Does a Stroke Heighten Some Senses?

Firstly, the good news is that Pete has stopped staying in bed so much.  He has been getting up at the usual time for the last 3 days and then staying up all day, Thursday and Friday evenings he did go back to bed in the evenings for about an hour or an hour and a half, but then getting up again and finally going to bed about 9.30pm, which is earlier than he ever used to, but at least the majority of the time he is out of bed.  Tonight he hasn't gone to bed in the evening.

The nurse came on Thursday to look at the remains (!!) of the blister on his heel and declared it to be nice and clean and not weeping.  She put a foam heel cushion on it to protect it and will visit again in a week's time to check it, in the meantime I have to keep an eye on it to check it stays dry mainly.  The thing is that Pete seems totally obsessive about it and removes the cushion with monotonous regularity to see how it is, even though I keep saying to leave it alone and that the more he touches it, the more likely he is to get an infection.  He is inspecting it about every hour!!!  

The other point I want to make is that it seems to cause him a lot more pain than it would cause you or me - he is on paracetamols every 4 hours, and not just 2 tablets, but takes 3 at a time.  This is way over the maximum daily recommended dose, but he gets in a rage if I say to stop taking so many.  

So, the question is, does a stroke heighten and exaggerate some of the senses?  When Pete has any sort of pain he tells me it is absolute agony - be it leg pain, catheter pain or, now, heel pain.  This is a question I will have to ask the doctor.  I know his emotions are unpredictable, he can fly into a rage in a matter of seconds or, become very tearful just as quickly.  I have also noticed that he is much more sensitive to heat, especially in food and drink.  The normal temperature of a meal is just far too hot for him and a cup of tea can cause him distress if it is too hot, annoyingly if food or drink is too hot then he can't just blow on it to cool it - I don't know why, but he can't. He just gets angry with me as if I am doing it deliberately to upset him.  

Also, he seems to get quite hot around the house, even though I don't find it too warm.  These are things I have noticed (apart from the emotion thing) in the last couple of months - but that may be because he has had more things to cause pain than he did before so it is more noticeable.  But this causes problems as I can't really assess the true level of pain he is feeling.

So on we go, most days exactly the same as the one before!  We do have the television on nearly all day if Pete is up and he takes a bit of interest, more than he did a couple of weeks ago anyway.  At the moment Glastonbury is being televised a lot and he is interested in that today and looking forward to watching The Rolling Stones later on tonight.

What to say?

Well the antibiotics do appear to be working thank goodness - but now we have new obstacles.

For whatever reason, over the last few days Pete has taken to his bed.  Only getting up for about an hour a day - so what happens if you are in bed most of the time and can't move around much?  Yes, pressure sores!!  

On Monday evening I noticed he had a huge blister on his right heel.  By Tuesday morning, when I looked at it properly, I could see it was a blood blister, and it was causing Pete an awful lot of pain. (There always seems to be something to cause pain - why? What has he done to deserve it?)  This morning I had to pop it as he got really angry when I said no, but it has made no difference.  Suzanne, the physio, came this afternoon (I was going to cancel but felt I had to speak to her about Pete's leg and arm, which is also bad) and she looked at the blister and is almost certain it is a pressure sore caused by Pete being in bed such a lot and it is exactly where his heel touches the bed and every time he moves himself up the bed he is putting pressure on it and rubbing it on the sheet.  She is going to get a nurse come to look at it and advise us as to what to do with it.  She has also told me to keep checking the base of Pete's spine to make sure no sores develop there with him just sitting in bed such a lot.  

On the up side, Suzanne said his leg is ok at the moment, it hasn't got fixed in any position and he is still able to move it himself and can get his foot flat on the floor, so that is good, but his arm isn't doing too well, his wrist is extremely stiff and, at the moment, we can't really get the splint on in order for it to do any good.  It is Botox again in a couple of weeks, but as the last two lots didn't make much difference, I am not hopeful that will help.  If it fails again I think they will probably give up on it.

