Contents
Rita
- April 2002
I wrote about Rita in last August’s Newsletter, ending with my fears for the future and now I have to report
that this week she was admitted to an E.M.I. home and to my great relief, some of those fears have been
proved groundless.
After two weeks of respite care, the first in about twelve years of her Pick’s, I brought her home and
together we spent the night sitting on the landing because I could not raise her after she had banged her
face on the banister support and could only manage to shuffle about on her bottom. She has put on weight
as a combined result of my cooking, her inactivity and the under active thyroid problem diagnosed during
the respite care. My own physical condition meant that I could not cope alone.
Two difficult days later she had to be taken to hospital by ambulance with bowel prolapse but was soon
able to return home.
Rita had responded cheerfully to the young lady who, on four mornings a week, spent an hour washing and
dressing her, but I had frequently to deal with incontinence. At night I had to ensure that she did not
wander and fall down the stairs, and the time had come for permanent, professional care.
To my great relief, she went happily into Forest Lodge, the E.M.I home which is less than twenty minutes
walk from our house and where I can visit daily. She seems unconcerned that I am leaving her – and I
thought myself indispensable! There is the usual hugging and kissing and expression of mutual
adoration; but she now tells everyone that she adores him or her. She smiles as I leave and she wanders
around talking to other residents. They are all old, for at sixty-nine, she must be the youngest, and she
elicits no response from most of them, but she is undeterred.
My main reason for writing now is the hope that other carers, as fearful as I was, may find some
reassurance from my experience.
The future is still uncertain, of course, but for now the situation is better than I had dared to expect.
For my own part, I can sleep all night and, unlike some of the people writing in the current issue of the
Alzheimer Newsletter that, after caring for years they were at a loss for social contact and activity, I may
resume amateur drama work and I have many good friends. In fact, as soon as I have sent this to Carol
Jennings, I shall head for the pub. Cheers!
Leslie Laycock
Cup Cakes
Each of us will carry memories of our loved ones in the years to come. Memories that cover the whole
spectrum of our emotions, the good days the bad days, the happy times the sad times and yes certain
painful memories that still hurt ones that time seems unable to heal.
I had been seated at our table enjoying pleasant conversation with our close friends. Val, my wife was in
the kitchen preparing our meal. Never will I forget the look on my wife’s face as she stood at the kitchen
door. She was distraught her whole body was shaking and she held onto the door to steady herself. She
looked around, her face flushed and her eyes not totally focused. I jumped up, startled, wondering what
had happened. I walked over to her. Her eyes were brimming with tears and they met mine.
“David” her voice breaking “I’m so sorry I can’t cope can you please finish the cooking?”
I tried very hard to concentrate on the task in hand. Good friends whom I trust were comforting Val. I wiped
the tears from my eyes, which had not been caused by the onions I had cut just a few minutes ago. I again
surveyed the steaming pots on top of the stove. Had I everything on? My mind was in turmoil and yes this
hurt.
Many months ago I had foreseen that cooking would be a problem. Still in denial, Val had announced “I am
nothing like my mother”. Her mother had died of Alzheimer’s. “You come home to a meal every night”. Well
yes, up to a point.
Val had been a good cook and enjoyed entertaining. And yes, the kitchen was her domain.
Evolution not revolution is my way - take each day as it comes and aim to be accepted in the kitchen. That
was my plan, Val has a very sweet tooth and armed with a few cookery books gradually I made progress.
Was it easy? You got to be joking. I still smart when I think of certain situations. I am totally perplexed at
how stupid I have been on occasions and yes more than proud of some of the meals I have prepared on
occasions. As to disasters, well even now I have to smile at some of them.
I was very tired, dispirited having had a very bad day at work. I greeted Val and with some relief she seemed
to be in reasonable sprits. It was early days in my quest to gain acceptance in the kitchen so to be honest I
had mixed feelings when she said all day she had been fancying cup cakes. Yes I was tired but to be invited
to make cakes was an opportunity not to be missed.
I managed to find a recipe in a cookbook and off I went to the kitchen and was soon totally absorbed in the
task at hand. I lit the oven, greased the tins, and found myself enjoying the challenge. Carefully I measured
the ingredients, it was then I became aware all was not well. Val was in the kitchen, doors were being
banged, I watched as she opened the refrigerator but could not see what she took out. She was behind me
now but I became alarmed when I heard the oven door open.
“What are you doing?” I asked.
“Putting the dinner on. A roast takes a long time and I can’t wait for you!” Val was angry and had squared up
to me.
Even now I could still be surprised at her anger. No sense in pointing out that just a few minutes ago she
had asked me to make her cup cakes. I emptied the last ingredient in the bowl.
“Of course love, no problem” I managed to say quietly, took a deep breath and took my frustration out in the
mixing of the ingredients.
Val continued to bait me as she prepared the vegetables but I watched my tone as I replied in a friendly
manner, which at times took great effort.
“Oh dear” I said as I lifted out the cabbage leaf from my mixing bowl.
Thankfully I heard our front door bell ring, Val left the kitchen and soon I could hear her greet our very good
friend Mabel.
“Come in Mabel” she enthused. “Would you like a cup of tea?”
I had put the kettle on, I knew what was coming, and yes Val called out that Mabel was here, could I make
the tea.
I put my tray of cup cakes in the top oven as I waited for the water to boil and smiled as I heard Val tell Mabel
I was in the kitchen baking.
“Perhaps we shall have a cake with our tea.”
Once the tea was brewed I put the cups on a tray and carried them through to the living room and sat with
Mabel and Val keeping a careful watch of the time.
The allotted time for the baking of my cup cakes was now complete so I left to check them. On opening the
small oven door I was pleasantly surprised to see my tray of cakes nice and uniform and a lovely colour.
Pride comes before a fall.
I realised all was not well when I took the first cake out of the tin. It was so light and smooth and nothing
like a cup cake. I was now very tired, dispirited and very annoyed with myself. The melted fat was still in the
microwave. I tipped all the cakes into an empty bowl and went back to admit my disaster.
It was proving a tiresome day. Mabel had gone and I switched on the television to watch the evening news,
and fell fast asleep. Val woke me up and I was more than pleasantly surprised; she had prepared a full roast
dinner without my help, complete with Yorkshire puddings.
It looked very appetising and the meat proved tender and tasty, not always the case of late. I cut another
slice of meat and combined it with a Yorkshire pudding. It was while I was chewing this that I tasted
something sweet.
“Oh no” I though. “It can’t be!” But it was.
I had to suppress a laugh. Quickly I ate my meal leaving the Yorkshire puddings, then when finished I took
my plate into the kitchen and scraped my cup cakes into the bin.
David Pritchard
Terry's
Story
My husband Terry was aged 42 back in 1995 when he mentioned to our
G.P. during a routine visit
that he was having trouble with his speech. He told her that he couldn’t think of the correct words
to say and found himself stuttering during conversations.
A referral was made to a Neurologist and a subsequent brain scan led to a diagnosis of Primary
Progressive Aphasia. The Neurologist explained to us that this was a de-generative brain
disease affecting the language area of the brain and would result in a gradual loss of ability to
speak or understand language. He told us that this was likely to have a slow onset and its
duration may be decades.
That was how we understood the diagnosis - Terry would one day not be able to speak or
communicate but it was to be a long way into the future. We then went home and explained
things to our children then aged 16, 14 and 13.
From then onwards Terry saw the Neurologist at six monthly intervals and was also referred to a
speech therapist in the hope that exercises might prolong his abilities to find words.
Terry voluntarily retired from his work as a betting-shop manager in 1996 when he knew that he
could no longer cope with the demands of the job. He had hoped to be able to do some other type
of work but it became clear that this would not be possible - the ability to communicate was
proving to be necessary for most things.
Terry had not had a pension scheme with his job and we therefore become dependant on state
benefits and disability allowance for our income. I had a small part time job and was receiving
invalid care allowance for Terry. Despite this, it never occurred to me that I was a ‘carer’ - things
were just as they always had been for our family.
Terry was now at home and spending his time doing jigsaw puzzles - they kept him occupied and
he soon became extremely proficient at them. He always took a photograph of each one once
completed and took a great pride in showing them to any visitors.
He also grew vegetables at an allotment along with my father - our neighbours regularly sampled
his produce!
By 1997 Terry was no longer able to speak, using instead a notepad to write down anything he
wished to say, using both words and numbers. When he went out alone he carried a small card to let people know that he could
not speak but he could understand.
We were still determined to live as fully and as happily as we possibly could. This ‘Aphasia’ was
not a problem and Terry never once displayed any anger, frustration or depression - he was
content and we were happy.
In 1998 Terry was invited to attend a new group for younger people with ‘memory problems’ - a
group for people with early onset dementia. Terry attended for one day a week and undoubtedly
benefited from the social interaction. It also allowed me to continue to work for that one
this until late 1998 upon which time I felt that I needed, and wanted, to be at home for Terry as he
was becoming more dependant - it was now becoming more difficult for him to understand
things.
Terry had not had an appointment at the hospital for sometime as the original Neurologist had
left the job and it was not until two years later, in 2000, before he was seen again. The
Y.O.D. group
had advised a referral to a Psychiatrist who requested that a brain scan be carried out. An
appointment was also arranged with a new Neurologist who explained the latest findings from
the scan. Changes in Terry were by now very apparent and we knew that his illness was no longer
likely to be limited to the language area of his brain. The Neurologist told us that he suspected
Terry may be suffering from something known as Pick’s Disease, although this could not be
proved during life.
Pick’s Disease - a dementia - was something to be researched so that we could learn how to cope
from now on.
