Wednesday, April 30, 2014


Another day.

When faced with a crisis we tend to think......"one day at a time"
There have been enough crises in my life maybe for me to have truly learned that lesson.
I am surprising myself by being calm and cheerful.
The future is, the future and there is nothing I can do about what will be.
I still have heard nothing about the MRI scan.

So today stands alone - hardly connected to the future or the past even.
I can tell you though that pain has dominated the day.
I found walking, lifting, bending and twisting hard. I walked clutching the offending area under my rib cage - putting pressure on it eases things a little bit.
Pancreatitis pain can be very powerful. Maybe it peaked today? Or maybe it is reminding me that I must be so, so careful about what I ask my pancreas to do.
I don't know about you, but I find it very easy to pop things into my mouth without thinking.
I did that yesterday with some chocolates in a box of celebrations.
Just one........and then just one more!
I had too many.
Sorry pancreas, I won't do it again.

At lunch time today I went out on my own for a while. What a delight to wander around Asda without Bill in tow.
I went on to the hospital for blood to be taken for testing.
This afternoon Wendy, our social worker came round. The pain meant I didn't take in quite as much as I should have done.
But what I can see is that care is being slotted into place quite rapidly. I really did mean to leave decision making until after that day in the future when I might know what must happen to me.
I shall have somebody coming to the house on Monday afternoons, when I am at the shop.
Debbie will be my cleaner on Tuesday afternoons.
I think we have agreed that Bill will go to a day care centre at Cherries on Wednesdays., the care home built on the site of my old village school.
Bill is not keen, but I think has accepted that it would be a good idea to get to know people at the home.
Don't kid yourself, Paula - he has forgotten that we have even discussed it. But he did agree to give it a try.
Wendy was alarmed that Bill is driving. I have been monitoring things very carefully and I feel sure he is safe.
But I do know that even a small prang could prove a big problem; even if the other party was in the wrong they would be able to claim that Bill shouldn't be driving.
His driving assessement, which I had to re-schedule will be in 3 week's time.
But Wendy couldn't leave it at that. She has contacted our doctors. Dr D rang late afternoon to ask to see Bill tomorrow.
I am assuming that Dr D might tell Bill that he shouldn't drive until after the assessment.

So, another day in dementialand.
A sunny and quite warm day too.
Much easier to find pleasure and beauty around me on such a day.
Two appointments tomorrow - clinical psychologist and Dr D.

Tuesday, April 29, 2014


Content and sensible.

I feel content right now.
Despite everything, I feel good.
I have been out this evening for a couple of hours and met up with people from the Friday group.
Cups of tea and chat are so so good for me - especially when I don't have Bill with me. Sorry Bill, but your company can be very tiresome and tiring and I am constantly watching and waiting for problems when we are together.
I feel a kind of wonderful freedom to just go out and be with people I care about and incidentally get help, advice and support.
I have now arranged that Julie will come to the house on Monday afternoons from 12 o'clock for 4 hours to be with Bill.
I will be paying for this of course. It's no good me griping about spending money - this is a necessity; just the sort of thing we have been careful for all our lives.
That rainy day we were saving for has arrived.
It certainly means that I can continue in the antiques centre -  while Bill is at the present stage of dementia.
He will be in bed until about the time that Julie arrives and he will have a little time on his own after she has gone.
He doesn't need personal care, but I am happier that somebody will be with him. They could even go to La Rusta if they want!
I wasn't going to set this up until I knew what was happening to me, but Julie was at the group tonight and so I went ahead.
My GP, Dr. O made me feel good too. He has a feeling that I do not have cancer and I so want to believe him. Mustn't forget though that he also said Bill did not have Alzheimer's Disease. And he was actually fairly right really - because frontal temporal lobe dementia is not the same thing.
It's an awful thing! And Dr O is very receptive to the concept of me needing lots of support.
Well, I should think so - pancreatitis, possible cancer, man with dementia and a very tangled fraught medical history; it's enough to shatter anybody.
And maybe we can now add other possibilities!
I am to go and have more blood taken for testing tomorrow. I think he is still of a mind that the parathyroid glands might be out of balance. Or maybe my autoimmune system is becoming more broken.
Mind you the antinuclear antibody blood test could also show up Hodgkins Disease! Been there, done that! An easy cancer to cure they said - but as it turned out nothing about that time was easy for me.
I have an appointment with him again in a fortnight - the day after I will have seen the hospital specialist about my MRI scan.
Apart from these trips out, it has been a lazy day. I do feel tired a lot of the time.
If the opiates are making me tired, then so be without pain feels better.
I did one of those silly quizzes on facebook today....what one word describes you?
It said that my word is "sensible".
Maybe that is just as well - there is just too much to be making a drama out of everything.

Monday, April 28, 2014


Onward to battle.

