Contents
Enduring Power of Attorney
Mrs Lingham, a carer from Cambridge, wrote and told of her experiences
when setting up the Enduring Power of Attorney. Mr and Mrs Lingham had
excellent explanations, were treated considerately by their solicitor and
were charged under £50. In contrast their friend, also from Cambridge,
was charged £200 and had to ask Mrs Lingham to explain what the Enduring
Power of Attorney meant. Mrs Lingham's advice is to shop around.
Comment: Setting up the Enduring Power of Attorney is particularly relevant
in cases of our group of illnesses. Information on LawNet, solicitors specialising
in helping clients with dementia and supported by Help the Aged can be
obtained from CANDID, Help the Aged and the Alzheimer's Disease Society.
Coming to a decision on brain tissue donation
My husband has been in a nursing home for 5 months. For three hours every
day I gaze into his eyes and touch him to reassure him that all is well.
Imagine my surprise when the dreaded papers for donating brain tissue for
research arrived. I was trying to enjoy the sunset days of his life and
felt this was an intrusion.
However, I have out more about the procedure and I now know the real
facts about the autopsy. The body is left at peace until it is moved to
the undertakers. Then for one day it is removed to a hospital for a small
incision to be made at the back of the head to remove the brain tissue.
There is no visible alteration to the face.
Having moved from the unknown with all the accompanying fears, I can
now face the future and future generations in the knowledge that this now
fairly painless procedure is in the hands of the nursing home. Hopefully,
my husband and I will have helped further knowledge about Pick's disease.
Lucy Cozins
International Page
My husband Bill was diagnosed with Pick's Disease two years ago at the
age of 44. We had been married 24 years and had three children aged 23,
19 and 10 and two grandchildren aged 2 and 3.
An accurate description of my husband before he got sick is of a man
in good physical condition. He didn't smoke or drink and had never been
sick as long as I had known him. He was an outdoorsman, loved hunting,
fishing and camping. He had worked as a laborer in construction for 20
years and was a hard worker. He was a no-nonsense man who didn't talk alot
and laughed even less, but he was the kindest man I knew and he spoiled
me to a fault. He made my coffee and carried it to me every day of our
married life. He did his share of the housework and after 24 years of marriage
he still liked to surprise me with flowers for no occasion, a note left
in my purse or my favorite candy bar when he picked me up from work. That
was a side of him that most people didn't know. Most people saw him as
strict and unyielding. He was often quick-tempered and couldn't have been
described as a patient person.
That is why when he began behaving irrationally I just assumed he was
under a lot of stress because he had recently been fired from his job and
hadn't been able to find and keep another job for more than a few weeks,
having had six jobs in three months. Apparently he had been uncooperative
and spent a lot of time just idly standing around. That fact, more than
anything caused me concern because Bill would never stand around if there
was work to be done.
He was also having some memory problems about this time, often forgetting
what time I went to work or came home. He asked me almost every day what
time I would be home. He was having trouble telling time properly and for
the first time didn't know when his birthday was or how old he was.
His bad behaviour soon turned physical, at first just pushing the kids
and the grandkids or hitting them in the head, but soon became more serious
when he was arrested and jailed for shooting his gun in the air and threatening
to shoot the neighbour's dogs. Friends and colleagues no longer wanted
him around anymore and some of them refused to go on the annual deer hunting/camping
trip if Bill went along. He also alienated our daughters who weren't comfortable
bringing our grandchildren around anymore.
Finding out what was wrong with Bill explained a lot of things. I feel
that he was treated unfairly by alot of people, myself included, and there
is nothing any of us can do to change that. The one thing I am thankful
for is that he never knew what was wrong with him. I told him that he was
having trouble with his memory and he accepted that explanation without
question. His deterioration has been so rapid that it has shocked even
his doctor.