I had to call the out-of-hours doctors again on Monday evening - turned out nothing wrong!  I fear we will soon get a reputation as time wasters, but when Pete is obviously in distress and pain I am totally at a loss as to what to do.  He had had the catheter changed earlier in the day and seemed to be in acute discomfort with it, but it was all checked and was fine, he had also got very vague but snapped out of that when knew dr. was coming, but dr. thought that may have been due to the very strong pain killers he had had earlier.  Anyway, come the day it is something really serious, it will be a case of the boy who cried wolf!   The only good thing to come out of that is that the new GP rang on Tuesday to see how he was - that has never happened before, and just proves to me that I was right to change his doctor.  He also made an appointment to see Pete next Tuesday.

So, there we go - new problems all the time! 

Even Worse

After a good, positive day on Wednesday, we are really paying for it now - back to normal and even further down.  You think you have hit rock bottom and it can't get worse, but it does.

Pete has again got a urine infection - this has caused much distress and he is now spending most of his time in bed just feeling totally miserable.  He gets very angry if I don't immediately understand what he wants and he is totally using me as his whipping boy. 

I have thought about getting help, but what can I get?  It isn't as if he needs anyone to do things for him.  He doesn't even need anyone to cook him a meal as he hardly eats now. If anyone was to just come in to be with him that would be useless as he can't talk and he really wouldn't like it.

So, I am hoping the antibiotics will kick in soon, but I know he will still be in some sort of pain, be it emotional or physical.

Positive Day - for a change!!!

We have had a good day today, especially this afternoon.   

To take things in the order they happened - we started with a nurse arriving to change Pete's catheter.  This was good news, but on the down side she arrived 10 minutes before I had to leave to get to a drs appointment!  So my many questions remain unanswered, but that will be easily solved with a phone call to her I hope.  This one can stay in 12 weeks!!  But I need to know whether she will return after that time or whether I need to arrange it.  Also I have a few questions on the care side of having one in.

I attended my appointment with the GP and, I am very pleased to say, he has agreed to take Pete onto his list.  What a difference in attitude!!  He wants Pete to go in to see him for a 'meet and greet' and so that he can assess/review the situation, have a chat with us and get any tests he deems necessary done.  At last, a GP who cares, he also looked after my mum and was brilliant with her so I am confident things will change for the better now.  He has also signed me off for 4 weeks which will cover my period of notice to my employers.  Yes, I have made the decision to give up work.  I would worry about leaving Pete for 6 hours now and also as I never know how he will be in the mornings, I would be going to bed wondering whether I can go to work the next day.  These are things I don't need to deal with and, having made the decision for definite, I feel much better.  Things will be difficult but, hey ho,  we will survive I'm sure.

Just after lunch my mate from work called in and brought me some Lindt chocolate balls (my absolute fave choc, absolute heaven) and a collapsing giraffe I had in work which NEVER fails to make me laugh!!  She is a star and I will desperately miss working with her but we will be meeting regularly for catch ups and chats.

Then, the icing on the cake, this afternoon we had a visit from Pete's sister, brother in law, and brother.  Pete was absolutely so thrilled to see Ruth and Dave, very emotional when they arrived and again after they had gone.  It really really cheered him up and made his day.  Lots of chat and Pete very alert all the time, not once did he slip into the state he has been in so often lately.  They also brought their Jack Russell, Petra, which, as Pete loves dogs, was the double icing on the cake!!   As he has been so introverted lately I was a bit worried how he would be, but am ecstatic now, it was fantastic to see him so animated.

So, for a change, an excellent day which has been very enjoyable.

Oh yes, one last thing, we have an appointment to go to Plymouth Hospital in July, only 5 weeks to wait which is a much shorter time than I was expecting as the paperwork said they aim to give you an appointment within 18 weeks!! 

Brief Moments of Interest

In this black hole that we seem to be living in at the moment, we did have a brief respite on Friday.  When I went to get the washing in I came across a man with an Eagle Owl on his arm (a bit bizarre to say the least!!) in our garden! He was actually looking for a neighbour but agreed to come to our front door so that Pete could see and meet his owl.  She is a 2 year old Eurasian Eagle Owl called Sage and we were very privileged to be able to get so close and even stroked her and felt all the soft down underneath her main feathers.  Pete was very emotional and I was really pleased to see him showing an interest in something again, even if only for a short time.

