Alzheimer Scotland Annual Conference 2017 slides.

1. 1
Good afternoon Everybody.
Thank you, Alzheimer Scotland for inviting
me here.
I’ve been invited today to tell you the story
of Betty’s Journey through her End of Life
Care.
So, let me introduce myself further…
My name is Muriel Reid.
I’m a Deputy Charge Nurse in a Medical
Assessment Unit here in Edinburgh. I have
22 years nursing experience in acute care.
With 1 in 4 people in an acute hospital bed
having some form of cognitive impairment
or dementia diagnosis, I meet people with
dementia every working day when they are
at their most vulnerable.
I am also a committee member of NDCAN –
National Dementia Carers Action Network –
a sister organisation of Alzheimer Scotland.

2. 2
The group has a core belief that carers
should be an integral part of the
planning and implementation of health
and social care policy and practice, and
that all professionals and organisations
should acknowledge carer’s experience
and unique knowledge of the person
they are caring for as valuable and
equal to that of the professional.
To be part of NDCAN you have to care for or
have cared for a person with dementia.
Betty was diagnosed with Alzheimer’s in
2008. Betty was my mum and, as you can
imagine, like any other daughter would be, I
was devastated. Even though I had
recognised signs of my mum’s memory
deteriorating. I knew she had dementia. But
still… to hear her doctor saying the words “
Your mum has Alzheimers”…I can remember
that moment in time like looking at picture
frozen in a frame.

3. 3
I live in the Scottish Borders, my parents
lived near Stirling, an hour and a half drive
away.
As mum’s dementia advanced it became
clear we needed a plan for the future. Which
led to us building a granny flat extension to
our house.
Dad wanted to be independent and continue
looking after mum but have us close by for
support.
He also wanted my family life with my
husband and 3 children to carry on as it
was.
Mum and dad moved in in February 2015.
By this time mum was requiring full time
care. She now didn’t walk, needed
supporting with food, fluid and nutritional
needs and all her personal care.
So we had the perfect set up. My dad got to
be independent and live with his wife and
love and care for her and this he achieved
with the help of paid carers and the support
of family next door.

4. 4
It was at this point in the Feb when I got to
see my mum every day that I realised that
despite all my nursing experience I knew
very little about dementia. So I attended
Alzheimer Scotland Conference and that’s
where I met NDCAN.
In March 2016, it became evident that
mum’s dementia was advancing. My dad
had called the doctor to come and see mum
as she seemed feverish and I saw this as
the opportunity I’d been waiting for to have
the chat I’d been dreading but one I knew I
had to have.
The time had come to prepare for when
mum moved onto the next natural step in
life and her condition became terminal. I
wanted to plan for her to die well. But what
does that mean?

5. 5
Every day I work I see frail, elderly people
arrive into an acute hospital setting. They
have deteriorated at home, whether that is
their own house of a care setting.
There is a tendency to medicalise this
deterioration and use all our medical
knowledge and skills to try to prolong life
rather than support a dignified, peaceful
death accepting that life is ending for that
person.
They have progressed from the advanced
stage are now in the terminal stage of their
disease process.
I didn’t want mum taken to hospital for
unnecessary investigations. The journey to
hospital alone would be detrimental and
tests results wouldn’t change her prognosis.
The Chief Medical Officer’s report 2014/15
on Realistic Medicine talks about this.

6. 6
She explains… Realistic medicine is about
moving away from the “doctor knows best”
culture. It’s about more fully involving
patients in the decisions about their care.’
Scottish Government is working on the
Strategic Framework for Action on
Palliative and End of Life Care. By 2021
everyone who needs Palliative Care in
Scotland should get it. Outcome that’s
hoped for is to discuss and plan for future
decline and support families to do this.
So, sitting in the comfort of their home, my
mum, dad, GP and I had that conversation.
We felt it was time to put an anticipatory
care plan in place for mum so that when she
had a sudden deterioration, and say this
happened when the carers were in and I
was out, that they didn’t call an ambulance
but the GP.
We wanted mum to stay at home. Why at
home? It meant mum stayed in familiar
surroundings which is so important for a
person with dementia.