Life with Bill became a challenge that I wasn't sure I could live up
to. He attached himself to me like a shadow. His years of catering to me
was something he remembered and he still wanted to please me, but his presence
was smothering and I began to leave for work earlier, just to get away
from him. During the course of a day he usually made 20-30 trips back and
forth from our house to his father's, sometimes stopping midway and turning
around, as if he couldn't remember where he was going. This was in the
hottest time of the summer and he was wearing winter clothing, 2 flannel
shirts, sometimes a jacket, boots and a hat. He also carried an open umbrella,
no matter the weather.
Things went from bad to worse very quickly. He wasn't sleeping very
well at night and if he was awake he expected everyone else to be as well.
He had a fixation about shoes, wanting us to always have our shoes on.
He slept in his, taking them off only to bathe. He knew no limits when
it came to eating and used to stand behind me when I cooked dinner, taking
food right out of the pan an eating it boiling hot and tried to take food
off our plates. He developed a fascination with burning papers so we had
to get rid of matches in the house. He also put all sorts of objects in
the toilet - dishes, clothes, food - and would then flush the toilet over
and over trying to get it to go down. The most bizarre thing was when he
dug up our son's dead dog, put it back in the pen and took food and water
to it. Bill could no longer be left alone, but we were embarrassed to take
him with us. He thought nothing of walking into a stranger's home or of
urinating in the street.
Unless you have done it yourself, it is impossible to know how difficult
caring for someone with dementia can be. Bill was becoming a problem no
one wanted to deal with and his family had been telling me that he needed
to be in a nursing home. I knew they were right, if only for his own protection,
but being the one to make that decision was harder than anything I had
ever done. I couldn't bear the thought of him being unhappy and I worried
that he wouldn't be properly cared for. Knowing how little patience we,
as his family, had with him I wondered how someone who didn't love him
could be more patient. I have gained a new respect for caretakers in a
nursing home.
Adult day care didn't work because I was told after just a few hours
that they would not take him back. He had been agitated and walked ceaselessly,
having to be constantly barred from the door. Discovering how much he liked
to eat they tried to distract him with food, but not knowing that he has
no limit they overfed him and he became sick.
Finally it was a hospital social worker where I had rushed Bill with
a suspected overdose, who helped me make the decision. Having her make
all the phone calls and the arrangements made it easier for me. The next
day we took him to a nursing home and it was so hard for me to walk away
and leave him. The next day however, I was told that they couldn't keep
him there. He was too strong for them physically and they couldn't keep
him from escaping. They tried putting alarm bracelets on him but he tore
them off. The hospital agreed to take him back in their behavioral center,
which was a locked ward, until they could place him. While there they adjusted
his medicine to calm him down. After 10 days my insurance company was beginning
to complain about the length of his stay. Finding a place for Bill was
more difficult than we had thought. He was turned down by all the local
nursing homes and the only place willing to take him was the state mental
hospital two hours away and I had seen the place and would never have put
him there. Meanwhile a local home for disabled men agreed to take him and
he has been there ever since. The quality of their care is outstanding
and their concern extends to our family, as well s for Bill.
Our youngest daughter got married a year ago and he never even knew
it. His sister died a few months ago but telling him about it was meaningless
because he didn't even remember her name. I had to sell the farm because
I couldn't take care of it and was offered no help or support from his
family. My son and I now live in town and are doing well, although he misses
living on the farm. He has had to adjust to not having a father around
but the last year that Bill was home was such a trial for all of us and
he was more like a child than a father. I am hoping that our son will always
remember his dad the way he was before he was sick. He has a Big Brother
now who does the things that his dad can't do with him. He wrote me a note
a few months ago telling me that he knew being a single parent was hard
and that I meant everything in the world to him. I know that Bill would
be as proud as I am of him.
Mrs Vicky Brosmer, Dubois, Indiana, USA
PICK'S AND DIVORCE - ARE THEY RELATED?
