Saturday, May 31, 2014


The chocolate and pot noodle diet

Sorry, I haven't managed daily postings. I am grateful to know that I have been missed.
It is now Saturday. Life hasn't changed for me. I feel so tired and weak, in both body and mind. My mind feels so lost and troubled. Yesterday I felt just plain scared? Why? Because I was going out to see Dr D, and then to see Bill. That was scary, I felt distraught being reminded of what has been lost - especially when he wanted to come home and look after me.
I have now paid for Bill to be at Deerswood for another 2 weeks.
By then I will know more about me. I have to go to the hospital to discover results of the biopsies. So, that is scary too.
Today I slept for much of the morning.
This afternoon my brother and his wife visited. Poor Sue - never did she think she would be preparing a pot noodle, but it was good and tasty - I love the sticky ribs flavour.
They also saw Bill.He needs company and stimulation. They told me he was content, pleasant and singing.
He had other visitors too. Ruth and Otto called in, and they walked in the garden.
So a reasonable day. I planned to post a couple of photos, but I got into a muddle. I'll put them on a separate page - far too fraught to keep trying.
Shan't eat much tonight now. Although it is doctor's order. Guess what? He suggested I have lots of chocolate.e

Wednesday, May 28, 2014


Sometimes things go right

A day when things went right.
Jenny got things started. She phoned the GPs and started again with them.
Yes, somebody ,would visit me at home.
I regret, I spent the morning in fear
of being put down or being ignored.
But luck was on my side. Dr. D was. on home visits. He would look after me.
And he did "What's happened to you, Paula?" he asked with genuine concern. I told him of my pains and other physical problems. I told him of my fears concerning the biopsies. I explained about the months of stress which preceded all
 this. There were tears and shaking. Dr D was astute - he already knows about Bill. Dr could see that I have been on the way to a nervous break down. It would seem that after months of struggle and attempting to be strong, anxiety flooded into my whole being.
I am now on diazepam for three days and will see doctor again on Friday.
He has also set up visits from hospital avoidance service.
Now you can understand why this doctor is so special to me.
I have had just 1 diazepam. Wow! I felt euphoric. My eyes closed.I felt good and more like I can get through.


Thank goodness for good people.

I guess that Grandma P is becoming a bit repetitive. I can assure you that I am increasingly fed up with it too.
By yesterday morning, I felt desperate. Whatever the cause, I felt that I deserved some help - maybe hospital even. So I phoned the GPs. Got through first time - good omen? No. Dr O is off this week. I was told that a doctor would talk to me after morning surgery. Abrupt Dr.Donnelly did just that. She picked up on the gastritis and said she would fax a prescription to the pharmacy opposite our house. When I said that I was not coping, she just said I should wait for the medication to start working. I spoke to another doctor with the same result.Now for sure they were thinking that they were dealing with a weepy neurotic old woman. This made me feel angry.
I began to try and enjoy the best medicine - company.
The cleaning ladies came and efficiently worked round me, even changed my bedding. Neighbour Lisa came and warmed up some soup. She has been a star. She has taken the dirty bedding to wash. Later she picked up the pills from the pharmacy and later bought me Dioralite which might help me rehydrate a bit. The last idea was from Jo, who has phoned 3 times with support. Then jenny and the boys arrived. The boys were happy with their iPads and we shared Ideas for games. F and O were a real
tonic and I felt cheerful.
Jenny went to the Forget Me Not Tuesday meeting. I needed financial help and advice from Wendy, from social services. Wendy will visit on Thursday so we can begin to sort Bill's funding for future care.
And then she told Jenny of a local service that nobody seems to have heard of. There is an organisation called the hospital avoidance service. I can have a nurse to visit me over 3 days to assess my needs and to keep me out of hospital.
Jenny still thinks that this must be done through the doctor and is ready to do battle. But a friend has looked up this service, which gives a number to contact them.
So a day which began with despair ended with some hope.
I am ready to agree with the doctors that I am tearful and neurotic.
I have very real physical problems and some could be serious. But it wasn't until Bill went away that I began to totally not cope.Up until that point, I just had to manage, after a fashion. When he went to Deerswood, the floodgates opened.
The stress of the last few months has been unbelievable. Something had to give. And now I am finding it hard to make sense of anything.

Sunday, May 25, 2014



Was this the first day in my life that I spent entirely alone?
Don't remember another.
Never mind, being ill takes a lot of time and energy.
I was in bed for Much of the day sleeping lots.
Pain, nausea, exhaustion to the point of shaking muscles and feeling out of breath - and no, Jenny, I haven't eaten enough.
This gastritis is not nice. I do hope help can come my way this week.
This evening I was downstairs, watching TV.
Sleep time again.

