Grandma P's Ramblings Through Life

I begin today with pictures that may or may not have appeared on last night's posting.
I didn't see them when I just read through what I had written yesterday.
I felt emotional and amazed because a year ago none of us would have envisaged a picture like this.
My daughter, Clare has left troubles, seemingly unsurmountable troubles, in her past.
Here we see a happy relaxed woman, ready to cope with all the challenges that must be faced.


She had dressed up a bit for the installation of the new vicar at church - one of the churches which is holding her attention these days.
Some things have not changed - must be inherited. I think the outfit cost £3 - plus the necklace which may well have come from the bags of jewellery we bought together last November.















Today has not been one of great achievements.
I pootled around for most of the morning, whilst Bill slept. He didn't get up until gone midday.
He had a yoghurt for breakfast - well, no.......it was a chocolatey Aero pot of mousse..
We then went out for a late lunch in the town.
Now we have found La Rusta, I would like to think that we can go there at least once a week.
It is a good place to be and so nice to chat with Alex.
Bill had his eggs benedict.....this time he had one with ham and the other with sausage.
My soup was carrot and coriander.
We then had to go to Asda to get the things I forgot to buy on Wednesday.

It was pouring with rain! Again!
It doesn't matter how many times I tell myself that we are very fortunate here not to have the problems of the Somerset Levels - I still feel totally fed up with the weather.
The wettest January ever.

February will continue the trend.

I should be brief.......I need my bed; it has been a long day.
I left Bill sleeping this morning and went to Ford on my own.
I bought some books and some interesting old kitchen ware for the shop.
Haven't sorted any of it yet.
I didn't go to Littlehampton, but went straight back home.
Bill was up and dressed, which surprised me.
But he slept again later.
But so did I!

This evening we have been out together. I am so glad Bill felt able to come.
We have been timekeeping for the sprints evening in The Tube at Horsham.
Timekeeping is something Bill can still do accurately. And he only forgot to take a time 3 times. He sat down on the chair that is provided for me......his hernia has been really bad.
Consequently I was standing and ended up with back ache.....but I think sleep will ease that.
Bill's pain has eased after I gave him 2 co-drydramol. He just said that the pain seemed to have got better - no connection with the tablets then Bill?
One of our fellow timekeepers advised me not to rush to get Bill's driving licence taken. Gerry is in the police force. The time will have to come, but it doesn't have to be this month.

This afternoon I was looking on line for local day care facilities that might be suitable.
But I spent longer browsing The Alzheimer's Society Forum - a chat line.
I already feel like I have new friends!
Some experiences make me laugh - they match mine so closely. Others make me fearful - telling me of what is to come maybe.
But I found that the Cancer Self Help Group could have also been fearful because friends I made, died. I was never fearful.....those people just taught me that dying is natural and sometimes not the worst thing that could happen. I was happy to be a part of the cancer tribe.
Now I am part of another tribe - the dementia carers' tribe. I hope that you never become a part of either of them.

Now for  a picture that brought tears to my eyes.
It is a picture that  a year ago I never imagined I would be seeing.

How happy I am to be seeing my daughter now.
Well done Clare,
You have battled through your own long black tunnel.
I think you now see the light at the end of the tunnel growing ever brighter.