The Psychiatrist, who I had by now learned was a Psycho-Geriatrician, offered Terry day care for
two mornings a week at an E.M.I. unit. I was reluctant at first but Terry settled well there and
routine was by now what he needed.
As things became more difficult respite care was suggested but we knew that Terry could not
adopt to the change of routine - he did not understand and was so used to me. I bathed him,
helped him to dress and prepared his meals - if this were to change he would become
distressed. He could not accept care from anyone else.
Our family reluctantly faced the decision of long-term care for Terry in the hope that his
increasing need for routine would allow him to settle and alleviate later suffering. The only
facilities available were EMI hospital wards and a special unit in an EMI nursing home. We placed
Terry into the latter but brought him home again after just a few weeks as it proved to be
inappropriate for him.
Unfortunately Terry had to be re-admitted once again six weeks later as an emergency as he had
developed severe constipation and urinary tract infection and he was near to collapse. Terry
was placed into a different room from that previously, which caused him severe distress, and as
a result required sedation for a number of days.
Terry spent the next three months at this nursing home where he underwent severe neglect in a
most inappropriate environment. Moving him temporarily would have caused him yet more
suffering and I could not risk bringing him home again with the increasing possibility of re-
admittance.
The doctor in charge of Terry’s care told us that there was nothing else available for him and
Social Services could not find an appropriate facility anywhere.
We would not accept this and set about finding somewhere suitable for Terry to live.
During this time the Picks Disease Support Group Newsletter had advertised a new nursing home
in Milton Keynes registered for age 40 years onwards catering for sufferers of any kind of
dementia. I telephoned them and we visited shortly afterwards, being very impressed with the
owner’s knowledge and experience. A specialist unit such as this would not be cheap and I did
not have the financial resources to fund myself so I went back to the doctor to let him know that
we had found somewhere for Terry. The response was negative - the money was not available
and so the fight began.
Letters were sent to the Health Authority, Social Services, local MP and even the Health Secretary
and the Prime Minister.
The eventual result was a medical report being sought from another doctor leading to a case
conference with Health Authority officials in which an agreement was made for funding to be
available from both the Health Authority and Social Services.
Terry moved to Bluebirds Nursing Home in Milton Keynes on 25th July 2001 and although he is
continuing to deteriorate within his condition, he is receiving excellent care individually tailored
to his needs.
It is incredibly difficult for us all to accept that Terry has to live 70 miles away from his family but
the knowledge that he is safe and cared for helps us to cope. I cannot be with him everyday as I
would like, but visit him twice a week and take each day at a time.
I have also moved home and now live together with my mum and one son Kevin. When Terry could
no longer live at home our income was taken away leaving my son, who is now 20, to pay the
mortgage and bills. My mother has sold her home and paid off the mortgage in order to help us
over the financial burden incurred when illness strikes younger people.
I am very fortunate to have a close and supportive family as I can continue to commit myself to
Terry as I wish to do and can start to build again in my own time.
Penny Francis
Long, Dark Winter
Evenings
Bob’s problems started in the left temporal lobe with memory loss and increasing
communication difficulties. It is hard to believe that five years ago, aged 53, he was able to solve complex technical problems and run his own business efficiently. He now has
considerable loss of comprehension, does not recognise the words people use when talking to
him and uses only six nouns in his own speech. However, at least he is very affectionate and
seems to be much happier, perhaps because he is not aware of what he has lost.
The favourite day-time activity is to be taken out by car to a new area for a walk and a snack.
Luckily, he is still able to find his way around and is physically fit, so he is still able to go for a
long walk alone and has always come back so far. He refuses to carry identification or wear a ‘Medic-alert’
bracelet, and so has name-tapes with his name and telephone number sewn into all his coats,
jerseys and shirts just in case! He likes to follow me round the supermarket with the trolley and
enjoys helping at the check-out.
The key to a good night’s sleep is keeping Bob occupied most of the day, but indoor activities
are difficult to find. He does not recognise still pictures, is not interested in jigsaw puzzles or
games, can no longer read or write and does not want to draw or paint and does not like any
noise.
Music is only acceptable if played very loudly through headphones, while sitting in front of the
CD player. Bob prefers to listen on his own in a darkened room. He used to enjoy complex music
such as Wagner and Mahler, but now prefers much simpler orchestral pieces. Music chosen for
him must have a clear dominant melody and no words, such as compilations of light classical
pieces or film music.
Bob will also sometimes watch TV without the sound, for about half an hour. He likes good
snooker or football, some children’s cartoons with large characters, and programmes about
animals, but not birds. When travel programmes show landscapes, he likes to be shown in the
atlas where the places are.
Meals are the highlight of the day and also watching food preparation. He likes to help with
simple things such as table setting, repetitive practical things such as putting cherries on
cookies and removing food from the microwave when it when it ‘pings’.
Stroking and crooning to Honey, the dog, is also enjoyed. Bob has not taken her out alone since
he was seen wandering along a busy road with the lead and collar dangling, while the dog trotted along beside. However, he does enjoy letting her into the garden and
watches patiently for her return, so that she can be let in again.
We are about to investigate the use of different lighting effects, since Bob loves to watch the
sunset and cloud movement in the summer. Please, has anyone any further simple ideas that
might occupy someone with semantic dementia at home during the long winter evenings?
Val Bywater
Email: val@pdsg.org.uk
Rita was all things bright and beautiful. Now, despite Pick’s Disease, she is still beautiful but the brightness
has faded. She had a senior teaching post in a comprehensive school and when in 1988, I retired at
sixty-five from the same school, Rita ten years my junior took early retirement so that we could stay
together. In forty-seven years of marriage we have rarely been apart. Now, instead of her looking after me in
my dotage, it is my role to be a full-time carer. Carer: that word I now use as a matter of course, whereas in
the early years of Rita’s Pick’s I was unwilling to accept it, just as I tried to keep from our friends the fact of
the illness. Now I am grateful for the understanding and help of some of those friends.
Only after we had retired did Rita admit that she had been worried about her memory. Pneumonia in 1989
was followed by deep depression and mood swings ranging from ecstasy to fury and we sought help.
Sessions with psychiatrists, neurologists and other specialists in Sussex and at Hammersmith Hospital
were followed by tests under Doctor, now Professor Rossor, at the National Hospital for Neurology and
Neurosurgery and Pick’s Disease was diagnosed in 1993. Over the years we saw various members of the
Cognitive Disorders team, until Rita decided that the journey to London was pointless because the hospital
could not cure her and she refused to go again. It was Rita who suggested that PDSG meetings might be
supplemented by meetings to include suffers as well as carers and in consequence Penelope arranged
the Kew gardens afternoons, but Rita lost interest and forgot her suggestion. For my part, I quite miss those
visits – all the helpful people: Doctors Harvey, Fox, Cipolotti, Penelope and Jill Walton among others.
A complication in Rita’s case is Genetic Haemochromatosis diagnosed by Professor Summerfield at St.
Mary’s Hospital, but the level of excess iron has now been reduced by several years of
venesection, weekly,
then fortnightly, monthly, and now about twice a year, all administered at local hospitals.
Rita was a brilliant actress in the amateur theatre, having played all the major Shakespearean roles and
other parts in drama groups in Coventry and Sussex. Her last big part was in the Waltz of the Toreadors in
1990 and despite being desperately worried about her lines, never a problem hitherto; she performed
superbly as always. She sang too in choral societies and the church choir but she was obliged to drop that
source of great enjoyment.
Regularly reading a lesson in Church Rita, still an actress was much admired for her lovely voice and her
interpretations of the text. The congregation did not know that towards the end we had rehearsed at home
and she had little understanding of what she read; but they must have wondered why the rector escorted
her to the lectern. We no longer attend church and Rita seems not to remember it but I am grateful to her
fellow choir members, the choirmaster and the rector for their support while she was there.
There is no more drama work for either of us, no acting, directing, committee work, social activities. We go
shopping, Rita staying in the car while I load the trolley. There are regular afternoon visits to an all-day pub,
for routine is important to Rita, and her mixture of orange juice, lemonade and lime heated in the
microwave is accompanied by far too many panatella cigars, smoked almost incessantly. I would prefer
tea and a book at home to the pub in the afternoon.
Whereas some dementia suffers may be rude, aggressive even, Rita is charming to everyone and despite
not remembering them, or indeed, never having met them before, she will kiss them and say, “I do so adore
you”. She tells them they are very pretty, the men as well as the women and although some hefty young lads
may be a bit astonished so far nobody has objected.
Clothes: People who remember Rita from the years A.D. (Ante Dementia) recall her as glamorous. Now,
despite her having cupboards full of clothes (unused) her usual attire is at least two jumpers, track suit
trousers and outside, winter overcoat, woolen gloves and headscarf even in hot weather. In the morning
unless I am standing by underclothes will be out of place. The jumpers too are likely to be inside out and
back to front. Bathing her is becoming more of a problem but so far I am coping.
Vocabulary: Very limited, “Main meal” may mean dinner, breakfast, pub, car, cigars – anything. Hot means
cold or vice-versa. One of us cannot tell the time and that causes some friendly (just) disagreement for Rita
thinks it is me.
Respite: A number of kind friends are keen to help but when I have been granted a free afternoon Rita has
told them to go for she wants to take me to her pub. Latterly she has been very good about accepting
company in the evenings twice allowing me an hour or so out and once recently I was able to attend my
RAFA meeting. When I have an operation shortly, my niece will come from the Wirral to care for Rita. It won’t
be easy but she insists that she will cope - with my list of people to call on if needed.
