sufferers of alzheimer no there
you will remember how my name is also a few
seconds would be enough to cancel
what you have just heard if you
They were sick of alzheimer there
only the memory of mine would be missing
name I would miss that one
you ate today at noon
what you did this morning
people you met yesterday of
what you have studied a month ago the
trip you did last year
of the house where you have always lived and
of the road to reach it for work
that you knew how to make of the face of the
person who loved ta and children who
you had I had to become the
memory of my mother that before
stop talking called me mom and
see one thing and love your mother
or the father and wife or grandfather and love her
tenderly enough not to want it
leave in other hands but another
what and having to take care of and look after 24 hours a day
when he is not sleeping and aggressive he wants to do
the same things as before but it is not anymore
able do not want to wash no longer knows
eat and on the continent wants to go out
walks continuously insults or
he cries and you do not know why
she screams and you do not know why she wants her mother
dead 50 years ago and you do not know what to say
and always asks you the same things a thousand
times a day or no longer speaks
it does not recognize you is afraid of you and you do not
you can understand if he is ill or if he has pain and
the stories of dementia are similar
all dementia subverts revolutionizes them
existences that affects sick and
family
we are made of memory we are what
we are
for our history and the time that
we have lived and cia shaped and if the
thread of the memory of our life yes
breaks and some pieces remain or yes
they randomly retreat
what is of our identity and if
love relationships any kind
of love are made of shared memories
what about the relationship if those
memories are deleted if it comes to me
removed the memory of the time in which they are
became a mother as happened to mine
mother who will be of the love I feel
for my son and knew how many children I have
met desperate because the mother
he does not recognize them anymore
how many unbelieving or injured husbands or wives
to tell very tender love stories
no longer remember disappearances from memories
of the spouse but I talk about emotions while
dementia is a disease
certainly a bastard disease that steals the
life in which memory loss
it’s the main feature
but it is a disease with a slow onset
and sneaky with clinical manifestations
different that vary from person to person
and often at partial periods
balance occur flare-ups
sudden catastrophic that
destabilize the patient more and more
who for 24 hours a day must take
care of him becomes unattainable for
the victims of Alzheimer’s that state
of complete physical and mental well-being
that the ms in 1948 defined
how it was health, yes, I do not
I make a question of rights
a delay in diagnosis is enough
lack of therapy an indemnity of
accompaniment denied a reaction
catastrophic not controlled
the unavailability of the trustee
experienced a delayed hospitalization or
inadequate to destabilize
irreversibly the fragile balance
of a family affected by dementia e
the patient as any individual has
need for his well-being to see
respected their will maintained
their choices their own beliefs
to be able to live even ill according to i
own values has the right to reach
the certainty of not turning into tragedy
the life of loved ones and the
hope that their illness does not
weigh too much on their existences
right not to be stigmatized
derided abandoned never cared for
mistreated but today as 31 years ago
when I founded the weight of the soul
of assistance and we make it very clear
the protection of rights falls
substantially on the shoulders of the
family members and eau willingly
continues to play the role of a thorn
in the side of Italian welfare it is not
normal that in 30 years our system
of social protection that ours
health system have not yet
found the way to take charge of 700
sick thousand every thing today a
provision of alzheimer patients e
of dementia in general has been
conquered with a battle of i’m
petitions amendments strike of the
hungry appeals communicate to him from battle
for drug diagnosis centers for the
quality of assistance to promote
floors
despite this the taking charge of the
patient and exquisite prerogative of the
family of the caregiver that has become
such by chance at the age or with the
more different experiences without
preparation without tools nor
knowledge
it all starts with a conscious choice or
no obligation or free
to which you have perhaps gone from
emotional affective conditioning
perhaps from blackmail or imperatives of the
personal morality other choices do not
they seem possible and sometimes the same
registry position does not allow others
hypothesis
in any case it is an act
private responsibility
which unfortunately is done in total
loneliness the caregiver is perceived
as the sole guarantor of the well-being of the
sick as a sort of bulwark against
death and is crushed by the weight of the
work of the fatigue of the relative
uselessness of what can be done
of responsibility for life and death
that takes hold of him like that
love, love for spouses for i
parents or for a relative becomes one
condemns a life sentence too much
I often hear this said by the
caregivers of the sick are the arrests
domiciliari are in jail this is not
life
I did not believe to end up so we hope to
die early in most of the
cases are women those who cure in
many cases are forty and e
fifty years old that leaves in the world of
I work to never return children again
honor who decide to devote themselves to the
care of their dear sick because
the already vacillating family economy does not
can bear significant costs like
those of a regular carer or one
retirement home in many other cases
older woman 60 70 even 80 years
his wife, his sister, the sister-in-law
which seems natural to take care of
his dear sick but then when the weight
the help becomes unaffordable
it becomes indispensable to find out that the
pensions all together can not
bear the cost of a caregiver or
a line of hospitalization despite the
report ms 2012 recommend to take action
immediately to consider the
if a health and social priority e
national in all countries and for
invest in health and social systems
to improve assistance and services
for patients and their families
despite the London g8 in December
2013 reiterated that dementia of
alzheimer is a priority
on the global agenda for the next few years
and needs policies to support
of the innovation of the assistance of the
patients with dementia despite
the recent European alcohol action joint
recommend to all member states of
develop a holistic strategy
three-dimensional address to the
development of structures and organizations
assistance in Italy there are not
funding for the national plan for
the dementias even the chorea since 2008 has
a financed plan and france in
2009 invested 1.6 billion euros
in the dementia plan Italy instead in the
2016 is still firm to the statements
in principle it is not enough if yes
wants to draw a health policy
indeed a welfare worthy of one
constitution that excludes differences between
citizens and sanctions the right to
care for all must cease this
Italy two maybe three speed in the
as a citizen with maturity dementia
has less citizen rights with
Milan dementia which in turn is less
citizens’ rights with dementia that
lives in Bologna that in turn for less
rights of one of his sick fellow citizens
oncology must cease delegation
instrumental to volunteering
accompaniment of support for
families
we are comfortable because we do not cost but
when it comes to planning or
to decide
then suddenly ours
competence no longer needs to cease
the indifference surrounding dementia
that indifference that has induced 30
governments always respond to years not
there is money
as if the numbers of dementia do not
they were shouting at the emergency as if
the problem as a whole does not
represented a very serious mortgage
a triggered bomb waiting for co
break out on the future of our children
when we would be sick for now
as long as the memory keeps we try to
never forget that the civilization of
a people is also measured by
living conditions of his old ones do not
I wish I had to give that old man right
professor who told me a few months ago
see lady you should not wait
great changes because these
patients are considered by ours
institutions
only empty gaps
no I can not look for this and you
[Applause]
”
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