Saturday, May 24, 2014


From one house to another.

Still so tired.
When compared with normal life, my day has not been arduous.
But this is not normal life The process of getting up, packed and all that sort of thing made me shaky.
I went for walk round Jenny's garden. Ruth had brainwave and brought me the tablet. I feel more alive with a camera in my hand. O

I had a
little lunch with Ruth and the boys.
Then time to go to Deerswood.
Money had to be paid and we spent a short time with Bill.
He is happy, but remembers almost nothing about his time there.
He made a lot of noise and I was told that he Normally does.
I aim to try and sort out a daily day care centre for when he returns.
Then the challenge of the day - ASDA.
I needed simple food, so that I can look after myself this week.
Oh it was hard work.
I thought I might keel over onto the floor. The place began to spin.
But I was really proud to have managed,
Then home - straight up to lie down.
I have been reading up about gastritis - yes, can be caused by stress. I can tick off quite a few of the symptoms.
It leaves me wondering - has the endoscopy found what has been wrong all along?
It makes some sense. OK, we know the pancreas isn't working properly + but is it pancreatitis?
Chronic gastritis. with some major acute flare ups makes just as much sense.
It might actually prove to be easier to deal with. But best not to forget last Monday's investigations.
You will have spotted that I must still create a good routine for adding photos to blog.

Friday, May 23, 2014


Endoscopy Day

To sum up - tired
Sedation worked well for me. Felt nothing until I came round.
I am still not sure why I had this procedure. Never had the pancreas or liver been mentioned.
I know that Dr O wanted to help me. But his hands are tied, because I am now under a hospital consultant, who should arrange a CT scan, once the first results from Monday are in.
Anyway - today.
Well, I don't have stomach cancer.
I do have gastritis, probably mild. May need medication.
I don't have helicobactor pylori, which can lead to ulcers
Got back to Jenny's and happily spent time with the family.
Suddenly I could take no more, I needed sleep.
Upstairs with warm sun streaming through windows. Wonderful sleep.
I haven't been down again. Am I learning about living alone?
I start tomorrow.
I think it will be hard as I feel so week. But I must take on these new challenges.
And, it's only a week until I have responsibility for Bill again.
It feels a weird world.


Bill and Nancy

Taken by Amie our nephew, Antony's fiancée.

Thursday, May 22, 2014


Contact with outside world.

I am really happy during this wonderful fantasy week, in my Beautiful nest.
Today a little reality has crept in - contact with the outside world.
I have now sorted that Bill will have another week at Deerswood.
This will give me time to adjust to the reality of life at home.
Bill has had visitors today.
Amie has been in - she used to work at Deerswood.
Bill enjoyed seeing her and the lovely baby Nancy.
There are pictures, but I need to study the method of getting them from tablet to blog.
Later I talked to him - thanks to Julie Carer (as distinct from Julie Sister.
He sounded relaxed and happy. He accepted that he would not be home this weekend. Just didn't question it.
I did notice that when he handed phone back to Julie, there were the old familiar noises. She said that he hadn't done it much.
It's me, I unsettle him.
Getting late, must sleep.
Endoscopy tomorrow

Wednesday, May 21, 2014


relaxation is good for me

Another day of relaxation..... laziness?
I do know that. the calmness is easing my pain.
And I am still so tired.
The trip back home exhausted me. We picked up a few bits that I needed and the paperwork connected to the endoscopy. It felt weird in my home. As I sat for a while, I could almost hear Bill thumping kitchen cupboards.
I will be home next week, but maybe Bill won't be. I have talked to Deerswood folk and they feel that Bill doesn't know when he is due to leave. He thinks that he is there for a rest. If it is possible, I would like him there for another week. After that we must play it by ear, according to what is decided for me.
I slept a while this afternoon.
This evening I have eaten some chicken and potatoes.
I will go and have a cuppa with Ruth in a few minutes. Jenny is at a village conservation meeting.
Everybody is tired. Jenny was up at 5, making chocolate brownies for the school cake sale. Ruth has been on Box Hill for a work team bonding exercise - up and down all day long.
Lovely red sky just now - not sure how delightful weather will be tomorrow.

Tuesday, May 20, 2014


tired, but with some contentment.