I have some help. A young neighbour does the housework and ironing once a week and her father cuts the
lawn. The rest of the garden, and we have too much, is just left to go its own way.
Living on Ashdown Forest we were accustomed to walking for miles but now we walk from house to car to
shop to pub. Rita was a splendid cook and some of her cookbooks bear her notes suggesting variations on
the recipes. I tackle some of them, with varying degrees of success, occasionally even inviting
understanding friends to dinner, friends who understand Rita’s bizarre table manners, well armchair
manners, for she chooses not to sit at table even with guests.
Sometimes asked what Rita does all day, I can say that she smokes to Classic FM accompaniment.
Sometimes I selfishly watch a television programme in the evening, but she cannot understand the
dialogue. She sings along with chiming clock that hangs on the wall, the limit of her singing now. When I
am moved to song Rita laughs, well I am not Pavarotti but, “dash it girl” I say “what about a little respect”
more laughter, mutual, but she has not understood my words.
My great fear is that Rita will outlive me. Living without her would be grim but conceited though it seems,
and none of us is indispensable, she really does depend on me. How many dementia carers have faced
that prospect I wonder? So I am enquiring about nursing homes, just in case and a social worker is
coming next week to see what personal care can be given. That should be entertaining for despite all the
charm Rita is unlikely to welcome such help. I could be wrong: I hope so.
Leslie Laycock
This was our twenty seventh wedding anniversary and yes tinged with sadness.
I knew Val would not remember it and yes I had been guilty of thinking what was
the point.
Still, encouraged by our good friends Shirley and Barry to celebrate our
anniversary I had chosen a pub. Not just any pub mind you, but one in the midst
of the Hertfordshire countryside, a listed building renowned for good food and
fine ales. Barry certainly warmed to the place as he stood beside me admiring
the selection of beers on offer.
Shirley came over and whispered ‘I think we shall be okay’.
I had left Val with Shirley at the menu blackboard with relief I had spotted
amongst the extensive menu ‘Scampi’ advertised and I knew this is what she
would choose. Mind you she would still take at least five minutes choosing what
to have. ‘With a side salad, no dressing and definitely no mayonnaise’. Yes
I knew that order off by heart.
Shirley had gone to find us a table and once seated Barry had joined her
carefully carrying their drinks, I was left at the bar reminiscing thinking of
previous anniversaries when suddenly I realised Val was missing...
Shirley and Barry are very good with Val and I trust them but try as I may I
could not get their attention at that point. I looked around and simply could
not see her and the bar man was having trouble with the till, Shirley and Barry
were engrossed in conversation and yes I was now beginning to panic.
It was with such relief when I heard Val’s distinctive cough, I turned and
there she was just a few steps away directly behind me chatting away to a couple
seated at a table. Thankfully the bar man was at last making progress, the
manager had been called to fix the till and very soon I received an apology for
the delay along with my change.
‘Now to rescue that poor couple from my wife’ I thought.
Val could always chat to anyone and most would find it interesting, Val still
loves to chat but of late what she says is not so interesting and tends to be
very repetitive.
I walked over and gave Val her glass of wine thinking I would suggest we join
Shirley and Barry and order our meal as the restaurant was getting busy.
I was rather taken back when just as I handed Val her glass of wine the man
seated at the table spoke. ‘Hello David. As soon as you walked in I recognised
you, after all these years.’
I now looked at the lady seated at the table. Yes they did look a little
familiar, but as yet I could not place them. It was a role reversal to say the
least. Try as I may I could not put a name to the couple but gradually as the
conversation progressed I realised the couple had been to our house and knew
about all our cats. We had been registered cat breeders for many years. I
assumed they must have bought one of our cats. We had bred a lot of kittens over
many years. Even at the best of times it is not easy to remember people’s
names or their cat’s.
Thankfully Val was in good form and talked about our famous stud cats etc.
The only clue to her condition was when asked by the couple when the cat died
and Val would turn to me to give the answer.
We left the couple when their meal arrived. I was relieved things had gone so
well but still puzzled as to what their names were. Yes I could remember the
couple and even the kitten and the adult cat that they had bought. Yes the man
did look different with white hair. Mind you I had last seen him at least twelve
years ago. We joined Shirley and Harry at our table and ordered our meal. The
meal arrived and we were soon enjoying our food and pleasant conversation when
Val interrupted the talking ‘Merll and John’. That’s all she said then
continued to eat. I was well impressed – she had remembered the couple’s
names.
We finished our meal and Val with her sweet tooth was more than keen to
discover what delights were on offer for desert. I was seated with my back to
the wall in the corner and Shirley very kindly offered to go and order.
Shirley pushed back her chair and stood up and Val joined her announcing 'Let
me come and help’. I looked at Shirley, who nodded.
It was then I had a brain wave and called to Val. I took out my wallet as
Shirley and Val came back to our table. ‘How about buying...’ I had
forgotten the couple’s name that we had spoken to and gestured up the
restaurant to where they were seated behind a wall. ‘You know the couple we
spoke to when we came in’. Val looked up the restaurant then looked at me
puzzled. ‘You know the couple’. I pointed at the wall just as two elderly
ladies walked in. Val looked at me blankly, took my money and turned to follow
Shirley.
I just could not believe what happened next. The two old ladies had come to
sit at the table next to ours and were greeted by Val, ‘Can I buy you both a
drink?’
‘No Val’ I shouted.
The two old ladies looked at Val then at me. All three looked puzzled as well
they might and at this point I lost it. I offer no excuses. I got a fit of the
giggles and laughed ‘til my sides hurt.
Of course I felt bad. Val was totally confused and had sat down at a loss as
to what had happened. Try as I may it took me a while to compose myself. Barry
and I eventually made our way up the restaurant and ordered our next course.
Soon Val was eating her desert with relish, the incident now forgotten. It
was a good example of Frontal Lobe Dementia – how my wife could remember the
names of the couple from many years back but could not remember having spoken to
them that very evening.
It proved a good evening and yes it was also a good example of what my wife
has had to put up with for the last twenty-seven years. I admit I have a warped
sense of humour. It has got me this far and I feel that if ever I lose my sense
of humour that will be the time I will give up.
David Pritchard
Barry
Barry was 29 and I 22 when we married in the
Swinging Sixties. He was tall and slim and always on the go. I
never knew there was a genetic family illness, and I believe his
family did not realise there was one. His father, however, had
suffered greatly with Buergers Disease and had lost both legs
and some fingers due to amputations by the time I met Barry.
Barry's mother had asked the doctors if Buergers Disease could
be passed on genetically and the doctors said no. We married in
1964 and had one son born in 1967.
Not long after the birth of our son Barry
started on the first of his many obsessions. He was able to buy
Welsh books in London, and although he had not been brought up
to speak the language by his family, he taught himself, and
rapidly acquired a huge library of Welsh books. After that came
a craze for naturism. We had moved to Kent and there was a
naturist club nearby. Barry joined and could not see why we
should not all go to the club, despite my not being very keen.
He even booked a naturist holiday, which we went on under
protest, although I myself did not join in, having a good excuse
owing to the weather.
There then followed a much better obsession.
Barry discovered competitions. At first he only won minor prizes
like tea towels and aprons, but he soon acquired the skill of
writing winning slogans and teasmaids and television sets were
soon being delivered to the house. Several holidays abroad (to
Istanbul, Greece, South America and New York) followed. He was
entering 40 competitions a month in addition to commuting to his
job in London.
After moving to a larger house in 1983, Barry
seemed much quieter. We did not realise he was slowing down. He
used to visit the doctor frequently over various minor things
including his feet which developed corns and callouses. His
arches in his feet dropped. He soon had to wear specially made
shoes.
In the late eighties he was spending more and
more time in the bathroom and developed hand washing problems.
At the end of 1990 he had the chance of retiring early at 55
because the firm was being sold and were moving, although he was
offered alternative employment. He decided to take redundancy
and retire. At first, he was still out and about a lot, going
round the shops looking for competitions, but after a while he
slowed down and decided to do Bingo in the Sun newspaper
instead. He collected masses of bingo cards and spent a good
part of the day checking them.
This went on for several years. We did not
realise how much he was slowing down. By 1997 it was very
noticeable Barry had slowed down so much there was something
dreadfully wrong with him. He stopped feeding himself at
lunchtime or making hot drinks and he had difficulty getting out
of a chair. The GP thought it was an under-active thyroid, but
despite having two thyroid tests, this wasn't the case. I asked
the doctor what he thought it was and he indicated it was
something to do with the mind, but was not going to do anything
about it until I protested. A neurologist was suggested, but we
were told there was a waiting list of 9 months at the local
hospital. I was so worried, I said something had to be done and
all the doctor could do was write a letter for Barry to see a
neurologist privately.
This we did, and he arranged for Barry to be
scanned at Kings College Hospital in London. Afterwards the
private neurologist put Barry on Sinemet Plus, a drug used to
treat Parkinson's Disease. Barry started to improve almost at
once, and the occasional incontinence he also suffered from
seemed to clear up. I was told to give him one small aspirin a
day as well.
By this time Barry had stopped going out and
about by himself and waited for me to come home from work to
take him out. He liked going out in the car and round the shops
at weekends. We took him to Lanzarote every year. He had a
holiday in Wales every summer, a week down on the south East
Coast and sometimes we went to Wales at Easter as well.
