Thanks for sharing your experiences . . .

[Dandygal76]

Hi Mo, you could try and go up there anyway. I paid no attention to dads visiting hours when he was really ill. I even took along a camp bed and pitched it up next to him the last couple of nights and no one said anything - at this point though the writing really was on the wall for poor dad and he needed the comfort of company. There was relief from him when he knew I was staying. You couldn't get on the ward after 8pm but the security guard in A&E took me up there after I had been home to freshen up and my family had left. Does he have his own room? I think once all the results come in from the scans and the blood work they do in the mornings you will be able to make more informed decisions on what is best for you both based on the prognoses. To be honest we would only have been a help when it came to dads care. I think most hospitals are flexible depending on where the patient is at in the scheme of life with PC. x

[Sandiemac]

I second DG's opinion. Ignore visiting hours and just go when you want. They can hardly forcibly eject you. Peter will know you are there and that's the most important consideration.

I spent hours just holding Stephen's hand.

[Veema]

I agree...sod the visiting hours! When my Dad was in hospital in the summer, we could come and go as we pleased despite the ward having set visiting times. You have every right to be there when the doctors do their rounds.

Much love Mo...and I hope Peter is a bit more lucid today.

Vx

[Didge]

Me neither. If necessary I’d just say “the docs asked me to come in” or “I was asked to come in” and if asked to specify an actual name become forgetful (not hard to actually BE forgetful in the circs). Rarely had any probs. Most of the time I just walked in with no conversation taking place x

[WifeampMum]

Thinking of you, Mo and Peter, and wishing Peter well. This latest scare does sound very scary so I hope you hear some reassuring words like “temporary” or “easily treatable” from a doctor when you visit today.

Much love as always

W&M xx

[AndAde]

Thinking of you, hope it all goes well xx

[Justamo]

Peter's speech has come back. Mostly words beginning with F and B, but that's OK by me. His confusion has lessened as well, and the CT scan showed that he hadn't had a bleed.

I waited for two hours to speak to the doctor but had to give up as I was just too sore to wait around any longer and Storm Caroline was building up. A staff nurse went over Peter's notes with me which showed normal bloods and the general opinion was that maybe his blood sugar was a bit low and that caused the confusion and loss of speech. But I checked his blood sugar while I was ringing the GP and it was 8.1. No explanation has been offered for his heart misbehaving or his stats swooping up and down. Clearly I need to speak to the doctor - she talks of discharging him tomorrow.

And of course after I had parked briefly on the way to the hospital in driving sleet and gale force winds my car refused to start. Turn the ignition key and nothing. So I burst into tears but that didn't help, then I phoned a friend, then after 15 minutes I tried again and it was OK. Obviously a loose lead involving a connection to the starter motor, so I'll use Peter's car tomorrow and my phonable friend will pick my car up and give it a medical in his workshop.

Now I am going to have a long very hot shower and then Boo and I will go to bed. Neither of us slept much last night and I feel weepy and a bit shaky.

I should like to make a short speech thanking everybody for their support but it'll start another weepy episode so I won't.

Love Mo

[Quickasyoucan]

Mo you are entitled to be weepy at any time you wish. I hope that you manage some sleep tonight and am pleased your patient has recovered his speech and the ability to cuss. Thank god for friends you can phone and for cats who keep you company. We are there with you in spirit x

[Veema]

And it's times like this that we all wish we lived close by so we could give you a real hug and rally round cooking casseroles and all that wartime camaraderie (sp?).

I think words starting with F and B (especially when used together) are amongst my favourite words...I feel I'd get on with Peter like a house on fire!

Have a cry Mo...get it all out, have a good rest, then up tomorrow to start all over again. I really don't know what's worse...the awfulness of looking after someone, or the awfulness of them not being here anymore.

Much love

Vx

[Justamo]

Boo and I had a good sleep and woke at 0430 and had a nice cuppa tea and watched some silly stuff on TV about gym equipment and steam cleaners. I think that at one point the gym exercise people were working out with steam cleaners, but perhaps I dropped off for a few minutes and dreamed it.

I missed the aquarobics group Christmas Party last night which doesn't bother me too much. It was a rotten night of storms, the snow looks to be 4 - 5 inches deep this morning so there will be some interesting manoeuvres when everybody goes to work, because our cul-de-sac is on a steep slope.

Not sure what today will bring but after you've been on Planet PC for a while you accept that anything can happen.

I should also like to share with you that according to his chart, Peter's creons were given to him at 22.00. Perhaps they were planning a midnight feast ?

Have a good day.

Mo x

[WifeampMum]

Nope, I don’t think the NHS could run to a midnight feast. More likely they’re getting Peter ready for his breakfast. Grrrr.

Hope today is a better one for you and Peter.

xxx

[Dandygal76]

I am glad Peter is feeling better and I hope he is home soon. It is frustrating that they still cannot seem to get the creons right half the time. I had a big stash of them here but sent them all to a family abroad who needed them otherwise I would have sent them all to you. I wish I had saved them now for this type of scenario that comes up time and time again. Do you not have a stash at home you can hide in his socks or something?

