Friday, February 28, 2014


Eating, talking, shopping, visiting, and the rubbish.

Needed shopping today. I opted for Aldi, in East Grinstead.
Their non bio washing liquid is the best......even the Which Best Buy.
Since using the Asda non bio liquid for laundry I have had some issues in a sensitive area; could be coincidence of course. I will monitor it.
 After our early morning that early, woman? It was about half past eight when I went down to make it................I instructed Bill to get up. "We're off to East Grinstead and you can have some breakfast in the Ounce and Ivy Bush."
I do love that name for a pub.
But first we had to take yesterday's garden rubbish to the dump.
Now, Bill....where do we take rubbish to these days?
He turned into Martyrs Avenue.
"No Bill - it moved from this site about 30 years ago."
"No it didn't.....I came here recently."
In those days it was just a rubbish dump......and people dumping were free to pick over the rubbish.
That's how we got our Victorian knife polisher.
And Oscar our tortoise.....he had been Bill's family tortoise first, ended his days there.
You know how the dustmen never take garden rubbish? Of course they don't. So, I was not concerned that Oscar had decided to hibernate in the garden rubbish.
Bloomin heck! That was the week the dustmen went beyond their normal call of duty and poor Oscar was taken away in the dust cart.
Our heart broken children were told he had been taken to the dump where he would have a wonderful time. We were very into the book Stig of the Dump at the time.
Once I redirected Bill he did realise that the dump had long ago become a municipal refuse tip on a different site and these days is a thriving well organised business.
Over breakfast I continued to talk about Bill's need to try and project a better image.
I reminded him that a driving assessor will not just be assessing his ability to manoeuvre the car.
They will be watching for his attitude, maturity of judgement and general behaviour. He must look like he is in control of any eventuality.
Bill wants to continue driving very much and I am hoping that some of this will sink into his head.
We talk much better out of the house - going out can be more relaxing than staying at home.
Shopping was - well, shopping. But a trip to Aldi puts too many temptations in our way - cheaper than in other places it is true, but we end up spending more!
I have a chicken for the slow cooker tomorrow.
We came home, I put the kettle on, made cups of tea and cut a small slice of chocolate cake.
Bill's was left untouched because he fell asleep.
I phoned the dementia nurse for a chat......bah! She's leaving in 2 weeks. Nurse Hannah will be our new friend. I have met Hannah already at the Carer's Group.
Lucy could tell that I am bogged down in the confusion that is a dementia diagnosis, but praised me for doing as much right as I do.
She is going to chase up Sussex University for me......the radiographer said that we would get a disc with a copy of Bill's brain scan. I admitted that it will make no sense to me; but if I pursue the second opinion route then it would be very useful to have.
We then went to the hospital to see how Frieda is. We took one of the Aldi chocolate rabbits, a direct copy of the Lindt chocolate rabbits at about one quarter of the price. I think she will look at it more than eat it!
I looked through her food menus and tried to get her to concentrate on the choices.
I am assuming that she tends to have whatever the nurses tick when they collect the completed menu from her.
She hasn't a clue what she is ordering.
I noticed that for tomorrow's lunch she had ordered an egg mayonnaise salad, white (this refers to the bread you would choose for a sandwich meal, but no filling was ticked), a jacket potato - no filling ticked, mashed potato.
When I asked her about the salmon and broccoli bake she crooned "oh I love salmon!".
So let's order it then - rather than a motley collection of things which don't go together and she wouldn't want.
Surely this is something her off spring could be doing. At least it would give them something to talk about.
They pop in for a few minutes, one one day and the other, the next. Then they make excuses about not staying long because they have shopping to do.
Tomorrow I get a break from is my monthly Saturday in the shop.

Thursday, February 27, 2014


Thursday chores

It was raining at 6 o'clock this morning.
I was almost relieved!
I have lots to catch up on at home and I also need rest. So, no trip to Ford and Littlehampton today.
I had chores to do and I wrote down a few ideas for Bill too.
Firstly I ordered a bird table. I was amazed at how cheaply you can buy them.....have you seen what they charge in garden centres?
The one I have ordered has a pole from a flower box, which I hope will look lovely in the summer. The planter will add some weight to it and make it more difficult to be moved by any vandals tempted to interfere with it.
I have sorted through all the letters and information relating to Bill's condition and got things in some sort of chronological order in the plastic folders in my file.
I did spend quite a while reading things that other people have said about the driving issue......lots of advice on the forum.
You can read about it in the posting after this one in the Dementia Diary.
After lunch I went in the garden.
I suggested this as a chore for Bill. For a while he has felt quite safe saying that he will get on and sort the garden out one day. The weather has been too awful to do very much at all.
I asked if he could cut down last year's growth on the clematis today.
I could see it was not going to happen.
Do it yourself, woman!
I had quite a good tidy up. And Bill did come out as I worked. I handed him the secateurs and told him there were bits that I wasn't strong enough to cut. He seemed to enjoy doing it - though grumbled about the cold.
That's one of his phrases....he has about a dozen phrases which he brings out several times a day.
"There's a chilly wind" he says almost every time we step outside the door. He remembers how he used to like playing with words and still might refer to the "willy chinned".
After a cup of tea I got him cake making.
It was just one of those packet mixes where almost everything has been weighed out in advance.
So, we had a chocolate brownie cake.


Dementia Diary: February 27th 2014. Alzheimer's or FTD?

