Grandma P's Ramblings Through Life

Postscript for May 5th.

Firstly sorry I sounded so black in what I wrote earlier - it is a true representation of how I feel for much of my life.
I shall copy it tomorrow and send it by email to Colleen, the specialist dementia nurse.
I am up late tonight - just relishing some time without Bill. He goes to bed quite early.
I have battled instead with sorting photos of the Ifield May Fair - they are now on facebook.
I'll choose some of them to put on a blog posting tomorrow.
It was a good day - a successful event, with much to entertain and do.
My highlight was climbing the winding staircase up the church tower. I have been in and out of the church for almost 65 years and have never been up there before.
Half past midnight now.
Must not be up late tomorrow.
I have to do what many people do - I must tidy the house a bit before the cleaners come in!

I have spent more than an hour floating. No, not in water, more a sort of out of body experience. I floated amongst trees, as far away from reality as possible. The reality of my life seemed so very impossible. It was a good day - or could have been if I could avoid the weight of Bill on my back; if I didn't feel him clogging my heart with his unbearable behaviour. I feel like my body, my blood flow, my gut, my muscles are all tangled and knotted. It is no wonder that I have so much pain and fear. It was good to float away to some place far away.
I fear that the reality of my situation will destroy me; the process has already begun. My brain and my body are constantly assaulted by violent noise, loud noise, silly noise. Others feel the pain of it; it can distress them too and they feel helpless in trying to protect me. It became more than I could cope with. I escaped to my bed and floated away.
Why do I have to come back?
I hate feeling my brain shrivel under the power of Bill's constant attack.
Yes, I know he has no ability to control it. He is unable to know what he is doing to me
But that makes it worse - for I know that there can be no end. Every day will bring the same - more constant noise - try living with a very noisy chicken! Try watching and listening to your life companion hitting himself so hard it hurts.
The only end is the finality of death, his or mine. I can yearn for it quite often.
Unless........such a useless hope, I guess, that some expert might see this problem as wider than dementia alone.
The out of control rhythmical noise makes me think of something like Tourrettes Syndrome. I'm not saying it is that. But there is medication to help control it. Will somebody be brave enough to try it?
It seems to be such a long wait for Bill to be seen by the neuro psychologist - maybe the only one who might be empowered to make such a decision.
Meanwhile we both are blown hither and thither by the whims of a failing brain. I am losing my love for the man - he is driving me over the edge to fall into a whirlpool of insanity and pain.
I could love him and work for him if the constant noise was removed.
What can I do?
Right now, all that I can do is abandon Bill to his own company and slip away to float off into the wide blue yonder.
That is not loving care - not really any sort of care. But it may be the best I can do.T

I had planned to get up and go to the car boot sale at Sayers Common. But after a disturbed night I woke up quite late - not too late really. I am guessing that I actually chose not to go. After 5 weeks of non activity I am finding it hard and scary to think about getting going again.
But we did get going.
We needed something different, so I took Bill to Newhouse Fam Shop and tea rooms for a snack. In truth, we did miss La Rusta for the ambience, friendliness and quality and service.
I had read on their facebook page that bluebell woods were close by and so we went for a walk.
I ordered Bill to take some photos - not just ones of me. He found that hard and maybe a bit scary. I thought he would be like a child, running hither and thither snapping everything he passed. I had promised him that it didn't matter how many he took and that I would sort them out on the computer.
I think he took about 4 extras plus me today. We'll try for more tomorrow.
Bill really should try to do things that he feels proud of.
Here is our walk.


















































































































































































This was taken by Bill.
Once upon a time he would have wanted an image better than that.
But I just would like to see any sort of images and that he knows I am sharing them with you.












Bill can take good pictures of me. I help him by knowing how to pose and telling him where to stand.
































Nice smile, Bill.








































































































Back to the farm shop and tea rooms.




