Has research ever been carried out on the incidence of Pick's, or other
related disorders with early onset, and divorce? Usually one blames divorce
as having played a triggering part in dementia, but what if it is the other
way round? What if divorce proceedings start as undetected dementia?
Having recently heard of two such cases I started thinking back on my
own experience. It was not easy but if we want to fight to succeed, we
must not "let the sleeping dog lie".
Fifteen years ago, no GP seemed to have heard of Pick's or Alzheimer's
disease, and those who had kept it to themselves: the patient and relatives
were not informed. What was the use? There was no cure in any case.
I did not like to think about that brief moment when a thought crossed
my mind. I had been worried about Derek, but not about his health. The
family GP had assured me that there was nothing wrong with him and that
everyone lost their memory after 40… The day in question I went to meet
him at the station and he just stared at me and walked past to the end
of the platform as if I was not there. I caught up with him and I confess
I was angry. The train was two hours late, it was winter and I had been
waiting in the cold just because he liked me to meet him. I told him I
was angry only to be met by a blank stare.
More incidents occurred. I tried to ignore them but had a fleeting idea
that perhaps he was dissatisfied and longed for another life. Divorce?
Would that make him or us any better? I dismissed the idea. I also vividly
recall the day when an inner voice whispered: "we shall not grow old together".
Now I see it just as a sort of premonition because he was eventually diagnosed
as having Pick's disease and we did stay together until the end - only
he died at 57 and did not grow old.
Today I wonder: would there be a way of enquiring about divorce cases
where one partner develops dementia, not after but before the divorce,
although a proper diagnosis may occur later. It would also be interesting
to know how many people locked up in psychiatric wards have dementia. I
have a feeling we would then get nearer to the true number of early onset
dementias instead of some ridiculously low statistics.
Thanks Penelope for all your good work. The PDSG Newsletter is getting
more and more interesting.
Simone Davies, Poissy, France.
HOME ALONE - CAUSE FOR ALARM
My Dad was diagnosed as having Pick's disease about one year ago and since
my Mom died in June this year he has lived alone. At the moment he is quite
independent and goes off to the pub three lunchtimes a week for his lunch,
he gets himself up and will get himself cheese and biscuits. We generally
call in most days, but try not to let it become a routine that we then
could not maintain. I also take him to his club twice a week where he watches
snooker.
My main anxiety was him spending the day ill in bed and not being able
to call for help. He will not pick up the telephone even if he is standing
next to it when it is ringing! He certainly will not make a telephone call
himself. Because of this I have installed a simple unobtrusive monitoring
device. The whole set up cost about £120 and running costs are minimal.
The set up comprises a standard intruder alarm unit with an auto dialler
and a standard PIR room detector. The detector is fitted across Dad's bedroom
door and is masked with tape to narrow the beam down to just a few inches
wide. The red LED in the detector is removed so that it does not cause
a distraction or annoyance. A single cable then connects to the alarm control
panel.
Just one zone of the panel is used and the output signal is fed to an
autodialler unit. There is no bell and the internal sounder on the alarm
is disconnected. The bell ringing time is set as its maximum of 20 minutes.
This allows time to use the toilet and get back into bed without setting
the alarm off twice (it thinks its bell is ringing and won't automatically
reset until it thinks the bell has stopped).
The autodialler is set to dial a mobile phone with caller recognition.
The LCD display on the phone shows "DADS HOUSE CALLING" when the system
triggers.
Dad's routine is very simple. He gets up at 9.15am, goes out in the
morning, has a sleep in the afternoon and goes to bed at about 10pm. He
does not go into his bedroom unless he is going to bed. Other people with
different routines or differing house layouts may find more appropriate
locations.
The system dials the mobile phone but there is no need to answer it
because of the caller recognition. When I see that it is Dad's number calling
I just turn the phone off for a couple of minutes to allow the auto dialler
to make its compulsory three attempts. In this way there are no telephone
costs involved in running the system.
