancelled the appointment! I explained her condition and asked why they had phoned in the first place and tried to arrange something so this would not happen again. VM were most unhelpful to say the least and when I suggested that their system needs reviewing they became even more rude.

It is not just the hundreds of thousands of dementia sufferers that could fall foul of automated calls but also children and a whole host of other minorities. I asked VM to remove my landline number and replace it with my mobile as I only use the landline to ring June and refer all other callers to my mobile - VM refused!

I paid for a television repairer to come out and sort the problem but shame on Virgin Media for their lack of understanding

A to Z of almost Everything (sixth edition) selling well

I received an email from the Telegraph today informing me that the A to Z of almost Everything had just become their best-selling book, overtaking Mary Berry herself - exalted company indeed.

It probably tells us something about the human spirit that despite my ongoing struggles with June's Alzheimer's, my heart problems and the death of two friends, Ian Prebble and Mike Carter (both from pneumonia), this news offered some succour.

Alzheimer's is a dreadful undignified disease and all I can say is June remains dignified - a woman who has spent her whole life spreading love to others and known by so many in Crawley as the smiley Welsh lady from the greengrocers and the hospital maternity.

My health is fine really albeit a little rundown. I had a cycle accident in December which set me back and then I contracted the Norovirus and a general virus which led to a routine ECG which showed my arrythmias had become dangerous. My GP insists I need another heart ablation and has put me on warfarin but I am holding out for the op until I see my specialist, the wonderful Dr Gandhi.

I was best man at Ian's first wedding in the 1980s. He was a great friend and training partner who was stricken by Parkinson's Disease a few years ago and had been in hospital since early December with the common complication of not being able to swallow (dysphagia).

Mike was a faithful friend of my fathers. He was husband to the lovely Megs, who is the sister of the equally lovely Beryl, my father's partner. Mike was one of those guys you couldn't help but like, quiet, unassuming and constant.

Ian was in his early sixties and Mike his late seventies.

My embarrassing meeting with the gentleman that was Roger Lloyd-Pack

As I was early for a meeting with my former publisher Alan Samson I recently popped into The Ivy for a bite to eat as the restaurant is next door to Orion House.

I engaged in friendly banter with none other than the dear departed actor Roger Lloyd-Pack.

I eventually said to Roger “If you ever write your autobiography you should call it And Don’t Call Me Dennis”

The dear sweet man hardly flinched but mulled it over and then said “Yes, that would be an interesting title”.

Later on I was relaying this story to Alan when he remarked “Surely you meant Dave not Dennis?”

OMG the great man (both great men possibly) must have thought I had lost my marbles.

Alan (bless him) commented “perhaps Roger thought you had come up with an ultra-clever title”

If only - but the truth is I acted more like Trigger than Trigger himself – what a plonker!

Hats Off to the Holiday Inn, Sutton

I’ve been roaming around doing all sorts of publicity work for the sixth edition of the A to Z of almost Everything and found myself in Sutton, south London this week.

After a meeting with the manager of the local Waterstones I walked back to my hotel room in the rain so decided to have a shower and eat in my room. I ordered battered hake and chips with mushy peas, an ice cream dessert and a bottle of champagne. An hour later I received a phone call from the manager advising me that the chef had sold all the hake so would I like to order something else from the menu. I decided on the Cajun chicken. I wasn’t in the least put out by this but when the young lady brought the order to my room she informed me the whole meal was compliments of the management.

Chapeau!

Apologies for late publication of the A to Z of almost Everything (sixth edition)

So the sixth edition of my A to Z of almost Everything has finally been published this year.

I apologise to all those correspondents who wrote/emailed me since the turn of the year as my initial forecast publication date became impossible for reasons beyond my control. When the October date came and went I stopped replying to enquirers as it became rather embarrassing. Every day for the last month I have been bombarded with phone calls from numerous independent book shops as well as virtually every Waterstones store in Britain. My frustration has been immense as the printer seemed to have one problem after the other all the time delaying things further. My former publisher, Little Brown, have been absolutely marvellous in providing the printer lost files (repeatedly) and have generally ensured the book eventually got to market this side of Christmas.

The good news is that the book was finally published on Monday 9 December 2013 and the feedback has all been good so far. The new A4 format seems to be popular and although the printing costs are considerably higher than the Crown Quarto format of previous editions I feel my readers deserve a larger less cluttered read. For the first time I have not made the cut-off point the turn of the year and so events up to the time of going to press are included.

My final apology is to anyone who is unable to purchase the book this month as demand has been higher than anticipated and Gardners (one of the two main wholesalers in the UK) sold out of stock within a day and Bertrams (the other main wholesaler) have only 200 copies left at time of writing. Another print run is now under way so all’s well that ends well.

As for myself – well I decided to go for an off-road jaunt on my new cross bike on publication day with my pal Tony and as I was crossing a wooden bridge on Tilgate Golf Course one of the slats disintegrated and my front wheel disappeared causing me to smack my face on the ground and whiplash my neck. I screamed like a baby as a jolt of pain seared through my neck and at the same time my right leg locked up in complete defensive cramp. My first thought was that my last remaining pair of glasses was broken so I was determined to get to Vision Express before they closed. As I staggered through the shopping mall I felt all eyes on me as one person after another asked after my wellbeing. I didn’t make it to the shop before the mall staff insisted on calling an ambulance as I apparently looked like the Elephant Man’s less attractive brother. Whilst awaiting the ambulance my glasses were dispensed and my faith in human nature was elevated a notch or three – we humans are good in a crisis. Four days on my ribs and shoulder is frozen somewhat and I have a mild concussion but I seem to have got away with it again and will be able to enjoy the winter ice rink we cyclists call on-road cycling in the near future. Incidentally, I must say a big thank you to my insurance company Allianz. I phoned to report my accident and they advised me that although I insure my glasses, I only have cover for accidents within the home. I happened to mention that I trod on my penultimate pair two weeks ago but didn’t intend claiming as I already had an insurance claim earlier this year after my mountain bike was stolen from my shed. Allianz not only insisted I claim for those glasses but also mentioned that a previous pair I broke last year should also have been claimed for and gave me leave to purchase two new pairs like for like. Heartening isn’t it.

Merry Christmas to all my readers and even if you don’t buy my books – WHY? – a very happy new year to you all and God bless us sinners – even all my atheist friends on the Mensa forum who don’t believe in my God but delight in discussing the non-existence of Him with me at great length and with great passion.