From 1998 onwards incontinence was a problem,
but not all the time. I began to make sure he was wearing
protection every day. At the end of '98 the stiffness became a
severe problem. Barry had to use a small bath seat and then we
bought him a chair that lowered him into the bath. He was unable
to bath himself and had to be assisted at all times in case he
fell. He had a lot of falls due to the Parkinsonism. Sometimes I
would manage to catch him and prop him up, thus alleviating a
fall. I felt Barry was very lonely. He saw no one except for our
son and myself. I asked Social Services if there was somewhere
he could go etc. The only place that it was felt suitable for
him was the Bromley Branch of Alzheimer’s and he started going
one day a week, being collected in a mini bus and brought home
again at the end of the afternoon. This was increased to two
days a week before very long.
During our holiday in Wales in August 1999 we
attended at Manchester Royal Infirmary with Barry's sister and
family. His sister was also showing signs of mental
deterioration. They were very interested in the brother and
sister case and did some tests. It was found they both had the
tau gene.
After our holiday in Wales Barry deteriorated
further and was sleeping most of the day and all night. The
Incontinence Nurse produced some "bags" for him to
wear at night and these were very helpful. I had been getting up
several times in the night previously to take him to the toilet.
He could not be left to his own devices, as he would probably
spend the whole night washing his hands.
One night he fell over and hit his head on
the door latch which resulted in him being taken to hospital at
4am in case his head needed stitching.I reduced my working hours
to have a day off in the week to rest. I also arranged for a
nursing agency to send someone in at lunch times when he was not
at the Alzheimer’s day centre to make sure he took his
tablets. I had great difficulty moving him. I had to lift him
off the bed and out of chairs (and out of the car) and he was
very heavy. My right arm became very painful as a result of
this. A social worker did come to the house and arranged for
additional rails to be fitted on the stairs, for a pole beside
the bed, and for his chair to be raised 4 inches. I said I
needed a hoist, but I never got one. I was told to make him get
up himself, but he was unable to.
The last few months of 1999 Barry hardly
spoke. He would answer "yes" or "no" but did
not initiate conversation with any visitors to the house. He
seemed all right up until Christmas, and I took him to the
Alzheimer’s Christmas Party. After Christmas he developed a
cough, and during the night of 31 December Barry suffered a
stroke which we knew nothing about until we came to get him up
the following morning. We had to virtually carry him downstairs
and we knew he was ill. The emergency doctor was called who
prescribed antibiotic, and Barry had a temperature. We found it
impossible to get him up and down the stairs so he had to sleep
downstairs.
His conditioned worsened. I begged social
services to get him into a nursing home, as I could not manage.
The GP came and examined him and said he was OK to go to nursing
home. On 5 January we set off for the nursing home and he was in
there one night. The sister in charge then said he was not well
enough to be there and that he needed hospitalisation. He could
not swallow. He was taken to Bromley Hospital the following
morning. He spent a whole day and night in Accident &
Emergency, sleeping throughout. They x-rayed his lungs but said
nothing showed up.
The following morning I called in on my way
to work and was told everything OK. I was horrified however, to
be telephoned by one of the doctors saying that they
"thought he was at the end of his dementia" and there
was not a lot they could do and "do you want him left here
or taken back to the nursing home?" He had only been in
hospital 24 hours and they didn't want the bother of him. He was
taken back to nursing home where they stated he needed hospital
care and that he wouldn't survive at the nursing home. He needed
a drip and oxygen. It took all day to get him readmitted to
Bromley Hospital where I had to say that I was dissatisfied with
his treatment and that he deserved another chance. Two doctors
came out and saw us in a private room and apologised.
We had to leave Barry on a trolley but in the
morning he was put on a ward and they did do their best for him
in the end. Sadly to say he spent 24 nights in hospital, and
although rallying slightly in the middle of January and eating
liquefied meals, could not overcome the pneumonia and passed
away on 30 January 2000 aged 65.
We donated brain tissue to the Maudsley
Hospital and now know he suffered from frontal temporal dementia
with tau mutations. My brother in law has delved into Barry's
paternal family history and discovered that the grandfather and
all his children died of brain disease, and it even goes back to
the great grandmother. Apparently Manchester Infirmary know of
another family who originate from North Wales who have the same
genetic problem, and they are trying to discover if the two
families are connected. That is why my brother in law has done
so much research.
We do not know whether our children will
develop the illness. My son and niece stand a 50% chance.
Looking back, I realise I went through all this with not much
help. I can remember a young social worker ringing me at work
one day and saying she was going to take us off her list as we
did not really need help any more (now that he was going to
Alzheimer’s). I was absolutely gobsmacked, as by that time
Barry was getting increasingly disabled. We only succeeded in
getting the full mobility allowance a month before he died.
Nine months on and we miss Barry very much. I
am glad we took him on all those holidays. Since May I have
visited a medium every six weeks at the Spiritualist Association
of Great Britain in Belgrave Square and Barry has come through
every time. First he said his illness was hormonal, another time
he said his body lacked copper. He says our son is not affected,
also that a cure will be found for this illness. He can see into
my future and sees me setting up a charitable trust, and he is
very pleased I have some holidays planned.
Audrey Williams
Music Therapy
As a student in the final year of my BA Hons in Music and Education, I was required to submit a
dissertation which I chose to write on music therapy, as this is the career path I wish to follow. My
chosen method of study for my dissertation was a case study in which I observed Elaine Wallace, a
music therapist from the North Yorkshire Music Therapy Centre,1 working with a group of elderly
clients with dementia, for one day a week over a period of six months.
My role during the sessions was to observe the client chosen for the case study while participating in
the group and assisting Elaine.
The client who I will refer to as George, is a 61-year-old man who is the second of nine children. His
family were very musical and he played the piano from age eight to eleven. He later obtained a
physics degree and worked as an optical physicist for thirty years. He is married with three children.
George was diagnosed with Pick’s disease in 1995. His speech is limited, although he has the ability
to read out loud, he requires assistance for most daily activities, is incontinent, apathetic and often
obsessive with his movements. He spends four days of the week at a day care unit for the elderly,
where he has been attending music therapy for one year.
My observations showed that George contributed to the sessions by playing the instruments in many different ways, for example fast, rhythmical and unconventionally. He
participated in all the activities, became very engaged in the music and overall was very responsive.
His obsessive behaviour, a symptom of the Pick’s disease, was often demonstrated through his
playing but he also demonstrated a spontaneous, creative, childlike and fun side of his character.
Elaine finished each session with some songs which George would often sing and smile to. He often
used eye contact with Elaine or myself, and was very observant throughout each session.
His ability to interact with others improved over the weeks and the music appeared to relax him as
his obsessive movements or grinding of teeth stopped when he was playing or singing.
During my weeks observing George, myself, his wife, Elaine and the staff at the day centre, saw no
deterioration in his health mentally or physically, nor in his participation in the music therapy
sessions. In fact he displayed higher levels of engagement in sessions 8 to 12 than in sessions 1 to 7.
His progress over the weeks showed that music therapy was very suitable, effective and beneficial
for George as it enabled him to express himself and communicate non-verbally through the music.
Throughout my case study it became evident that there is a complete lack of information about
music therapy for clients with Pick’s disease as the majority of research focuses on elderly patients
with Alzheimer’s. However, there is no doubt of the benefits of music therapy for clients with
dementia therefore in order to gain further knowledge and an understanding of music therapy with
clients with Pick’s, more research is needed which will not only benefit the clients and music
therapists, but also relatives and other professionals working in this field.
The North Yorkshire Music Therapy Centre
is a registered charity which employs three fully trained and
state registered music therapists.
For more information contact:
The Administrator
North Yorkshire Music
Therapy Centre
13A Newbiggin
Malton
North Yorkshire
YO17 7JE
Tel: 01653 698129
e-mail: post@nymtc.demon.co.uk
Laura Vennell
Jill & Richard
Richard was officially diagnosed as having dementia with Lewy
bodies (DLB) six months ago although his wife Jill had suspicions not long after
he was diagnosed with Parkinson’s disease a few years ago. Richard is just 63
years old and his short-term memory loss became worse last year. The GP who was
Richard’s doctor prior to the diagnosis of Parkinson’s thought it was
‘an inherited tremor’.
Richard’s secretary and Jill talked a lot about the problems
he was having, as things became more and more difficult.
When Richard had a small car accident it seemed to completely
upset his cognitive functions. He had dealt with all the arrangements concerning
Jill’s retirement but within six months it seemed as if he couldn’t do
anything.
Having worked with very sick and terminally ill children and
having access to medical information Jill had some understanding of illnesses.
The GP said ‘I hope it isn’t dementia with Lewy bodies’ and that remark
alerted her. When she alsosaw an older person with DLB all the symptoms seemed
similar to those Richard was experiencing. Apart from the
cognitive impairment Richard had a loss of spatial abilities and sometimes would
appear to ‘blank-out’. He became disorientated and the drugs he was on
caused added confusion. Neuroleptics can have this affect on people with DLB and
Richard was taken off them.
DLB causes fluctuating levels of awareness and on a good day
Richard not only passed his practical driving test but also an oral interview!
Then in the summer he came very close to having no less than three accidents
even though he was on a route he knew well and had travelled on six months
before.
Jill then knew it was time to take over.
Day to day living got much worse. Now, if Richard is going out
or visitors are coming he gets very confused about arrangements. Those
fluctuations are not so apparent when he is in a peaceful atmosphere and
absolutely fine but then any kind of change and everything becomes difficult for
him.
Each week Richard goes to a French class but he can no longer
count money. He cheerily tells everyone he has dementia but seems unaware of his
increasing dependence. Richard spends a lot of time in his study – almost in
his own little world – his concentration levels are poor. He has been very
worried about money but is better now Jill has made sure he doesn’t have any
credit cards.