Feeling tired, but reasonably well.
I have been in bed for much of the day. I will have another day and night here. I will go home on Thursday morning. Jenny will go to Cirencester to see the grandchildren there in a play. She will be back on Friday to take me for the endoscopy.
The news I have of Bill is good. My niece in law has worked at Deerswood and her mother still does. She reports that people
love him, even though he is noisy. He has added a new noise, squawking back at the parrot who lives on the balcony of the first floor. Apparently he thinks that carer, Pauline is me!
Another report comes from his sister Pam. She went in with a birthday card and some cake. They walked in the garden and then had a cup of tea. She said that he asked about me. So Pauline is only a temporary wife! Pam says he was noisy. But when asked if he liked it at Deerswood, he said that it was quite nice, that is high praise from Bill!
So, just now we are both content.
I know that my problems are far from over - they will have to be worked on later. But good to know that contentment is possible.
Sorry I missed your Skype call Roger. I was downstairs with Ruth and eating more of Jenny's leek and potato soup. She is on a mission to fatten me up!

Monday, May 19, 2014


Been to the theatre. Saw nothing.

Short and not so very sweet.
The surgery has been completed and I am feeling comfortable with family in Ifield.
Though one part of my inside is very sore.
I was at the hospital for 4 hours before going to theatre.
Too much thinking time.
I think I have to accept that I will be in for a long and maybe difficult journey. Surgeon seems to think so, MacMillan nurse too.
They all know that Bill is also a problem.
I miss him so badly. But I am glad he is not with me. The Bill I want has almost vanished.
What will I do?
Too tired now.
I hope my dearest one has a happy birthday tomorr

Sunday, May 18, 2014


He's off on his holiday!

Terrible morning - felt totally rotten.
Bill had to do more of the packing than I intended - but he did it, so a good thing really.
The afternoon felt surreal - surrounded by people looking much older than Bill and much less able than Bill. Some of the dementia old ladies seemed to enjoy his liveliness and smiles.
The carers were lovely.
I am sure he is in the right place - hope I am still thinking that next Sunday.
I was exhausted by the time I left.
The evening has been fine - no grief.
Meditation and relaxation. Quick tidy up. Photos.
Photos will tell you about Deerswood.

A walk round the garden.

Supper time. Chicken soup, sandwiches and cake. And more tea - my third mug of tea.

Bill tries the bed.

Our little TV. Guess who forgot to put the remote in the box! I hope Jenny can drop it in tomorrow after she has taken me to the hospital.

He had delivery of a few birthday cards - I know, naughty boy, he opened them early.

There is a long corridor through the middle of each wing. Bill is in Elm Wing.
The corridors are full of interest.

A couple of rabbits have hutches at the far end of the corridor.
A music display.


I'm sure Bill has settled down to sleep by now. Maybe I should be sleeping too. Never mind - I shall be doing quite a bit of that over the next couple of days and enjoying Jenny's leek and potato soup.
Bill, is, I think happy - but confused. This time he thinks we are in Wiltshire.
I feel more relaxed this evening. I have no nerves about the operation - just nerves about what they might find.
But onwards I go - each day to be filled with positive feelings.

Saturday, May 17, 2014


A time to grieve

It has felt a very uncomfortable day.
I have been so uneasy.
Floods of tears this morning as I looked ahead.
Today has been the beginning of the end - the last day for Bill and I to be together. Yes, over dramatic I know.
Tomorrow Bill will go to the nursing home, and I know my man is slipping away.
He is not the man I have lived with for nearly 50 years. The grief today has been intense.
This evening, tears became tears of frustration as he banged and was exceedingly noisy. I could relish the peace of the week ahead and begin to dread his return next Sunday.
In between he has been Bill.
Sometimes dominated by dementia and sometimes quite clear headed.
His major achievement was to cut the grass, once I had reminded him where he kept the mower.
There is still so much that his damaged brain can do.
I have not felt good and failed to do lots that I should have. Packing things for his stay will have to be done tomorrow morning. I learned today that he can take a TV with him.
I have bought him some sweets when I went shopping, but forgot the chocolate digestives.
One last thing, I have set up a new Skype account with a new name for the tablet. I invite old friends to contact me at
Sorry I will decline people who have never Skyped me before and definitely anybody I don't know.
Have already been chatting with a friend tonight. Haven,t got the camera sorted yet.