My husband seems so very far away.
The distance stabs at my heart.
No the loud echoing claps and bangs stab at my heart.
The morning was quiet for me - Bill didn't get up until half past twelve.
Up ,but not for living, but his repertoire of noise.
After lunch I tried to talk with Bill about my life......I know, pointless!
I tried to explain what has happened to his brain - that it is a disease, not him being mad, silly or naughty.
I explained that our brains are like a collection of packages all linked together with something like pieces of string and within the packages, threads connect all the different things together.
I told him that in Alzheimer's Disease the strings and threads get broken.
"I haven't got Alzheimer's Disease have I?"
I don't think it bothers him one way or the other because he doesn't now know what is involved.
I reminded him that the doctor had said so last week.
She gave him a prescription for tablets which contain something to make the strings and threads stronger.
I apologised for getting cross with him and told him how the claps and bangs hurt me.
"Oh, I'll stop doing it then!"
Do I have hope of that? No.
We needed some shopping. Bill decided not to come. I don't blame him; it has been wet and soggy all day.
I went off like a child released from school and enjoyed a big shop on my own.
I have bought foods for Bill and I can concentrate on ensuring that my own diet is better.
What with the stress and everything my digestion is behaving very badly.
But I did buy myself a big bottle of red vermouth - a small glass of that after Bill has gone to bed feels right.
I could have that quite soon......twenty past eight and Bill is upstairs and ready for bed.
His hernia is hurting lots today - I have made sure he has some pain killers and will disturb him enough later to take some more.
Next Tuesday is his pre operation assessment appointment.
I will make a GP appointment to discuss again his other hernia - the hiatus hernia. The uncontrollable loud belching is as bad as the clapping! He was given some peppermint oil tablets - and at first didn't bother to take them. Recently I have put myself in charge of all his medication and we find that the peppermint oil does nothing to control the belching.
Before he went to bed, I asked Bill if he knew the name of the disease the doctor said he had.
He didn't know.
"Alzheimer's Disease" I reminded him.
"I haven't got that have have I?"
So, we were right back at the conversation we had just a few hours earlier.
It was a chat - with me talking and it did me good maybe........and made no difference to Bill whatsoever.
But tomorrow is another day.
A dry day hopefully - cloudy and chilly maybe; but dry would be good.
I want to go to Ford....I am in the shop on Saturday, so I can't go then.
Bill plans to come with me. I hope so.

I wonder if I am right?
Of course, I think that I am!
I felt it was important to get Bill out today. We had both been at home all day on Sunday and he was at home alone yesterday, I saw very little of him. I think he was only up for about 8 hours - he went to bed at half past eight.
The forecast for the day included showers and later persistent rain. And that's what we got.
It was raining when we arrived at Polesden Lacey; we sat in the car for a while - where I encouraged Bill to create a story about a monster. We didn't get very far really. But who knows.....Spotty, the monster who lives in a cave might let us know more about his adventures!
The rain stopped and we walked along the soggy paths under mostly blue skies.....just a short walk.


Look at him! He's enjoying some warmth on his back.
Did I say warmth?
Well, not really - the wind was chilly.


























































The last rose of summer and the first spring daffodil.
Snowdrops and aconites.
And the most surprising flower to find in January, nestled under some greenery by the herbaceous garden wall.





































It is a wonderful wall.























































Hole in the wall.
































I was about 30 metres from the robin up in the tree. Does he look grumpy to you?






















View from the house, which was closed. It is undergoing necessary work during the winter months.


House window, framed by pyracanthus,
































Before we left I encouraged some fun with the cherubs.

























































Polesden Lacey is only a few miles from Dorking and we went there for lunch, in The Surrey Yeoman.

I so enjoyed the red sweet potato curry broth - thick, with large chunks of sweet potato, peppers and coconut etc.













Tomrrow I will spice up and thicken last week's soup I made with some sweet potato and red curry paste.

After our food we called in at the shop.
Jo and Mick were there and Mick's friend, Jules.
We enjoyed tea and cake together.
My takings today surpassed yesterday. I took £3 today!

I hope Bill enjoyed the day. It has been a bad one for clapping, banging and other noises.
Mutter under breath "Let it Be, Let it Be, Let it Be!"

Few words tonight.
Few words for a few sales.
It was indeed a quiet day......I sold something; but let's not get excited. It was a slightly naff ornament that I took in from the old lady, Iris, who brings things to me now and again. I didn't want it. But I like to buy from Iris because I admire her spirit........now, is that the way to run a business?
But who says I am a business woman? That is not how I see myself. I seem myself as a woman with a hobby, a passion  which costs me nothing and indeed does bring in a small profit.
I sold the ornament for £2. It was in my bargain corner. Bargains have sold well this week.
I did a little more stock taking - almost complete now.

