I hope your post is seen by terry I have every sympathy - my mother died of Alzheimer's in Jan 2009 after a long illness.
But what I want to say to terry is aotu how I can join his campaign AND DO SOMETHING?
To Terry Pratchett
My 20 year old daughter and myself have been a fan of your books since the first one
But I want to know how I can join your campaign about a right to die when you choose and in the manor you choose
My mum recently died of Alzheimer’s and many in our family have but I & my husband sadly was also diagnosed with HIV at the too old age of 55.
We did not know we had HIV until my husband got AIDS. He was a seaman for over 30 years who picked up HIV abroad, did not know he had and so gave it to me in our middle age.
While he was saved initially and survived AIDS in 2007 his health is not good and who knows how long he - or I have as we both had late diagnosed HIV and 'officially' he was hospitalised with AIDS and I to ‘officially had AIDs before we both went on HIV medications.
I am sure anyone reading this who knows only what the general public does about HIV infection will say ‘what is the problem?’ with HIV meds people with HIV have a long and healthy life?’
The truth is ‘some do’ but it is still the luck of the draw to an extent and all people with HIV, even treated and controlled HIV, have a far higher change of getting any number of different cancers including liver, breast, cervical, prostrate etc, heart disease and dementia than the average person without HIV..
And also there is almost two illnesses. Those diagnosed early, within a couple of years and during the latency period before any significant and lasting damage was done to your immune system and brain, and those with HIV diagnosed late, sadly we were diagnosed very late.
Before the newest HIV drugs came about in about, many who were diagnosed late simply did not survive long even if on medication.
But since the invention of HAART ( Highly Active Anti Retroviral Therapy) around 2004 many more survive their initial HIV, but many go on to die and quite slowly, of other complaints or dementia ( as no drug completely controls HIV virus in the brain and the longer it is left to wash round the brain unchecked the more damage it does)
So while the HIV meds do work the good prognosis applies to those diagnosed while still in good health before their immune system has been compromised the prognosis is still not good for those diagnosed as older people and those diagnosed late and to die of AIDS is not a pleasant death
But more to the point for me a VERY large number of people with HIV get HIV related dementia and this is more likely the later your HIV was diagnosed and if it has gone untreated for sometimes like in both my husband I.
Thankfully my husbands brain functioning seems OK despite the fact he has been closer to death from AIDs than me, his mind seems unaffected but mine is not.
I know I have the beginnings of dementia, but although have asked time and time again to be tested the NHS say I am too young - 57 - but I know I have it & that it is
NOT my imagination !!
The sad thing is you do know when your mental functioning is diminishing long before it becomes obvious to others - and it is sooooo frustrating
Anyway I want the right to die in the way I choose and to make the decision before I am unable to. I have watch several members of my family go through dementia / Alzheimer’s
But theirs started much older than me as it was not HIV related, I have all the cards stacked against me now in terms of keeping my facilities for much longer - And selfishly I have no wish to follow them in to the death I watched them have and forewarned and much younger.
Nor do I want to put my husband through the situation of having to look after me in this state when he also has late stage HIV
How do I join your campaign – what can I do to help while I still can be of use?
Veritee VAE Reed Hall