I can now go to work and by the time I've had my first cup of tea I
know that Dad is up an about. He had been telling me that he had a sleep
for half an hour in the afternoon but the system indicates that it's more
like two hours. Because of this, I am not so worried when he says he cannot
sleep at night. At night I could set the phone to silent operation to monitor
how often he gets up. The system is not infallible and it is certainly
not a substitute for visiting but it does give peace of mind.
An alternative to the PIR detector a pressure sensor could be installed
under the mattress of the bed. Refrigerator door micro switches could be
wired to the system to let you know that the person has opened the door
and will presumably therefore be eating. Detectors on external doors could
be used to alert the fact that the person is going out but remember the
system would trigger if they just put a milk bottle out!
A more sophisticated system could be used to give different messages
via the autodialler dependant on which detector is activated. This would
require a multi zone panel with an output for each zone. It would also
require an autodialler with the facility to send different messages dependant
on which zone triggered it. Such a system would be considerably more expensive.
It would also require the calls to be answered to hear the message and
so would incur telephone costs.
If you would like more information please contact David Hackney on 0121
7456010 or write to him at 171 Acheson Road, Shirley, Solihull, West Midlands,
B90 2JB.
David Hackney, West Midlands
GENTLEMEN CARERS
Why is it that gentlemen carers who look after their wife/partner with
dementia find it so much more difficult to "let them go"? By this I mean
to day care or respite care.
So often men have had to give up their jobs/career to look after the
person with dementia and in doing so turn that person into a new career
to compensate and fill the gap. It is very commendable on the whole, but
unfortunately isolates the poor woman with dementia. She becomes disempowered
as all the usual household tasks are taken over by her spouse. Handling
money when out shopping, buying clothes, presents, paying the milkman etc,
are all done for her: "Well it's so much easier if I do it, she gets in
such a muddle or she gets it wrong". So she doesn't even have a handbag,
that most feminine badge of office.
On the whole, women who are carers are more able to 'let go'. Is this
because they have often had children and therefore at regular intervals
throughout their life have had to see them move on? For instance to nursery
school, to college and then to marriage or partnership with someone else.
Fathers, of course, must feel loss at these times, but as a rule have not
been so involved with the nurturing. Women have had to be supportive but
know that ultimately they will have to 'let go' therefore empowering the
person to 'move on'.
Penny Chamont, Salisbury Day Centre.
Kathleen - Time to let go.
When I wrote the article entitled 'Kathleen - My First Wife' published
in our November 1995 Newsletter, I fully believed then I would be able
to look after Kathleen at home until the bitter end. She was, and is, the
light of my life and that is all the inspiration I needed. However throughout
this last year, as her condition worsened, I realised I was weakening somewhat
and took the precaution of looking round at quite a few nursing homes for
my own peace of mind. Very few offered respite facilities so it was almost
impossible to arrange a trial run, so to speak. Also, Kathleen, being only
61 years, was younger than most residents in every home I looked at.
I was fortunate to find a newly built home, catering specifically for
the mentally ill and not yet full. I booked Kathleen in for two separate
weeks during the summer. After the trials I decided that if it ever became
absolutely necessary, this was the home I would choose. I was hopeful somebody
else would take the decision and tell me when the time was right for her
to be placed there.
In the event people did tell me but I chose to ignore their advice.
I failed to see the signs which were so obviously there. I was always tired,
on a short fuse, could pick a quarrel with anyone and felt, not surprisingly,
so terribly isolated. The incontinence problem finally tipped the scales
after four consecutive nights changing bedding etc., and, almost in desperation,
I contacted Social Services for help, and they were magnificent. Arrangements
were quickly made for Kathleen to be admitted to the home, on a permanent
basis, the following Monday, 21st October. I had the support of our two
married children on the decision I had taken and we all got together for
a pleasurable but emotional weekend on 19/20th.
I took Kathleen in on the Monday morning and she seemed to accept things.