Steve and I got absorbed in his family and radar history.
The family have had a picture of his grandfather and 3 other men standing outside what looks like the base of a windmill - except that through the door there is a glimpse of machinery not normally found in  a mill.
Grandfather worked at Farnborough during the war - an aircraft establishment. Steve's brother took the photo to Farnborough museum to see if they could shed light on it. Their answer seems ridiculously vague.....it might be in Suffolk.
It didn't take me long to find much more information on the internet....love my smart phone, always there to give me instant access to knowledge.
























This is Black Beacon at Orfordness - a remote and windswept land. It was built in the 1920s and housed equipment for radio navigation and bearings were also taken at Farnborough.
This all ties in - Grandfather was working on radar.
This tower rotated at a speed of 6 degrees a second, which seems quite fast.
Steve assumed that the tower had long since gone.
But it has been restored. I remembered a TV programme about windswept concrete "huts" that were once top secret now being developed as museum pieces on the Suffolk coast.
And I have found a clip from that programme now.
I think Steve's family will have a day out to Orfordness in the spring.
In fact, having looked at it all - I would like to go there too!

So, it was a good day at the shop.

And now I recommend Jamie's latest blog posting about Phang Nga Province. (Pronounced Pang Nar - roughly).
I have been to almost all the places he featured on this posting.......except Heaven!
They thought I wouldn't have the legs for the Stairway to Heaven
Exploring Phang Nga Province

That was Sunday....quite wet, but not as bad as forecast and not as bad as yesterday afternoon when we, in the south east experienced a miniature tornado.
In Cobham (Surrey)  apparently feral cats were flung into the air by its force. Maybe the news reporters assume that all domestic cats would have been safe in doors during such weather.
We had made no plans to go out today.
But we have been glad to welcome Bill's sister, Lesley and her husband Peter for some tea and cake...and a bit of a catch up.
This morning I priced up all that I had bought yesterday and have a shopping trolley full to take to the shop tomorrow.
Brrrrrrrrr! Likely to be cold in the shop tomorrow.

I enjoyed looking through my art book of over 20 years ago.
When I was seriously ill and it was assumed that I was getting close to the end of life, I was encouraged and found great contentment in poetry and art.
It was a very worthwhile time filler. And I am grateful for all the encouragement I got.
The patients in the hospice day care centre (and I was one 3 days a week) benefited from an art therapist.
I look back with fondness to a day when the group of us created a huge picture incorporating the imagery of the Leonard Cohen song Suzanne.
I love Leonard Cohen - a true poet.
I was there with my friend, Suzanne. Other patients saw us as the young and lively ones!
Suzanne, alas, was not so lively. She died about a month later.
Today I looked at my doodling - doodling with pencils and water colours.
Friends  gave me the art materials; some remain and maybe I can persuade Bill to sit with me and create pictures.
I found that what I had created interested me......a little talent could be developed if I put my mind to it.
I photographed some.....and a few I added to with digital photography techniques.
Happy to combine the creative juices of then and now.






















































































This is not copied from a picture.
Paddington Bear posed for me!

























Now for some colour doodles.




























Bill felt he had never seen any of these pictures.
I explained that I had done them 20 years ago.
His reply quite shocked me.........."Before we got married."
I asked him when he thought we got married........ten years he thought might be a bit recent. He opted for 15 years.
But he sort of got there in the end.
I asked him old he was when he married me and he thought it would have been when he was 20 or 22.
So how long ago was that?
Out came the fingers for counting and he was aghast that it was 50 years!
We have been together for nearly 52 years and it will be our 49th wedding anniversary in the summer.

Today almost felt like a normal day - let's put Bill's brain on the back burner; it is cooked enough already!
Bill got up early this morning with very little bullying.
He drove to Ford and I relaxed......he is safe.
By the time we got there the murky pre dawn mist had lifted and some sunshine lit up the day.
Bill walked around with me as I rummaged and delved into boxes.
I didn't buy very much really. I am trying to avoid too much china and glass - I am always looking for things which are different and with character.




























