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Compass -

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Plagued By Memories

Sunday October 22 2006

Summary:

Dementia is a sleeping giant for aged Australians. Compass examines what happens when the twilight
years of old age are hijacked by the memories of the holocaust...

if you would like more information on the program developed for victims of the Holocaust, people
with Dementia and post-traumatic stress disorder you can contact:

Sir Moses Montefiore Jewish Home

120 High St Hunters Hill NSW 2110

Tel: (02) 9879 2777

Sydney Jewish Museum

148 Darlinghurst Road

Darlinghurst NSW 2010

Ph: 9360 7999

E: education@sjm.com.au

For information on support and advocacy for people with Dementia

please contact:-

Alzheimer's Australia

National Dementia Helpline 1800 100 500

Alzheimer's Australia Website

Story:

Good evening and welcome tonight to Compass, I'm Geraldine Doogue. A couple of months ago we
screened the powerful story of Australia's ageing war veterans some of whom were tortured by their
suppressed memories of combat. Well tonight another aspect of this largely untold story of ageing
and the long term aftermath of World War II. In this program we focus on a specific group of
elderly people - survivors of the Holocaust living in Australia. And how a daughter's experience
with her mother has led to remarkable changes in one nursing home.

Narr:

This is the personal story of one daughter's experience with her mother; It's also the larger story
of how their ordeal has transformed the way ageing survivors of the Holocaust are being cared for
in Australia.

Renée Symonds:

The day in the nursing home begins with the shower.

How come the resident became very very distressed what did that mean?

In all the normal every day things that can trigger the traumatic response because someone who grew
up in Australia and didn't have a concept of a shower perhaps being a place that was dangerous or a
place of potential extermination

Narr:

For many survivors of the Holocaust the horror has returned. It may only be in their minds, but for
them it's real. Old age and dementia are plunging a part of our elderly population back to a living
hell. How are the sufferers and their carers coping with this terrifying new condition?

For many survivors in this group, the onset of dementia can be horrifying. Not only can they lose
their minds, but they can be catapulted back in time, to a night mare - to the ghettos, the
concentration camps, the refugee camps. All it takes is a simple trigger, a normal everyday event,
which transports them to a place they can't escape.

Renée Symonds:

Tonia was very loving. She was a very loving mother, which I think at certain times I couldn't
appreciate. And of course from the holocaust background and awareness she was also very protective,
and often over-protective and I had to contend with that as I was growing up.

Narr:

Renée's mother Tonia lost her family to Nazi massacres in Poland but by escaping to Russia, she
eluded the same fate, only to be placed in a German refugee camp after the war. Like so many others
she never spoke of her Holocaust experience.

Alexander Symonds, Tonia's Grandson:

I'd only ever seen her in affectionate grandmother type terms. And I've never really seen the sort
of resilience or strength that took her from survival of the holocaust to Australia and things like
that. So I didn't really see that side of her.

Narr:

But, Tonia's husband did, they were both exposed to lifelong anxiety - a legacy of the Holocaust.
And when Max died, this role fell to her only daughter Renée. She soon had to deal with something
more, as she witnessed her mother slowly lose her mind to dementia.

Renée Symonds:

Soon after I think about a year or two after my father's death these symptoms began to appear and
for a long time I treated everything as in isolation I didn't actually see a pattern emerging.

I would go to afternoon tea with her and there was less attention to detail and there was food that
was left in the fridge and it would start to rot or there was less care with her appearance and the
dresses wouldn't do up, but there wasn't an awareness of it. She was less able to hold on to two
thoughts at once and things made her very, very anxious.

Alexander Symonds, Tonia's Grandson:

But I had trouble putting my finger on it. I was sort of 13 or a bit younger at the time. At the
time it was sort of a bit weird about what was going on and someone who was always solid and so
stable was making such radical changes.

Renée Symonds:

Denial can be very very powerful and I think that that operated in me for a very long time and I
would make excuses and I would say, oh she just forgot.

Narr:

In Australia there are nearly 35,000 holocaust survivors, and it has been identified that nearly
half of them could suffer from dementia.

This condition can be accompanied by the awakening of dormant anxieties, flashbacks and nightmares.