What is the matter with Bill?
Alzheimer's? Frontal temporal dementia? Autism?
I can't quite make it out.......he seems to have symptoms of all three and lots more besides.
If we perceive that he can only be in the early stages of dementia, then I have to wonder at how he is.
Let me tell you where this is coming from.
I wrote yesterday evening, on the dementia forum, about the conflict between us over Bill's ability to continue driving.
I know that he is mechanically faultless with his driving.
But I sometimes question his judgement and therefore am fearful of potential accidents.
Other people on the forum have given lots of practical advice....including some people who have been diagnosed with dementia themselves.
Some people with dementia have sorted out the procedures to re-assure the DVLA themselves - appeals tribunal and all.
Some had their diagnosis some years ago.
Bill couldn't do that - he would be unable to pick up the phone and hold in his head what he needs to talk about and couldn't string a meaningful sentence together anyway.
He was never good at that sort of thing - that's the autism.
But now....and it has happened really rapidly.....his brain has nearly nothing to offer.
A year ago he was vague and a bit forgetful.
Now he seems unable to hold anything in his head for any length of time.
He has nothing to say, no conversation. Nothing interests him.
I want to shout "Try harder". I want to advise that he would be much more content if he could attempt to live as an adult.
No _ I don't just want to do it. Today I have talked to him about it.
There was little reaction.
It's obvious really - an assessor of his driving will be very much influenced by Bill's behaviour and seemingly empty brain.
One suggestion to me about the driving was to organise an hour with a driving instructor. This would get Bill accustomed to being assessed in the familiar world of our town and it might give us an idea of what to expect. I'll see if anybody could do that in the next few days.
Next week I will organise the assessment.
I have to admit I am floundering. I sometimes wish somebody would just take him away and look after him. But nobody would give him the care and thought that I am giving. I seem to eat, sleep and breathe dementia.

Wednesday, February 26, 2014


I don't like Wednesdays!

Wednesday - my day for feeling low.
And feeling low increases irritation and I have been in danger of snapping.
Glad Bill has gone upstairs for a very early night.
We were up quite early.
Bill decided to get up and come to the hospital to return the ECG monitor.
I handed in my wee sample and then went for blood testing.
Hell - it was packed!
We normally go just after lunch for blood tests - never more than 3 in front of us.
I took a ticket and there were 25 before me.
We went to the hospital cafeteria to wait. Much more pleasant than in the crowded bloods waiting room. It was nice to sit and lounge for a while.
I have to say that I would very much appreciate it if chef, James Martin could come to Crawley and sorted out the cafeteria.
Bloods done, we went home.
This afternoon we went to see cousin Ann for a couple of hours.
Bill put on a good performance for her!
When we left she uttered words of sympathy to me.
I bet she was actually a bit upset seeing her young cousin being so silly and childlike.

Tuesday, February 25, 2014


Remembering today.

Bill is now wired up.
We went to the hospital this morning for the 24 hour heart monitor to be fitted to his body.
The nurse asked if he ever felt any palpitations, breathlessness, dizziness or pain. Bill couldn't think that he did. The nurse was surprised that he had not noticed anything - she noticed straight away that there was irregularity.
Sorry sense, no feeling!
From Bill's problems to his sister's problems.  We went to see her and  her man, enjoyed a cup of tea and a catch up. Jane is out of hospital now and hopefully will not need to return. She can walk with the aid of crutches.
I have a leg/ankle problem too - not serious.
My right ankle is rolling in and swells up as the day proceeds.
There is a weakness in the ankle after a lifetime of twisting it as I walked or ran (running was in the old days). I think I twisted it again quite recently on a very slightly raised paving stone......raised by a centimetre maybe.
I just looked it up on the internet and there was hardly a medical comment - just people who sell sports shoes having their say.
We had a little bit of shopping to do. I wanted plastic envelopes for a loose leaf file to keep all the paperwork connected with Bill's health together.
Then to a Rusta......just a little snack.
But somehow we persuaded each other that it would be nice to share a slice of cake too.

This is "bumpy lumpy cake"
It was Alex's choice of name because he opted for a lumpy bumpy top.
He was just a bit concerned that if it was smoothed and perfect people might assume it had come from a factory.
Food in la Rusta just does not come from a factory - ever. Alex cooks it all.
I think you can imagine the temptation!
It was fabulous.
We drove home via Southgate shops to post a parcel to Clare. I popped round to see Rob the hairdresser to discuss my friend's opinion that my hair style would benefit from being a little softer.
He agreed to a quick make over - though he said he liked it as it was.
It didn't take long.

Bill's memory this evening is very poor.
He suddenly asked what we had we had done today.
I told him we had been to the hospital, but he didn't know which hospital. I don't know how many times I have had to tell him that the monitor must be returned to the hospital in the morning. I could take it off and return it in a provided bag. I am not sure that Bill understands that I was encouraged to do this.
In la Rusta.....we nearly paid twice.
We had gone in and ordered and I rushed to the loo.
When it was time to go Alex asked for money for the cake; I reminded him that we hadn't paid for the other things.
"Yes you did" he replied.
"No, no" I said.
Bill had no memory of paying for things at the time of order. And of course I wasn't there at that moment.
It was so noticeable this evening that he has very little idea about cameras now. He can point and shoot, when I ask for a picture of me - and I set the camera ready first.
He was aware at one point that maybe he should adjust something - but his brain was unable to tell his hands what to do; presumably his brain didn't know what to do.
Well, one or both of us must return the monitor to the hospital at nine in the morning.
Need some sleep.

Monday, February 24, 2014


Normal business in the shop.