Friday, May 16, 2014


The need for tablets

Today has been a struggle - haven't felt at well.
That adds to my anxiety.
I took Bill to Forget Me Not. I wanted him to join the exercise class and also to have his cooked meal to save me bothering
I felt weepy there, but others helped me
Earlier I had talked with Ruth about tablets - not medication
She thought that as I wouldn't be using it for much more than basic communication, the new Tesco Hudl would be good. She said she had it in mind as being suitable for her boys. So I bought 3 of them
Good people in Tesco - they saw that I was struggling and got me a chair and some water.
Since we got home Bill has been really noisy
Maybe he was feeling too bewildered. We almost never go to Tesco - maybe the last time was in Thailand. When we got in the car, he asked where we were going. I told him we were going home. But what about our things? He feared we had forgotten our cases.
Poor Bill. But poor me too. I really couldn't cope with the constant loud noise
I have spent the rest of the day in my room, trying to avoid the worst of it
Relieved when he went to bed
But he still bangs whilst in bed
I hate the thought of his confusion and how he will miss me next week, but I do agree with all my supporters that I desperately need a break and that it will be hard to deal with everything that is coming my way with him around. Recovery will be almost impossible with Bill upsetting me so much
This evening I have tried to set up the Hudl and failed. I don't know what password Bill used when he installed the router. Any ideas how I can find it on line?
Sleep now - too much to do tomorrow. Shopping and packing Bill's things
I must get a laundry marker for all his clothes
I must get some money out for him too and see if I can pay by card for his week away
I do look forward to a week when I can think about me. And I know only people who haven't experienced Bill will think that I am being selfish.

Thursday, May 15, 2014


Lots of work from my bed.

Really too tired. And yet I have been in bed for much of the day.
Feel too weak, unwell and pained
Bill has been sweet, despite his noise. At lunch time he asked if I wanted anything and then brought me the ham and cucumber sandwich, without crusts that I requested.
From morning my bed was my office again. Many phone calls
Bill remembers nothing of yesterday. Just as well, because I have agreed with Wendy that Deerswood is the place for him next week. She is making sure they have all information they need. The residential side has better facilities and more chances of one to one. My nephew's mother in law works there and she has been reassuring too
Wendy will pop in and see him each evening. And I will ask Julie Carer to take him out on Monday. Maybe more
Phone call later asking me to have an endoscopy next Friday. Tomorrow I must check that the hospital team go along with that. They want me to have CT scan.
Another call inviting Bill for his hernia op on Wednesday. Sorry Bill, you will have to wait.
Lots of chatting - Jenny came round, Jo phoned
Had to get up eventually. I had to go to hospital for the pre op assessment. All went well.
I spent the evening downstairs and managed to completely ignore Bill's noise. I think he was a bit baffled. Must keep it up.
Life is tough.

Wednesday, May 14, 2014


Things unravel.

I think I could write a book about today!
But I am exhausted.......been sleeping this evening, which I needed.
So, no book - just a few notes.
Bill went off to the day centre at Deerswood.
I had much planned. I went through all the huge pile of official papers that has accumulated, with the thought that I would deal with each one of them later.
Bill had always sorted papers into various box files and I have done the same.
I sat up on the bed, surrounded by all this parapheranlia.
There were phone calls too.
The specialist nurse at Crawley hospital phoned about my surgery next week.
I had mentioned my chronic pancreatitis to each of the doctors I have seen in the gynae unit. But since then I have learned that maybe it is a bit more complicated than that. I explained that the GP wanted me to have an MRI scan.
Later the nurse phoned back, having talked to the doctor I saw on Monday. They think it would be better that Dr Karen take on my complete case and that she would arrange a scan.
And then I was phoned by somebody else at the hospital. Dr O had already been busy. He arranged an endoscopy for me at the end of next week.
I might have followed this up - but the day went very wrong for me.
The phone rang again. It was Deerswood. They would bring Bill home early because he had been upsetting everybody with his noise.
To say I was distraught is somewhat of an understatement.
I felt like my life had unravelled before my eyes.
A specialist day centre had given up on my husband after 4 hours. So they brought him home to me so that I can continue with 24 hour care. If they can't cope - then how on earth can I cope?
It was awful, awful.
I just hated those 2 women who brought him home. Can they only cope with people with a very simple form of Alzheimers? Do they not take into account the different forms of dementia?
I still don't know what is happening next week, but I have changed my mind about what might be best for Bill.
Wendy social worker has been extremely busy today and I haven't spoken with her.
She will not be pleased with Deerswood I am sure.
I want to ask her to help fix up a different plan now. There is an organisation that can supply people to come and stay in the home of a dementia person for a few days.
This is what I want for Bill. He liked that idea.....not that any idea stays secure in his brain anyway.
But we also talked about whether he would prefer a man or woman and he did say that a woman would be best - would remind him a little of wife or mother maybe.
As luck would have it I was expecting Bronwen round - she is a trained adviser from the memory assessment service.
She is lovely and was just what I needed. She first calmed me and then we talked of coping strategies when he makes a lot of noise.
She can see beyond Bill's noise and likes him. She can see the sweet and gentle and intelligent man that he once, that he still is.
People who spend time with him normally can see that. The day centre at Deerswood clearly didn't have that time.
But my goodness it doesn't make coping with the noise any easier and I have been practising for many months.
Bill's brain has also had a tiring tense day. Maybe it is always tired and tense.....despite his protestations that there is nothing wrong. I must concentrate on making life as easy as possible for him.
The noise has been awful this evening and I have asked him to be noisy more quietly!
It is hard because my brain and my body feel tired and tense too.
I really need time without Bill to ease things.
But I love him and maybe I don't want to put him through the stress of today again. Deerswood day care wouldn't have him back anyway.
And I would feel very uncomfortable sending him to the residential section on Sunday. And I have a feeling that the offer might be withdrawn anyway.
So tomorrow Bill's care must be organised. I still can't go along with his thoughts that he would be fine on his own. Maybe we don't actually need anybody here full time - after all for a good part of the 24 hours hours Bill is sleeping and not needing any help.
In fact he needs very little practical help.
But I don't like the idea of him being without support with such a confused brain. His concepts of time and place can be very muddled.
Once again this evening he asked where Jamie and Mam are. He then worked out with me that he was in England and they are in Thailand and, once again, he seemed quite sure that we were in Thailand this morning.
Actually I am wondering that this might be a cover up. He was never good at admitting his mistakes and always tried to wriggle out of it. Maybe saying we were in Thailand this morning is a way of wriggling out of the first mistake.
Next time I will have a different strategy. I will just tell him that they had to go home - no trying to help him get things straight. It's a pathway to tension.
Maybe Deerswood have created a turning point for me. I hope so. Though it is so hard not to protest about constant noise. And very hard not to object to him making exceedingly loud chicken noises in Asda because he likes the echoey sound.
I want everybody to love him. I hate it that they find him difficult and hard to be with.
I hope I have more positive news tomorrow evening.
Being positive and strong is just something I have to do - despite feeling rotten. That little trip to Asda exhausted me.
I have a lot of fear for the future - but it is not the future right now.
One day at a time.