7. 7
It also meant we could all be with her 24/7
without travelling, being in comfort so we
could look after each other as well.
We were following what mum had done too.
She nursed her own mum thru End of Life
care at home.
When I was 8 my Aunt Bessie came to die
with us and mum nursed her through her
end of life care too. We were naturally
following mum’s example.
My parents celebrated their 50th
Wedding
Anniversary on Friday 15th
July and on the
Sunday morning the carers found mum very
difficult to wake up.
A sudden but expected deterioration had
happened. The GP was called and knowing
the anticipatory care plan was in place and
that our wishes were for mum to stay at
home everything kicked into place as it was
supposed to.
Discussing this in advance had removed the
uncertainty of what to do next.

8. 8
Unfortunately I was on holiday in France
with my husband and children but we got
back in time to spend a week by mum’s
side.
We all got a chance to hold her and say
goodbye.
 I sat talking to her
 Playing music
 Holding her in silence
 Just being…
 the children popping in and out, so
normal, so natural…
 until her peaceful and dignified death
on Sun July 31st
.
 She died in her own bed, with my dad
and us with her.
 It was such an incredibly intense,
beautiful moment, such a perfect way to
die.

9. 9
What support did we need as a family to
allow mum to Die Well?
 Knowing what mum wanted. How she’d
want to die. When do you have that
conversation? I don’t know? Some
people will happily talk about this, its
becoming more common to plan your
own funeral. When is the right time to
discuss this with a person with
dementia? We didn’t with mum. We did
as she had for her own mother. How
she’d cared for her own parents.
 Knowing Dad could be looked after too.
He could be with mum all the time but
making sure he was eating and drinking
and resting to.
 All being together – siblings playing their
parts and us supporting each other to
deal with the situation in our own way
 My nursing knowledge around end of life
care. Being able to guide dad and
support him with difficult decisions and
ask questions so he was better
prepared.

10. 10
 Supportive GP Practice – willing to
support us with our decision making and
caring for us all
 District Nurse Team – visited before so
they knew an anticipatory care plan in
place and could support that and
implement it immediately. Plus provide
nursing care when required.
 Carers – my mum had the most amazing
team. They also supported our set up
and went the extra mile for dad to
support him too. They’ve become friends
to him as they still support him today as
his carers.
 Marie Curie sitting with us at night –
Margaret even brought her oil can and
oiled squeaky hinges!
 Not being in a hospital setting for me -
getting time to be a daughter not a
nurse!!
We had a plan in place and I will be
eternally grateful to the community team
that supported us through this time, and
made our plan a reality. A very positive
experience.

11. 11
The Message I want to Leave You With
Dying Well is as important as Living Well.
For a person with dementia knowing
their wishes are at the heart of decision
making.
Knowing what these wishes are whether this
comes from a conversation or from
experience of knowing them so well.
Anticipatory Care Planning. Dementia is
the No1 cause of death in England and
Wales and out of the top 10 causes of death
is the only condition with no treatment or
cure - YET.
The great thing is this is being addressed
now…but in the meantime, for the here and
now…when you can anticipate a
deterioration, its vital to plan for it.
So when this deterioration happens there is
no panic but a peace and a knowledge that
we are ready.
We are doing the right thing for the person
with dementia and their carers/loved ones.
Professional Support – GP, Nurses, Marie
Curie

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Betty. My Mum has inspired me to make
her dementia journey meaningful. I’m in
the process of becoming a Dementia
Champion to improve care for People with
Dementia and their carers in the acute
hospital setting.
I’d like to finish with a short video of Betty,
of mum, and dad, from around 2011. This is
how I like to remember her –
 she was so gentle
 loving
 great fun
 with a cheeky sense of humour.
Thank you….