Typically,
in the first few days after a
stroke occurs, the key people
in
the patient's life are in
crisis
mode. The patient is often
semi-conscious
and has little
awareness of what
is going on. Doctors are
assessing
the patient's condition
and
working to stabilise.
At this stage, it is important that someone be identified as the
"patient advocate" who will be the
key liaison with the medical staff
and
be responsible for ensuring
that
relevant people understand
what is
happening and are able to
make
decisions based on adequate
information. In
the long term, the
patient
advocate is probably the
patient's "nearest and
dearest"
(e.g. spouse, parent, son
or
daughter, close friend), however,
in
the early days, it may be more
appropriate for someone else to
take this
role if the nearest and
dearest
are in shock.
Our first and most important early days advice is that you need to
identify who will be the
patient
advocate. This
person needs to
take on
the responsibility of
liaising
with the medical staff,
ensuring
communication
amongst the family
and explaining
what is happening to the
patient,
if they are able to
understand
what is going on. Ideally, the
patient
advocate will be confident
in
talking with all parties and
ensuring
that doctors explain what
is
happening sufficiently. (More information
about the patient
advocate).
Early days advice for the patient advocate when dealing with
medical staff:
If you don't understand what the doctors are saying, make them
explain it to you in lay
terms. Don't be afraid to
ask them to explain
it to
you again and again
in
different ways until you
understand.
It is
their job to
keep you
informed about
what is
happening in
a way
that you can
understand!
Get a notebook and take notes when the medical staff are
explaining
things to
you. Make sure
you
get any key terms
down.
This will be
reference
for you and also
help you
to conduct your
own
research on the
internet
afterwards.
Alternatively,
take a
recording device
and tape
what
they say so that you
can
replay it later (of
course,
you need to
get
their permission for
this).
In hospital, it's difficult to know when the doctors will visit.
Their rounds may be fitted
in around surgery or
clinic times. This means
they
may arrive early in
the
morning or late into
the
evening. At each
visit,
make sure that
you're
clear on when the
doctor
will next attend
and
ask for some guidance
around
what time they will
be
there. This is
helpful
for you and also
sets up
an expectation of time
that may help
you manage
them.
Early days advice for the patient advocate when dealing with
family and friends in
the first
few days after the
stroke:
In the first few days, it's best to discourage visitors.
Your
patient needs
lots of
rest.
Make sure that you
politely communicate that
it's
too soon for people
to
come into the hospital.
It's likely, however, that people will be concerned and want to know
what's going on. So it's
sensible to set up
a
communication
channel.
Email
is a good way to do
this.
Set up an email
group and
send out an
update
on a regular basis
(daily
or every second
day). I
found this to
be a
really useful way of
getting
my head around
what was
happening - as
I
tried to explain it to
other
people, I got it
clear in
my head what
was
happening. If you
don't
feel up to this, then ask
someone else to do
it, but
make sure it
happens - the
time spent
on this
communication will
reduce
the time you spend
answering
phone calls. I
also used
an SMS tool that
a friend
of mine had
set
up. I could send an
update
from my phone via SMS (or
on the
internet) and
anyone
interested would
send a
text message and my
update
would bounce back
to them.
This was really useful and
we were
getting a
surprising
number of
people checking
for
updates each day. (Check out the
tool which
only
works in
Australia)
If you need assistance with something (e.g. we had family fly in
from interstate and had
friends pick them up at the airport) ask. If you
have an email group (see
above), it's easy just to say what you need and
anyone who feels that they
can help will reply. Email makes it easy for
people to make an offer of
assistance where they can and not feel guilt
or embarrassed by being
asked to do something that they can't
do.
Here is some early days advice about how you can help the patient:
Be prepared to spend long days in the hospital. Your
presence is
important for
the patient,
but
you can't do it all.
Organise
the
immediate
family/friends
into a
roster to have someone sit
with the
patient (this is
different
to visitors).
Don't expect
to do much
talking. Just
sit there
and hold their
hand. When I was
exhausted, I
used to climb
onto the bed
and cuddle up
to give that
physical
presence.
Take
along something to
keep
you occupied (e.g. book,
ipod, hand-held
DVD
player). Make sure you
have
plenty of water and
something
to eat
through
the day.
Show them how many people care! Make sure that all
cards and flowers
are
displayed brightly
where
they can be seen
from the
bed. Print out
emails
received. If you
can, type
up the text
messages you
receive. Read
these out to
them each
day, if they're
not able
to read
themselves.
Perhaps
create a poster
and write
on it the names
of
everyone who sends
healing
wishes.
Bring in some familiar things from home. Photos of family
and pets
are a
good idea.
After the initial period has passed and the patient has stabilised,
it's appropriate to encourage
visitors. Here is some early days
advice on
how to
manage this:
Too many people at once can be confusing and generate anxiety for
the patient. Ask people to
let you know of their
visiting intentions so
that
you can stagger
visitors.
Make sure that
there is
rest time between
visitors.
Let people know that their visit may be disrupted by medical
interruptions out of your
control (e.g. a therapist
or doctor).
Let people know that the patient may need to rest when they visit
and that they will need to
respect this.
Set the expectation that a visit should last no more than 30
minutes.
How can family and friends help? Here is some early days advice:
Most importantly, understand that the focus must be on
stabilising
the
patient! Your
interest
and concern is
great, but
it is best if
you
make
contact in a way that
the
key people can deal with
in a timeframe
that suits
them. A phone
call in the
middle of
discussion with
the
doctor
doesn't help.
Better ways of showing your concern are email, SMS, cards,
flowers, etc. You can use
these mechanisms to send
multiple messages of
support.
Whilst your prime concern will be for the patient, remember also
that the immediate
family
needs support
too. They
need
your words of
support
too. Practical
help is
very welcome too and can
go a long way to
relieving
some of the
pressure/stress -
home cooked meals that can
be reheated, help around
the house, running errands
are good examples of
practical
things that you
can do. My
girlfriends
created a
roster
amongst
themselves to make
sure
that when I came home
there was a meal
waiting
and someone to
talk to for
as long as I
needed. They
catered for
the
family that flew in
from
interstate and gave
me the
shoulder that I
needed!
I am eternally
grateful to
them for their
love and
practical
help.
This website as a general information service. Please note that medical information provided on this website is not intended as a substitute for advice from a registered physician or other healthcare professional.
Whilst stroke-recovery-advocate has endeavoured to ensure that all information provided on this website is accurate and up to date, we take no responsibility for any error or omission relating to this information.