It is now Sunday and Pete has not had any episodes since last Monday, so I think we will stick with three epilepsy tablets a day - I only hope I have not tempted fate by saying that! He seems to be taking paracetemol most days for the pain in his leg, but they are controlling it I think.

He remains in the same state of being totally uninterested in anything, mostly just sitting there, almost as if he were on tranquillisers.  The only difference is that in the last couple of days he has started picking up the tv remote and just flicking backwards and forwards through the channels, never staying on anything for long - this is really annoying and I have to bite my tongue to stop myself saying something.  

These last two months have been a real trial for both of us and I have to say that the Pete I used to know is slowly but surely slipping away from me. His personality has totally changed during this time and I know he is incredibly sad most of the time, if not all the time.  He doesn't eat much and is so thin now. But what to do?  I can't force him to eat and he is adamant he doesn't want antidepressants. I have got the paperwork to book an appointment at Plymouth with the Urologist, but, to be honest, I don't think that is going to solve anything as it seems to be a general downward trend in all aspects of life.  He would never have wanted to live like this and it is going to be incredibly hard to get back to where we were a couple of months ago.

Last Few Days

To rewind to Monday, this was possibly the very worst day. Pete woke early, 5.15am and immediately it was obvious he was having another 'episode',  alternating between agitation and being very starey.  He had had a short episode on Sunday as well, but this one lasted 3 and a half hours. So, the tablets were not working well.  I made him stay in bed all day and stayed beside him - only going to make a cup of tea or sandwich or go to the bathroom. I didn't dare leave him as he seemed fairly dazed all day, most of which he just spent lying in bed looking around or lightly sleeping.  I was getting doubtful about being able to get him to the surgery on Tuesday.

Tuesday came and Pete was much better, not his usual self by any means but at least he was with us on this planet!!  The visit to the GP was a waste of time really - he didn't seem interested and had not read the notes beforehand.  He didn't seem to understand about these episodes and it was only when I persisted in asking what I should do that he eventually decided to double the dose.  There were two extra tablets that had to be added to the repeat prescription list and he gave us a prescription with these on to take to the chemist.  Unfortunately I did not have my specs on so didn't check the items and it wasn't until I took the prescription in that I realised he had made a major mistake, and I mean a major mistake.  A couple of weeks ago we had also had a major error on the regular monthly prescription which involved returning tablets and getting an emergency prescription faxed to the chemist, again a mistake by the GP.  So, that is it, decision made, Pete has to have a different GP.  I have made an appointment with mine to see if Pete can transfer to him, if not then it will be a surgery change - all things we don't really need to have to deal with at the moment.

In order to double the dose of epilepsy tablets, one extra has to be given for 4 days and then 2 extra a day.  It is only today that I have managed to get Pete to take an extra tablet - and that was only with a bit of blackmail! If he didn't take it then I wouldn't give him a sleeping tablet tonight!!  Anyway he has had no bad effects from it.  He hasn't had an episode since Monday so I am thinking I may leave it at 3 tablets a day if we can get to Sunday without having another one.

Each day I wake up wondering what it is going to be like - he spends most days just sitting around, occasionally glancing at the tv, but really totally uninterested in anything.  I had mentioned to the GP about antidepressants but he just said to Pete did he want them, Pete said no, so end of subject.  No attempt to find out his mood or anything, or whether he would benefit from them.  I don't really like the idea of antidepressants but I do think that they would help at the moment - but it is not to be!! 

So each day is now blending into another with no improvement at all.  I am finding it very hard to deal with the situation, especially when I can't see it improving any time soon.  I am very wary of leaving Pete on his own, I went out yesterday for an hour but couldn't get back quick enough.

What will be the end of it? I have absolutely no idea.

Short Update

I am not going to go into detail tonight, but I definitely will give an informative update in the next couple of days.

