Published by Helping Hands on
22 May 2014
Say it with a letter
I have attended a lot of talks etc. given/organised by charities and others, and it is the FIRST presentation where the speaker really understood what living with dementia is all about. I have been banging my head against a brick wall trying to get a wide range of people to talk about the many behavioural changes, 36 in my wife’s case, which we have to live with 24 hours a day, seven days a week, 365 days a year without anyone in the NHS or Charities showing the slightest interest in us as individuals.
My biggest gripe is that almost all of the “experts” haven’t a clue what it is really like. I have gone as far as writing my own 30 page booklet plus an 8 page addendum, outlining our experiences. I have issued over 100 copies free to both Carers and some of these “experts”. The Carers have welcomed it because I write about these behavioural changes.
We have also been fortunate in appearing on BBC TV (twice) and Radio (3 times- John Humphries Show, BBC World Service and Pick of the Week). I mention these only to show how enthusiastic I am to spread the awareness of what living with Alzheimer’s is all about.
Coming back to your presentation. It was faultless and so superbly presented. To hold the attention of an audience the size of this morning’s group for almost two hours is credit to you. I am the person who stood up at the end and said it should be recorded on a DVD and made widely available both as a marketing device and for sale to anyone who is trying to cope with dementia. It is so on the ball and packed with useful tips. Because Pat wanted feeding I could not stay for long after the formal part of the morning ended. However, in the short time we were there, nearly half of those present came up to me confirming their support for my suggestion.
There is no doubt in my mind that when the time comes where I need external help – I am currently well supported by a daughter and a couple of friends who look after my wife for a few hours to give me a break – it will be Helping Hands that I will turn without hesitation.
Very best wishes,