I have already added something to the dementia diary blog.
It's a good news day!
I enjoyed my day in the shop.
Steve and I chatted lots, which I enjoyed.
And I also worked hard. Many of my things had featured in a window display and that had been changed on Friday; so I had to absorb back on to my shelves quite a lot of kitchenalia stuff.
And I had the things that I had got written up yesterday to find space for.
I took in a box of books too.....£1 books.
Last week I came to the conclusion that just at the moment I haven't the energy or will to do ebay. Books that are stored in the garage in readiness for ebay might as well go.......and go quickly. Many are about places not in our area; hopefully at only £1 people might get tempted.
Steve was!
I also bought things today.
One of Bill's old customers brought me 21 old tins. They are all quite interesting - and some, if they had been in good condition would have been worth quite a lot of money (£30 -£40).
I will polish them and hope they can look just a little more appealing to tin collectors.
I sold well last week.....very glad that an amateur barge art painted milk churn has gone. I have had it for a year and it obviously took up quite a bit of space.
Sleepyhead must go to bed.


Diary: Bill and Grandma P's life with frontal temporal dementia FTD 24th Feb. 2014.

There are lot's of Bills out there!
I shouldn't be happy about that - because it means that there are lots of people, like me, going through confusion, frustration, fear and downright anger.
Poor them.
I received a most useful pack of information from the FTD society today.
It does leave me wondering how Dr C, the consultant psychologist who interpreted Bill's MRI scan, could possibly have not followed through on an FTD diagnosis.
Ah well - I know and the prescribing nurse knows.
The medical facts are there in black and white, along with people's accounts of living with this form of dementia.
I almost chuckled as I read of other people's husbands behaving just like Bill.
I have a booklet to take to the GP when Bill goes. This is quite a rare form of dementia and many GP's may not have had much experience of it.
Today has been a day when I leave Bill on his own at home.
Sometimes he is so pleased to see me when I get back that it seems to set off his compulsive behavior.
This evening has felt good. He has been nice.
Quite a relaxed stress free time.
During the day Bill hung up the washing for me and filled up containers for the birds - peanuts, seeds and fat balls.
After dinner he trotted off to wash up as usual.
Right now, he has to deal with other issues.
His hernia has been hurting a lot this evening. He is waiting for a hernia repair.
But first he must wait for his heart condition, probably mild, to be analysed and if need be, sorted. The anaesthetist wouldn't administer anaesthetic whilst there could be risk.
He has atrial fibrilation - irregular heart beat.
Tomorrow he will be fitted with a 24 hour monitor.

Sunday, February 23, 2014



Not quite the sunny day I could so quickly get accustomed to. I decided to give Brighton and Newhaven a miss.
But what should I plan for us to do?
I mused this on facebook and my Thai daughter in law suggested that I stay home and relax. Oh how I wish that were an easy option.
There is nothing relaxing about living with Bill........but getting out can make a bit of a break in the routine.
People don't understand how the symptoms of dementia change life for the carers more than the patient really.....after all the patient doesn't know that life has changed. And why should people understand? If you haven't lived with it, then you wouldn't know. I didn't know before.

We went to the village hall antiques fair in Betchworth - haven't been for ages. It wasn't my cup of tea. Most of the stalls were full of glass, jewellery and pretty china and many things were, I thought, overpriced. I found one stall with a few bits I could buy - I like the old wooden backed barber's mirror.
We rejected the paltry refreshments on offer.
Opposite the village hall is the garden centre we like. Our mission was to stock up with nuts and seeds for the birds. I plan to replace the bird table soon, too.

This afternoon I wrote up some of the things bought this weekend, whilst watching the closing ceremony of the Winter Olympics.
I have enjoyed it very much.
It seems like the Russians created a special games.
Beforehand there had been much political sniping and from some quarters a bitter hatred towards Russia for its attitudes to gay rights.
As far as I could tell the games have been friendly.
With reference to gay rights, I wish the younger people could understand history.
The UK has been relatively stable for the last 100 years - but in my own life time same sex relationships were punishable by imprisonment.
Russia has had a turbulent 100 years and may lag behind us in these matters.
So, they have not yet caught up with our "enlightenement" - but I hardly think we have the right to preach, in view of our very recent past attitudes.

The closing ceremony was brilliantly choreographed and staged and a good reminder that despite their turbulent history there is a mass of cultural achievements to wonder at and they featured in the show.

Because I was busy with my stock and the TV, Bill was very restless. Wandering about and banging......and eating.
We all like eating.
But another symptom of FTD is the constant eating - because  it is there.
And I don't really want to deprive him of all the goodies he likes.
He was in bed by half past eight.

Saturday, February 22, 2014


February fun at Littlehampton.

It has been 4 weeks.......28 days without a trip to Ford and Littlehampton!
But today the sun shone.
Bill feels the chilly wind.......or maybe it is just one of his stock phrases; like "There are a lot of holes in the road" everyday within 2 minutes of starting a journey in the car. Often he says "There are lots of cars about" - but he couldn't really do that today, early on a Saturday morning.
I bought a few interesting bits to sell. This includes an early Lloyd Loom chair with an thick interior sprung cushion. It dates from the late 20's.
I know this because I bought THE book about Lloyd Loom from the same seller.
The seller commented that the chair might be a rare one.....then laughed "Oh I see you bought the book too"
If she had opened the book she might have discovered that it is indeed a rare one.
But the springs in the cushion are hard and lumpy now and it needs re-covering too.
Do I sell it tatty? It was only £10. I know that somebody else could make a much better job than me - and my days do seem to be rather full of Bill.
Then we went to Littlehampton." Everybody" was in The George. I was so pleased we got there to meet Harry and Brian - back from Malta for a short while for medical appointments. Brian gets no better, of course. Harry hopes that they can now return to Malta until May.
Then we went for a walk on the beach.