So what do I know today that I didn't know yesterday?
The answer is - not much.
I had the internal ultrasound scan this morning and there is no doubt that I am very sore up there.
I don't know exactly what they have seen - and nobody seems to be any wiser about the cervix issue. Have I got one or not?
If I have then there is some thickening of the cervix wall. If I haven't there is some thickening of something else.
It is quite plain that although nothing is certain, the doctor has cancer on his mind.
And it is now getting firmly fixed in my mind.
The plan now is that I will be called for an MRI scan without delay. The professionals will have a joint meeting - and that does include cancer specialists.
I will see the doctor again in 2 weeks.
I hope they will be more sure about what is happening to me.
I may have to be investigated further under a general anaesthetic. Past experience tells me that whilst I am under they will do anything that can be done and that could include more major surgery.
I cried there, with the doctor.......hell, I really could do without this, couldn't I?
I have pretty well decided that I must take on board the worst possible scenario.
I need to be working through all that might be needed for Bill if I am to be indisposed. He may well need respite care for some time as I cope with what might be happening to me.
Thank goodness I have already been in contact with Wendy, from social services.
Tomorrow evening I will talk things through with her.
Bill doesn't really understand what is happening. I told him things could be pretty serious - but he didn't get that. So I uttered the word Cancer.
Soon he was announcing that he could see he would be burying me within a year! Like a child, he says the first thing that comes into his head. The word won't be mentioned again.
I have told him that if I have to have time in hospital he, too, might have to be cared for. He doesn't know why that is the case. I lied. I told him that now social services know about him, he wouldn't be allowed to stay home alone.
But that is all in the future.
Things might not be as bad as we fear - but somehow, I sort of know.
I had promised Steve, that I would get to the shop for the afternoon. I was glad of the peace.
But I might as well not have bothered.
Customers not out and about today.
I arrived home to find Bill on the land line chatting with somebody and grunting "Mmmmm" to whatever was said to him.
It was a charity call - and Bill was agreeing to give £3 a week, or £12 a month.
Thank goodness I got home when I did.
I picked up another phone and butted in. I told the guy that he might not realise it but he was talking to a man with severe dementia.
Well, he didn't know of course and was apologetic.
I keep telling Bill not to answer anything except the mobile phone I bought him - but that doesn't sink in. Answer - I should not leave him alone.
I will wait for 2 weeks now and then I must make sure that there are people to come in when I want to be out. Perhaps a cleaner is just what I will need to be in place.
I will make sure that a few people know his mobile number.
I have felt rough for a while this evening. That pain that goes right round my middle and is assumed to stem from my pancreas really upsets me.
I began to mourn for my life......would that be it for the remainder of my life? Pain and Bill's noise?
I have avoided the opiate pain killers for 2 or 3 weeks, but this evening I took 2 co-codamol and I began to feel more content.
All I can hope for during the next 2 weeks is some time of feeling content.
In truth I feel extremely fed up and bothered, of course. But I have to learn to squash that and take pride in dealing with things as well as I can and be ready for the fight once again.

Sunday, April 27, 2014



The day was OK to begin with.
Bill came into my bed to have a morning cup of tea and he watched kid's TV. He was quiet.
Later we went out into town - maybe that was his downfall.
We went to The Mall - very rarely go there; on this wet Sunday afternoon it was crowded and noisy.
I am trying to increase the number of objects that Bill can finger and manipulate to keep him occupied.I think these are fun.

They can be pulled all sorts of ways.

Bill started cackling in The Mall. But we popped into a couple more shops and then went to La Rusta.
"Get the funny men out and show Alex" I suggested.
But he didn't and banged the table and the wall instead.
So, not relaxing at all.
Bill slept a while when we got in and I felt numb and exhausted too.
No noise when Bill is in his safe nest. I tend to allow him to sleep a bit too long I think.
My niece (with an autistic son) had put an interesting video on facebook, whilst we were out,  trying to show how an autistic person might perceive a trip to the supermarket.
The film was deliberately out of focus and the noise was intense.
Is that how a person with dementia might also perceive such an environment?
My niece explained that her son can go into meltdown - either protest with temper and screaming or maybe he just switches off from reality.
Did this happen to Bill?
Yes, it's possible. Lesson learned I think - don't take him to The Mall. It's scary!
The noise continued through dinner - neither of us felt at all hungry anyway.
The noise Bill makes just shuts me down - can't think, can't move, can't eat. Except suddenly I was thinking about my  appointment at the hospital tomorrow morning. And that's scary too.
On evenings like these I begin to feel desperate again.
At least I have tomorrow to myself - about 3 hours at the hospital and then I will go to the shop. There was nobody able to cover for me or anybody I could pay. Steve will have to manage alone until I arrive.
I am beginning to worry now about leaving Bill for so long. I must get something into place for Mondays as soon as possible.
Right I want to climb into my safe nest now, after night time pain killer - the pancreatitis has not yet gone away.


An afternoon in Buchan Park.

Buchan Park pictures.

Caught in the act - telling him not to be silly!

You may have spotted sticks. Bill has one. They are actually litter pickers. The family had been out litter picking in Ifield during the morning.

Old tree stump - reminded me of a waterfall.

Saturday, April 26, 2014


A bit more normal - except my computer.

All in all a really good day. First I had Bill sitting quietly, engrossed in CITV. Then out for a walk with Felix and Otto and Bill enjoyed himself with them. Otto insisted on taking Bill home with him to share chocolate. And I could relax with a cup of a tea and Jenny and Ruth. Sweet of Ruth to include us in her afternoon. Bill was a bit noisy this evening, making me feel a bit niggly of course. But I am happy - it was lovely to be out and feel more like the real me again.

That is my facebook summing up of the day.
I have photos and I will post them tomorrow. I really enjoyed taking the photos and working on them.
And this evening I can't get them properly loaded onto FB. It could be the fault of FB - somebody else has been having trouble with pictures and videos today.
I put 30 photos into an album and all I got was the first 7 just going round and round.

Oh CITV is children's ITV - programmes even simpler than the BBC children's channel. But Bill liked the programmes and the adverts,

Frustrating end to the day. Bah!

Friday, April 25, 2014


Today at Forget me Not.

I thought I might be in for a hell of a day - from the moment that Bill refused to get up.
I wanted him  up so that we could go to Forget Me Not.
" You can go on your own" he announced.
"I am not going".
"But, Bill your dinner is ordered."
"You'll have to eat it," he replied.
Change tactics, Paula. Lie!
I told him that going to the group was part of his medical treatment, which the doctor says he must do because it will help him.
It's not a complete lie is it?
And........slowly, slowly he got up, washed and dressed.
I thought he would retaliate and be disruptive at the group. But that didn't happen.
He accepted the friendly greetings, the cup of coffee and some biscuits.
He and I then settled down to a game to a game of dominoes.

We had 2 games and Bill won both times.
He was relaxed and smiling. I like that set- big and tactile.
After those games he was encouraged to play a ball throwing game - get the balls through holes to score points.

Mandy got him started.

Then Bill played John.

The ball went close to one of the scoring holes - but missed. I think it was quite difficult.

We celebrated Malcom's birthday.
Beverly lights the candles on his cake.
He is 80 and had a bit of  a hardtime because his  wife has just been in hospital for a hip replacement.

I love this picture.
Cake seems to have been much enjoyed.