I called back later in the day and she was all right. I returned the following
morning and learned she had been found that morning lying on the bedroom
floor. Her new GP attended and it transpired she had suffered a stroke.
Her blood pressure was very high, something she had never been troubled
with before. She has lost the use in her right arm and can only walk with
assistance. I was upset and thought it was something to do with me placing
her there. However all the medical staff were quick to point out that Kathleen
would have had the stroke wherever she had been. I have not had much peace
of mind since. At first I was spending every day with her, giving her meals
and probably getting in the way of staff, who actually were very attentive
and concerned, as they are still. I visit her every day and it is well
worth the 25 mile round trip to see her smile, as she does most days for
me. She is awaiting a rehabilitation assessment in a nearby hospital where
physiotherapy and the like should help restore some use in her right arm.
I am looking forward to the day when she will be well enough to get into
our car again so I can bring her home for a few hours.
It's funny, I thought I would feel relief being on my own, not having
to worry about loo times and what Kathleen would do next if my back was
turned for an instant. It doesn't work that way though. I keep looking
at her empty chair, hoping one day soon she will be able to occupy it again,
if only for a short time. One tends to forget the bad times and only remember
the good ones, which is just as well. The Pick's Disease Support Group
has been wonderful for me, just meeting people from all walks of life who
understood to the letter what I was talking about from a carer's point
of view. The odd pat on the back from others helps enormously too as it
is very easy to sink into despair when you get taken for granted. More
often than not people will ask the carer how their loved one is but very
few bother to ask how the carer is doing. Kathleen's Care Manager from
Social Services knew I was upset when I asked him if he thought I was doing
the right thing in placing her. He explained that he thought of me running
in a race, which I had won a long time ago and ever since had been running
laps of honour. I thought this was a lovely compliment and it helped me
to cope with the difficult days ahead. I feel it is a great pity that GPs,
with their 5 minute appointment schedules and hospital outpatient departments,
with their conveyor belt type system, always seem to be in a hurry and
never have time to talk to carers.
Through my computer, which I still barely understand, I have been in
touch with people all round the World who read my first article on the
Internet. One particular friend in Canada, Peter, who cares for his wife
June, a Picks' sufferer, talks to me regularly via e-mail. June, quite
the opposite to Kathleen, has become hyper-active, hopping from one foot
to the other and always wanting to be on the move. Peter has reluctantly
taken the decision to place June in a nursing home in the near future.
There is no such support group as ours that he knows about and therefore
nobody, who fully understand the problems, to talk things over with. He
is coming to England next Spring and will visit me for at least a few days.
I hope to visit his home too but, being a hot-house plant, have told him
only when the weather gets warmer. The point is that, to coin a phrase
from Bob Hoskins' BT advertisements, "It does you good to talk". So please,
all you carers who feel lonely and perhaps, understandably at times, a
bit depressed, pick up the telephone and make contact with one of us listed
in the directory page attached to this newsletter. I don't promise we will
know all the answers but most of us 'have been there, done that' so to
speak and I guarantee that after making the call you will feel better and
know you have been speaking to a friend. There is much truth in the adage
that 'a problem shared is a problem halved'. Finally may I thank the PDSG
members who always seem to telephone at just the right moment to remind
me someone is thinking about me and that I am not alone with my problems.
PLEASE do not be alone with yours; telephone/fax me on 01298 815150, or
e-mail 106072.3000@compuserve.com.
I will respond to every call. My very best wishes to you all.
Mr Brian Coop
Meetings - Dates for your diaries
The next meeting of the PDSG will be on the 15th of January
1997 in the Victor Horsley Room which is the room used last time, in the
main part of the National Hospital. It will be held between 11am and 1pm
for informal contact and then the formal meeting between 2 and 4pm.
There will also then be a meeting for those people at the other end
of the country, in the Liverpool Glaxo Neurological Centre, on the 22nd
of January 1997 at 2pm. Penelope
will be attending this meeting and is looking forward to it greatly.