Today I just want to say we met Pete's new GP today - were we impressed?  Unfortunately the answer is no!  As his old one had retired we were expecting some bright, young, enthusiastic doctor, but this was definitely not the case.  The only good thing to come out of it is that AT LAST we have managed to get Pete referred to Plymouth.  Well, saying that, we heard him dictate the letter but as we didn't actually write and post it, will it find its way to Plymouth???? 

The other thing I would say is that you expect a doctors surgery, of all places, to be wheelchair friendly.  Is that the case?  Big fat No!  Never having taken Pete there before I had not thought of it, but in order to place the wheelchair somewhere where we could see the screen which tells you when to go in, you have no choice but to be in everyone's way!  So, much sighing as people had to manoeuvre around us!!  I told the doctor this but don't think he was too impressed with that observation!! 

That's it for tonight - will definitely blog again in the next couple of days with gory details!!! 

No Title

Well, although we are pretty well down and out life won't leave us alone and is relentlessly administering a good kicking just about every day.

Too much is going on to detail, so all I will say is we are going from day to day.

Rock Bottom - and beyond.

We thought we had pretty much hit rock bottom and things couldn't get much worse - but no, life is still delivering the knockout blows.  

As far as I can recall, Friday seemed ok, not brilliant but not desperate.  I managed the catheter bags ok, not as difficult as I thought.

Saturday was the day it all fell apart - again.  Having woken up at about 7.15 it seemed alright, I went to make a cup of tea and came back to bed.  Pete then started getting very agitated and moving his arm and legs around a lot, then went very quiet and staring around.  He was alternating between the two although he never lost consciousness.  I stayed with him and tried to relax him whilst wondering what to do, having called an ambulance twice already during the week and resulting tests showing all was normal, I was reluctant to go down that path again.  After an hour, when it didn't seem to be getting any better, I called the out of hours doctors.  Having explained all the history and what was happening now, they sent a dr to visit.  She did lots of tests, etc (blood pressure, temp, diabetes, etc and wouldn't you know it, everything normal). But she was concerned and mentioned cerebral agitation and query stroke, she called an ambulance and off he went again to A&E.  Of course, when I got there about 15 minutes later, he was back with us and all the tests were showing normal.  They decided to admit him to the Medical Assessment Unit again to try and find out what was going on.  I saw one of the doctors in the afternoon and he said they didn't know what it was so wanted to observe him to see if it happened again, so would keep him in.  Dr. Dent, who is the consultant Pete was under when he had his stroke and was in Bideford, was due to do a round later in the afternoon and they would see what he said.  

Back I go at visiting time to find Dr. Dent actually with Pete (complete with his entourage of drs and nurses) and he has now diagnosed Pete as having epilepsy.  He had had a scan and has had the major stroke but also a few smaller ones apparently and the scar tissue on the brain is getting impulses and causing seizures.  Not major seizures I hasten to add, nothing like on the tv(!)  These can occur at any time after having a stroke.  He prescribed some tablets and said as soon as Pete had had one tablet he could go home.  Fine - except that this particular tablet is like gold dust in our hospital and trying to find one took a couple of hours or more!  I was also given one to give Pete in the morning and then had to return to collect a supply from Pharmacy on Sunday.  

So, back home again.  Pete didn't really react well to the first three tablets he had (he has to take one twice a day) and got very weak, very quiet and not at all himself.  I wasn't going to give him one this morning but he said he wanted one and he didn't react anywhere near so bad.  He has also had one tonight with, as far as I can see, so reaction, so hopefully it was just his body adjusting to them.

He has to return to see Dr. Dent in 8 weeks and in the meantime I have to contact his GP (he has a new one, his old old having retired,) and get more epilepsy tablets and discuss the urology referral.  Wouldn't you know it, his new GP is away this week, so I have booked a telephone call from another one in the Practice for tomorrow morning.  

As for me?  I am falling apart a bit here and finding it hard.  I have gone off sick from work to try and sort myself out and get a handle on things.  Then I will have to make a decision about the future and which road I am going to take.

And so we go on - waiting for the next blow, which may or may not come, just have to wait and see.