After lunch Bill and I played a game of sort of bowls together.
Bill had banged a clapped a bit - and cackled. But it was not as bad as it can be.
In fact it was hardly disruptive at all.
I sat with other women and was happy to chat and feel relaxed.

It was nearly time to go. I gave Bill my camera and asked him to take pictures of people.

Fred posed for Bill.
Love the hat, Fred.

And Bill persuaded Mandy to pose too.

Bill went to lie down once we got in, so the peace continued for a while.
But for the past 3 hours he has been difficult and seems to be in no hurry to go to bed.
But he was upstairs on his own for a short while.
He came down to ask me a question.
"Are we in England or Thailand?"
"Look around you, Bill - whose house are we in?"
"'s our house."
"And where is our house?"
"Oh - I must be losing my mind. But we were in Thailand this morning weren't we?"
It is no wonder that he needs some outlet for this confusion and tension - and in Bill's case it is to make noise. Making noise must be the only time he feels he has any control over his life.
How else can he be given some control, I wonder.
It must be awful to feel helpless.
Mind you, that's how I feel after hours of banging.

Thursday, April 24, 2014



Quick round up of the day.
Clinical psychologist came - asked Bill lots of questions. The same ones that I had answered from my perspective about all that is happening to him.
First he told her that he had a brain bug - I like that term for him to use.
But it does seem that he feels that the brain bug has hardly altered him. He claims to have a good memory.
He concedes that he has lost interest in things.
I managed to get him to put on a good display of his noise - which unfortunately he hardly stopped for the rest of the day. Ouch!
We had a half hour break and then somebody came from the memory assessment service. Nice lady - but too late. I think she was coming with advice about how to procede with a view to day care etc. She was going to encourage me to make contact with social services.
Thanks to Forget me Not, I have done that.
Bill had had enough. He stared out of the window and then said he needed the loo and went upstairs and didn't come back down.
A bit later I went up to tell him we could go out and oh dear, he was in bed in his pyjamas. He wanted no more of the day.
I think it would be best to get a bit tired and sleep at night and I persuaded him to come out with me.
I had to pick up the pair of cordless phones that I had ordered from Argos. The pair we have stopped working and I am getting fed up with missing calls because I heave myself out of the chair too slowly and don't get round to the main phone on time.
He was a pain in Argos - clapping and silly laughs. He tried to create an audience of a pair of children, but failed. I think they were very wary of him.
To make it a bit of a trip out, I took a snack and a drink and we pulled up on the grass verge at then of Gatwick runway and watched airplanes for a while.
Then home for more noise than I could cope with. Stay calm, Paula - don't shout! But he knew of my distress. Whatever happened to conversation, however trivial. I asked him what he liked about the garden - well, it's looking good, he said.  I pushed - what do you like best? Finally he mentioned the bluebells. End of conversation.
Oh bother - gone half past ten and he has just come down again for a drink and to bang the kitchen work tops.
Double bother - I was beginning to feel relaxed and ready for bed.
But I can go to bed proud because I have set up the new cordless phones. Tomorrow sometime I must put in the numbers of all those I might regularly call. Now I must remember to make sure I have one with me when I am sat down.

Wednesday, April 23, 2014


Getting started

Very tired - Don't feel so good tonight
I got up quite early (for me) and got a few things done, like finding National Insurance numbers for the Attendance Allowance form
I even worked out how to use the scanner on my printer, which I have not used before.
I certainly haven't done everything on my things to do list.
This afternoon we went into town so I could talk to someone at the bank. I now have an appointment for 2 weeks time.
We spent time in La Rusta, where Bill was reasonably behaved
Shame he can't remember Anna's name. Just earlier he had demonstrated that long memory is much better
We met Doreen, wife of Vic. Bill had been Vic's apprentice in1955. Bill knew who Doreen was.
Home to doze.
Hard to doze in such an unrelaxing house.
But at least I made a start on doing things
I do hope I feel better soon.

Tuesday, April 22, 2014


My evening out.

I think I will forget about the daylight hours - not much fun really.
The pain is dragging me down and making me tired and fragile.; Bill drags me down too........but you know all that.
I had an evening out planned - no, not clubbing or anything like that; it was better.
The Forget me Not Group has a Tuesday evening session where carers can go to socialise a bit or to sort out problems, No wonder we were late finishing - there are lots of problems.
The  result of the evening is that Bill and I now have a social worker working on our behalf.
Wendy knows the ropes and has told me of many ways that Bill, and therefore me, can be helped.
I look forward to the time when some of it can be in place and is part of our routine.
There are day care centres or alternatively we could have individuals in the house with Bill or taking him out.
It was suggested that we get in a gardener and cleaner once a week - maybe Monday afternoon so that there are people about when I am at the shop.
And Wendy has filled in the long, long form to claim attendance allowance.
This is wonderful because this will help fund care and support.
And I have been advised about the basics of finance when it comes to care homes and day centres. I thought if we, as joint bank account holders, were limited to a certain amount of savings to get government funded help.
That is correct. But if I have a separate account, that money is not taken into consideration. My money is none of their business!
So what I must now do is alter the financial arrangements we always thought best to have and split the money between us, making sure that Bill doesn't go over the specified amount. I may need some Bill signatures - but I am sure he can do it to order and not even know what I am doing. I have been in charge of our affairs for 9 months now anyway and Bill shows no interest in knowing anything about it. Just as well - I am not as diligent as he was! He always had a little book in which income and outgoings were written and then ticked at the end of the month with the bank statement. I check the same things on-line and write down nothing.
So today nothing has actually changed and yet, in a way everything has changed.
I feel somewhat empowered because somebody has been able to tell me what to do. The road ahead will continue to feel hard, but I now know there are ways to ease it, for at least some of the time.
And the result of all this is that I feel happy tonight.
Wendy will come and see us next week - by which time I shall have sent off the attendance allowance form (book).
We also have people coming on Thursday - the clinical psychologist and Bronwen. I actually forget who Bronwen is, but she's from the memory assessment service.
I would like to know how a psycholgist would assess Bill. Just maybe, sometime, he could have some drugs to calm his behaviour. There may be side effects or future harm as a result of taking them. Well the future can be disregarded I reckon if Bill and I could get a more comfortable way of living now,
Their visits will break up the day - but nobody has been as special and supportive as the Forget me Not group.
Those people have become my lifeline and will save me from drowning - along with all the people (family and friends) who are putting themselves out to make sure I am OK and offering their time with practical help.
Maybe now, I can find me again. You know, the one who looks on the bright side of life as much as possible; the one who can turn negatives in life into positives.
Time for some relaxing sleep, I think.