Tuesday, May 13, 2014


Every cloud and all that!

To begin at the beginning - the beginning of the day.
It was a good beginning.
I made contact with Beverly and Wendy - my dear experts. and they came up trumps.
It is arranged that Bill will go to Deerswood on Sunday and stay for a week.
It is costly but so very necessary.
Gradually the money in Bill's account will reduce and we then get a grant towards the cost of care - enough to pay for 5 days of day care. If I need more then it will cost more - but necessities must be paid for.
Tomorrow he will be there for day care. I am sure he will like it.
But he will never remember that he is going and certainly can't understand why he is going.

Then came a visit to my GP - Dr. O.
Now, really that wasn't so good. It was good that he knows me and cares for me.
It is not good that it takes time for different specialities in medicine to work together and sometimes they never create a united front
Dr O has not been involved in the hospital investigations and they know little of what he has been doing.
He has been trying to sort out what is happening in my abdomen area - the constant pain and everything.
Blood tests suggest that there may well be a blockage of some sort between liver and pancreas......could be a lymph node, could be anything. Almost certainly something unpleasant.
And his next step is to order an urgent MRI scan. Oh how I wish it could have been included with the one I had last Wednesday.
He says he will no stone unturned in his quest to search for the truth.

The cleaning ladies arrived soon after I got back home. They are a lovely pair, hard working and full of fun and there is laughter in the house.
I didn't have the energy to go out and leave them to it. I shifted from bed to sofa as they moved around the house.
Bill walked around being a jolly chicken!
The weather was jolly too if you like that sort of thing.....the ground turned white with hailstones.

Later Bill had an appointment to have his hair cut.
This sparked up much questioning "Where am I going? What time? Why?"  Over and over again. Sometimes he thought he was going to the dentist!
Bill was noisy waiting for Tony, the hair dresser, to be ready - but made no noise at all whilst his hair was cut.
Talk was of happenings round the corner - lots of police cars and also police running hither and thither.
When we came out an ambulance had arrived. It blocked our car in, so we had to wait a while.
It was the newsagent/post office where the problem was.
This evening I read that an employee had been stabbed during a robbery. Injuries are fortunately not life threatening.

Once we could get away we went into town so that I could activate Bill's bank card and get a little money out for him. I sorted out topping up his little mobile phone.
I thought we might go to La Rusta - but he got too noisy and I was too tired. I just began to weep. Alex has so much sympathy...."You are just exhausted" he said, "go home and rest".
He was right.