Did you manage to get your car sorted? That would have made me cry in that situation as well.. you couldn't make it up sometimes. Anyway, try not to cry too much because Marmalade told me once its make you fat and ugly which made me stop straight away as I am already a little plump and ugly and so thought I would turn into worse than Shrek!

I hope today has been one of those surprising good days for you both. Let us know how things are when you can. xxx

[Justamo]

He's home. Mind you, he would still be there if we'd waited for The Letter and The Medication. They said he could go when I phoned (and sounded quite glad about it), so I threw jeans, sweater, shoes and socks into a bag and raced up there at 10 mph. Really heavy snow which froze as soon as it landed. Cars were going up hills sideways and coming back down again boot first, engines were revving, pedestrians with a death-wish were stepping out onto the road with no warning, the local plod shut themselves up into their police station for a game of cards and chaos generally reigned.

But I got there OK, the car didn't misbehave, and Peter threw his clothes on in record time. They said we had to wait for medication and discharge letter, so we did. And waited. And waited. After an hour I went to enquire, and was told that they were 'busy'. So is Tesco, and it's a damn site more productive. By this time there were white-out conditions outside and I was seriously worried about actually locating the car, never mind driving it.

So we left sans letter and sans meds (statins) and we'll see the GP early next week. Peter is a bit shell-shocked and a wee bit confused, but he's terribly tired too, so we'll see how he is after a night's sleep.

He says that all he wanted was to come home to his family. That's Boo and me.

The last doctor he spoke to in hospital told him that he'd had a very small stroke, hence the statins. I think that talk of low blood sugar was because the consultant in charge of the ward was a diabetes specialist. They moved him last night and the new ward's consultant is a heart/stroke specialist. But we'll ask the GP to translate for us when we see him.

I'm bushed, I have a new fracture, and I need to lie down comfortably and drink gin. Or whisky. Or whatever we have most of in the cupboard. Peter is already asleep in his armchair, despite snooker on the TV, so I'll nag him to go to bed as well. It's 7.30 so we won't stay up with the grownups tonight.

Good night folks.

Love, Mo

PS - we do usually do a bit of drug - well, food supplement - smuggling anytime Peter is admitted, but this time he was too muddled up. He would probably have lost them. But good point, DG.

[Marmalade]

Delighted that Peter has revived and that you are both home. It's a worry when they are away from you and worry when you are the sole carer at home. BUT, you are both home and can sleep in your own beds and there is a lot to be said for that.

Night night Mo and Peter, rest well and may you have a peaceful night.

Marmalade xxx

PS I should think Boris is pleased to have an end to the comings and goings xx

[sandraW]

Hi Mo, sorry I haven't replied to your posts but I have been away for a couple of weeks and had no internet.

As Marmalade said its good that Peter is back home, he really is going through the mill, at the moment, no wonder we say its a roller coaster ride!!

I hope you found the gin/whiskey or whatever else you had to hand and had a peaceful sleep, it does help if you can, as some one said earlier we all just wish we were round the corner and could be of more support to you, but I am sending a gentle virtual ((hug)) to you anyway, sorry it can't be a casserole. Just want you to know we are there sending much love to you all sandrax xx

[Marmalade]

Good Morning Mo,

I hope you and Peter are keeping comfortable, warm and cosy. The forecast has been dire for Scotland. Just wanted to let you know I was thinking of you all. Does Boris have snow boots?

Marmalade xx

[patrigib]

Hello Mo!

Hope you and Pete are as comfortable as possible, and Boris too. I really feel connected when I read your stories. I'm also the only caregiver as his only son died of cancer early this year and his daughter in law and grandson broke up all contact ( families are so nice!). I just don't know where all your energy comes from. I'm more and more often having afternoon sleeps with him and get exhausted by any extra thing to do.

I' m a cat lover too, and two of my '4 cats died recently, which have been replaced immediately by other stray cats begging for a nice place to stay.

My husband is battling PC for over 3 years now, and when I was told at first he'd only had a few months left, everything in your life changes and you find yourself "trapped" in a great loneliness, as all is about your patient. It can't be otherwise. My husband also got diabetes, he is more and more tired and forgetful, which is normal as he is already in his 3rd chemo line, but it means we are always in a worry.

It's really great you still manage to have a swim or a chat with your friends, and have the energy to sew, and to send us your posts.

Really hope everything is quiet for a few days, so all of you can have some "rest"

Love

Pat

[Didge]

Pat I’m so glad your hubby has passed the 3 year mark. That’s a tremendous achievement and must give you hope that something is working. But it’s so hard being a carer for someone with PC so that 3 years will have taken a heavy toll. I do hope you manage to have a good Christmas and don’t find it too exhausting! X

[Dandygal76]

Hey Mo

I hope you are quiet because life is calm. I doubt there is a lot of golf going on with this weather and not sure how Bo takes to going outside. Our dog is a wuss and refuses to go walkies if it it raining but apparently he loves the snow and trying to catch a snow ball which is quite funny. Being near to 18 months now is an incredible feat by Peter and long may it continue like Pat's hubby.