Monday, April 21, 2014


Bill and Ellie.

Another lazy morning. Bill doesn't ever seem to want to be up until midday.
I was dozing too. Feeling fragile and bothered.
My future wasn't looking bright - maybe with good cause.
Next Monday I will have a 3 hour investigation in the gynaecology department and I have fears.
I have pains too. The pains are very like those that got increasingly worse before the bladder was removed. Well, at least they can't do that again - but what now?
But I had said to Bill that there should be a trip out - The South Downs or Brighton Marina felt like too much of a challenge.
We went to La Rusta - I could have some of the delicious soup.
"Please Bill, whilst we are in there, could you manage to be fairly quiet?"
"Of course" he boasted.
But his head was turned by another female who encouraged him to make a lot of noise.
Little Ellie was in there with her parents. She must have been about two.
Bill and Ellie looked at each other from our separate tables and grinned. then made faces.
Bill banged the table......Ellie did too.
They were leading each other on - silly laughs, blowing raspberries, sticking out tongues, more banging.
I felt so weak and mentally shattered that I couldn't cope.
I felt awkward for Ellie's parents and other customers. I wanted to cry; I wanted to hide.
I guess I have an instinct, too, to protect my man from other peoples' poor opinions of him.
I did get up and explain to the parents about Bill's condition.
But Ellie didn't care about Bill's condition.
When it was time for her to leave she came over to give Bill a kiss and have a cuddle. She wanted a cuddle from me too.
She was lovely and I admired her parents for being so relaxed.
I decided, foolishly, that I ought to have some good quality food in for Bill. And we walked all the way to Marks and Spencers - actually not very far. But I was slow and with balance poor I had my stick for support. Bill was marching ahead - he likes striding and counting paving stones.
I got into M and S only to feel to confused to think.
We left - back through the Memorial Gardens and all the way back to The High Street where the car was parked.
But we did need some food and so went to Asda, where we could park outside and where everything is familiar.
Home to rest.
But first, oh of my most embarassing events happened. Not happened for a long time. No more details - promise!
And suddenly I felt a bit better.
That pain round the ribs continues, but I felt just  a little more alert.
But yes, I did rest.....more doodling.
Bill slept a while.
He was noisy again when he came down - ignore him Paula!
I gather the evening bad behaviour is quite typical of dementia sufferers. And it is so hard to ignore.
Never mind. Another day got through - all the days feel so surreal just now. I don't quite recognise my life.

Sunday, April 20, 2014


Easter Blues.

What a lazy day!
Of course I had intended to be at the track, but I awoke in pain and very jittery and I imagined the crowds of people, the noise, the rushing about and felt scared.
I contacted Donna with my apologies.
It was only later I realised that it must have felt awful there today - so dark and gloomy and cold and wet.
Here is Donna's brief description.

Won't moan too much but was sat outside for 7 + hours today and still frozen to the bone nearly two hrs later. Wrapped up in four blanket layers and dressing gown. Lots of gaps in the timetable but as always at Crawley Athletics open meetings, the company was worth it. Just missed one friend Paula Monk (be well soon)... otherwise good wet cold fun!!

So I guess I was much better snug in my safe bed, where I was until gone midday.
My phone was my company, with opportunities for chatter with friends on facebook. It does me good to have to think about positive things when making comments. Other people are enjoying their lives and I am happy they share this with me.
Bill was also in his bed and all was quiet.

Eventually I knew that we should get up. Bill should have his bowl of cereal and I should drink something and have a rice cake.
So Bill came downstairs and got restless.
But for a while I was able to ignore it.
Maybe it was when I failed to ignore it he went back to his bed.

I sat downstairs and doodled. I love intricate doodling. It is soothing and therapeutic.
Later I gave Bill some paper and he drew a couple of small cartoon characters and then gave up.
I tried to tell him that in doodling there is no right or wrong way to do it. But he couldn't move on.

My friend, Mags loves a kit called zentangle which gives some structure to doodling. Maybe Bill might cope with that. But I doubt it - he is unable to keep himself occupied.
I think I prefer the freedom to allow my pencil to create what it will - I hardly think about it.

Maybe Bill felt he had failed - I don't know.
But the noise started in earnest. After 2 or 3 hours I was screaming at him, pleading with him to stop.
He hardly stopped when we ate a small cooked meal. He used his cutlery to to constantly hit his plate, his glass, the tray, the table.......yes, yes Bill I know they all make different sounds.
He washed up and sounded noisy, but happy - sort of singing a random song with lots of chicken sounds.
I decided I shouldn't reprimand him for sounding happy, and at least it was a bit different.

By twenty to eight he decided he should go to bed. He had nothing to do. He knew it was too early. He was down again an hour later, making himself a cup of coffee.
I tried to get Bill to think about what he might like to do tomorrow. He had no idea - I guess he no longer really knows the options. The weather will be better.
I will find the strength from somewhere to take him for a walk - somewhere quiet; so no National Trust places on the holiday Monday or anywhere like Tilgate Park. Maybe we'll go to the Jack and Jill windmills and walk a little from there - don't think I have the strength to reach the top of Ditchling Beacon. I would be so happy taking some photographs.

Saturday, April 19, 2014


Nothing Much.