Bill poses for me on the curly sculptured part of the long, long beach side bench.

Some younger folk must have gone paddling.

We walked along the beach as far as the beach huts.

That's lovely! He looks like my Bill.
So often these days the camera catches a somewhat demented looking expression.

This is the East Cafe. The building has won awards for architecture. On the left hand side there is a huge picture window with views out to sea.

We got talking.
Dogs certainly are good for starting conversations.

This afternoon I enjoyed the Biathlon relay from the Winter Olympics. I opted for that instead of ice hockey.
I realised that I love sport where it involves man on man giving 100% of effort and skill, going beyond what they maybe thought was possible.
I love it whether it be the Olympic Games or the Under 15 sportshall competitions.
I have enjoyed the Winter Olympics.
There may be much in Russia that we might wish could be different. But there is no doubt that they have organised a good games and the spirit of competition has been strong and friendly and fair.

You will now find interspersed within Grandma P's regular blog postings, dementia diary postings.
This gives people far more choice of opting out of getting too involved with dementia, if that is there preference.
Hell, I wish I could opt out!


Diary: Grandma P and Bill's journey through dementia. 22nd February 2014

Bill had a bad night. He said he was up just the once. I know he was in and out of bed and downstairs more than that.
As my plan had been to go out early, I decided that I could persuade Bill to get washed and dressed by 6 o'clock.
It was a lovely morning with the half moon shining brightly in the dawn sky.
And then the sun came up and all was spring like.
I enjoyed being at the big Ford car boot sale/antiques market.
Bill walked round just a little bit and then went to sit in the car until it was time to go to the coast for a breakfast.
It has been a bad day for memory and noises.
Conversation is always limited now.
As we ate breakfast I talked about a plan to go out again tomorrow if the weather is OK.
I suggested we could end up in Newhaven.
"But we are in Newhaven now" he protested.
We weren't - we were in Littlehampton. And he seemed not to remember having been at the car boot sale - a place he knows very well.
He had helped get a heavy chair back to the car with a trolley we can borrow. Did he remember this? He could recall the crowds.
"What was on each side of us as we pushed the trolley?"
I was thinking of the stalls of course - Bill suggested it was the river.
Bill is able to control his obsessive habits a bit when we are out, so I am constantly devising plans to be out.
But meals can be a bit fraught - he loves to put half chewed food on his tongue and then stick his tongue out.
So funny! Long forced laughter follows.
A walk on the beach today was lovely.
Later in the day a family member phoned - back from a half term skiing trip. I told Bill and told him all the other people who had gone on the trip.
"Did your Dad go too?" he asked.
He had no idea of any reason that my Dad might not have gone. Dad died nearly 20 years ago.
"Did he? I don't remember."
"I didn't know.......but then " after some thought, "I must have known".
That felt kind of poignant.
We both dozed a while after that.
I woke to watch some more of the Winter Olympics. Bill can't cope with TV. I don't think he really knows what is going on - not just in the Olympics, but everything. He doesn't really follow the soap that we have watched together for some time.
Maybe he feels cross about me watching TV. Though there is nothing else he would want me to be doing with him. Maybe he gets tired.
The noise levels increased.
He was banging the furniture and walls and his own body a lot - very noisily.
And then comes the long loud forced laugh.
It can feel like there is no let up.
If I ask him to "cool it"...or just plain "stop" he does it more.
I can't win.
But today I have pretty well kept my cool.
He went to bed before 9 o'clock; so all is peaceful now.

Friday, February 21, 2014


The best fishcake in the world.

The first hour or so of the day was most pleasant - the sun shone warmly through the bedroom window as we ate a crumpet with a cup of tea, whilst listening to Radio 2, with live performances from Imelda May. She had not, until today really registered with me - but I love her music, a sort of folksy/jazz/rockabilly style.

I then concentrated on getting a letter written
It worried me that our GPs would receive a letter from Dr Czerodi today (as I did) which doesn't give a true account of Bill's appointment with her, but does include what I can only describe as mis-interpretation of the facts.
I could hardly go and see a GP to discuss Bill's dementia. I would talk of FTD and the consultant had made no mention of it in her letter.
The GP would just assume that I had rejected the Alzheimer's diagnosis because that is such a frightening word. They would assume, maybe, that I was in denial.
So a letter has been sent with my record of the appointment and the subsequent appointments with the nurses.
Dr Czerodi has been sent a copy too and the prescribing nurse. The latter I sent it to by email and she has replied favourably.

I wanted a trip into town today.
It was my treat to go and buy "girlie" gifts for Clare's birthday.

We had lunch in La Rusta.
I had a salmon fishcake, topped with poached egg and bearnaise sauce and masses of salad.

Probably the best salmon fishcake in the world.

We popped into a charity shop almost opposite La Rusta.
I was not looking for anything in particular and certainly didn't think I needed a dressing gown.
But I bought one - and I love it.

And now I see my hair style, I am tending to agree with my friend who commented on it.
It is a bit severe looking and maybe layers would make my face look younger.
Think I'll go back next week.

The dressing gown isn't heavy, but it does have a towelling lining for warmth.

Thursday, February 20, 2014


Curry and trim and running.

You may have already seen it - I posted something about our visit today to the prescribing nurse.
It is  just below this posting. My plan is to use the blog to highlight dementia experiences, maybe for the benefit of others if they find it on a search engine.
Bill and I have now joined another "tribe" and the dementia tribe people are very supportive of each other.
I feel very fortunate that we have this PN (prescribing nurse). She is mature and very experienced - and would seem to have more knowledge than the young Hungarian doctor. And she seems to have enough authority and wisdom to question the doctor about things that have been decided for Bill.
Wrong decisions have been made.
I cannot accuse the doctor of having any ulterior motive for slanting her interpretation of results as she did. I can suspect it however.
I feel more confident with the backing of Colleen.