PDSG Seminar, 13 November 1996
You may remember reading in past newsletters that a consortium of European
doctors had decided to get together to study Pick's disease. They held
their first meeting at the National Hospital on November 14th and 15th.
Penelope took advantage of this concentration of brain-power to organise
a seminar for the PDSG, to let us know the latest research in the field.
The seminar was also held at the National, in one of the steepest lecture
theatres I have ever seen, and 39 of us, plus a dog, gathered to hear the
various speakers.
I'm told there will be more details of the talks in the next issue,
so I will be very brief here. Penelope opened the proceedings by telling
us the current membership of the PDSG, and talking of the existing and
future branches. Richard Harvey talked of his research into the prevalence
of young-onset dementia in two areas of Greater London, and the difficulties
he has had in collecting the data. The research is on-going, but it will
be very interesting to hear the results when they are available. Nick Fox
told us what the MRI scans that many of us have taken show; and how some
very complicated computer processing can pick up changes in scans taken
a few months apart. Florence Pasquier set up a memory clinic in Lille,
France, a few years ago, and told us about the problems and developments.
Finally, Martin Rossor explained the purpose of the European Pick's disease
consortium, and how they were hoping to at least agree on a definition
of Pick's in the next few days. Martin finished his talk by presenting
the PDSG treasurer with a cheque for £1800; the amount he raised
by running the London marathon last April.
The talks were all very interesting, and definitely worth travelling
to London for, but as far as I was concerned, the chance to meet many PDSG
members was as valuable; it was good to be able to put faces to voices
heard on the telephone, or via e-mail. The tea-break and after-the-seminar
conversations were also very worthwhile. I hope you will organise something
similar next year, Penelope.
<note from editor - there was a photograph of the cheque 'changing
hands' at this point in the original newsletter. However, this photo was
lost 'in the move' from our dementia.ion.ucl.ac.uk address. Sorry about
this, I will do my best to seek out the original photo from the PDSG archives
so that I can scan it back into this newsletter - John>
Helen Beaumont
Requests for information and contact
Traci Owens
PO Box 630
Huffman, TX 77336
USA
Tel: +1 (713) 324 4483
Traci would be very interested in writing to any carer of a young sufferer
of Pick's disease. Her husband Brian is severely affected with FLD/Picks
disease.
The PDSG also received this request back in June which may be of interest
to some of you:
"I edit the bi-monthly newsletter for the Greater New Orleans
(Louisiana, USA) Chapter of the Alzhiemer's Association (headquarters -
Chicago, Il). Over the past month, our office help line has received several
calls regarding Pick's Disease and I would like to use your fact sheet
in the newsletter.
I will credit your organization and indicate that the material
is copyrighted and used with permission. I will also give the web address.
Please let me know if this is all right.
Robin A Wagner, BCSW
rwagner@mailhost.tcs.tulane.edu"
Penelope's Gossip Corner.
Well I went to Japan and presented my poster. We have got some lovely photos
to prove it. Jet lag and heat did not really agree with me so I will no
longer feel envious of others jetting off and feel happy to stay at home.
The National Hospital Development Foundation which is the charitable
arm of the National Hospital has kindly agreed to let us use their charity
status. Our treasurer Mrs. Margaret Butler and myself are going to meet
with Mr. Paul Myer to discuss this further.
Data to which the PDSG had a major input was presented at the Hexagon
Housing Association Meeting on Thursday 28th November at Regents
Park College. Helen Beaumont also attended and there were several references
to the PDSG.
We continue to have new members every day and my target is 500 members,
so far we have 290 so we are well on the way. My initial target was 40
members!
I was extremely pleased with the support shown by members coming to
the seminar and will try and get a fuller report out in the next Newsletter
or let you know how to access the information.
All members based here at the National Hospital wish you a Happy Christmas
and New Year with lots of lovely snow.
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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