I felt strong enough for a good laugh at the Tuesday Group with the Forgetmenots. Loved the story of somebody finding a dog and taking it home and then to the police station. A couple of weeks later she saw a woman with the same dog and, maybe hoping for some thanks, approached the woman and asked if she had recently lost the dog. The woman replied "No, but somebody did steal her from my front garden!" Whoops!
I laughed too when Julie Carer was talking to me about her time with Bill. Apparently at one point he looked at his watch and announced "She's late". Then went on to explain that he did remember me telling him that a carer was coming and she obviously wasn't bothering. Nice though - Julie Carer is his friend.

Time for bed and painkillers and rest.

Monday, May 12, 2014


Today's hospital visit.

Thank you to all people who have sent me such kind good wishes. I wish I could talk to each and every one of you individually. I am so fortunate that there are many of you.

Now to update you with my news.
Basically I have learned little that is new to me. What I know is what I assumed would be.

I shall be in hospital next Monday for further investigation and for biopsies to be taken for testing. There are 2 areas of concern. One is where I thought it would be and from where blood is coming. The other is a small enlarged lymph gland in the groin, that lymph node will be removed.

It is almost a rerun of my life 23 years ago. First the pancreas pain and then the lymphoma diagnosis. Though let us just say that until everything has been tested nothing is certain. But I know and the lymph gland news does worry me - but having beaten it before, I know I must keep up the good fight.

But fighting is hard right now of course. I feel I should be fighting for Bill.

I have a few days to pull together the support and knowledge of the experienced people in my world to make things as easy as possible.
What I want is that Bill can be taken into care for a week, so that I can recuperate from surgery without needing to fight for him. I shall talk to my wonderful social worker in the morning. It would be even more wonderful if she could find a place at Deerswood, where Bill is going to day care on Wednesday.
Jenny (family member) who has already been so very good to me has offered her support and suggests I stay with her for a couple of nights after surgery.
Nothing is yet decided - but I can feel the worry and weight of these practical issues being lifted from me.

The results of the biopsies will not be known for a couple of weeks - so I shall have to make the most of a normal week after the surgery week.

This evening I feel numb and tired. I can expect nothing from Bill of course. I can tell him a little but I expect almost no understanding and not a hint of how he could support me.
He thinks there is nothing wrong with him and is baffled that I am talking about his need to be found somewhere to go.

He will also have to go into a home if I am having treatment - certainly the first week of each course of chemo. Although secretly I am beginning to think it might be better if it became a permanent thing. It's not just his inability to support me in any way - apart from making a cup of tea and washing up, it that I know I couldn't endure chemo and constant noise.

It goes without saying that not one of you are happy about my situation - it is totally unlikeable! But I value all your love and support anyway. And I am sure that those close at hand may well spare some time to give me company which always makes me feel better.
Right onwards Paula - another chapter with more to learn.

Sunday, May 11, 2014


Mustn't grumble

Acc-en-tu-ate the I will.
Lazy Sunday has been a treat.
I was awake reasonably early and enjoyed the morning in bed with sudoku, crosswords, facebook etc.
Bill was in bed until 1 o'clock.
So, lots of peaceful hours.
We decided to go out - needed some things from Lidl.
But laziness persisted and it was much later we that we set off. The Mr Bean cartoon on CITV kept Bill quiet for a while.
Shopping was done  successfully, Bill didn't draw too much attention to himself. And we have the chocolate digestive biscuits that are important to him - and more basic stuff like washing up liquid.
The young guy on the check out was amused by Bill's chicken impression and the drumming. He laughed with Bill.
You wouldn't laugh I said, with a smile, if you could hear it 24 hours a day.
"No - think I would have run away a long time ago!".
Don't tempt me young man!
Then a decision had to be la Rusta or not to La Rusta? Remembering that we had not yet eaten anything so far.
But I just hate to be anywhere now with Bill if he is being very noisy.
I took the risk.
And Bill was moderately quiet and I felt relaxed.
The soup had all gone.
Maybe that was a good thing for who could not be relaxed with my second choice food?

Super food and prepared and served with love.

When we left, Bill began......began his repertoire of noise until I felt crushed under the weight of it.
I wonder what starts him off?
Well, at least he didn't do it much in La Rusta,
It's quite scary to hear him alone in his room making so much noise. What is going through his head?
This comes from an American woman's blog.

Like Alzheimer’s disease, FTD can cause memory loss, but it can also cause dramatic personality changes, including apathy; many lose their ability to communicate, and because the disease gnaws away at the gray matter that controls behavior, many with FTD act out; they may yell, become socially inappropriate, impulsive, aggressive and completely incapable of understanding that their actions have consequences. Adding to an already challenging and misunderstood situation, some individuals, like my mother earlier on, don’t even realize that something is terribly wrong.