So, back to a more normal blog posting.
After our appointment with Colleen we went to Horley - lunch at The Jack Fairman. Thursday is curry day and I relished my sweet potato, chick pea and spinach curry with all the trimmings and a glass of Guinness.
Bill dropped me off at our hairdresser's - I had decided, at last, that long straggly hair is not the best for me.
This caused me a touch of alarm.
You see, Rob, my hairdresser, soaked me when he was washing my hair. I phoned Bill and asked if he could come back and pick me up because I didn't want to walk home with clothes.  Rob did a pretty good job of drying them with the hair dryer. Anyway Bill didn't turn up.
I assumed he had fallen asleep.
But as I walked home I had visions of him getting in the car and driving off and then not remembering where I was. He could be aimlessly driving round the town! It was a with a little trepidation that I turned the corner to our house - would I see the car?
Phew! The car was in its normal place and Bill therefore was curled up on the bed asleep.

And this evening we have been to the Horsham Sports Centre for an evening of sprints.
It was a good evening.
I enjoyed being chief and I think Bill enjoyed being there.
It is not a noisy hectic meeting and Bill manages very well. His timekeeping is spot on.
And everybody cares a lot about him, which is lovely.

What a thought - the next time we all meet up again it will be for an outside meeting at the end of March.
May the rains have gone by then!
I hope Bill will feel able to cope with a longer day of timekeeping. We will have to see.


The FTD frontal temporallobe dementia muddle.

 This is what I have just posted on the dementia forum.
If you are reading this because you have a form of dementia or care for somebody with it, then I can recommend the forum to exchange experiences and ideas and support.
And for friends and family I will just say that  I will keep dementia reports separate from daily life etc on my blog. So there will often be 2 postings each day.

I feel like I am in a nightmare - bad enough that Bill has dementia, but somehow we are in the middle of a medical muddle.
Doctor who gave us the diagnosis talked first of FTD and then dismissed that in preference for Alzheimer's. Confused? Join me in the confusion!
Bill started taking aricept - symptoms got worse.
We saw the local dementia nurse and by the afternoon she was on the phone, having talked to the prescribing nurse. "Stop taking the aricept"
It does make FTD worse.
Today we saw the prescribing nurse. There was no way she was disloyal to her superior - but in so many words she did suggest that the doctor was wrong or handled things badly. The Prescribing nurse has seen the MRI scan and her first thoughts on seeing it were that Bill has FTD and she couldn't understand the aricept prescription.
To be honest, there seems to be no doubt in anybody's mind - except the doctor - that he has FTD. 
Now Bill must get aricept out of the system and we will see the prescribing nurse in 2 weeks. There is no appropriate medication for FTD. 
We will have appointments to see a neuro psychologist and there will be further testing - maybe even another MRI. There could then be a prescription for some sort of drug to control his awful behaviour a bit.
The psychologist will also help me with strategies for coping.
God, is it any wonder that I lost it last night. I felt so angry.
I am trying to tell myself how lucky we are to have the nurses on our side and on the ball as far as diagnosis and treatment are concerned.
I am sure that many of you who have been travelling this road a lot longer than me felt very alone from the outset.
And of course we have to add a trivial hernia operation into the equation - which he can't have until heart abnormalities have been fully investigated. 24 hour heart monitor for him next week.
It will all be unravelled. One day.
And will that make me feel better? Perhaps slightly. The fact is that Bill has dementia and it will get a lot lot worse - whatever.

Wednesday, February 19, 2014


From highs to lows in a few hours of FTD

This ought to be short....but I have a lot on my mind. Too much.
I have been busy doing the right things today. I so want to make sure that Bill gets the best treatment.....perhaps I should begin by looking at the way I sometimes treat him.
Anyway, I talked to another person from the FTD society today.
She thinks I should discuss things fully with the GP - and I will. Sorry, doctor, there is rather a lot on the agenda.
She also thinks I should push for a second opinion with maybe somebody better qualified than the doctor who we saw, who is a psychiatrist.
She asked what the official diagnosis is - the one in the letter from the consultant. There has been no letter to either us or the GP. I am told it will come - but probably hasn't been typed up yet.
She thinks I should push to have Bill seen by a neurologist in London....and push I will.
This afternoon I went to a meeting of a carers' group. It was interesting and informative - so much information to learn about and doors to break down to get things done
By chance I sat next to somebody I vaguely knew and we do share mutual friends. These friends have suggested I talk to to my companion at the group.
I also talked to her AD husband. He was diagnosed at least 4 years ago......we had quite a chat - a proper conversation. He even claimed to remember my father!
I don't care if he made that bit up; it just helped conversation to flow a bit.
I have no conversation with Bill and he doesn't know how to help himself to chat with people.
I shall insist that next month Bill comes with me and he can spend time with the other people affected by dementia and see how he makes out without me. They have their own group meeting in the next room.
So I came home feeling informed, but frustrated.
Why is it so difficult to be with Bill and so easy to be with Jim?
I know- 2 different dementias. each progressing at their own pace.
I arrived home to- well, you know! A powerful performance of what Bill does best. Noise.
It was a relief when the time came for another appointment. I had my Vitamin B12 injection this evening at gone 8 o'clock, It was only a month late!
I asked the receptionist if the lovely Irish woman doctor was on holiday, I don't see her name on the list of doctors with appointments available I so wanted her to help sort out all the medical muddles I feel I am bogged down in. That is not to be - she will retire at the end of next week. She deserves it for sure.
We now have an appointment with the new GP - the one who arranged for Bill to be seen about his hernia. He is younger and maybe hoping to make a name for himself - I hope he is up for a challenge!
I felt restless whilst I was out - I could hear myself muttering away.
I came home and completely lost it - anger spilled out of me. I banged furniture in rage!
Then felt so sorry and so guilty.
If Bill's legs stopped working I wouldn't ask him to get up and dance. But a brain not working is different - my husband, my friend, is not there. And I can't demand that my lifetime companion come back to me.

