Contents
As many of you know already, Penelope is away on sick leave. The other
nurses in the Dementia Research Group are covering her CANDID telephone
calls and Kate and Suzanne are dealing with the administration. Things
are very quiet without Penelope (!) but we hope she will be back at work
again soon.
You will all be pleased to hear that we have many enquiries about the
PDSG and send out copies of the newsletter every week. The mailing list
has grown and grown.
We would like to sincerely thank Mr Peter Davis who sent the PDSG a
generous donation in January.
The PDSG HQ and the Dementia Research Group would also like to thank
all the people who sent Christmas cards and for the words of encouragement.
We were interested to see that there was an open day on Friday the 7th
of March at Manchester Royal Infirmary on special services for early onset
dementia sufferers and their carers and we hope that some members of the
PDSG were able to attend. It was led by Dr Robert Baldwin and the Development
Nurse, Michelle Worthington. Michelle can be contacted on 0161 273 3049.
The Committee
It was agreed a couple of meetings ago that two people should step down
from the committee every year. This year Elaine McCusker (Chairwoman) has
resigned and so has Elizabeth Bryant (Committee Member).
At the moment the Committee looks like this:
Penelope Roques
(Secretary)
Ron Isaacs
Margaret Butler (Treasurer)
Jill Walton
Kate Homan (PDSG newsletter editor)
We therefore need a new Chairperson and two or three new committee members.
If anybody would like to nominate an
ex-carer or somebody whose partner,
child or parent is in long-term care, for membership of the committee or
to be the new Chairperson then please send your nominations to Penelope.
We will circulate information in the next newsletter in the event of more
than three nominations. We would be particularly keen to have a committee
member from Scotland.
Most of the committee's work is done by post and election to the committee
would not involve extensive travelling.
Next year we will be looking for two professional nominations.
Information Sheets
We now have various information sheets available on:
-
Pick's Disease - An Explanation
-
Essential Information for Caregivers
-
Recent Advances in the Genetics of Familial Alzheimer's Disease
-
Lewy Body Dementia
-
Primary Progressive Aphasia - What is it?
-
Swallowing Problems That May Be Experienced by People Suffering From Dementia
These can all be accessed via the World Wide Web. The address is:
(http://dementia.ion.ucl.ac.uk/candid/factsheets/)
Some have also been sent out with previous editions of the PDSG newsletter.
However, if you don't have access to the WWW and you or somebody you
know would like more copies please send an SAE to the Dementia Research
Group stating clearly which one(s) you would like and we will send you
them.
Meetings
for Carers, Ex-Carers, Friends and Professionals
Diary dates
The next PDSG meeting in London will take place on the 16th
of April 1997 at the National Hospital, between and 11am and 4pm, in the
Victor Horsley seminar room (main hospital).
The next PDSG meeting in Liverpool will take place on Wednesday the
23rd of April 1997 at 2pm, in the Glaxo Neurological Centre.
News on previous meetings
London
Despite the terrible fog for the last meeting in London several people
attended the meeting. PLEASE NOTE that amongst other things it was agreed
that since funds are available they can be used to contribute towards people's
travel costs to attend meetings. If you need help with travel costs and
you would like to know more about this, please put your request in writing
to Penelope Roques at The National Hospital in the first instance.
Liverpool
The third meeting in Liverpool was attended by 10 people, of whom 5
were carers and 5 professionals. It was an informal meeting with different
people attending to the previous meeting. Wide-ranging discussions took
place, exchanging experiences and all participants were keen to meet again
because they had discovered that far from being alone, they had many experiences
in common with other people there.
Meetings and Resources at the Glaxo Neurological Centre, Liverpool
Carers who attend the PDSG meetings at the Glaxo Centre are also invited
to attend the Carers of Younger People with Dementia meetings which take
place there on the 1st Thursday of every month at 7.30pm.
People in the north of England may also be interested to know that there
is a Clinical Nurse Specialist, Fiona Johnson, who attends the Glaxo Centre
on the 2nd Thursday of every month to take calls and visits
from anybody who wants advice or a chat. She can be contacted at the Glaxo
centre on those days on 0151 298 2999.
The Glaxo centre also has a number of resources which may be useful,
including a library and an information officer.
If you want any further details on any of the above then please call
the centre on 0151 298 2999.