Dr Gideon Caplan:

There is a higher rate of dementia in holocaust survivors with Post Traumatic Stress Disorder so
they seem to be in some ways related There's many reasons why the experience of going through the
war, missing out on proper schooling, having a period of malnutrition where you weren't getting
enough food and may have been injured in some way these are things that can predispose to dementia.

Renée Symonds:

I would never quite know how I would find her if I would find her intact if I would find her upset,
if I'd find her disorientated. We never locked the bathroom in her flat there wasn't actually a
lock attached so she must have been quite forgetful or disorientated and turned the handle in a
particular way that locked her in and I think only her screams actually brought the neighbour to
some attention and then the neighbour called me and then we went to see what had actually happened
and she had actually locked herself in the bathroom. But for all that time the bathroom door had
never actually been locked.

Narr:

What Renée and her family didn't know was that they were not only dealing with dementia but latent
post traumatic stress disorder.

Alexander Symonds, Tonia's Grandson:

Someone who had always loved being a part of our lives and whose whole focus of their lives was our
life. And now she was kind of like very angry and talking these very fatalistic terms weighed on
mum. And to think about it is upsetting for me as well because it's like we only felt like, we
always felt like we had her best interests at heart. No one was doing anything to harm her.

Narr:

Eventually Renée placed her mother in the Sir Moses Montefiore Jewish Home

Renée Symonds:

What I didn't take in was that she was never going to recover and she was never coming home. And to
actually lose the fantasy that one day she would be okay was quite difficult for me and perhaps I
take on these things a lot more slowly but the realisation that this illness only went one way and
it was incurable and it was terminable was actually quite devastating but the length of the journey
and how it would be brought many many uncertainties for me.

Narr:

Worse was to come when Renée realised that placing her mother in the aged care home had in
inadvertently exacerbated her condition.

Once again she was facing the loss of her home, her family and her community, and of course her
privacy and freedom. This combination helped to progress Tonia's dementia further.

Her new surroundings, simple and ordinary, triggered something in her mind and the past started
taking over the present these were memories she'd repressed for sixty years. As her condition
worsened her grasp on reality was slowly slipping away.

Renée Symonds:

Before any of the major Jewish festivals she would get quite derailed especially before Passover
around Easter time I would notice that she was completely scattered and I in my head would think
I'm wondering what she's thinking is she thinking about who is no longer here and who she has lost
and I think for her it was absolutely true and that always remained as an unhealed wound for her.

The diagnosis I think of dementia is quite terrifying in the Jewish religion as well. Because every
festival that we celebrate is about memory so I think it's quite profound when the diagnosis
involves loss of memory and that the person becomes almost at the mercy of a wandering mind.

Dr Gideon Caplan:

Well what you see in many people with dementia is like peeling an onion, in the sense that the
layers of memory come off with the most recently put on layers coming off first. And then going
down through the past. And now that those other layers are coming off, or now that they have less
personality or less ability mentally to contain it, that the genie comes out of the box and the
reactions to that trauma now become much more apparent.

Narr:

The next stage of this form of dementia would test Renée and her family further as Tonia's fears
and massive anxieties deepen.

Alexander Symonds, Tonia's Grandson:

My grandmother would say to my mum even, that my mum was finishing what Hitler couldn't and that
she was putting the final nails in her coffin. And mum struggled with that, because it's that
feeling that you're doing what you think you can do to make your own mother better, but your mother
is saying you're essentially finishing them off.

And as she got worse and moved essentially down the ranks of respite care into the nursing home and
down into the dementia unit and to special care, she would struggle to know where she was and start
thinking back to events in the past and places in the past and people in the past. And then the
most painful step was when she forgot who I was.

Renée Symonds:

So when Tonia needed to be moved from the hostel because she was no longer managing to find her way
to her room or find her way to the dining room she needed to be moved to a dementia unit. At that
moment I was confronted by the palings and the thought that my mother Tonia was going to be in this
unit I don't know why exactly at that moment but the whole concept of being a child of survivors
and what that meant to me started to surface and I started to think about the connection for me and
the link to her.

I think I took up the plight of - well let's say my mother in particular and then the others. I
spent quite a lot of time in the unit. And I began to see them not as just other residents in the
home but to actually have a relationship with them. So it was trying to make some connections to
who they had been and who they were now. That they were not just dementing residents but they were
actually people with histories.