The black and white armchair and set of drawers are modern (but very retro) and they are jewellery boxes.
The Bookano Stories date from 1937, with pop up pictures inside.
It is in good condition, but less than excellent. An excellent copy would sell for £70/£80.
I love the 1950s wedding cake decoration - plastic and slightly naff, but was so meaningful to somebody.























And so, into Littlehampton for breakfast.
Breakfast on Burns Night.
For one week only Wetherspoon's celebrate Burns Night by putting haggis on the menu - last day today.
I didn't want to miss out this year so I ordered haggis for breakfast - very tasty and very filling.
My own picture of what is not very photogenic food made it look rather like a plate of "puke".
So I have another picture - and it does at least have a Scottish look to it.


























Bill's hernia was giving him some pain - he didn't fancy a walk. Best not to push him.
So he drove us home again.
Still very safe......maybe we all tend to get a bit nervous with other people's driving.
And this morning I didn't have to direct him once.

We got home to find an ambulance outside.
It had been called to attend to Frieda, next door. She had fallen in the bathroom. Her son told me that she seemed quite perky but her hip hurt a lot.
This is worrying for a woman in her 90s.
She is now in hospital. I have not yet heard the results of any X Rays or other tests.

We made cups of tea, turned on the TV to relax a while. Bill slept so quickly that neither his drink or his biscuits got touched.
The film Free Willy was on - I saw the beginning and the very end. I slept through the middle.

Later I went to see our neighbour, Rose to tell her about Frieda.
This left Bill to deal with the man coming to give an estimate to replace the back fence and gate.
It's a bit more than I hoped - but easier to accept than spend a lot of time and delays trying to find somebody a bit cheaper.

Bill has been helpful today - more than just washing up.
He hung the laundry upstairs for me and has made me cups of tea.
He has banged and clapped a lot, of course and memory lapses occur all the time. He cooed at a doll of mine......"I bought that in York" I told him.
"Of course you were at York, weren't you?"
"At the university?"
No, Bill, I wasn't........and then he dragged the place name Isleworth from somewhere, which is correct.
He didn't know who had been to York - our son.

One of the things that I sorted from the back bedroom yesterday is a box of art materials and some of my efforts.
Think I'll photograph some of them tomorrow.
There were some self made greetings cards.
"I made those when I was in the Marsden Hospital" I told him.
"When were you there?"
He seems not to remember that long and dreadful time. Dreadful for me......and certainly more dreadful for him (and all of you who were there).
But either he can remember or worked out that it would be more appropriate to remember, the week I almost died; he and my Father had to ask the doctor to continue with tests, however intrusive.
I came out of the coma in intensive care and some problems were solved and I was alive.
Bill then asked more sensitively than I have heard him of late....."Did you want to be alive?"

Far, far too early to think that the medication is making a difference. Two months the doctor suggested - not two tablets.

My things to do list was long.
Some of it was stuff that needed to be done - the rest of it, well.......I guess I just needed to be busy.
I have made soup, a quiche and an apple and raspberry pie. I have done the ironing. Started sorting things we don't need in the back bedroom - apparently we might need Youth Hostel handbooks and membership cards for 1959 again one day!
I took Bill to the hair dresser for a cut.
Interesting conversation....I have got to laugh!
Bill:: Oh, I should get a haircut today
Me: Will you phone to make an appointment or shall I do it?
Bill: You do it.
A few minutes later.
Me: Your appointment is at 12.30.
Bill: Appointment for what?
Me: An appointment to have your hair cut.
Bill: Oh am I having a hair cut today, I didn't know.
I have spent time on the phone.
I phoned the DVLA - damn it, they had to speak to Bill under the data protection act! But once they had confirmed that he was who I said he was and living at the address I said, I was able to sort things. They will send a medical assessment form. When we have sent it back there maybe an appointment with a doctor, or a doctor far away will decide without seeing him or seeing him drive.
I phoned the insurance company.
The young girl told me that if no doctor said he was unfit to drive then he is covered to drive.
Others have warned about small print get out clauses.
I think it looks OK.
One thing that I feel is not OK - yesterday the doctor gave us details of a 3 month free sample of a nutrition/medical supplement which may help Alzheimer's sufferers. Souvenaid.
I wonder how much the doctor gets paid for handing out these leaflets.
Research shows that some trials have found some improvement for early stage dementia people, but the Alzheimer's Society are dubious.
In addition the cost would be prohibitive for many patients at over £1,300 a year.
Yes - that much!
The Society says it would be better to spend a thousand pounds on the right foods - always assuming that the patient will eat them.
But I do now have  a list of what is in Souvenaid. We have never been anti supplements and know of on line companies who supply them.Maybe I can see a nutritionist and together we can sort out what Bill might be lacking.
Time for bed. It has been a long and busy day.
I plan to go to Ford in the morning......and at the moment Bill plans to come too. But it does mean an early start.
In the afternoon I have somebody coming to look at our back fence and gate. I think I shall just go for a complete replacement.

