Psychology Session and then a surprise for Me, Me, Me!!

Another psychology session this morning which went really well and with not so many tears as usual!  Candy noticed a change in Pete straight away, said he was looking much more cheerful and brighter than last time when she left feeling quite concerned about him.  He certainly seems a bit more cheerful this last couple of days - I'm not sure whether it is the nerve blockers starting to kick in or not.  Pete is very keen to take them so I think they must be starting to make a difference but haven't blocked the pain altogether.  He still spends some of the day sitting on the bed with his legs up on the bed which obviously must help, but he is also spending more time back in the sitting room.  He told Candy the pain is easing but then told me it wasn't!!  So which is it?  I said to him he must say it how it is and not say what he thinks we want to hear.  

We haven't started the new antidepressants yet and Pete is basically indicating he doesn't want to take them.  I can't force the issue even though I think they would help, but, on the other hand, if he is feeling better without them, does he need them?  I think his main issue is that he can't have a sleeping tablet at the same time and he is now very reliant on these, also psychologically I think he feels a failure if he needs to take them.  I find it hard when he feels low so would rather he took them, even if only for a short time, but he has to make the decision himself.

One thing that makes me think the nerve blockers are beginning to work is that, for the last 2 days, he has helped with getting tea.  He has been getting plates out, taking things through to the table and setting the table, things he used to do but had stopped.  This is a very positive sign that things may be slowly picking up - I hope so.  Also his appetite is slowly improving, slowly yes, but improving all the same.  He has started eating cakes and chocolate biscuits again - not good for you I know, but good for him! Get some weight back on is the challenge! 

Now to me, me, me!!!   I had a really nice time out with the lovely ladies on Sunday evening.  Caught up on all the chat and gossip and had a good laugh - just what I needed!!  These 3 ladies have all been there for me throughout and I can never thank them enough.  

Then today I was lured over to the ward I used to work on, only to be given some fantastic leaving presents! What a shock and surprise!! I had some beautiful flowers, a lovely scarf, some gift cards to spend and a mug by Sophie Allport.  The mug made me laugh, and will continue to do so every time I use it, because it is decorated on a gardening theme - one of my pet hates!!  The girl who bought it mistakenly thought I liked gardening!  But it is totally acceptable and, as I said, will make me laugh whenever I have a cup of tea or coffee - brilliant!

So, I am feeling much more upbeat at the moment - long may it last.  

Dysesthesia - yet another effect of the stroke!

As everyone knows Pete has been suffering a lot of pain, mainly in his heel.  But I have also noticed over the last few weeks that he has become very sensitive to me touching him on his right arm and leg, even if I just lightly touch him he really flinches and pushes my hand away.  Another thing is that he now can't drink a hot cup of tea or eat anything too hot - tea has to be really milky to cool it down.  I had asked his consultant if the stroke could make him more sensitive to pain, to which he replied yes.  Having now had a copy of the letter to the GP, it seems Pete is now suffering from dysesthesia!  (Just one more thing to deal with!). Probably caused by mini strokes and epilepsy - his brain messages seem truly scrambled!!  Having Googled (whatever did we do without Google?!??) dysesthesia, it comes from 'dys' meaning not normal and 'aesthesis' meaning sensation - basically the distortion of any sense, especially touch.  The consultant's letter said the antidepressants and higher dose of epilepsy tablets would help manage this, but also another drug could be added if it became necessary. Pete refused this drug and then I found he had cut the epilepsy tablets and he won't take antidepressants, so probably no wonder it has got worse!  Yesterday he seemed to be in even worse pain and after discussing it with him, and him promising to take the nerve blocking tablets if I got them prescribed for him, I rang the surgery and booked a phone call from his GP.  At lunch time his dr rang - so told him what I wanted, but he hadn't got round to booked calls yet, he was just ringing to say he would be visiting that afternoon to see Pete and how his mood was!   The Psychologist from Monday had contacted him with her concerns!  He agreed to prescribe the nerve blocking tablets and would bring the script with him.  When he came, he talked to Pete and was so good with him - he was very concerned that Pete had stopped the antidepressants but suggested another one that would help his mood, help his appetite and help him sleep.  Pete has agreed to take these aswell, so I hope we may be on the right road now.  He has started the nerve blockers (and I have also told Pete they help to re-route brain messages which he has accepted - a white lie in a good cause I hope)  and will start the new antidepressants in the middle of next week, this is so that he doesn't have too many new tablets at once.  