Narr:

Renée now had to witness the complete disintegration of her mothers mind and just watch it fade
away

Renée Symonds:

And I remember one day sitting next to my mother and there were residents around. And she wasn't
saying anything very much, but there was a lot of chatter around. And some of the residents started
to talk about their own histories, just spontaneously and a sentence would come. And then it was
gone.

Dr Gideon Caplan:

if you haven't found out about this problem, and it only comes out once they get dementia, then it
becomes almost inaccessible. You can't go to them and get a coherent telling of the experiences
that they went through in the holocaust.

Janine Grossman, Montefiore Home:

So my first encounter with survivors was in the Montefiore Home. And it was something totally new
to me. It was a new experience and they were presenting with very different problems to the other
ageing residents that we had.

Narr:

Fortunately , Renée's experience with her mother made her wonder was there a way to minimise these
traumatic episodes?

Renée Symonds:

I had to do something to survive myself and with some help I started to think about well what was
it that I could do and where was there a gap in this care and out of that became a thought that I
could write a program to enhance and help the staff manage our residents and that that would be a
constructive thing.

Janine Grossman, Montefiore Home:

I quickly learnt that she had the same passion as I did from her experience with her mother coming
in to the home who was a survivor. And knowing from her that she had recognised that the staff did
need the support and the training.

Narr:

Together, Janine and Renée were now starting to recognise the various triggers that caused further
anguish in dementia residents

For instance, it is quite typical for some residents to hoard food from the dining room this is an
apparent survival instinct, this is easy to understand if you put yourself in their shoes. In their
minds they are in the past in a Jewish ghetto where food is scarce, not a modern nursing home.

Renée Symonds:

Some would actually take food from the dining room and take it to their rooms and hoard it because
of course, when you were on the run or in the camps and you were hungry you didn't have food so
that there's always the need to know that there is some food and that you have access to it.

Narr:

Triggers are very different for each person some survivors are catapulted into concentration camps,
others in ghettos, or hiding from the Nazis.

With each resident the experience is different, and in every case needs to be identified to allow
the staff to best care for them.

With 500 residents in the home and 400 staff they needed to find the best way to make the home
work. Staff noted that some residents reacted to certain everyday smells.

Janine Grossman, Montefiore Home:

We have to be very careful of what antiseptic we use that it's not too strong smelling because a
strong smell of antiseptic can also be a trigger for a survivor

who has been deloused in camps so we need to be very considering of the fact of what the trauma was
and offer them the alternative they are more comfortable with.

Narr:

Janine and Renée discovered that another survey in a Jewish aged care home in Canada, had
identified a total of 36 clear triggers. Some of these were as simple as having an injection,
waiting in a line, or seeing a uniform.

But the two women felt they could take, the Canadian report further.

Janine Grossman, Montefiore Home:

There was a whole column, Renée and I felt that it was missing on giving the staff tips on how to
deal with those particular.

Narr:

And it helped carers to better understand the daily events and how to handle and help the
residents. It may also hold the key to minimising the use of medication.

Renée Symonds:

So yes I imagine that if we can help reduce the anxiety and terror the possibility would be to
reduce the medication.

Janine Grossman, Montefiore Home:

Carers in dementia units in particular are very special people with lots of patience. We need to
protect the staff as well. We don't want high turnover of staff, so we need to assist them to deal
with these things. High turnover of staff could also be an issue for our residents. I've mentioned
that it takes a lot of time for a survivor to trust a staff member. So if you've got high turnover
of staff and new faces that also causes problems.

Narr:

But they were faced with another problem. Only 5% of the staff were Jewish, making it difficult for
staff to understand the holocaust and it's continuing impact on survivors. Training was now the
issue.

Dr Gideon Caplan:

The aged care industry in Australia and in fact around the world depends on staff who have very
little training. The assistance in nursing to provide most of the care have a training that's
measured in weeks not years. And where a group of people have special needs such as holocaust
survivors, then obviously the training has to focus on those needs.

Narr:

Renée and Janine got the support of the Montiefore Home and organised training in cooperation with
the Sydney Jewish Museum. As part of training Staff meet voluntary guides, like Olga Horak a
Holocaust survivor.