I think I will look back on today as a good day.
It certainly hasn't been a life changing day.
I have learned nothing new about Bill's condition - just had it all confirmed.
Dr Czerodi began by talking about the way Bill's brain has degenerated in the frontal lobe. Jamie and I had worked that one out for ourselves - we needed no MRI scan results.
But my pride in my analysis waned somewhat when the doctor said that Picks Disease (as this can be called) is not really good news because there is no medication to make any possible improvements.
It is probably a good thing, therefore that there is also evidence of Alzheimer's Disease.
Scary words!
Scary - like the word cancer. No hope words.
But for the immediate future there is medication - several options.
We begin with donepezil - also known as Aricept.
Bill takes the first tablet tonight before bed time.
Side effects are quite common - mostly nausea, headache and gut issues. Maybe he will be lucky - maybe not. He begins on quite a low dose.
This medication is prescribed to help with the memory loss and can also help somewhat with behaviour.
A friend tells me that it is similar to her son's medication for Tourette's syndrome.
The doctor, a psychologist, was observing Bill very carefully the whole time.
She then suggested that some of the repetitive rhythmical noises could be triggered by autistic tendencies.
At which point I told her that I had felt sure for some time, that Bill demonstrates behaviours and attitudes which put him very much on the positive end of the autism spectrum.
It has caused some difficulties in relationships, but Bill has always functioned as busy working man.
So, we have a complex brain inside Bill's head and one which is  no longer functioning properly.
In four weeks time Bill will be seen by the Alzheimer nurse and also a nurse in charge of prescriptions and medication.
If Bill has coped well with the low dose donepezil he may be put on a higher dose.
I doubt that we will be seen by the doctor again for a long time.
 She is so over stretched that she can only see people for their first appointments after diagnosis.
I just don't know how much of all this Bill has taken on board.
Up until now I have used the words "memory problem" or "Picks Disease" and more latterly "dementia".
He refers to it all as "just me being silly".
Today may have been the first time he has heard the word "Alzheimers" in relation to himself. And I know that this morning he didn't take that it.
Later, in la Rusta, I went through the appointment again with him, explaining all that had been said.
I thought in a friendly atmosphere where he might be more on his best behaviour might be the best place to go through it all.
Still, I don't think he understood.
Did he really understand when he queried, later this afternoon, my use of the word "Alzheimers"?
"I haven't got that!"
I have discussed driving with the doctor. Her opinion is that if the DVLA allow him to keep his license then he is free to drive.
I must contact them tomorrow.
I also want to check where we stand with car insurance.
The DVLA can arrange practical tests. I will ask about this. I would rather pay for that in the hope that Bill could more happily accept the results or maybe just happily be allowed to continue to drive a little longer.
To be fair to other people I should drive when we have any passengers in the car - whatever is decided.
So, there we are.
We are a little further forward......but going forward is scary for me.
There is a long dark tunnel which I have no choice but travel through.
I must plan ahead a bit but at the same time live one day at a time.
There are many people whose tunnels are longer and blacker.
Life is not as I would want it......but it is the only life I have. I must strive to make it the best living I can manage for me and Bill.
I am coping today.
I will probably be coping tomorrow too.
The days of not coping are in the future - a strange place that I, as yet, know very little of.