Nowadays Richard sleeps very heavily. He often squeals out in
the night but this does not usually wake him. He has hallucinations but
fortunately they are quite a happy experience for him, being, for example,
glimpses of familiar faces.
On holiday last year a friend joined Jill and Richard at their
cottage estination but Richard seemed to ‘flip’. He became very strange and
accusing towards the friend. He said ‘I don’t know why I’m here. I
don’t know who I am. I don’t know if I have any children.’
For Jill all of this experience has caused feelings of guilt and
heartbreak. She has read work by Joanna Trollop in which she writes of the
loneliness that can be felt even though you are living with a person –
speaking but not communicating – no longer knowing this changed personality.
Jill says she ‘feels like a traitor’ and blames herself because she can no
longer feel the same way about her husband.
Throughout our talk Jill’s strength of character shone
through. The constant question is ‘what will happen next?’ and life is now
full of unexpected ups and downs. But Jill is determined to meet them all
and do her best. What more can any carer achieve?
With very many thanks to ‘Jill’ for sharing
her experience with me. Carol.
Caring
At A Distance
My brother Torn has a frontal lobe
dementia, diagnosed as Pick's disease, though I am doubtful. His progress
seems similar to that of 'Brenda' described in Vol.4, Issue 3.
Tom is 60 now and has never been married.
He is managing, just, in his own home, 3-4 miles away and is still driving,
though his licence is under review. Language comprehension was the first
and still the most serious difficulty. This was not picked up in the early
stages being masked by deafness due to tinnitus.
He is still pretty good on regular
activities, shopping, meals, caring for the cat, driving, seeing to his
finances etc. But things that never did hold much interest for him… cleaning,
clothes renewal, changing sheets etc. are now never done unless I chivvy,
and enormous reluctance is manifest.
I have to wear two hats:
1) keeping
Tom occupied and cheerful- I try to see he does not have two empty days
running; we meet for lunch, walks etc.
2) Then there is the bullying hat,
giving constant reminders of things he should do; hoping he will let me
engage a cleaning lady (he won't) or at least let me do a little cleaning
(he will sometimes), or throw away clothes with holes in (almost never).
I am never quite sure what I will find when I go into his house. Just lately
the problem has been the cat, which has stopped using its litter tray.
You can imagine the rest! Tom finds this amusing.
I have to be very careful, Tom's trust
in me is vital, both now and in the future. He will sometimes say. "I don'
t come and clean your kitchen, I don' t see why you have to interfere in
mine" This is a perfectly reasonable position to take, of course. I just
tell him he is the one with the problems not me yet! He just laughs. There
is very little self-awareness. He does complain about his bad memory; by
which he means mainly his word-finding difficulties which are enormous
now, but he does not relate this to any of his other problems.
Conversation is extremely difficult.
On the telephone, which we often are, it's OK, if I let him make the running.
If he is in our house with several other people he makes no attempt to
follow the conversation, but will cut right across with something he wants
to say.
He very much misses the holidays he
used to take nearly every year in California, staying with friends. I do
not think he would be welcome now, personal hygiene and table manners are
beginning to fail, and this is an area where I really do not know what
to do. People living alone often become slipshod in these ways, even without
a brain disorder.
On the plus side, he shows no embarrassment
whatever about his difficulties. 'Can' t understand a word you are saying',
he declares loudly and cheerfully in shops etc. He seems happy enough when
with people but I suspect becomes very depressed when alone.
What next, Tom is not yet ready for
institutional care by a long chalk. Living with me is not on offer - other
family commitments, but I would like him to move to a small flat much nearer
that I could keep cleaned and organised for him. He won' t hear of it now,
but if his driving licence is withdrawn, then perhaps he might.
I would love to hear from anyone with
a relative in a similar situation.
Angela
Docker
My mum Mary was a Farmer's wife but had
been divorced from my father for the past twelve years. She was
a mother to my brother and myself. I couldn't have asked for a better mother,
always there in times of need, to encourage and support.
She appeared fit and healthy until five years ago. It
was at this time that I noticed her behaviour change. She began to leave
the gas on after she had finished cooking, and on one occasion left her
handbag in the front garden. Her driving became very erratic and she had
numerous accidents.
In 1994 I decided we must visit her doctor. She took one
look at mum and said she thought she was suffering from dementia. I remember
saying that was impossible, as mum was only 57, and dementia was something
'old' people suffered from. She referred her to a consultant neurologist
in Manchester who did various tests and confirmed mum had Pick's disease.
I had never heard of it and found it very difficult to get any information
on the condition.
In 1995 she had to be admitted into residential care.
It was a dual registered home, rest home on one side, nursing home on the
other. It wasn't long before she had to transfer from the rest home side
to the nursing home as her condition deteriorated.
The last eight months have been very difficult, as she
didn't recognise anyone. She lost the ability to talk and to swallow, so
everything had to be liquidised in order for her to get some nourishment.
Her weight plummeted and her general health deteriorated rapidly.
On August 23rd 1999 she died peacefully in her sleep aged
62 years.
Susan Grattan.
My wife, Jan, was a very fit healthy woman, who did karate
and could walk for miles, until after her 50th birthday in 1994 but, the
following year, she seemed a bit depressed at times and, early in 1996,
she went to the doctor several times as she was off-colour.
Things came to a head that March when her line-supervisor
at work - she was a Training Officer with Devon Training for Skills - told
her that they would have to give her a written warning if she
didn’t ‘buck up’. In April we went to see a consultant
neurologist at the local hospital who took me on one side and told me that
he thought something was seriously wrong - but no suggestion that it could
be dementia. I hadn’t even considered that as a possibility, as there was
no family history of it. After various psychological tests we were given
a preliminary diagnosis of ‘possible pre-senile dementia’, subsequently
confirmed by the National Neurological hospital a ‘Pick’s Disease?’ in
March 1997. That Spring was the last time she wrote in her diary, the last
time she drove a car, the last time she took herself to appointments, the
last time she went for a long walk. Her deterioration was rapid and relentless.
She continued to eat well in spite of a risk of choking but, by March 1998,
had said her last word. She was still reasonably well physically, but,
in August, virtually gave up eating, in spite of all my efforts to offer
her the right food and persuade her to eat it. She wasted away rapidly
that Autumn losing nearly a stone a month and becoming very weak, so the
only surprise about her death was that it happened so rapidly. She recovered
once in hospital from suspected pneumonia, but, after coming home again
on Christmas Eve, she faded away and died on 29th December.
Richard King
My Wife Maura
In May 1997 my wife Maura woke me early screaming my cars
been stolen, my cars been stolen. She had a rally green MG Metro, which
she used to get to work, The car, her pride and joy was gone. Maura worked
as a care assistant in a nursing home and needed a car to get to work,
she went to work that day and left me to sort the stolen car. I replaced
her car with an old banger and waited for the insurance payout. Then in
July she was driving along a small road in our town. A stolen car turned
sharp right and crashed into her car. My wife and daughter Katie were taken
to hospital with whiplash, but not detained. Shortly after this, I began
to notice that Maura had begun to slur on the odd word, she has a large
tongue and I thought it was something to do with that or her bridge. The
accident almost forgotten life went on, more words became slurred and I
began to think she was drinking during the day. Maura was a very good darts
player, captained a man's darts team on Friday nights, and beat male darts
players regularly. She began to get moody about this time, more so than
usual. She went to the Doctors and began taking HRT. She was 47 and the
change of life had started. HRT made her worse so she stopped taking it.
We always walked to darts and sometimes she would cross the road as soon
as we left the house and wouldn't walk with me. Fine I thought walk by
yourself; I could walk very fast and would get to the club before her.
I'd get the drinks in and wait for her to arrive. This began to happen
more often and was really beginning to annoy me. She started walking home
very slowly as well, knowing quite well that she was annoying me. She also
began to sit at the bottom of the stairs by the front door at 7o'clock,
waiting to out even though it was too early.
We went on holiday in August to Gran Canaria and had
a good time. Her slurring continued not to an embarrassing degree, but
noticeable. Back home and by Christmas it was pretty bad, especially after
a drink. In January Maura and our daughter Katie went to watch Tottenham
and Barnsley in an FA cup match, a chore for Katie as we both have season
tickets at West Ham. On the way home Maura slipped up the stairs on the
underground and twisted her leg. From this she developed a limp, but would
not stop wearing high-heeled boots, she began to want taxis to and from
darts. We used to play matches on Friday. Sunday nights we practised and
invariably played doubles. She began to hate being on the losing side and
would want to leave early if her partner wasn't good enough. The Sunday
nights gradually died off and we stayed in. It was about this time that
I stopped eating at home. Dinner was ready to be served at 5 o'clock. I
have very difficult job and couldn't always get home for five. Sometimes
Maura and Katie would have eaten and my dinner would be in the oven, most
times everybody would wait until I got in and we would eat the dinner that
had been kept warm in the oven and overcooked. Sometimes when I was oft
work she would begin to cook dinner at 2 o'clock and we would eat just
after 3o'clock. She also began to cook things in the wrong order. I couldn't
put up with the race to get home so I told her I had to work when I got
in and not to cook for me.
Her slurring got worse and the limp more pronounced.
Maura went to the Doctors quite a lot now, always about her leg, I would
ask what he said about her speech, nothing was the reply. The next time
she went Katie went with her to explain what her problems were. The Doctor
was very abrupt and told Katie to be quiet and let her mother do the talking. Katie tried to explain that her mum couldn't
talk; but was ignored. They left the surgery near to tears, but with an
appointment for leg X-rays, nothing for the speech. Its was now March 1998
and I was worried, her speech was getting really bad, we began to look
for a reason, our son found a case in a magazine of woman who had suffered
a whiplash injury and developed a condition called dystonia torticollis.