Love

DG

[Marmalade]

Hi Mo,

Glad to hear Peter was well enough to be taken to the surgery and have dropped by to say good night, make sure you stay on the opening page of posts and wish you Peter and Boris a peaceful night.

Much love M xxx

[Justamo]

This afternoon My Patient has graciously waved goodbye to a visitor, and has settled down comfortably under his quilt for a short rest before I serve a carefully planned light supper which will feature prawns and some rice. And if I had any valium I would be chewing them like Smarties (other choc sweets are available). I already have a twitch, and have worn a path in the landing carpet where I have been pacing up and down.

Peter was discharged from hospital on 8th December and spent a couple of days with 'normal' pain and a 'normal' appetite before the roller coaster began to head downwards again. On 14th December we had to attend for a CT scan which was in preparation for an appointment with Dr Feelgood on 15th December, except that Dr Feelgood's appointment has now been postponed until 29th December. Which, as things turned out, is probably just as well. After the scan Peter felt well enough for us to go and get something to eat out and then we went home.

On the Friday, things were not good. He just didn't seem 'right', but I couldn't figure out what was wrong, until about 9pm when he asked me for a screwdriver. He wanted to fix a lamp and had partially dismantled it. There was nothing wrong with the lamp. Then he didn't like the furniture, and wanted to move that round to 'make room for his visitors'. There were two men sitting in his room (no there weren't) and they would fight if they had to sit near to each other. He had lengthy conversations with each of them and told them in great detail about a job he was working on. I mildly suggested calling the doctor, and he went completely ballistic. Eventually he dropped off to sleep and I stayed alert all night in case he woke and was confused again.

Saturday and Sunday things were even worse. He was aggressive, hallucinating and disturbed, and the only reason I didn't ring the out-of-hours service was because I'll never forget the look of sheer terror on his face when he was admitted to hospital during the last bout of 'confusion' and didn't know where he was. On Monday morning I rang his own GP, and, praise be, he came out personally and spent the best part of an hour chatting to him. The strange behaviour had ceased when he woke on Monday, but sadly he could remember nearly all of it. GP said that he would check the last CT scan of Peter's brain (taken when they thought he had had a stroke after losing his speech temporarily), told me that if it happens again I must get help straight away, and promised to ring back with any information gleaned from the scan.

When he rang back he told me that there were no brain mets that he could see, but that we would shortly have to have a conversation about sedation if this happens again. I'll handle that when the time comes, and have filed it away in the back of my mind for now.

Meantime, things are peaceful. I even had a bit of a nap yesterday afternoon to make up for three lots of night duty over the weekend. I have replaced all the medication which Peter poured into his sharps bin during the confused period and at the first sign of any problem recurring I have a safe place to store everything where he can't interfere with it. (Boot of my car). I am reassured that this has happened to other people, and that sometimes it's just an isolated event, and that GP is speaking to Dr Feelgood so that he knows exactly what's going on.

GP also doubled Peter's pain relief, which may sedate him a bit, and I'm clinging to the wreckage. Just.

Love, Mo

[sandraW]

Oh Mo, what a horrible experience for you both. I just wish I was near enough for a coffee and a chat, and to take a turn with the pacing.

You should really have rung for help, but I understand exactly that you didn't want to upset Peter again, its all so hard and so bloody scary.

I have no suggestions to offer as to what it might be or how to manage it either so I'm not a lot of help, but I am thinking of you both, and was awaiting your posting, just hold on tight, sending a big cyber ((hug)) take care love sandrax xx

[Justamo]

. . . Just had a convulated conversation regarding the advisability or otherwise of putting chocolate in your central phone hub.

No, I don't know either, but he's gone to sleep now and I will monitor the situation once he wakes.

Seemed OK up till now.

M

[Marmalade]

You are doing amazingly well with the many facets of this disease Mo and being a little too stoic sometimes but we have all been there too.

Having the hard conversations has to come and I would encourage you both to do this as it sets the path of how someone wants to be treated, where, and by whom. It also takes away an elephant in the room and need not be constantly referred to. Patient fears can be addressed and anxiety alleviated by the medics but they have to know this is an issue and that the patient wants to be made comfortable and less anxious. Sadly they tend not to prescribe for the carer who mostly remains anxious. The point eventually comes where our role changes, we move from keeping everything going to not hindering the natural process. I think when it comes, it is the hardest thing in the world to stop fighting for life.

All that said, Louis' hallucinations did not last long and he had good quality time beyond them. Peter has always bucked the odds and is still mobile, able to go to the doctors surgery and between episodes he seems to get about, eat a bit and be fairly independent. All very positive and he clearly has fight left, good for Peter and good for you, his loyal and loving nurse.

I wish you, Peter and Boris a calm and restful night

M x.

[Justamo]

Last week, when everybody was compos mentis, we had The Conversation with Peter's GP, and duly have a DNACPR form on file.

All quiet on the PC Front at present, Peter has been topped up with his increased dose of painkiller, so I'm watching stupid videos on YouTube but will go to bed presently.

I can feel the vibes ladies, thanks.

X