Another day of nothing.
It is tiring doing nothing, and it must stop.
But it was another day and I still have some sanity - that's a bonus.
It was good to see Ruth today - that was my event of the day.
I did tidy the fridge.
And this afternoon I went through Jamie's photos of our Thailand holiday this time last year. They have never been properly sorted by me and particularly many that were taken with his I phone were upside down.
They all come up on my slide show screen saver and I think it slightly bothered Bill seeing pictures the wrong way up.
What a wonderful holiday it was.

April 21st last year - what a difference a year makes.
We suspected that things might be going wrong for Bill, but never dreamed of how he would be in April now.

I think, looking back that maybe Bill has been just a bit more peaceful today.
He got up very late.Mind you, I was no early riser either.
I wonder why he bangs. He was eating his cereal this morning (well after midday) when suddenly he hit the table hard with his spoon - like a gun shot. I jumped and then went jittery.
When Ruth asked him about the Friday group, he could tell her nothing. he had forgotten it all.
I have photos to remind him.
But will they remind him - when I described what he did he just asked "Are you sure I was there?"

Bill helps clear the lunch table.

Tomorrow I am going to grab some "me" time.
Suddenly I feel guilty and scared about that. I feel shaky just thinking about it.
But if he gets up after midday again, he won't be alone really for long.
I know, that if I can get my body and mind round it, I would benefit for a day on the wet and draughty timekeepers' steps with my friends. I shall have a job to concentrate on, so my mind should be fairly free from home anxieties. The lovely Donna has agreed to be the chief timekeeper for me.

Friday, April 18, 2014


Forget me Not.

I should be in bed.
Life is tiring.
But I decided to stay down and write on the computer, rather than phone.
Generally today has been good.
A bit of determination got me up and out with Bill to the Forget me Not Group. I call it the Friday Group for Bill.
At first I was just happy to sit quietly with a cup of tea and do some colouring in of an Easter picture.
Bill enjoyed a hot cross bun with his coffee.
Gradually I began to chat. The woman I chatted with has a sociable, bouncy husband - but there are problems at home. Of course there are - this disease becomes difficult in oh so many ways. It felt good to feel we might be helping each other just a little bit.
Bill joined in the exercise class and looked happy. I have some photos but have not sorted pictures out yet.
Then the men (mostly) enjoyed an Easter egg hunt.
It is common for those with dementia to crave lots of sweet food.
Bill was triumphant!

Thanks to Bev for the photo.

Lunch felt a bit daunting at first - I have eaten so little in the last days.
But I ate most of the jacket potato and tuna.
Bill's cottage pie looked tasty too.
And I did enjoy the jelly I had for pudding - we must make some jelly together tomorrow.
And we were treated to some delicious Easter cup cakes.

A brilliant photo from Bev. It is one I will always treasure.

Bev has been very supportive to me and offered good advice.
They run a group for carers only to meet and talk with somebody from Social Services. I will go on Tuesday evening.

After lunch group members can do a number of things. Some played bowls, a couple of men played on a small billiards table, others chatted.
And what did Bill do? Pace around! Round the room, in and out of the door, but not interfering too much with other people.
Bev brought her gorgeous dog in this afternoon and Bill liked to have some attention from the dog.

I could see that Bill was getting restless - time to go home. We went home via Lidl - just a bit of shopping.
I had felt safe and secure within the group. Lidl seemed to be scary and I began to get the jitters again. It was rather crowded.
We both went for a lie down when we got in - Bill slept.
But when he woke up I regretted that I had suggested he lie down on "our" bed. It was time to poke me, interfere with my face and make noise again.
He did eventually leave the room when I asked him to.
This evening he has continued in his "normal" manner.
I have tried to talk with him, however pointless. But it does seem that he hates me interfering with his face. And a lesson learned is to keep away - not let my face be within arms length.
I want us both to have some happy times - surely it can be expected that there are still positive times to be had.
Another day done.

Thursday, April 17, 2014


A time to grieve.

There are 2 crazy brains in this house - I don't seem to be getting mine in order at all.
I still feel so lifeless and fragile - don't want to think, don't want to do anything, don't want to eat. The last of those three is most worrying - not a common symptom for me.
I have had a rice cake and some soup and then a lovely treat that went down well.

It's a mango sorbet from Lidl - it comes in a plastic wine glass.
Yes, very good - but filled me up.

There have been times when I have felt both defeated and confused.
I like to be in control and that has been snatched from me.
But it's not just that which is dragging me down. I think I am touching on grief. Quite deep grief.
I am filled with some remorse now that I had no understanding of how losing a spouse can affect somebody. However much you are told that time is a great healer - you still have to work through that time.
It is hell.
I have lost my husband and not said goodbye yet because there is somebody here who looks like my man and can be lovely like my man. But for much of the day what I actually see and hear is a noisy,  naughty toddler. The last 4 hours have been pretty bad.
We both need time away from each other - but I feel bad thinking that.
Hell's teeth woman - a couple of days day care is not a life changing act and can be altered if it feels wrong!
Jenny has helped today as far as it is possible. The number I was given for Social Services is wrong - OK, I might have written it down wrong. She tried ringing SS at Chichester - who also failed to get through to Crawley. She has done the best she could by sending an EMail to describe what I am going through. At some point - down the line - somebody will come and assess Bill's needs and maybe mine.
Bet you he behaves perfectly!
He has behaved well for a while today - not too bad when Mags was with me. And he has hung up laundry and dealt with what was on the clothes horse.
I started to think I was getting it wrong.
Mags is one of my oldest school friends - though there are one or two who are a tiny bit older than Mags and me, and we live quite close together.
We have talked and talked. She has some problems coping with her man - not the same problems as I do - but our joint frustrations flowed over.
And bless her, she brought me gifts - a hand made card, a plant and one you might have caught a glimpse of in the first photograph.

Difficult taking a "selfie" of one's own hand.
I love the bracelet and will wear it lots and lots.
The main beads are haematite which are said to have very positive qualities.

There has been good news today.
Bill has been passed fit enough to have his groin hernia sorted - probably quite soon.
And Clare has now been invited to the appointment with the gender specialist in 4 weeks. I hope the next lot of treatment need not be deferred any more.
Clare has just produced latest episodes of her blog - and this time the theme is not gender or faith based.
You might like to look at the photography.