This injury caused speech and balance problems but could be cured by a
simple operation. I made an appointment with a female Doctor in the hope of a more
sympathetic approach; I showed the Doctor the article cut from the magazine.
She was very sceptical that it could be torticollis, I think she knew even
then that it was far more serious.
Maura was referred to a consultant at Kettering Hospital,
who couldn't decide what was wrong with her. A series of tests began, including
CT and MRI scans. April and into May and her speech was really bad and
I was very worried, Maura was unconcerned that she couldn't speak and was
only concerned with her leg, which she said was cold. I took her back to
the GP; it was arranged to admit her to the neurological ward at Kettering
General Hospital for tests. We didn't know and the GP who referred her
didn't know that the Neurologist was on holiday. We had a nightmare three
days with her in hospital, begging and crying to go home. We were about
to give in and take her home, when the Neurologist returned. An examination
followed, the Doctor was seeing Maura at her worst; slack jawed, limping
and very emotional. I heard him say to his assistant Pseudo Bells Palsy.
He wanted to take Maura into the Leicester Royal Infirmary
to do further tests.
We were due to go holiday in June, he said don't
cancel it, we will arrange to bring her in later. I looked up Bells Palsy
and knew things were bad. June, we went on holiday to Gran Canaria again,
just as the World Cup was starting. Maura couldn't speak in sentences now
but knew all the footballers names and in the bar at night she point them
out on TV and name them. Going out at night got earlier and earlier.
We would be out before most of the bars opened and back to our apartment
about ten, most nights without dinner. Our arrangement has always been
that I pay for the drinks and she pays for dinner now I was having to get
her back to the apartment, then go out and get Pizzas.
Holiday over and back home, Maura had been studying for
an NVQ in caring, she completed it and passed. She continued to work, although
she limped badly and couldn't talk. She went into Leicester Hospital in
August and was in for 4 days of tests. The neurologist Dr Lawden said at
the end, he thought it was Pick's disease, but that he would refer her
to the London Hospital for a conclusive diagnosis. He told me Pick's was
a brain disease that killed off some cells, but wouldn't give too many
details. I found out for myself.
Maura carried on working and driving, I had
explained to her boss that she had a brain disease and we were waiting
for further tests. She said they knew Maura had a problem, but they had
been working round it. Maura began get tired early in the evening and I
persuaded her to start sleeping in the afternoon, she was always up at
5.30 am for a 7o'clock start and she needed more sleep. October and she
was constantly tired, I knew I should talk to her boss again, but if I
did it might bring matters to a head and she may lose the job that meant
everything to her. November and an appointment at the London hospital,
they also suspected Pick's. I was advised to talk to her boss, but that was too hard for
me to do as I was going to be responsible for taking away something from
her.
She caught Flu in November and had three days off work sick, her first
in four years. She also got an ear infection, I took her to the Doctors
on a Monday morning 23, November and when we went in I could see the GP
willing out a sick note. It happened that my wife's boss had written to
the surgery expressing concern and wanting details, which they were given.
The GP thought my wife had already been laid off and was giving her a Doctors
note for sick leave. When we got back from the surgery there was a letter
waiting, it was from her boss; she wanted to meet with us to arrange the
kind of work Maura could do. She could no longer be a care assistant but
they knew how much her work meant to her and would find her domestic work.
We agreed a roster and hours; Maura went once on Saturday 28 November,
she had to make beds all day and she never went back.
That was also the
last day she drove her car, she just ignored it from then on. I have been
leaving her at home on her own, while I was at work since then, but I was
not comfortable with it. I left her soup to warm in the microwave and rolls
to eat. The first week I did this it was fine, I phoned everyday at l o'clock
to check she was OK, I left her notes explaining that she should pick up
the phone if she had a problem, she never picked up the phone. When I got
in from work she would be pleased to see me. I cooked dinner and we all
ate together. The second week she ate six tins of soup in two days and
picked up the phone, I rushed home but there was no problem, she was just
sitting looking out of the window; the TV wasn't on as it usually was.
Going to work got harder, getting home was more urgent I was off most of
Christmas and someone was here most of the time with her. I have asked
for help, it is slow in coming. I went back to work after New Year, but
couldn't relax. I'm off sick myself now for a month at least. There is
no facility for early onset dementia in this area and the only day care
centre is short staffed and can't take her.
I'm hoping that during this month Social Services can
work a care program and I can go back to work. I also have to sort out
the mess she got in with money. She has three credit cards and a bank loan.
Recently, after I discovered her debits she allowed me to begin managing
her bills and payments. When she last paid her bills by cheque she made
all to the cheques out to herself. I have Enduring Power of Attorney now,
I got a self completion pack for £6.99 from: Eagle Legal Forms Ltd.
3 Kestrel Way
Squires Ride Estate
Buckingham
Bucks
MKI 8 7HJ
England
Maura has become more childlike over the last few weeks and plays with
talking toys - I think this is to attract attention. She has begun to
neglect her appearance and sometimes has to be told to wash her hair. Her
interest in football remains, but now we have to watch every bit of football
that is on TV; I don't think she can follow a plot in a film anymore. Her
sounds now are varying types of OHHH, to denote whether she is angry or
wants say something. She writes very cryptic notes for me, of one or two
words and I have to guess what she is trying to say. She hides the notepads
if we get visitors and communicates by smiling or nodding. I find it really
strange that that she is calmly accepting all that is happening to her,
she can't walk very well, or talk but she seems happy in herself. She seems
to enjoy the attention she gets from doctors and nurses. I think she believes
I am someone who is here to look after her.
I took her to a day centre
for old people this week as part of a care package that Social Services
are trying to devise and she sat quite happily as though it was meant to
be. Cleaning, washing and ironing are things she became compulsive with.
We are not allowed to make anything untidy so always tidy up as we go to
avoid her banging things and shouting OHHHHHH. We don't go out anymore,
a trip to the supermarket is the highlight of the week. In two years Maura
has gone from a happy outgoing woman, who had a beautiful voice, with a
lovely Irish accent, to the way she is today. I read Frank and Mary's story
and couldn't decide how many years Frank suffered, but it was a long time.
I now suspect that Maura has had Picks disease since we married in 1981.
Things that I thought were just quirks in her nature, such as not talking
to me for three or four days, smashing things after a night out and things
she would say to people, were all part of this disease. I don't know what
the future holds or how long she has left; the not knowing is what makes
it harder.
Barry Rowley
I opened the letter from my father and read the following:
"Sit down before your read this, as I must pass on
to you some not so good news. Up front, your mother has a condition that
relates to a slow deterioration. The neurologist says that it’s treatable
but not curable. Science has not figured out yet how this comes about nor
can they predict the rate of deterioration. Although it’s not good news,
it does explain the problems we have all noted. The fancy medical name
is Alzheimer’s disease, named after the German doctor who first described
it in 1906".
This was written almost seventeen years ago, and
although Alzheimer’s is now a household word, and doctors know much more
about its molecular pathology, science has still not figured out how this
comes about nor can they predict the rate of deterioration. We now had
a reason for the strange things we had been noticing during the last few
months:
Speech and Language
One of the first signs we noticed was that my mother
would repeat herself, asking the same question over and over and retelling
old stories. The sensory aphasia had surprised us, but we had been ignoring
this misuse of words for some time. She had been a very articulate woman,
so it especially pained us later to have to help her figure out what she
wanted to say when she experienced motor aphasia. Her muscles just wouldn’t
move to pronounce the words she wanted to say. The slowed and slurred speech
was startling because proper enunciation had always been so important to
her. There were paraphrasic errors that we later learned were important
indicators of aphasic language disorder. She would substitute first just
a word and then later strings of words that made understanding what she
was trying to say an ever increasing challenge. As she was losing expressive
language, her sentences got shorter and shorter. Finally she would give
up speaking altogether but continued to communicate by writing for almost
another year.
Judgement-both logical and social capacities
She had been a very good, careful driver but we had
noticed some disturbing lapses in judgement, such as driving too fast.
Her visual agnosia also made driving dangerous as she lost her depth perception
and ability to understand what a stop sign even meant. As a diplomat’s
wife, she had all the proper social graces, but now she was interrupting
people with totally different topics, hanging up the phone mid-conversation,
and later would drink from other people’s glasses at the dinner table,
not know when to stop eating to the point of vomiting and just have trouble
functioning in a social situation. This was especially sad as she wanted
so much to continue her old relationships with friends but it became increasingly
difficult.
Memory
This was first noticed when travelling. She had trouble
remembering new information like where the car was parked. Although at
the beginning only short term memory was affected, later we would have
to deal with problems like her forgetting how to turn off the bathtub faucet
and the stove burners.
Ability to Abstract
Her thoughts as seen in her diminished conversation
were becoming more shallow. Her ability and enthusiasm to discuss world
events and history was leaving.
Emotional Responsiveness
My mother, a usually outgoing person, was becoming
more quiet and aloof. As previously her face and voice would be animated
in conversation, she would eventually have a flat affect.
A short time later I read about Alzheimer’s Disease.