Tuesday, February 18, 2014


Front temporal lobe dementia and aricept.

It has been a good day - a productive day.

But things began with the fact that I had not been diligent. I don't check the answers on the answerphone often enough.
Today I did check and found one that I should have heard last Friday afternoon.
It was from Nurse Lucy, the Alzheimer's nurse.
If I had heard it, I need not have suffered pangs of guilt and fears of meeting up with perhaps a second rate prescribing nurse,
You may recall that I discovered that the drug Aricept, is not only unsuitable for those with front temporal lobe dementia (from herein referred to as FTD). but could well be harmful.
What should I do?
A doctor had prescribed it, but I was gleaning evidence that she shouldn't have done so.
I decided at the weekend that a few days without it wouldn't hurt.
I worried about how I was going to explain it to the prescribing nurse.
If I had heard the message left for me I would have realised that Lucy and the prescribing nurse had discussed Bill without delay and that Colleen, the prescribing nurse, advised that Bill should stop taking the aricept.
Hell's bells! I had managed to diagnose the original problem without the benefit of an MRI scan and I had also diagnosed that Bill was on an unsuitable drug.
This does leave me not really trusting the judgement of the doctor who we saw......a consultant pyschiatrist.
I said at the time that I was worried because she was very keen to hand over leaflets about a very expensive supplement which manufacturers have promoted as being of benefit to Alzheimer's sufferers.
I wondered what her bonuses would amount to.
And now I know that if Bill shows any evidence of Alzheimer's it is only because the FTD has already begun to affect other parts of the brain.
Did she slant her diagnosis towards the pathway whereby if I was a sucker she could add to her bonus?
This I will pursue. I want other people to know my opinion!
And, of course, I now have far less worries about meeting Colleen. She is obviously on the ball. I want to ask her if it is possible for Bill to be seen by a consultant neurologist. I would pay for a private consultation to have that extra opinion.

Today I contacted the FTD support group. This evening I had a lovely phone call with a woman from that group.
Her husband had FTD.
No two people are the same - but there was so much in common.
It felt quite wonderful to hear that somebody could almost end my sentences because of our shared experiences.
It just felt good to be talking to somebody who actually knew what FTD is.
I almost felt euphoric with joy! And that is pretty damned stupid because the end result is not one I fully want to come to terms with yet.
The woman said that when her husband died it was a blessing for he had no more life in him than a plank of wood.
Bill's brain is dying - it is a terminal disease. But for now he has plenty of life and abilities alongside all the symptoms of what has already died.
I live for the moment, so does he.
Sometimes the moments are hard to cope with for me. But we will make life as good as it can be.

Nurse Lucy also suggested I got involved with a carer's self help group. The group meets monthly in a local church hall........;and the next meeting happens to be tomorrow.
I will be there, meeting people, sharing a cup of tea, talking and listening.
Most of the carers will not have heard of FTD - far, far less common than Alzheimers. But we all will be carers of somebody whose brain is dying.

And this afternoon was good too. We went family visiting. A great nephew and great niece are in town during half term week, visiting their grandmother, Bill's sister.
They are super kids.
Bill enjoyed toddler Jessie's fanatstic smile and the fact that she made no demands of him at all and thought his funny noises were - well, funny!
Caleb is a thoughtful and wordy 4 year old - very philosophical. Great company. And best of all he had made a cake with his grandmother this morning!

Yes, it has felt good today.

Monday, February 17, 2014


Adult conversation and work.

That's my day of freedom for this week over and gone.
I have been a busy bunny today in the shop.
I could foresee problems sorting out my section as soon as I arrived.
On Saturday the shop had phone asking if I would take £40 for  the 1950s "whatnot". I agreed and expected not to see it this morning.
I saw it - obviously the customer changed their mind.
I spent a couple of hours this morning sorting things out.
In between times I was selling Moorcroft pottery items - to two separate. customers. Good, Moorcroft is obviously still in favour, if the price is right. I have a small vase to sell.
It is all ready to be listed on ebay. Maybe tomorrow.
I was working today with Nigel and we made a good team.
The Moorcroft items were good sales, as were some glasses later in the day.
Now, in my world cold drinks - water, wine, juice, beer etc is drunk from glasses which cost maybe 20p at a car boot sale.
Some people like to feel quality in their hands.
Not that the customer today will be drinking from these glasses - his plan is to sell them on. He paid much more than 20p for a glass!
Quality glasses need quality wrapping.
So by the end of the day we had a sales sheet which added up to almost £500.
So a good day and a busy day.
I realised today that there is a word that I can't abide........of course there are many more than one!!!
I loathe the word "designer" as used to describe supposedly superior items.
I bought some glass candlesticks today from somebody who came in; "They are designer candlesticks" the woman told me. But she couldn't remember who the designer was - so not a useful description anyway.
And it occurs to me that even the most tasteless crap has been designed by somebody. Nothing gets made without a plan or design. Some designers might have to work within specific restrictions of cost and a target market. Other designers might have complete freedom to develop their designs.
I labelled the very good quality candlesticks as "art glass".
They look  a bit like Terence Conran designs.....and if they are I have underpriced them considerable.
More research needed.
Back home I had about 3 hours with Bill before he toddled off to bed.
He has added a new performance to his repertoire......he likes imitating a monkey.
But the old routines are not forgotten!
And yet, whilst I was out he put the vacuum cleaner around the house.
I think it should be an early night for me.