OK - the first part mentions a gender issue.

It fills me with joy to see her blossoming.

Oh well, in the pattern of how life must be - I got through another day.
There is another one tomorrow.
I intend to get Bill to the Friday group for a while, I wouldn't want him to miss an Easter egg hunt - not that he knows there is one. Nor does he know he has been to the Friday group before and certainly not what he did there.

Wednesday, April 16, 2014


Some things to be happy about.

Thank you to those who have sent me love. I suspect my earlier blog posting didn't make for good reading. But you know me - put the negativity into words and it flows from me into the screen.

One thing that resulted from it was a message from a neighbour who has worked in the dementia care world and she told me of the home, with a day centre, where she once worked.
It sounds brilliant. Just reading about it filled me with tears of relief - relief that help might be available.
This home is called Cherries and is built on the site of my village school which I attended when I was aged 5  to 10. I am so glad they remembered the cherries. I can remember doing handstands on the slope under the cherry trees. My brother can remember girls doing that too - particularly the one with no knickers!
I was correct that somebody to be cared for can't just turn up - they have to be referred.
My neighbour wonders why the doctor hasn't already done something about that. I was under the impression that somebody from social services has to do that.
But I don't think I realised that I would have to plead for the help - I thought I would be told of places.
If you have a physical illness doctors are the people who advise you of what hospital treatments are available and most of us are happy to take their advice.
It seems with dementia nobody feels able to tell me what might be best for both Bill and me.
Now, I may have turned into a bag of stress and nerves, but I am articulate and intelligent; and I will get there.
How awful it must be for an elderly spouse without those skills to make some sense of the quagmire of a system.

So, I feel I have moved forward a bit - without the help of any so called experts or advisers.
Maybe a glimmer of light showing at the end of the tunnel! I know that the light will merely flicker and there will be a day when all goes black again. I am rehearsing that day - the rate things are progressing it might sooner than I am ready for.

Jenny came and drove me to the clinic for an ultrasound scan.
My biggest worry was that the radiographer might say nothing, feeling that it is the doctor's job to convey information.
But the man I met today talked.
He said that as far as he could see there was nothing alarming to be seen.
My pancreas, spleen, liver etc are free from nasties. I assume the doctor who might check out the images will see the same.
Good news - the hovering fears can, for now, be shoved into the background.
My very first analysis of my health would seem to have been the right one. My chronic pancreatitis has flared into something worse. It has often flared before, but never as badly as this. The stress is almost certainly the cause.
It is hard to get the stress under control. I have made an effort to get my diet under control - just soup so far since last Saturday.

Jenny was interested in The Cherries - it is very close to her home and she said she would call in there to get me more information. I look forward to hearing what she might have learned about what procedures I must follow. Jenny gave me something I really needed - basically she told me what to do - no hanging about thinking about what might be right; just get on with it.
She can see how rapidly things are progressing and wonders how things could be another month down the line. I have to have things in place.
Perhaps in a months time Bill will attend  day care centre for some days in the week, I think he will be glad of time away from me and I will certainly be happy to be free of him for some hours.
It is basically just the constant noise that feels like I am being attacked that means we must spend time apart. and the way he seems to think he can pinch and poke me and tweak my face.
His memory problems shock me - but I would consider them to be normal in a dementia patient.
The lack of memory often feels like a shock, but I can cope.
This morning I felt it would be better if he did something useful and I asked him to clean the loo floor.
Which loo must I do, he asked - upstairs or downstairs? People who have been here will know that there is no downstairs loo in this house that we have been in for 45 years. Jenny wondered whose house he might have got an image of in his brain.

I did find some energy to go with Bill to Asda for bread and milk and nice fruit drinks for me.
Well, it didn't feel like I had enough energy when I got in the shop - so weak. I felt like this was my first trip out after some weeks in hospital, rather than a few days resting.

I have watched TV - and happily I managed to be absorbed in a programme; my brain actually managed to forget about my own life for a while.
I was thoroughly engrossed in the programme Monkey Planet - what adorable and intelligent creatures they are. I smiled and chuckled and felt happy.


Dementia Diary April 17th - not a good read.

Serendipity or what?
I haven't been to the forum for a while - almost too paralysed to think.
But just switched on and there near the top was a comment on a thread I began a while ago.
It was about not wanting to go home to my husband.
Somebody suggested that maybe I was at the time to decide about him being in a home.
I am scared of what I have become - a nervous wreck. My physical health has also collapsed. I will have an ultrasound scan this afternoon - obviously to rule out cancer which I have had twice before. Maybe it won't rule it out.
Bill continues to make almost constant noise when he is awake. At last I have family and friends who are seeing just what this means. It is destroying me. I have even hit him - me? I am so non violent.
People from various organisations have got involved - I even thought that social services would be in touch after confessing that I had hit Bill. I was told they would be.
Everybody is sympathetic. But it seems I have to sort everything out - even though I can't think straight. I am constantly shaking.
If my man had a physical disease then the medical staff would outline for me a programme of treatment. And that is what I want now - somebody to tell me what to do and help me to sort out arranging it.
But the counselling people say "It must be awful for you; what would you like to happen?"
Hell - I don't know!
Maybe the best thing would be a lot of day care. At least I would know that he is being cared for and other people could assess the constant noise and give him a decent meal. He doesn't need the care really - he is very capable. He looks after himself and does some jobs round the house when I order him to - best to give him jobs, because he is not banging the walls and furniture when he does a job.
So far, what I have been offered is that Bill will be seen by day.
I think I shall need one before that day arrives.
Just at this moment (well today) I have banned him from being with me in the bedroom. I have ordered him to sleep in the spare room so that I can get some sleep without worrying about the noise or the constant wanting to poke and tickle my face.
I need a room in the house where I can escape to.
This has all happened so very fast - within a year and it gets worse every day.
Well, that's released a bit of how it is. I am just surviving now from one moment to the next.
Grandma P - feeling lost and alone.
Oh that last bit shouldn't stand, for I now have some friends and family rallying round me and I love them for it. The trouble is almost all the people I love live far away.