The article also went on to tell about a related condition, called Pick’s
disease or Pick’s convolutional atrophy with similar symptoms plus atrophy
of the temporal and frontal lobes of the brain. To arrive at the diagnosis,
my parents had made the rounds of doctors, internists, neurologists, and
psychologists. Since there were no deductive tests available we had to
rely on inductive testing. Her regular internist did the physical exam
including a complete blood and urine work-up to rule out vascular, infectious
and metabolic disorders, hepatic encephalopathy, certain lung diseases
and depression. She was put on Ritalin to combat any depression and help
with distractibility. From the mental status testing, the psychiatrist
doubted she was suffering from a psychiatric syndrome and specifically
doubted that depression was a likely cause of her clinical problems.
My mother was fortunate to be admitted to the Alzheimer’s
research program at the National Institutes of Health, in the National
Institute of Neurology, Communicative Diseases and Strokes, near Washington
DC. Her neurologist there primarily did research and had only 32 patients
in his program. The program was free to us. They would identify her problem,
monitor her twice a year, perform the latest tests and make recommendations
to be carried out by her regular physician. If there were any breakthroughs
she would be among the first to have them available. In return, she would
be studied to benefit Alzheimer’s research and to expand knowledge of the
disease. After her death they would perform a full autopsy and use her
brain to further the study of dementia. A thorough work-up during a three
week hospital stay at NIH, revealed everything to be within the normal
range except the CT scan of the head, which revealed diffuse sulci widening
with hydrocephalus ex-vacuo. It showed prominent dilated ventricles, prominent
subarachnoid spaces and cortical sulci, most likely representing brain
atrophy. The report from the physician in charge stated, "Overall my impression
is that the patient is suffering from a disorder which has resulted in
a personality change over the course of the past year with some memory,
language and apraxic difficulties. There is insufficient evidence to attribute
this disorder to a psychiatric problem and it seems entirely possible that
the patient is actually suffering from Alzheimer’s disease which is presenting
in a very unusual fashion and could, in fact be Pick’s disease".
Personality, behaviour and orientation changes tend
to come before memory loss in Pick’s disease, unlike Alzheimer’s disease.
From a PET scan, taken less than a year after the first diagnosis, it was
apparent that the major involvement was in the right frontal lobe- the
area that controls personality, speech, and behaviour. Even my father,
with no medical background, could see from the scans, that the right hemisphere
of the brain was diminished.
In 1983, one of the leading theories was that Alzheimer’s
disease. was due to an imbalance in the chemistry of the spinal cord fluid.
A drug was approved and tried based on the fact that the brain works by
transmitting small electrical charges through fluid from neuron to neuron.
Starting in September 1983, she spent 6 weeks in NIH to monitor the side
effects from a new drug, THIP. While there she took part in a seminar on
dementias for 50-75 doctors. The drug did not help and later trials were
given to patients who were in earlier stages of the disease. During the
seven years my mother was in the nursing home, she continued to be monitored
semi-annually at NIH. She died of pneumonia on November 21, 1992.
Autopsy Report
A complete autopsy was given at 9:30 AM on November
22, 1992. The part of the report covering the brain-stated that the cerebral
hemispheres were symmetrical with marked circumscribed frontotemporal atrophy
. Sections of the grossly abnormal areas (frontal and temporal cortex,
and to a lesser extent head of caudate), reveal marked cell loss and gliosis
in the grey matter. Numerous amphophilic intraneuronal inclusions (Pick
bodies) are present. Some ballooned neurons are also seen. The neuropathological
findings are typical of Pick s disease, and well explain the clinical findings.
It is of interest to note that Pick bodies, which are absent in up to 2/3
of cases of circumscribed atrophy, are numerous here. Although there was
no definitive test for Pick’s disease, it turned out that some of the early
theories were correct.
The pain and frustration of watching my mother drift
away from us was devastating. The only good to come of it is knowing that
perhaps she helped scientists understand the disease which will eventually
lead to a cure.
Lynn Erstein
My hero is my dad because I feel he was
exceptionally brave. Dad knew he was becoming ill. He knew also that if
he told someone there would be a terrible fuss. He could have told his
wife, Helen, but with the babies it would be too much. He kept it all to
himself, every day, being weighed with more and more worry. Getting the
doctor to promise not to tell Helen hadn't been easy. He hadn't even told
the doctor the full story. Just getting headaches, he had said. The doctor
became suspicious after a while. She sent Clive for a brain scan, then
discovering he had a brain disease named Pick's. This brain disease didn't
lead to ultimate death; many other deaths instead.
I think Dad was a hero for being amazingly
brave.
Rachel Beaumont
Our son Mark was diagnosed 5 years ago as having Pick’s
Disease. He is the fourth of our five children.
Mark was 37 years old yesterday so he was 31 years
old when we began to realise that he was acting strangely but thought it
maybe was stress at work. He was unsettled in his job, so came to work
in our shop, but again couldn’t settle, so went back to his old firm.
Mark is married with two children. He was very keen
on walking and youth hostelling. At the start of his illness his children
were 5 and 6 years old and he thought the world of them; they were one
of the happiest families I know.
He had what we realise now were the symptoms of Pick’s
Disease. Obsessive behaviour, and repeating over and over again what he
had just said or done, talking to strangers in the street, going out for
a walk, coming home and immediately going out again. It became very difficult
to cope with his behaviour. His wife was trying to keep her part-time job
going, (she’s an occupational therapist with the local authority) and cope
with the children. We helped as much as we could, but we lived half an
hours drive away from them. Anyway, a crisis eventually arose. Mark was
beaten up while on one of his walks round the local reservoir and obviously
had made no attempt to defend himself. After hospital treatment he was
allowed home. So he was then given day care at home for a short while,
but there were still the nights and weekends to cope with.
Eventually it was decided that he needed more permanent
care and he went to a residential home in the next town, where he was for
about 15 months, until they could no longer manage him. Mark was then admitted
to the local hospital for assessment and a care plan to be worked out.
Then he was placed in a community care home 5 minutes drive from his own
home and about 20 minutes from our home, which was ideal.
His care there has been very good. He was given one-to-one
care all day and night with staff taking 30 minute turns to be with Mark
as he was quite active at all times, only sleeping about 3 hours a night.
Each resident in the home has a qualified nurse, an auxiliary nurse and
a care worker assigned to them, and they in turn are responsible for 5
or 6 patients each.
Mark is on very little medication, just enough to
stop him feeling stressed. In the first year there they would take him
out to play football, swimming or walking, which was difficult as he needed
2 carers if he went out.
They were eventually allotted extra money for Mark,
as he was a young man, in with much older people in various stages of dementia.
This enabled them to take on 3 helpers for Mark, which of course meant
he could go out more. His activities this year vary from swimming, walking,
trampolining, hydrotherapy and using a snoezoleum room on a regular basis,
to a five day holiday at Centre Parks in January (this had to involve 6
carers). When the weather has been good they have taken him to the seaside,
the zoo and various parks. They have tried very hard to give him a good
quality of life and one can only hope that Mark has derived some pleasure
and stimulation from it all, as he can no longer show his feelings.
He doesn’t talk now, except for an odd repeated word.
Eating and drinking are difficult for him, he can swallow but the food
comes out many times before it goes down. Mealtimes can be rather messy,
but he gets there in the end.
Now over this last month, he is much quieter, less
energetic, sits down for much longer periods. He now only can walk for
a short time before he obviously needs to sit down. His pulse rate has
become much more erratic. On a night he seems content to stay in bed when
awake, they have a "child’s listening device" in his room so whoever is
in charge of him can hear if he decides to move. He has a stereo in his
room and plenty of "mood" discs, which he is content to listen to.
We realise these changes are maybe deterioration
in his illness, but know very little about what the future holds for Mark.
Over the years in care his wife and children have
continued to visit him twice a week. The children, now 10 and 11 years,
are very good with Mark. They all still love him very much and have coped
wonderfully with his illness thanks to his wife who has told them about
his illness from the beginning in a way for them to understand. She in
fact has kept us going with her practical outlook and strength. We also
visit Mark twice a week and are happy with the care he is receiving.
Last night we all visited Mark for his birthday.
The staff had made a cake and a buffet tea and his wife brought in a cake,
so we had two lots of candles to blow out and lots of Happy Birthdays to
sing. At Christmas we went to the home for Christmas dinner which was very
good.
Now with Mark we take each day as it comes.
Margaret and Neville
Haddock
I've heard all the stories of how she
was born during a snowstorm on January 27, 1937 in Oskaloosa, Iowa. I've
heard how she came to be named after both grandmothers so there would be
no hard feelings between the two families. I know she had curly jet black
hair, weighed less than an ounce over four pounds and barely measured 10
inches in length. I've heard how she survived Scarlet Fever, the measles,
mumps and chicken pox all before her third birthday. I know she learned
to knit beautiful sweaters and blankets at a very early age.
I know she had only one brother, who
was older by four years. I've read the diary she kept while her dad was
in Guam during World War II. I've seen the pictures of the accident that
claimed his life and broke both of her legs when she was just 13 years
old. I've heard all about the young man who visited her in the hospital
and helped with her recovery. I've seen the wedding pictures from 1957
when she became his wife the day after Christmas.
I know she attended and graduated from
high school and junior college in Burlington, Iowa with a degree in accounting.
I know the children born to the couple beginning with a boy in January
1959, a girl in May 1961, a boy in July 1964 and the last, another boy,
in February 1968. I know where she worked, when and for how long. I know
where they lived, when and for how long. I remember her smiles (and her
tears) whenever talking of her children: for the oldest son when he taught
baby sister her very first words, "Bang! Bang!"; for baby sister when,
for her second Christmas, she received a doll and cried because big brother
got what she wanted, a football; for the third child who was stung repeatedly
when he accidentally stepped on a hornets nest when he was seven years
old; for the youngest boy who couldn't understand why his birthday was
celebrated only once every four years just because he was born on Leap
Year's Day.