Olga Horak a Holocaust survivor:

It's very important for you is to understand the word anti-Semitism and of course if somebody
doesn't know the word anti-Semitism we are here to explain how ugly it is. A very important picture
and this will prove to you how the little children were already effected, this little boy surely
did not know what he did and if you look at this picture here where you can see the crowd in mass
hysteria, absolute mass hysteria this is off course the tragedy which lasted for six years. These
few pieces here are just really exhibits which are very rare exhibits and this blanket here was
given to me after I was found in the grounds of Bergen-Belson half dead and half frozen, (points to
blanket) this is woven from human hair and recycled old fibre. You can see here original stars,
which we had to wear, one is in German 'Jude' the other one in Dutch 'Jood' and the third one is in
French 'Juif'. This is a very important image and can you see who he is? That's an SS man, you can
see the SS on the helmet. What does the SS man do to this Jewish man? He tries to torture him, he
tries to cut his beard, he humiliates him, demoralises him.

Narr:

Apart from being a revelation, this tour is designed to help and educate the staff to recognise the
source of potential triggers in their patients.

Olga Horak a Holocaust survivor:

Here I will show you exactly the scene you can see the cattle carriages this is where we were
pushed in, people died, people mourned, cried, children of course were hysterical, people had heart
attacks etc. and this is the way we were transported to Auschwitz. This is what Auschwitz entrance
looks like even today. This is the railway line you can see here, once the train arrived through
this gate and came out here we were immediately separated man from woman, here you can see the Nazi
guards and one of them is probably Dr Mengele they don't show his face here, who was in charge to
sort out people. We were shaved completely shaven everywhere, very humiliating, degrading and
hurtful. He had a laboratory where he committed the most inhumane experimentations, on twins on
little people and on young people. I myself was there with my mother together. My mother at that
time was only 39 years old. Unfortunately she did not survive... but they are facts given by these
people who survived of course very sad.

Renée Symonds:

And we see these in our residents, chronic states of anxiety, depression guilt about having
survived, nightmares, flashbacks, isolation, loneliness and social withdrawal.

Narr:

Renée understands it's a demanding excursion and before any thing else it's time to carefully
debrief Edwin, Ahou and Bronwyn before they return to the home.

Renée Symonds:

So the holocaust survivors have suffered the loss of friends, family and loved one's, the loss of
dignity, identity and self-worth the loss of wealth and processions and the loss of contact and
these come up again on entry to the facility.

Narr:

These days Renée continues to guide the ongoing program she started.

Renée Symonds:

We're having a look today at some of the issues that have come up following the tour to the Jewish
Museum and the program. What's really clear is that often the survivor cannot tell you I'm having a
very difficult morning I am going through a lot of very bad memories.

Carer:

Sometimes the story is just so sad that I'm talking to them and I'm just I'm crying I'm doing it
quietly but the tears are there and sometimes there are no words, that one can, there's just a pat
on the hand or a stroke.

Renée Symonds:

But that is very important isn't it to join them in silence, I think that's exactly the point so
that always in our language we leave room for them to tell us something more. How can we limit the
repetition of the suffering?

Each time I run a group something in me recovers a little bit from the trauma of the time, that I
did needed to place my mother in the home. If I help and can enhance the staff working with the
residents it is somewhat a recovery process for me as well. And personally I would love to see the
same sort of concept being translated to many different nationalities that we have here in
Australia, especially the Cambodians.

And I get very concerned about it that when our population age and hit the medical facilities do we
have the skilled staff to actually know that perhaps this is someone whose suffered or had a
traumatic past and do we modify how we treat them on admission to hospital and it's just something
that I contemplate and something to address in the general Australian community

Narr:

Sadly, Tonia finally lost her battle with dementia, however her mother's illness left Renée a
legacy, a case study for the future treatment of civilian survivors and refugee sufferers from war
trauma.

Alexander Symonds, Tonia's Grandson:

I guess my mum in a way is an activist, but I'd say that she didn't start off by going in and
saying: well I'm going to make this home much better. It was kind of like, this isn't working for
my mum, I need to go do something about it. And so I guess it sort of progressed from a series of
things she wanted to make better for nanny, into a stage where she is an activist.