Tuesday, April 15, 2014


Bless all those who have blessed me

I titled it last night, "What comes next?"
Well, I have to tell you that many good things came next. I can tell you that feeling loved and supported is a lovely feeling and can only help me
I slept really well - glad that Bill has accepted that we should sleep in separate rooms
Our oldest friends have been in the area for a wedding. Today they found time for us
I have to admit that, at first, having company was very tiring
Friends took Bill for a walk by a local lake. Then the 3 of them went to La Rusta. I had a quiet time in bed.
They returned with a gift from Alex in La Rusta
He thought I should have some nourishing soup. I didn't have very much, but I did enjoy it.
Our friends have been given a first class display of Bill's claps and banging and cackling.
It actually makes me feel better when people experience it - my words alone can never really show how awful it is.
Bill slept when they got back - so more peace and I felt a bit stronger and enjoyed adult conversation. Peter went out and fixed the gate handle, which had never been right.
Later Jenny came round. She warmed up the rest of the soup and we shared it.
Then she changed the bedding on our bed - a badly needed job.
And lovely Lisa, my neighbour came round with beautiful pink roses, which are now in the bedroom with me.
I can add that Frieda's son cut our grass for us.
So I feel more cheerful, being so blessed. I am glad that nobody from carers organisations phoned -it 's not time for any decisions. Basically I would like to wait until after neuro psychologist has made an assessment. I hope there could be medication to help with the unstoppable noise.
Tomorrow I will have an ultrasound scan. Very lucky not to wait long. I know what the doctor needs to check on - we all know that. Sometimes I feel scared, other times the worry subsides. I worry too about losing control of my life and my ability to care for Bill. But what will be will be.

Monday, April 14, 2014


What comes next?

I got an appointment with the doctor - always feels like winning the lottery, to be one of the lucky ones. Dr. O had always been the one I trusted to get things done
Well, until last summer, when he let Bill down
I, of course wanted the impossible - instant solutions
What I have got is an ultrasound on Wednesday, more painkillers, a blood test and an increase in antidepressants
I also got sympathy and understanding that Bill is sapping my sanity
I will see him again in two weeks.
By chance, today was the day when someone from Crawley carers support group phoned. It was good to talk and cry with her. It was hard to know just what I want. Whatever it is though, I am desperate for it. She will be in touch with social services. They are the people who sort out day care or longer term care. I think what I want at this stage is lots of day care and for Bill to come back to me and his familiar surroundings in the evening.
I think they might go for some full time care to give me a break and time to get a bit better.
I do feel very fragile- really quite unwell. But I have been here before. So, I guess it will go away again.
Others have been wonderful at giving support
People who know what it is like being with Bill 24 hours a day can see how awful it is. Even the moments when he is not banging and cackling are fraught as I tense up waiting for it to begin again.
Like me, people are beginning to see that there is probably more than dementia in Bill's brain. And those that don't understand how awful it is to be us- well, think yourselves lucky!
I have a feeling that we are at the edge of a new routine.

Sunday, April 13, 2014


Time to put things right.

Mrs. Strong has gone away - maybe because I called her stupid. Instead we have Mrs. Realistic.
Mrs. R found enough energy to sort out someone to look after the shop tomorrow.
I have felt so unwell
At last I have abandoned the cracked ribs notion. This has to be a flare up of chronic pancreatitis. And it's getting worse
I certainly should know this pain. Every moment of that first time is etched on my memory. I am re-living them all now - making me feel more wobbly than ever.
In addition I am also concerned about my swollen ankle/leg. My friend is sure it is cellulitis and I need antibiotics
I do hope Dr D can be available tomorrow
Something must be sorted - I have Bill to think of. And nobody who has not spent time with him understands what that means and I can't insist a doctor reads my blog.
I was in bed during the afternoon and have slept - thanks to a tramadol. I read NHS advice and knew they would suggest that. They also said that life style improvement should improve my health. Farewell cake!
A dull diet is more fun than how I feel now.

Saturday, April 12, 2014


The dementia world continues to evolve.

It has been a hard day.
I have just about stayed on top of it.
I didn't feel particularly well or lively at the shop.....hardly surprising.
Apart from the aches and pains I have carried with me all the signs of anxiety and panic.
Yet again, Nigel and Steve had me exploring things - widening knowledge.
Steve mentioned something about his great great grandfather being involved in The Boxer Rebellion in China
We realised we knew very little about it.
So, out comes the phone as I try to find out what had happened in 1900 and why. Great great Grandfather had been awarded  a Peking medal for his efforts connected with disarming a large gun....but surely not a Gatling gun, Steve?
I learned of The Seymour Expedition which involved taking back armaments from the Chinese rebels - including Krupps field guns.
Maybe I found the right occasion.
Sales were not very good today - indeed it has been a poor week. School holidays are like that.
At the end of the day I left Nigel preparing  for a visit to his third grandchild - not yet born - but we have been keeping up with progress during the day. Maybe Lottie has now arrived.
Now, all the above sounds like padding......padding round the more dramatic story line. You often get that in soap operas - something trivial or amusing to keep your mind off the brewing story.

I was deeply shocked when I got home.