It seems apt to quote this now as earlier on I was talking to a friend on the phone and she was concerned that he may have some personality disorder other than a dementia. No - FTD  (frontal temporal lobe dementia) is a personality disorder.
It is slightly reassuring to me to remember that Bill is not more of a lunatic than the FTD makes him be.

Bill went to bed early. He needs a lot of sleep - and that is my peace time.

And before I finish accentuating the positive I share with you a picture of Bill being happy.

That's Bill with Louise who gave him tender care and support at the Friday group.
I am sure Louise can cope with Bill being inappropriate within reason. Saying the first thing that comes into your head is an FTD symptom.
Last Friday he went out with the carers to carry in our dinners. He walked behind one of them and called out "That's a mighty fine arse!"
Those of you who know Bill will understand that those words were not typical of the man he was.....though the man he was might have thought saucy thoughts of course.
I don't know if was being saucy or just stating a fact as he saw it.
He points out people who are fat too.

And now I have to accentuate the positive on my own behalf. I wonder just what I shall be telling you tomorrow evening.
I am ready to accept hospital investigations and treatment; maybe chemotherapy.
I have to be ready - and then if need be, to get all my carers and supporters to be ready to deal with Bill.
He doesn't understand why I have mentioned that full time in a care home may be his only option.
He thinks he has all his mental faculties in place.
Right, mustn't dwell on it.
Bed time.

Saturday, May 10, 2014


Not Easy being me right now

The day began badly - suddenly Monday's appointment seems very near. Monday could be the time to turn the pages to a chapter of life that I do not relish. I just wanted to stay safe in my nest.
But I had a commitment - it would feel so weak to sit at home. So, off I went to Dorking. Almost immediately I was dealing with a card payment and wrapping a lovely glass bowl. But, for the morning I sat quietly at the desk, nursing my pain and emotions
I looked through the recent sales and realised that I have been doing well.
One sale is worthy of note - a novelty teapot, bought by the blue team on the TV show Bargain Hunt.
Later I went out to get a little something for lunch. I was exhausted.
Such hard work that little walk.
Quick - get some painkillers  down. A tramadol and 2 paracetamol; an hour or so later I began to feel closer to my real self, somewhat cajoled by Nigel. He likes to explore all sorts of knowledge, and I oblige by checking things on my phone. I don't remember how we got to it, but I was happily claiming Viking King Rollo as a long long ago ancestor. How did we get to Brunel. I had no idea he was French.
Time to go home - but not before wrapping a tea set of mine.
Beautiful rainbow on the way home.
An evening of Eurovision songs.

Friday, May 09, 2014


Sleep time confusion

Earlier Bill woke from a sleep and didn't know what day it was, nor even the time of day.
I have just done much the same - very surprised not to be in my bedroom. I woke and remembered that I ought to have set the alarm clock........but where was the clock? Scary, for a moment! Oh Paula - you are still on the sofa!
Unlike for Bill, things slotted into place
He found it impossible to recall the day he had enjoyed
I have photos in the camera to show him making a meccano model with lovely Louise. Bill did feel good sharing time with someone young and lovely. I will sort those photos of the Forgetmenot group tomorrow. For now I must say Goodnight from the sofa and get to bed. Will remember to set the alarm so as not to be late to Dorking tomorrow.

Thursday, May 08, 2014


Today at the D-Cafe

I must have been tired. Life is very tiring. I do have to pull myself back from worrying that my tiredness could be caused by my internal health issues.
I wish pain would go - it makes it even harder to deal with my man; and he is so exhausting, so much that I find it intolerable.
I slept early and well- until that hour that regularly wakes me; hello 3 o'clock. But what a joy - pictures of Jamie and John, enjoying an early morning walk on a beach.
It must have calmed me. The next thing I knew was the phone ringing at 10 o'clock.
The following hours passed slowly - I don't know what I actually did; surviving is such hard work.
Later in the afternoon I struggled again to get Bill up and out. "Why do I have to go?" "What if I don't want to go?"
Much later I was wondering about those questions. I might gain more by going places alone.
But that feels selfish and unloving. I so want Bill to have stimulation in his life. But ultimately I know that I will have to be selfish to survive.
Bill did enjoy the D-Cafe, though for a while he certainly spoiled other people's pleasure.
Most people are there to chat, be happy and enjoy some musical entertainment
Bill is there to eat, bang and wander about.
I will vouch for the food - learned just how good prawn and mango wraps from Marks and Spencers are.
After 2 hours we returned home and both dozed. Oh how I relish Bill's dozing!
Yearning for him to go to bed now.
Yearning for the impossible....Oh how I would like my old life back. I could also just wish that Bill had a simpler dementia.

Wednesday, May 07, 2014


Goings on in our dementia world.