When did this nightmare begin? For what else is it but a living nightmare;
seeing the person you love and have loved for years, change into someone
you do not know and probably if you met them for the first time now would
not want to know. This year is our silver wedding anniversary. For 20 of
those 25 years I had a husband who, even though we were not well off and
we both worked full time, would have given me the world if he could. He
was a true partner and we did everything together. He would always help
in the house, from hoovering to ironing and in all these years I never
had to wash up. That was always his job. But how life has changed.
When did this change start? And how? Looking back I can see the signs,
some so small I never gave them a second thought, such as the phone calls
which used to so anger my children. They would ring and say "Hi Dad. Is
Mum there?". "Yes, who's calling?". "It's me (Jacquie, Chris, Steve or
Joanne). "No, sorry, she/he does not live here now". He would not even
know the children. Then there were the messages I never got and the shopping
that was forgotten. Ken always loved to go walking but now he would not
know where he was. His whole manner changed very slowly to start with but
now he has changed beyond belief. Now, even though he is still physically
fit, he never does anything to help. He just lies in bed all day and every
day and would, if I let him, have me wait on him hand and foot, but I do
insist that he gets up for meals. Needless to say, because he sleeps most
of the day he is awake all night and expects me to be, and it is not unusual
for him to demand I get up in the middle of the night to get him a drink
and something to eat.
Ken was never a drinker of alcohol and despised people that did drink
but now I have to keep any drink under lock and key, as he would down a
bottle in one go if he got hold of one. He has in fact been arrested for
shop lifting in the past and before I gave up work to look after him, for
taking bottles of wine.
Some of the things he has done have made us laugh, others upset us very
much and others we have found hard to believe. The most bizarre was when
he went missing for 4 days. He just vanished with no trace of him. I was
frantic, nothing was missing, no money, his passport was still there so
where had he gone? Well, on the fourth day he just walked through the door.
What a relief but then where had he been? To Ibiza. How, I asked, you had
no money and no passport. But he had been because he had the evidence in
his bag. He had flown from Gatwick to Ibiza, travelled across the island
to San Antonio, where we have stayed, and then all the way back, never
having been stopped or questioned. Can you believe it?
The most upsetting was when he jumped from the bedroom window and fractured
his back. Also, if he slips away from you or escapes from the nursing home.
When in respite care all we have to do is follow the ambulance with flashing
lights because you can guarantee it will be going to Ken as he will have
had one of his dozen "heart attacks".
Well, all I can say is that life is never dull and I never know what
to expect next. But through all of this I have had the support of our GP,
CPMs and social services, not to mention Penelope and the National Hospital,
our local hospital, (Moorgreen) and Dr Rosenvinger and his team and I would
like to thank them all from the bottom of my heart, for without them I
would not be able to cope, nor would my wonderful children and their families.
To Dad
by Joanne Frost
I know it must be hard
The days must go so slow,
Living with a man
That you no longer know
He was once your life
And you his very cherished wife.
Now you look and see
If you can find the man he used to be.
Deep down inside you know
That your love will never go
As the days drag by
You realise that you are watching him die
But please do try
To see it from his mind's eye
He cannot make us see
This isn't how he chooses to be.
In his eyes the pain must be
Worse than ours can ever be.
I am sure he can see
The pain he is causing you and me.
We all really know
Our love for him won't go
We sometimes find it hard to show it
But we must ensure he knows it.
He has nothing outside,
except for us
He has nothing inside
except for our love
I want him to know
I want you to know
I want the world to know
That I love my Daddy so.
I don't want him to die
I don't want to say goodbye
I want him to know
I may be miles away
But I think of him every day.
Mum
by Joanne Frost
I would just like you to know
That I think of you also.
Every day I pray that your pain
Will somehow go away.
Your pain inside
Of all the things
You try so hard to hide.
The things you will
Tell no one
Not your daughter or your son.
We do try to help, you see;
but it isn't always easy.
We find it hard to say
"I don't know how to take your pain and fear away"
I understand how hard it must be
To talk to us, especially me.
Sometimes we might not always be there
But that is because we aren't fully aware.
But we do care
Even when we are not there.
I know that it isn't fair.
Even though you may feel very alone
You can always pick up the phone.
Dial away, anytime of night or day
And say what you need to say.
I won't judge or condemn
I will just listen and comfort.
What else is a daughter for?
If you have written an article, case study, or anecdote on any aspect
of caring, or have any comments on the news letter, please send it to:
Penelope
Roques,
The Pick's Disease Support Group,
The National Hospital for Neurology and Neurosurgery,
8-11 Queen Square
LONDON
WC1N 3BG
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