All might have seemed normal. Bill was making a cup of coffee and had 2 chocolate digestive biscuits.
He wondered where I had been and told me that he had a made a cuppa to take back to bed until it was time to get up.
He was bothered to find himself in his day clothes because he assumed he must not have got into his pyjamas at bedtime.
He was extremely confused. He thought it was half past five in the morning.
When I told him it was early evening he said that he must have slept all day - though didn't actually believe me.
I explained that he had got up during the morning. "No" he exclaimed, "you've got that wrong".
And said he better get up and have a wash and shave.
"You've done that already Bill."
"No, I haven't."
But this morning I took his towel and used flannel to put in the washing machine. He had found fresh ones that morning when he washed and shaved.
And the laundry had been hung out in the garden by him.
I knew this already for he had told me so when I phoned him from the shop.
He had eaten breakfast and washed up.
He had emptied the rubbish bin in the kitchen.
He knew none of this and couldn't believe really that it was not early in the morning.
Oh my poor Bill.
Gradually he accepted that I was right. He also accepted that his brain was in a complete mess.
I reassured that I would help all I could. If his brain insists on being like that of a small child for a while, then lets make sure he was being the best small child that he could be.
I suggested that once the neuro psychologist had assessed the problems then there would be some medication to bring the brain back to life. Sorry, Bill - almost certainly not.
We also talked about the more than annoying habits. They make his brain behave badly and in a way that I can not help with. He would have to go into a home if the annoying habits continued and I suggested that "they" would have ways to stop him. I didn't interrupt his interpretation that it would be like a home for naughty boys.
He said he wants to stay in our home with me. I promised I would try to make sure this happened.
I explained that one way to help make this happen was that I felt I mustn't leave him alone to get confused by himself.
I will find somebody to give him time at home on Mondays - I was offered just this sort of help by an organisation at the beginning of last week,
Though we'll have nobody in place this Monday.
And I told him that I would find a good day centre for him - a couple of days a week so that I could get on with things which don't interest him.
I assured him it would be nothing like a home.
I already have some information about 2 lovely people who work in one such day centre and they live close by and I will chat with them.
Then it was back to the mundane - what shall we eat?
I realise it's not fair to ask him. His Mum would never have said "What do you want for dinner?" In those days small children ate what they had been given.
I was tired - exhausted even.
I suggested we go to the local fish and chip shop. If he wanted he could have a sausage and I would have  a lightly fried egg, cooked at home. I thought he should come - just to get him out of the house. Very interestingly, he hardly protested when I took the car keys to drive to the local shops - though he enjoyed telling me how I should be driving!
He has clapped and banged this evening and done the manic laugh, but somehow it has been easier to reprimand him and to keep it just a bit under control. I bet the restraint doesn't last very long!
I talked with Clare this evening. I feel so sad for Jamie and Clare, hearing from afar of this collapse of their father. Clare understands my need to put things into's something she does too in respect of the challenges she is facing.
She, too, has a blog. Always thought provoking and sometimes very moving.One day she promises that there will be more basic postings, like mine about where she has been and with photographs.

Time for bed - Bill is already there.
I have told him that he will accompany me to a car boot sale tomorrow. He needs to get out and get some exercise. We'll go to our first sale of the summer in a field. I'll get him to push the trolley.
We won't be out long.
That's good - I really must cross off a number of mundane tasks on the things to do list.

Friday, April 11, 2014


Tring to get some balance.

Exhausted with emotion.
Too much emotion and not enough straight thinking.
Today has been the Friday group.
The people who lead the group are well aware that Bill can be very challenging and have tried to think of things that he might do instead of banging himself and the furniture.
Mandy asked him to create an Easter card.
Bill was unsure - unsure that he could do it and unsure of a reason. Bill does need to be able to see the sense of an activity.......except, Bill dear - where is the sense in banging the walls?
Bill floundered.
I used to find that often young children would join in art work with more imagination if I sat and worked with them. Good grief - bad teaching there! They were never meant to copy me, but of course those who were floundering did.
So I also did an Easter picture......hurriedly putting in as many suitable images as possible so that Bill could choose some.
Another old man got the idea and caught my enthusiasm. He did a nice picture with a hill and a tree.

I can create pictures better than this - but not much better!
My artistic eye is revealed through the lens of a camera and not with any skill with the pencil.

But it got Bill started.

I gave him some ideas - the streams, the pond and the bridges and I like the way he incorporated them.
I don't know if it gave him pleasure.
Or was he just dutifully doing what he was told?
I am not sure that Bill really sees the purpose of pleasure.

The Alzheimers lady that I was sitting and chatting with liked the Woof dog.

He came to a halt at the exercise class time - sitting down exercises with lovely squeezy balls.
I joined in at first - just to give the necessary encouragement to get Bill on a chair in the circle. I couldn't do it all - too much pain round my ribs. So I wandered away to chat. I was pleased that Bill didn't wander away.
Whilst I was in the circle I noticed that Bill was more able in some ways than some of the other people. The speed with which he could twiddle his thumbs was impressive!
Before lunch was served, Bill began to get restless. Beverley brought him a challenging game.

Next week, I will learn from today.
I knew that Bill was tired after lunch. He didn't want to join in the bowls game. He just wandered and a made a nuisance of himself. Too much noise.
But I was glad of the chance to talk with people.
I think it would have been best for me to take him home and then return alone.
And the chat I had actually disturbed me.
I was talking with one woman whose husband doesn't come to the group. She has been coping with her Alzheimer's husband for 5 or more years.
But she said, when looking at Bill "I thought I had it bad, but it is nothing like as bad as living with Bill must be."
Others commented much the same, wondering  how I put up with it and stay sane.
The answer to that is that I don't. And I guess I began to feel really sorry for myself.
Many of the Alzheimer's men were playing bowls and some were lively and laughing and chatting in a way that Bill just cannot be.
The other spouses expressed anxiety about Bill's noise - at least it felt like anxiety to me.
They had never met any problems like Bill's amongst the Alzheimer's world. Somebody asked if he shouldn't be in a mental hospital......maybe he should!
And my anxiety levels increased.
Once we were home - me in need of pain killers - I snapped. I snapped really badly.
My ability to turn nasty worries me.
Fortunately I do still have the ability to try and work through to a solution stage. But after more months of this it worries me that I may crack completely.
And for a few hours this evening I felt that Bill tried to avoid banging.....he failed of course, but he tried.
By the time he went to bed, I was feeling a bit more content.
Tomorrow I will be in Dorking - so both of us can enjoy some much needed time without the other.
His phone is now set up. I can ring him on his mobile and he can also phone me.
He now has to remember to have it in whatever room he happens to be in.
And not to fiddle with buttons!
It is bed time now for me. The TENS machine has the electrode pads in place on my body and that and more pain killers should hopefully bring me calm sleep.
I worry about my health too. High anxiety levels lead me to ponder on all manner of things that could be going wrong.

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