Nothing feels like routine anymore.
Each day brings new challenges and new ideas and happenings.
Yesterday was my first day as a woman who has a cleaner! I don't think I ever expected that.
To be honest, I am not sure that I felt the need to rush off out. My body is pained and I feel tired.
But, part of my plan in having Debbie and Wendy in is to provide me with a little time to myself.
I went to Asda for some shopping and then to La Rusta for a pot of tea. Bill stayed home and I hope was not in their way.
I loved arriving back home to find so much work had been done and a glorious aroma from whatever cleaning products they are using.
Jenny popped round in the afternoon.
I am so overjoyed that Jenny is able to give me the security of being cared about.
Just as the Forget me Nots do as well.
On Tuesday evenings the organisers and a couple of professionals who are helping me, meet together to mull things over and to help, advise and support anybody seeking such help. So far the Tuesday evenings are yet to be found by most people.
I am so glad that I have found it.
I am gaining knowledge and support and friendship and laughter. It is a very social evening.
We laughed a lot yesterday evening - starting with some dementia jokes and those evolved into dirty jokes, I come away feeling whole again.
It is not always easy returning home to Bill, but I return on Tuesdays feeling positive and kindly.

Today brought other challenges.
We had an appointment at the bank.
My plan was to sort out separating our joint account.
The lovely Naomi was so able and kind. Bill signed to start his new account. He will almost never use it himself.
Banking is done on line and I will keep tabs on what is happening to his money.
I must arrange to have his pensions and the attendance allowance paid into his account. This money will then be used to pay for extra care - unless his total drops down below the cut off point; then social services must find the funds.
But lets get the package of care established first and then quibble about who is paying for it.
Another strand of care is beginning to come together. Next Wednesday Bill will go to a day care centre. This is a trial day for both him and the home. I am assuming that it will become permanent and when it does I shall want Mondays to be added to his day care regime.
Bill was reasonably behaved in the bank - at least Naomi managed to be tolerant.
So I said I would take him to La Rusta.......but all sense of control had gone and I felt distressed again at the noise.
This evening I left Bill alone for longer than I expected.
I was very late in to have my MRI scan.
But honestly it felt good. I could  close my eyes and keep still and feel secure that nobody could get at me or upset me for the duration.
I shall know on Monday what the experts can read on the scans. What will be, will be.
I arrived home from the evening out alone to be greeted by Bill's noise.
I couldn't take it. I really lost it with him.
The days are gone when I could have hoped for sympathetic words of support.
He did admit that he doesn't want me to die!
Tomorrow afternoon we will go to the monthly D-Cafe.
Time for bed.

Tuesday, May 06, 2014


Ifield May Fayre. 2014,

Despite problems I enjoyed yesterday - the day of the Ifield May Fayre.
Ifield is the village where I grew up and feels special to me.
I was very tired at the end of the day - but joining in and being the person I am, felt rewarding.

So, here is a selection of pictures to paint images of the day - both a family day and a community day.

Bill with our friend Tony Killick, Tony had assumed, that like other years, the Crawley Museum Society would have a stall.
But no, and so his penny farthing was displayed right by the Ifield Conservation group tent, which was organised by Jenny.

Tony pushed the penny farthing all the way from his home.
He cannot ride it now because he has Parkinson's Disease and is almost blind. He is over 80 now.
I thought back to when we had last been at the church together - when Bill and I got married.

The parade arrived, having walked from St Margaret's School.

The May Queen and her attendants were pulled by tractor to the church.

Meanwhile lots of people were having fun.

Otto enjoyed the challenge of the rope bridge.

Others enjoyed the swing boats. There were lots of stalls and games.

School children danced and sung for the crowds.

We met up with our nephew and his family.

More family folk.

This is Lady Ifield.

She won first prize in the scarecrow competition.

Ruth and her boys created Lady Ifield,
They won red rosettes.

        Lots of people outside the barn theatre.

The boys did some
wood work.

Remarkable, I captured the rat.
First attempt too.

Face painting is always popular.
And faces were very skilfully painted.

First prize photograph by Ruth.
The theme was Ifield in the floods. If I had had one I would have entered. Perhaps next year I had better discover the topic in advance.

Jenny tots up scores in the Ifield Conservation Group competition.

Crowds by the lych gate.
The Plough Pub, just outside was doing a roaring trade.
There was dancing out in the street and a Punch and Judy show.

Me, up the church tower.
I had never been up there before.

Church bells.

Looking down on Rectory Farm.                                                     Tricky! Down the spiral

The hair decorations were popular, Thank you girls for posing for me.

The day is drawing to a close. The scarecrows listen to the band.

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