It was time to go home and rest and drink.
My mouth gets so dry at the moment; I am guessing that the strong painkillers are causing that.
Bill went and had a lie down.
He came down an hour later, much confused.
He's done it before - worried that he must have gone to bed in his day clothes.
He asked what I was cooking.
"Dinner"
"Dinner?" he queried. "what's the time?"
I told him, getting on for half past six.
"Not breakfast time yet, then?"
"No Bill - it's the evening"
"No - can't be; I just got up"
Oh his confusion was hurting him. "If it's evening,"he asked,"then what have I been doing all day?"
I told him, showed him some of the pictures, which I was working on.
They seemed to mean nothing to him.
He was trying to work things out and he was bothered.
He admitted that he must be losing his mind.
Bothered and straight into hitting himself.
I decided to lie!
"Bill, you know how I say I can't cope well with all the noise and that it makes me feel that I am losing my mind"
He does sort of know that.
I then told him that the noise and the hitting must be hurting his brain too. I told him his brain needs to feel calm.
For a brief while he seemed to accept me telling him to stop. I told him I loved him and wanted to make things good for him and I should be helping him live more peacefully.
Tomorrow it will all be forgotten of course.
Tomorrow we are going to the Ifield May Fair. I shall ask him to take lots of photos again.

A few Nymans pictures from yesterday. It is still the wisteria season - though most growing in the pergola have now gone to seed.
They are so beautiful.

Too tired. Too much pain.
Some pictures can wait until tomorrow.
We took a small picnic to Nymans at lunch time and enjoyed the colours.
Bill was noisy.
It distresses me so much.
He has been noisy all the time he has been away from his bed.
He complained that his hiatus hernia was hurting - well, no, he didn't use those words.
Have I managed to persuade him that hitting his belly so hard will inevitably make that worse?
Must get to my bed now and take more pain killers.
I don't feel I can take much more of it.
And the noisier Bill is, the more stressed am I - and therefore more in pain.
I feel so angry and sad.
Goodnight.

Friday group day. I feared that Bill would be too restless today. He has certainly been too noisy at home. And so muddled. A couple of nights ago he was thinking that Roger and Sue would be coming to collect the kids who had been staying with us. Last night he was wondering where everybody was. He thought he was in Thailand with the family there.
Anyway, once at the group, Mandy took him off to play dominoes. I was so glad of a chance to enjoy a cup of tea and sensible chat.
While Bill was busy with the exercises I was updating Hannah, who works for the Alzheimer Society. I suggested we meet at the group, which she had never visited before. After lunch Julie Carer came to meet Bill. She is going to be around on Monday afternoons, so I don't have to leave him alone all day. She plans to give him interesting activities - maybe out for a walk or even go to La Rusta.
Sounds good to me.
Bill and I joined in a game of bowls.
A busy time, but Bill certainly found opportunities to annoy the other people.
And to upset me, of course. Easy to get upset right now.
Stress - pain......I could do without both.

Insomnia is rife. I was awake, again, at 3 o'clock. I wrote something on Facebook and received almost instant replies. So many people suffering pains and stress - tough for so many, but I am happy that we can support each other.
I was expecting to be out this morning, but instead I enjoyed extra time relaxing in bed. The clinical psychologist is not well and the appointment was cancelled.
I enjoyed the peace and quiet, with Bill still sleeping.
I probably should have done a few things, but the pain does tempt me into idleness
Bill got up, exuberant and full of noise. How can hitting yourself  feel so good?
I spent a while talking with Bill about his appointment with Dr. D.
I explained that almost certainly the doctor would order Bill to stop driving - at least until the assessment that I have arranged and paid for. That will be May 22nd.
Bill did seem to understand what the doctor was saying. He couldn't express how he felt. But he was confident anyway that the decision would be reversed in three weeks time.
I can't comment on that. Who knows?
Today I have been working on another of my intricate doodles. It's very relaxing and kept me peaceful and calm as Bill banged, clapped, laughed and chirruped. I thought he should be allowed to release any tension caused by the driving ban.
Now watching the programme about P
Protecting elderly parents. It's about the world that I am now living in. I didn't watch the programme last night about incidents of cruelty in some care homes. I needed to protect myself from such terrible things.

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, well........in 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.

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 it......life 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.

So what do I know today that I didn't know yesterday?