Pete took the first of the nerve blockers this morning - he has to take 1 today, 2 tomorrow and then 3 on Monday and every day after that.  This morning he seemed really good and didn't have as much pain as usual, but it returned this afternoon, so I'm hoping they will cover all day once he is on full dose. Fingers crossed - and everything else please!! 

The GP also said I must ring if I have any worries or concerns and if I want him to visit that will not be a problem.  Regular followers of my blog will know this is such a difference from the previous GPs, I still get blown away at the level of care we get now, I so wish I had changed a few months ago when Pete started going downhill, but there we are that is all in the past now.

I am planning on going out with the lovely ladies again tomorrow night, it is ages since we were able to meet so I am really looking forward to that.  Something to look forward to at last! 

Time Wasted!

On Monday the nurse came to check over Pete's heel and also to do the planned catheter change.  The catheter Pete had in could only be there for 4 weeks, but this new one can stay in for 12 weeks which is better, and it went very smoothly!  As for his heel, it is doing very well and they don't need to come to it again - I just have to keep a regular eye on it and put a protective cream on it for as long as I think necessary.  (Should I have any concerns I can ring the nurse and she will come out).  The only problem is that Pete is still feeling intense pain with it, it doesn't seem to ease at all but there is nothing more can be done with the actual trauma site.

Tuesday, the day of the planned visit to Plymouth Hospital, started fairly badly as far as I was concerned although Pete sees no problem.  I give him his morning tablets first thing and then just assume he has taken them - wrong!!!  He fiddled around down at his side of the bed and then eventually handed me 7 epilepsy tablets!!!  Instead of taking 2 every morning he has only been taking 1 and hiding the other one - why he decided to own up yesterday I don't know, but there we are, he has decided he is only going to take 1 each morning and short of forcing them down his throat there is nothing I can do.  He seems to have been alright for the week on that dose but will now have to keep a close eye on him.  The other thing is that he has also decided to stop taking the antidepressants, he wouldn't have one yesterday or today.  So that was all a waste of time.

We eventually set off for Plymouth but a nightmare journey ensued.  After about 15/20 minutes Pete started getting very agitated and we had to stop, the first stop of 3, and it seemed to be that his heel was painful and he wanted to go home.  Poor Martin was undecided what to do but we decided to carry on regardless.  As I said, we had to stop 3 times because he was getting upset, but on we went. 

We got to Plymouth and then tried to follow directions to Pete's sister's house - unfortunately we got lost!! This set Pete off on a mega rage and how Martin kept his temper I don't know - there was shouting and banging on the glove box - horrendous!!  Eventually we did reach Ruth and Dave but not before having to ring for further directions!!  We had time for a cup of tea there before having to leave for the hospital.  Very kindly Dave drove us to the hospital and dropped us off and then picked us up afterwards - good job too as it is huge there and parking would have been a nightmare or worse!!  Anyway, the appointment was a total waste of time - no-one appears to know why he was referred there and the consultant was a specialist in Peyronie's Disease which Pete doesn't have!  Someone, somewhere plucked that out of the air for no reason!  Anyway the consultant, who was very nice, is going to refer him back to the Barnstaple consultant urologist to investigate the urine retention problem.  So back, to stage one we go!!  Back to Ruth and Dave's for another cup of tea (and a scrumptious banana muffin, made by Ruth, and we brought some home - mainly for Robbie!) and then Pete wanted to come home.  We had an awful trip back aswell as Pete was sick a few times - I don't know why as he usually travels ok - perhaps another side effect of the stroke!??  So that was yesterday which should have been a nice day out (apart from the hospital appointment) but turned out the opposite.

Today we are back to him moaning about the heel pain - back to normal then! 

