I’ve been thinking a lot about dementia this past week in no small part because Thursday (21st) is World Alzheimer Day which is an annual opportunity for the global community to reflect on the extent and impact of Alzheimer’s and all dementias upon our lives and on those around us.
I’ve spent the week at meetings including opening talks on re-shaping the cost model for care homes, as a member of the Alzheimer Scotland Long Term Care Commission, as a member of the Reference Group involved in drawing up Scotland’s next palliative, end of life and bereavement strategy and visiting a Glasgow homecare provider celebrating its 10th anniversary. In each and every one dementia has been in my mind.
On the edge of one such encounter I started to chat to Jane. She spoke to me this week about her husband whose Alzheimer’s is getting progressively worse. He was very unsure about venturing out, had lost a lot of confidence and his moods were increasingly unpredictable. Jane like countless thousands of family carers was knackered. She remarked that her husband when they went out nowadays always said ‘Give me your hand …’
Any parent reading that phrase will doubtless remember, as I do, the changing pattern of hand-holding which is the mark of childhood progressing into age. To begin with in nursery and early primary school there was almost an automatic nature to hand holding. A small hand patterning the need for reassurance and comfort would reach out to take yours. The sense of touch and comfort infused both. Then as the years went by the suggestion that not holding hands when others were about eventually gave way to dropped hands and ‘adult’ non-contact accompaniment which in turn disappeared as independence made parental walk redundant.
I was reminded of all this as Jane spoke to me about how her husband now reached out to hold her hand, to seek comfort and reassurance, to search for safety and the known in the troubling which a disease like Alzheimer’s brings to those who live with it and who love through it.
Give me your hand …might well be the call of those around Scotland living with today with Alzheimer’s disease. An invitation made to national Government who must surely start to right the wrong which has inflicted thousands whereby they have to sell all they own to ensure their loved ones are looked after in a care home. The Alzheimer Scotland campaign for fairness and yet the words of many like me continue to fall on deaf ears and unresponsive political reaction.
And lest my usual critics reply that self-funders are getting ripped off – the reality is by all independent assessment the true cost of nursing home provision in a nursing care home is around £1200 to £1400 which coincidentally is what most local authorities charge self-funders. Yet the rate the State pays is only £888.50 for a week of nursing care and £762.62 a week for residential care. If nothing else only £126 a difference when nursing is 24/7. Those doing the alleged ripping off are our political leadership of all colours and in most contexts.
Give me your hand … might well be the call of those frontline care staff promised £12 an hour by our First Minister in April 2023 and then told 20 weeks later that they would eventually get it from April 2024. Many are trained specialists in dementia care and support and hundreds every month are leaving the world of social care because of the perceived sense of devalue. Comparisons are rarely helpful but as one dementia carer said to me two days after the First Minister said wait till April the Scottish Government announced a pay increase for the police of 7.5% (and well deserved I’d say!) but far from having to wait till next April it’s being backdated to last April! That is economic and budgetary decision-making which prioritises some over another – simples!
Give me your hand …might well be the sentiment of those who are meeting yet another new carer in their home because the provider organisation that delivers the care and support either cannot recruit and so has to use agency staff or is stretched so thin that continuity and continuous care – so important for someone living with dementia – becomes impossible.
Give me your hand …might well be in the minds of those who live in care homes and all their families as yet another care home gives notice that it needs to close because of the inadequate level of public funding – the valued and excellent Erskine charity is having to shut down part of its provision. And yet central Government states it is not its issue but that contractual arrangements are between local government and providers. An ignoring of fiscal truth and public duty if ever there was one.
Give me your hand … might well be in the minds of the wider population as the Census returns this last week highlight the fact that over the last decade that the older age population in Scotland has grown by nearly a quarter. Let’s celebrate that reality of longer living rather than proffer talk of burden and challenge – but at the same time as we value later life living let us make sure that those who live with dementia in later life in Scotland can belong to a society and nation that really walks the talk of equality and human rights rather than pay lips-service to its most valued citizens in their older age.
Give me your hand is one of my favourite poems of Iain Crichton Smith who I often mention here. It describes the changing seasons of love and loss and might well be a descriptor of the autumn of living that many who live with Alzheimer’s go through. I hope as we travel through this autumn that somewhere sometime somehow our leaders in the civic realm will reach out a hand to hold up those who desperately need it and who live with all dementias.
Give me your hand.
Give me your hand.
The autumn has come.
We will walk under the trees in the one light that
is single as steel.
The trees are without crowns.
They have lost their silks.
The queens have left us.
They are without gowns, naked to the weather.
Give me your hand.
The cold has come.
You will feel in your bones that shiver of zero,
that posthumous kingdom.
The trees are like thermometers shining and
No sap is seen in them.
The sap has descended into the earth.
Give me your hand.
We are like children in an old story written by
Hans Andersen in the autumn.
Taken from ‘Modern Scottish Gaelic Poems’, Canongate Press, 2009.