I know she was a den mother for the
Cub Scout troop her sons where in, went to Girl Scouts with her daughter,
sat in on PTA meetings, Booster Clubs, school plays, band concerts and
sports of all kinds. I know what schools the children all went to as they
grew up. I know when each and every one graduated. I know who got married
after high school and who went into the services. I know who married whom,
when and where. I know how long each marriage lasted. I know the oldest
son has been married 15 years and has four children of his own. I know
the daughter has been married three times and also has four children. I
know the third child has a son and is expecting to become a daddy again
in the spring of 98. I know the youngest son has a son of his own also.
I know she lost her ability to learn
anything new and therefore, her bookkeeping job in 1991 and her ability
to drive a car in 1993. I know she began seeing doctors in Iowa City, Iowa
in 1994. I know this afternoon she will not remember what she did, said
or saw this morning. I know she can sometimes forget names and faces of
her children. I know she long ago lost her ability to comprehend simple
sentences. I know she forgot how to knit her beautiful sweaters and blankets
almost a year ago. I know she doesn't remember telling me stories, she
doesn't even remember them happening. I know she barely remembers me anymore.
What I don't know is why, at the age
of 58, the doctors believe she has Pick's Disease, a form of dementia similar
to Alzheimer's. (The diagnoses can not be confirmed until an autopsy is
performed. And when told this, she told the doctors to go ahead and do
now.) I don't know how much longer we will have her with us. I don't know
exactly how or when I will have to tell her goodbye, but I do know I miss
her already. And I know just how much I love her. I know this because I
was born her only daughter, and she is still my Mom.
Carilyn Morse (otherwise known as
FlyingMom)
April 18, 1996
Updated December 31, 1997
A Carer’s Account from Scotland
Alex’s son crashed his elderly Volvo and Alex, who was
not at this time diagnosed with Pick’s disease, decided that he must replace
the car immediately. He visited the Volvo garage the next day and was convinced
that the first car he saw was just right. At £11,500 it cost considerably
more than the cars the family usually bought and rendered his wife speechless.
Alex planned to sell some shares and cash in an insurance. His wife eventually
managed to persuade him that this was not a sensible buy for trips to the
local station. Mortified but adamant they visited the garage and cancelled
the purchase. Later that week the garage contacted to say that they had
just the car for Alex at £12,500 which he bought and his wife was
too embarrassed to cancel again.
Previously Alex had bought his wife a camcorder for
her birthday. Usually she got a bunch of flowers and some chocolates. As
she didn’t actually want a camcorder they returned it to the shop but of
course lost out on the deal. Alex also felt the need to carry large amounts
of cash on him whereas for all his working life he had happily carried
just a couple of pounds in his pocket.
Now Alex’s wife tears up all junk mail, particularly
anything advertising videos. She has stopped the Reader’s Digest with all
its tempting offers of videos books etc and has also managed to contact
an office which stops most of the junk mail being delivered*.
Alex’s wife contacted another carer in our directory
and was amazed to find that he had encountered similar problems when caring
for his daughter.
*Mailing Preference Service
Freepost 22
London
W1E 7EZ
Service for limiting junk mail. May take up to 4
months before you notice a steady reduction in the postal reduction you
receive.
It’s funny what small things spark off memories.
Robert, now 15, lugged the Xmas tree in the lounge, mud and all, and I
recalled how must last year a similar tree ended up virtually horizontal.
Closer inspection revealed that the bucket was completely awash with water.
Bob, in his usual obsessional mood, had been constantly watering the tree.
Mouth to mouth revived the poor pine and, like us, it spent a restful,
but drier, Xmas.
Bob will not be spending Christmas with us this year.
He was sectioned and taken from us on the 7th of July. What
a dreadful thing to happen to any human. It took two doctors, two ambulance men,
two policemen and one poor social worker to prise him into the ambulance.
He started to become more restless and aggressive
around March time and deteriorated rapidly. He had an ongoing battle with
his bedside clock radio. On the dot of 10pm he would retire and try to
set the alarm. Only he could not set the alarm and the radio would scream
at him. So he screamed back at it, sometimes for two hours or more. Any
attempt by me to alter it or remove it would result in aggression followed
by yet more screaming. It was pitiful; I liken it to the cries of an animal
in pain. Eventually he would sleep, saturated by his exertion. I had already
moved into another room but would lie awake wondering whether he would
wake.
Each week saw a little more deterioration. He would
shave several times a day until his face was a mass of sores, which he
would then shave. It was a constant battle to keep him clean. Then the
violence started, the odd shove here and there. This became a daily ritual
and I determined that if he drew blood from me or hit the boys I would
have to do something drastic. That day came one Saturday. I was in the
garden when Daniel screamed at me to come. I ran upstairs to find Bob slamming
the door, with intent to harm, on Robert. It was only the chimney breast
that saved him from serious injury. I phoned the social worker on the Monday
morning and he was taken that evening. Ten excruciating hours waiting for
what I knew to be the inevitable. I hope never again to have such an agonising
day. The man I married might have died years ago but this was a demon devoid
of any normality.
The house was exorcised almost overnight. Guilt and
relief were felt in equal measures.
He is now in a ward with other sufferers of dementia.
They are all considerably older than him but he seems blissfully unaware.
Bob is well cared for and I try to visit every other day. Samantha and
Robert have made the journey a couple of times but Daniel still cannot
bring himself to face him. If a child, although now supposedly an adult,
could be awarded a bravery award then I wish it could go to him for the
times that he stood between myself and his father in order to protect me.
He is still trying to come to terms with that.
Bob is in the late stages of Pick’s. He is doubly
incontinent, almost mute and shakes uncontrollably at times. The man I
felt so angry at has gone and all I feel now is compassion. Our lives are
forming without his presence but this insidious disease has actually taught
us to be quite self-sufficient. My first letter to you stated that "my
eyes are beginning to adjust to the dark". In retrospect I could not have
known what darkness still lay out there. My thoughts and understanding
are with all carers of sufferers with this wicked disease and I am sure
that they feel, as I do, weakened and strengthened in almost equal measure
by this encounter with the unexpected devil called Pick’s.
(Brenda’s first letter appeared in issue 2#1 in March
1996)
Brenda Brown
Dear Editor
The first sign of Tony’s illness was his intolerance to
noise. He said it broke his concentration. That was in 1989 at the age
of 56. He slowly deteriorated showing all the signs I read about in your
Newsletters. The one that is the most distressing to us all is his shouting.
"Charming! Charming" he would shout at the top of his
voice as we saw to his daily needs. The noise would bounce off the glass
lampshades wherever he was.
He is now in a nursing home where he is still noisy. Has
anyone else had this experience of "shouting"?
Yours sincerely
Barbara McGuiness
17 Shannon Close
Willaston
Nantwich
Cheshire
CW5 6QG.
My Mother was diagnosed with Pick's two
years ago, and the more I learn about the disease the more I am sure it
is right because she is turning out to be a textbook case. I have cared
for Alzheimer patients, and this is very different. My Mother was diagnosed
with the help of an MRI, testing done by a neuro-psychologist, and an exam
by a neurologist. All this was done in Minneapolis were their diagnostic
procedures are better and they see many more cases because of that. This
isn't my opinion, but that of doctors there and here in Orlando. Her case
is only the second one that the neurologist at the Memory Disorder Clinic
here in Orlando has seen in his life, that he knows about. He readily admits
that he has diagnosed Alzheimer’s incorrectly in many cases. It should
be remembered that they can present together also.
When it comes to the care of the caregiver
we are dealing with the same problems, but with the care of the patient
it seems very different. I went to seminars for dealing with Alzheimer’s
because of lack of anything else, and I would leave frustrated in that
the things that they spent the most time on were not problems for me, sometimes
just the opposite, and the things that I needed help with understanding
and dealing with were never addressed. In the beginning you are not dealing
with someone that has lost their memory, just their judgement and reasoning
ability, not with someone that won't eat, but with someone that won't stop
eating, etc.
I personally think that a clear diagnoses
helps, and I would go where ever necessary to get one that you feel comfortable
with. Dealing with the disease and the patient is easier if you understand
what behaviours are "normal" and what to expect. Good luck!
Niki Philcox
You may think me callous and uncaring, I joke and laugh
about our situation and even talk about the time when Norman will die.
I have written down the details for his funeral. He would never talk about
death, his or mine, as he couldn’t face it. Well I have to, as hard and
cruel as it may seem. None of us know when it will be our turn to go. I
like everyone else am not immortal. I have to make sure all details pertaining
to funerals and officialdom are written down as if anything should happen
to me first my children will not be left without guidance as to how to
cope.
I am bright and breezy most of the time but my inner feelings
are very different to what I show to most people. My close friends see
the real me, the hurt, not just mine but Norman’s and the children’s too.
The tears, the hopelessness, the loss and the sadness.
Meeting and getting to know other carers at the support
group has given me the strength to carry on. For this and the support of
my true friends I say THANK YOU.
So please don’t judge me by my outward signs, that is
just a facade that I put on for people.
Joan Bradley
Where to begin? Five and a half years ago when Ron's personality
changed in a very obvious way? Or many years before that when his depression
set in? Whichever way you look at it, two and a half years ago Ron was
diagnosed as having Pick's disease and Paget's disease.
At first we were shocked by the news, although we as a
family knew Ron had changed. From being an introvert he became an extrovert
- which from my point of view five years ago was an exhausting experience!
He was disruptive at committee meetings, disruptive at evening classes
and generally a pain in the neck! Mind you he | 
