Our Journey With Alzheimer's - by Campbell Duke
My daughter Natasha organised a 'Dementia Carers Awareness Meeting' at University Hospital Hairmyres on 25th August 2018 - and she asked me to open with my viewpoint as a "carer". Below is an abridged version of my speech.
My name is Campbell and that is just about all you need to know about me. More importantly … I am the husband of Anne Duke.
Anne is regrettably not able to be with us today as she is terminally ill and staying in a nearby nursing home. She has an appalling illness called Alzheimer’s. It is lethal.
What I shall say today is intensely personal and deeply emotional. My wife cannot speak for herself. I only hope that I, as her lesser half, can represent the trauma and devastation that has been wrought upon her by Alzheimer’s.
I am aware we are not alone – that we have no right to expect cruel fate to keep passing us by - there are other serious illnesses and some of them possibly worse – though I am seriously not sure. ... For there are no 'Alzheimer’s Survivors!' ... There is no 'remission from Alzheimer’s'! ... And, with full respect to those who may say otherwise, there is no 'Living well with Alzheimer’s'!
I am not here to offer hope! All I know is what I know and what I feel. Others may have a different experience – this is Anne’s and our family’s.
Let me start by telling you of “The Day of Anne’s Diagnosis”.
It began in 2013. For some time, we had been worried about her health. She had been checked for thyroid trouble - Negative! ... Depression - Negative! ... Stress and Anxiety - Negative! ... And so, in late 2013 at the youthful age of 55 she began to be gently probed for possible “memory problems”, with a faint whisper of dementia. Though surely not at 55!
At every step, had we as a family not forcefully pursued the matter, it seemed unlikely the NHS was particularly troubled. There appeared no rush for a diagnosis. Eventually, a SPECT scan was conducted at the Southern General – and then we waited weeks going on months for the result. We had to chase around the Southern General – Hairmyres – and our GP to see where the results were. It was Pythonesque, though even then nobody was laughing.
Finally, Anne and I found ourselves sitting in a non-descript room in the old Atholl House in East Kilbride - then home of the Community Mental Health Team. Eventually, a psychiatrist who we had never met before, accompanied by a Community Psychiatric Nurse, who we think we had met before, joined us.
It was a brief meeting. The psychiatrist looked at some notes and then focused her attention on Anne. “Anne," she said, “we have the results of your scan and I am sorry to tell you that you have Dementia with Alzheimer’s!” The room went understandably quiet.
Anne asked the psychiatrist, “How long have I got?”. The psychiatrist put down her papers and, saying nothing, leaned forward and gave Anne a hug. The room remained quiet.
Anne left the room in tears and the CPN followed after her. The psychiatrist and I sat looking at each other in silence. ... And that was essentially it!
I might add here – very briefly – that having been hospitalised with a heart attack, no doctor gave me a cuddle. They fixed me up and sent me home. That cuddle was human, and no doubt heart felt ... but I fear it was medical sign language for “NAE LUCK!”.
So, what has been Anne’s experience in the past 4 and a half years? Well, to coin a phrase, BLOODY AWFUL! I can’t sugar coat this. At first we tried the old Positive Mental Attitude – inspired this time by the Pythonesque anthem “Always Look On the Bright Side of Life!”. ... But that was a film. This has been our reality!
Despite our attempt at a bucket list – believing we had time on our side – the steady 'drip drip' of this baleful malignant illness took its toll. It became increasingly difficult to live a 'normal' life - and even in attempting to create happy memories by revisiting old and favourite haunts, all we were doing was over-writing previously happy memories with sad ones.
From March 2014 until January 2018 we found the support offered by the statutory and voluntary agencies woefully haphazard. And this may be especially so for those under 65. This is an intolerable case of age discrimination within the health and social care system. We found the statutory agencies to be almost non-existent, so that we had to fight with the aid of our local MSP Linda Fabiani to get 30 hours per week care for Anne – from voluntary agencies, some not even trained in dementia care.
I am so proud of our family and friends who, for four long and weary years, provided the bulk of Anne’s care – at least 138 hours out of a 168-hour week. You do the maths – we provided 82% of Anne’s care. ... CONSTANTLY AND ADEQUATELY. ... Nothing else was offered, largely because Ann was too young. Largely because nothing much is available full stop.
There is so much window dressing. We are a reasonably able family. Yet we could not find any significant help in East Kilbride. A google search promises much – but delivers little by way of substance.
Once I googled 'under 65 dementia resources in East Kilbride' and up comes a list of 'resources'. So far , so good! ... Until it turned out that the first 3 references were for the same voluntary organisation, that then catalogues their 'resources' across Scotland – including a Memory Café in East Kilbride, that meets during working hours; and an East Kilbride Carers Support Group which refers you back to the original voluntary organisation – that had already been unable to provide the hours needed for Anne!
The fourth item was REALLY interesting – it references “an East Kilbride family battling to raise awareness of early onset dementia after mum’s shock diagnosis”. ... You guessed it – "the family of Anne Duke", as they battled and bravely raised funds for the self-same voluntary organisation referenced in items 1-3. ... You could not make it up! (You'll forgive me for being cynical.)
Regrettably, and I do generalise, I have to say there is a serious disconnect between the glossy brochures and publicity blurb of local authorities and voluntary agencies, and their ability to provide services on the ground. If you are involved with any such organisation I simply beg of you – have the professionalism and the humility to gather in your executive meetings and networking conferences to ask: “What Is The Reality Of The Dementia Sufferers Life? And, are we actually delivering the services needed?” –be honest with yourselves. We are not getting the help we need for a scourge that has recently ranked as the NUMBER ONE KILLER OF WOMEN IN SCOTLAND.
But what of Anne and her euphemistically styled “journey”?
In early January 2018 she was ill with delirium and constipation. She was treated in hospital and then suddenly – out of the blue – the social work department stepped in and boldly asserted she was no longer able to be cared for at home.
Long story short?! After much anguish, and indeed threats to have her legally detained, we lost that battle. She now languishes in an, albeit fine, nursing home. The care system considers 'honour satisfied', undoubtedly at a cheaper price than having her cared for at home - and we and Anne deteriorate and diminish by the day.
This is not merely a “lack of adequate support” it is an institutional and societal disgrace!
That is why we shall continue to campaign. We owe it to Anne.
I shall close by quoting our daughter Natasha who writes a compelling blog called, "but Alzheimer’s is for old people..." (Irony intended.) You should read it.
“When did we decide as a society to offer no support from diagnosis, no regular check-ups, allowing families to struggle on and cope with this life changing illness, no support for the person with the diagnosis. BUT, we do it, because it’s my mum, my dad's wife, my nephew’s granny.
When did it become OK to have no support network in place for families, but as soon as things may become a little harder (we're talking almost 5 years down the line here) you don’t feel supported but like you are fighting for help?
When did it become OK to be scared to take someone to hospital for the fear of them being stuck in the system and knowing that this may lead to people who have had almost zero interaction with you as a family having the final say on how you continue as a family?
Mum, we want you home, so we can dance in the living room and do our own thing."
Please help us change the system!