Sunday, February 16, 2014


A few details of the day.

Two blog postings tonight.
This must be short....before all the photographs of Lewes.

I dragged Bill to Brighton.
He sat in the car whilst I went hunting at the marina car boot sale - interesting pickings.

Yes - that is an enamel bidet on the left.
The chrome and glass display stand will replace the 1950s one that was in the shop until yesterday.

We had breakfast in The West Quay......gosh it was warm in there this morning.

Then to Lewes - slowly.
It has been the Brighton Half Marathon today and I think that all the thousands of runners and their supporters were leaving town about the same time as us.
And then the A27 was down to one lane where water was gushing up out of the road - so slowly slowly along there.

I enjoyed a lovely walk in Lewes
And some sort of childhood dream has been fulfilled.......I have been in The Snow Drop Inn.
Details in the post after this one.

This evening, once Bill had gone to bed, I composed an email to the AD nurse.
I am sure I gave her the impression that I am coping well with Bill's problems.
But I am not really.
And I have even been dragged into thinking "Why he can't just have Alzheimer's Disease?"
Thinking those people are the lucky ones!!!
My understanding is that AD in the early stages leaves the one affected still able to make conversation and have dreams and wants and can plan ahead.
Bill can do nothing like that.
His conversation is very limited; he has all the annoying habits you have heard of and he pokes me, tweaks me and leans forward and stares at me.
He has nothing to say and no intererest in anything.
He doesn't care how he behaves in public.
He doesn't know that he is like it all the time.
This is all frontal temporal lobe dementia.
I feel angry that this dementia was dismissed by the doctor.
I am glad we see the prescribing nurse on Thursday......please, please may she have some answers.
I'll never get my husband back - but I really don't want the naughty, thoughtless 4 year old who has replaced him. And it has happened so quickly.
Last May we were in Thailand and yes, we all knew things were not right - but we did lots of things and had fun. Now, I am very unsure whether we could go together again.


Lewes in February Sunshine

They say that February 14th is the birds' wedding day.
I hope they waited a couple of days - today was a far better day for a wedding!
It actually felt warm.
We had  a stroll in Lewes - part of my life for 60 years.

Look at that blue sky over the castle - a treat indeed.

Looking down The High Street to Cliffe Hill.

The afternoon loungers were in the doorway of the building with the sun dial.

Can't have Lewes pictures without one of Harvey's Brewery.
I have taken loads over the years.

Cliffe Church and cottage.

Cottages under the chalk cliff. It was 60 years ago when I first cycled by those cottages.

The river is full. The water meadows are flooded.

I had cycled by Snowdrop Inn many times.....or passed by on the Southdown bus.
I never supposed I would go in. My parents were not the pub going type.

I always assumed that the name referred to the flower - probably hadn't looked at the pub sign and wondered about the picture.

The pub was built (in 1840) on the spot where a row of cottages had stood. On the 27th December 1836 - middle of a fierce winter, snow tumbled down from the hillside above and swamped the cottages.
It is the worst avalanche, in terms of loss of life, that the UK has ever known.
Some were pulled from the cottages, but 8 perished that day.

Artist's impression of the avalanche. You can see Cliffe Church in the distance on the left hand side.

Stairs to the upstairs room.
Every year on the anniversary of the avalanche a talk is given about the event and a guided walk is also on the agenda.

The pub was crowded with Sunday lunchtime diners, so we took our half pints to the garden, which was also full of diners and drinkers.
It was lovely to sit out in the sun.

The River Ouse from the bridge in the town.

There were a few buskers about in the sunshine.
Loved the music from this guy with a mandolin.

We had parked the car at The Dripping Pan - home of Lewes Football Club.

Before we left we walked though to get some views of The Downs - and here the Priory Church of Southover Street and a jumble of chimneys.

Beddingham childhood summers were spent camping on the side of that hill, facing Lewes and Mount Caburn.

Firle Beacon.

Saturday, February 15, 2014


Good morning Pickles.

"Good morning, Pickles" I greeted him this morning.
No, we haven't got another cat - though that is on the agenda,
I was playing with the words of Pick's Disease.
We then had a discussion about where the Picts came from!
This was quite clever of Bill and highlights that his frontal temporal lobe dementia (FTD) is not the one referred to as semantic dementia.
No, his form is very much of the behavioural kind.
And just now I can't get out of my head that he may be on the wrong medication.

There were letters this morning with hospital appointments.
Bill will have the 24 hour ECG test in 10 days time.
His echocardiogram will not be until April 4th - it needs the ultrasound equipment.
So, no hernia op for a while yet. Fortunately he is not having too much bother - it's not as bead as the one he had before; but that time he had to wait months and months for the operation.
He doesn't remember that.

And this afternoon we were at the hospital.
Bill's sister has not yet been allowed home.
And, of course, Frieda from next door is still in. She is confused about it all.

