“The Greatest Challenge” Father Frank Daly (Director of
SPANNED)
There can be no doubt as to what is the
greatest challenge facing the Church in our pastoral work in this country at
the beginning of the 21st century – the advent and rapid spread of
the numbers of people presenting with different types of dementia. While this
condition has always been present in society the incidence of it and rate at
which it is now spreading over the last five years has reached what might be
called ‘epidemic’ proportions, and has taken all of us, particularly those
people who have to live with it and their carers, completely by surprise.
Wonderful people who previously played a leading role in our respective
communities such as reading, Eucharistic ministry, planning liturgies, cleaning
and so on have now been reduced to a state in which they appear to recognise no
one, even their nearest and dearest. This is a huge frustration for them as
they begin to lose hold on what they once had control of and then seemingly
‘withdraw’ into themselves, into another world where they have ‘switched off’
from any outside influence. For those who love them most this is the beginning
of what we might call a ‘double bereavement’ – ‘losing’ the person they once
knew long before they actually ‘lose’ them again in death.
We in SPANNED (which
stands for Supporting People with Additional Needs in the Nottingham Diocese)
who are about to celebrate the 40th anniversary of our work with
people who have learning difficulties or limiting and disabling conditions in
the diocese, have noticed a remarkable similarity in the factors of care for
our dear friends all those years ago and what has emerged in the situation of
those with dementia and their carers today. 40 Years ago, a person with
learning difficulties was officially referred to as ‘Educationally Sub-Normal’
(ESN) or ‘Severely Sun-Normal’ (SSN), which now seems unthinkable, and
certainly ‘mentally handicapped’, a term in common use then which we would
never dream of using today. At that time such a person and their families were:
1.
Not taken
seriously as ‘persons’, who had responsibilities, rights and choices to make of
their own
2.
Often
‘hidden away’ by their parents and isolated from Church and society for fear of
embarrassment or ridicule
3.
Their
carers, while struggling to look after them, were anxious to have some
‘respite’, even if only for a few hours, but at the same time not willing to
‘let go’ of the person into the care of others, as they felt he or she was
their responsibility.
4.
The carers
were ‘angry’ with God for the misfortune that had befallen them but at the same
time very possessive of the child they had to care for
5.
Sometimes
in what we used to call ‘the scapegoat syndrome’, the child was blamed for the
lack of opportunities families had to do the normal things that others did.
However, this was also a way of hiding behind the child and their difficulties
if the parents had problems themselves or did not want to do those things
anyway.
You could transfer
these observations almost exactly to the situation of people with dementia
today and their carers – it is quite uncanny. We have also found that this
situation has impacted directly on SPANNED and its work as many of our group
members have Down’s Syndrome, a
condition that years ago would have meant that a person would not live beyond
their 50th birthday. Now with the advances in medical science,
people with Down’s Syndrome can live well into their 50’s and 60’s, but are
also developing illnesses and conditions associated with the ageing process
including dementia. A whole new are of work and concern has been the result of
this development. Since in SPANNED, we try to address people’s ‘additional’
needs, there can hardly be an additional need of more urgency than this one, so
we feel that we should at least make some attempt to discover the scale of the
problem and suggest some means of helping people who have dementia and their
carers, and maybe, with other agencies such as the SVP, form a sort of
‘umbrella’ under which the work that needs to be done in the diocese can be
carried out.
Accordingly, in
February, every parish priest will be sent a questionnaire to ascertain the
numbers of people with this condition in his parish, and their precise needs.
This is with a view to getting some idea of the actual scale of the problem and
the actual needs of the people themselves and their carers. We need to look at
such matters as:
·
how many
people are living with dementia in your parish?
·
how are
they and their carers supported?
·
what
official provision is made for their care?
·
what are
the main problems that families encounter and would like help with?
·
who might
provide this help?
·
what
agencies and support services are already in existence in your area?
·
what help
is provided by other Christian communities and how might we work with them?
·
what can
we realistically do given our resources of finance and personnel to help?
Sometimes, finding out
what happens in one place may be a catalyst or encouragement to try to provide
something similar elsewhere. We are anxious to answer some of the great needs
that people have at the moment in a practical and constructive way, so if
anyone reading this article has any information to give or comment to make,
please feel free to do so by contracting me at St.Peter’s Priory, Leicester
Rd., Hinckley, LE10 1LW (Tel.01455 634443) or on Hinckleypriory@gmail.com