After a stroll around the hamlet of Streat, we wanted some lunch.
The Streat walk is also featured on this blog - the very next posting.
Our choice of pub led us to good food and a few hours learning some history.
We have driven by The Plough many times before and, regretfully, I thought the building looked rather uninteresting.





















It was built shortly after WW2 - early 1950s.
Now I know of a much older Plough pub which had been demolished during the war to allow for an Advanced Landing Ground - Chailey airfield.
The landing strip was chosen - The Plough and 2 cottages sat at one end and had to go.
The airfield was operational from 1943 to 1945 and allowed Spitfires and some other planes to cross the channel to support the D day Landings and the route through France.
Chailey was almost entirely manned by Polish pilots, who were well respected by the local community.
A temporary pub was opened in an old army hut and thus social life continued for all.
Pilots enjoyed their life in peaceful Sussex.
But it was not all peaceful and some few planes were hit and pilots injured.
Two pilots were never to return alive.
All the men are remembered at The Plough, in particular those who gave their lives.





































Kurowski had to make a forced landing in France, whilst badly injured.
He hit the ground too hard and the plane exploded.

Adamek's death moved me. He had been hit over The Channel and was flying home, wounded. The plane was losing height and he was instructed to bale out.
His parachute caught on the tail of the plane and he went down with it.



















But let's go inside the pub and cheer ourselves.




































What could be more cheering than a half of Harvey's Old Ale?























And a sandwich thick with sausage and chutney......with masses of salad and red cabbage cole slaw.


And a roaring fire.


The pub is basic.....no 1980s tarting up!
Wooden floors, basic furniture (though we were glad to sink into the old leather sofa), very little ornamentation - but good food and ale.
It seems to be popular with locals.


























The dog is Zeena.





































































Zeena pleaded for a bit of our food - didn't get any. Sorry, Zeena.

After a good while of eating and drinking and relaxing, it was time to make our way home.



Beautiful pub sign.

Of course after almost 70 years the airfield has reverted back to farmland.
















































Looking south from The Plough to The Downs.
There is a big garden and a children's playground - ideal for family visits in the summer.





























Winter afternoon - Downland View.

January 2014.

Streat....we had never been there.
But unless you have some family connection, why would anybody visit Streat?
Streat is almost hidden from view, tucked in the crevice of a narrow lane between Wivelsfield Green and The South Downs.
The population is a mere 179 - and those people must travel to other villages for shops and schools and such like.
They have services though, each Sunday, in the church.
I like to explore a place not yet discovered by me - and yesterday I explored Streat (pronounced Street).
It was intended to be a non muddy sort of walk.......but apart from the solid surface of the narrow lane, all other by-ways were tracks; well maintained tracks, but muddy after all the rain we have had.

We parked on the track outside the church, with lovely views to The Downs.






















The early morning fog left droplets clinging to the pine needles.



























































But we had stopped to see the church.

Streat Church.

It is unusual in that it has no dedication to any saint.

There has been a church on the site for centuries, but now has quite a Victorian feel to it inside.

I suspect that the owners of Streat House, adjacent to the church, reflected their Victorian wealth by making additions to the church.

It is bigger than the local population now needs.
































The 18th century mansion remains privately owned.

Iron grave stone.
There was an even bigger one, reputedly the biggest in the country, naming almost everybody, dead or alive, in the Gott family in the 1700s.




















My first snowdrop sighting of the year.

































Streat phone box, outside the church.
Caked in mud at the base after the recent floods.

There is still a phone within.....I wonder how many of the 179 Streat people need a working phone box these days.












































Track opposite the church.


























I love windows  - and the hung tiles.


This window made me smile.

Who lives in a room with all those bottles of nail varnish?






































We could clearly see the V on The Downs.
It was planted to celebrate Queen Victoria's Golden Jubilee in 1887.
3060 plants were used at a cost of £12 10 shillings and 4 pence.




























And looking northwards we glimpsed the Wealden view.

January 2014.