Then we went to la Rusta......I assumed for a small snack and a cup of tea. But no......Bill wanted eggs benedict. He had had a late cereal breakfast and a sandwich at lunch time and dinner was cooking at home.
He felt quite peeved when I told him he could only have one egg benedict, not two.
I had soup.
They love him in there.......they see him for a shortish time only!
Today, when he began banging the table I suggested he see just how quietly he could do it and that worked briefly.
When he went to pay, Alex let him choose a cookie to take home with him.
I think there might come a time when I leave Bill with Alex and Ana and then get on and do any town centre chores I have.

Dinner was yummy!
I had kangaroo meat cooking with vegetables and a beer sauce in the slow cooker.
I was a bit wary....would Bill like it? Would I like it?
Oh yes, we did!

I phoned Clare this evening, asking permission to stop the Aricept that Bill is on until we see the prescribing nurse on Thursday. She couldn't see that it would do any harm to stop for a few days.
I feel guilty - disobeying a doctor is not normal for me. But I am worried that it is affecting the Picks.
Good to have some family support.

Right, Bill went to bed much too early really. He has just come down and made us both a cup of tea and he can eat the cookie Alex gave him.
I will join him.

Up earlyish - off to Brighton boot sales.

Friday, February 14, 2014


Pick's Disease

Poor old Pick's Disease has slipped under my radar in the last 3 weeks.
It was this form of dementia that Jamie and I surmised might be what Bill has. It particularly affects the front temporal lobe of the brain and leads to behaviour problems and character changes.
And it was this form of dementia which the specialist doctor first said that Bill has.
But the doctor then almost dismissed it because it is a form of dementia for which there is no known medication.
Bill also has Alzheimer's Disease and there are medications that may help with AD on a short term basis.
My reading today tells me that the typical AD medication is not advised for anybody with Pick's - in fact it can make things worse.
I read this in a simple document produced by The Alzheimer's Society.
Today we were visited by the lovely Lucy - an AD nurse.
"Lucy in the Sky with Diamonds" Bill said.
And bother - I forgot to mention the Pick's Disease diagnosis.
I must email her about it. And email the Pick's Disease Association.
Apart from that she was great to talk to and helpful.
The worst thing she  told me was in reference to driving. I should notify the DVLA of the diagnosis and fill in the appropriate forms. I have already filled in the forms - but done nothing about posting them off.
Lucy said that if one doesn't inform the DVLA about an AD diagnosis there could be a fine of £1,000.
Why on earth didn't the doctor tell me that? I asked about driving and she shunned any responsibility on the subject.
The forms have now been posted. Poor Bill - it may well signal the end.
I have asked to pay for a special driving test.
People with Pick's Disease have good spatial awareness.
There is so much to learn and it is only people like me, who follow things up, that ever get to learn much of this stuff.
Next Thursday we see the prescribing nurse.......presumably for more medication. I really need to discuss this with an expert.
The only medication that can be offered to Pick's Disease patients is an antidepressant/sedative type of thing.
That is what he needs - something to stop the constant compulsive behaviour.
Somebody on the AD forum page has talked about Bill's autistic tendencies and thinks that the compulsive behaviour may be connected with that. Autism experts call is "stimming".
She wondered if I could try a task and reward system.
If he does something useful then I would allow him a time of clapping and banging.
He couldn't do it.
I said he could clap and bang for 5 minutes but couldn't keep it going. Just wandered off.

Nothing much else today - enjoyed Winter Olympics. having been at our Olympics, I felt very envious of people there, experiencing a special time.
Enjoyed a GB gold medal of course. Shame the time for Shelley Rudman, one of my brother's ex pupils, has passed now. Glad to see her competing, but she couldn't replicate her medal winning performance of 2008.
It is windy out there - very windy; though I am sure that further west it is much more windy. Maybe not raining right now.
It will be another week without a trip to Ford.
Sunday should be better and we could go to car boot sales in Brighton.

Those who have spent time with Bill or read anything I have written will recognise Bill from these symptoms.
I am not sure if I have mentioned on the blog his tendency to "talk dirty".

Behavioral signs and symptoms of Pick’s disease

  • Impulsivity and poor judgment
  • Extreme restlessness (early stages)
  • Overeating or drinking to excess (when this was not previously a problem)
  • Lack of attention to personal hygiene
  • Sexual exhibitionism or promiscuity
  • Withdrawal or decreased interest in activities of daily living
  • Decline in function at work and home
  • Repetitive or obsessive behavior

Emotional signs and symptoms of Pick’s disease

  • Abrupt mood changes
  • Lack of warmth, concern, or empathy
  • Apathy

  • Rudeness, impatience, or aggression
  • Easily distracted; poor attention span
  • Unaware of the changes in behavior

Thursday, February 13, 2014


Nymans on a sunny, chilly afternoon.

A brief interlude between the 2014 winter storms gave us an opportunity for a brief walk under blue skies.
Nymans is so familiar to us that it feels like our own personal garden.
We walked there today, wrapped up against the chilly wind.

Despite the really nasty weather of late, spring begins to emerge - snowdrops a plenty and masses of hellibores of different colour petals and amazing centres.

Balcombe Viaduct.

There is sculpture at the house - for one more week only.
The bendy laths of wood are symbolising the elements of life within and without the ruined house.
Next Wednesday there is to be a symbolic burning of the sculpture, choreographed to live music.
Very apt, for the greater part of the house burned.

The broom had been left just by the door in the could I resist posing with it?

And then it was time to warm up with a pot of tea.
The cafe had some Valentine's Day treats too - and we couldn't resist.

Delicious - raspberry macaroons with  fabulous chocolate filling.
Better than a card!

My funny valentine
Sweet comic valentine
You make me smile with my heart

You looks are laughable, unphotographable
Yet you're my favorite work of art

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