Oh, and I forgot we had a session with the psychologist on Monday which was very emotional - lots of tears, a disconcerting admission from Pete and a deal was made which may fall through!! 

Comparisons

There isn't really much to report on the last few days!  We are just trundling along at the moment dealing with Pete's heel and mood.  His heel seems to be healing slowly but surely, he takes the full wack of painkillers every day but is not complaining too much.  As for his mood, I thought perhaps he is a little bit happier but he says no!  So not too sure whether the antidepressants are kicking in or not, will have to wait and see how it goes.

On a completely different note, I have decided I am wallowing a bit too much in self- pity at the moment!!  As I have said before I find it hard at times and also feel quite lonely at times.  Today I read an article in the paper about loneliness and how some people (carers mostly) can feel isolated and lonely even though there is someone else in the house.  Having read it with great interest I now realise one of the worst things is caring for a partner who has Alzheimer's,  they are still there physically and look no different, but they are not the person they were emotionally.  They probably don't need much medical attention, so you are very much on your own.  Whereas with Pete, although his anger is something new, he is still very much the same person and fully alert mentally.  The very worst thing is that he can't talk to me and this is difficult but we sort of manage just by asking questions requiring a yes or no answer, but I really miss just having a general conversation about any random subject.  This is now totally impossible and part of what makes me feel lonely.  

Having read the article and comparing lots of different situations, it has made me realise we are not in the worst situation possible.  I also am so thankful he is still here with me (although he drives me mad at times).  People who lose their partners, either physically or emotionally, are the ones who deserve sympathy and know the true feeling of loneliness.

Anyway, there are many levels of loneliness and there is no doubt that I feel it at times, but it is something that we have to live with and deal with - at least I don't feel it for 24 hours a day every day.

Hospital Appointments

Today Pete had a hospital appointment with the stroke consultant.  He had originally discharged Pete from his care last year when he was doing so well, but when Pete was in hospital a couple of months ago he was called in to see him and it was him who diagnosed the epilepsy and said he had had some mini strokes, so this was the follow up appointment to that.  He was pleased that the epilepsy is now under control with 3 tablets and so we will continue on that regime.  He also looked at Pete's heel and said it was looking good (more about that in a minute!) but warned it will now always be a bit susceptible to any trauma and we will have to be careful in the future.  I asked him if the stroke could have affected the level of pain Pete feels and the answer was a definite yes, it can.  He can prescribe tablets that would block the nerves to a certain extent and help relieve it - but Pete was vigorously shaking his head to this suggestion which, I admit, annoyed me a bit as he can react very badly to any pain, and, to me, this seemed a good solution. But no, Pete wasn't having that!!!  It was agreed that he will mention it in his letter to the GP and, if at any time, Pete changes his mind and agrees to take them then I only have to contact the GP.  He will now see him again in 3/4 months time to keep a check on how things are going.  Incidentally, the new GP rang yesterday to see how Pete was doing with the antidepressants as it was 2 weeks since he had seen him - when I had picked myself up off the floor (!!) I said no difference yet.  We have to continue for another 2 weeks and if there is still no difference he will try another one.  The level of care is now just amazing after the previous doctors.  

So, back to the heel!!  The nurse came on Monday to check it, said it was doing really well, re-dressed it and would be back on Thursday to see him.  Unfortunately, it seemed to give a lot of pain for the rest of the day and I started getting anxious that it would cause Pete to miss today's hospital appointment, having had to cancel last week's appointment for Botox.  Yesterday morning he was still saying the pain was bad, so I did call the nurses to see if they could just pop in to check it over before today.  When she came she removed the dressing and said as it looks like it is healing very well she would leave the dressing off and just put some cream on it and a heel cup to protect it.  She also said she would arrange for the doctor to prescribe some strong painkillers to help, which she did and I picked them up today.  I have to check it morning and night, put more cream on and make sure it is not breaking down again - a bit of a responsibility but so be it.  They will come again next Monday to check it and also do a catheter change which will be due.

Pete seems to be managing with the pain at the moment, but if he creates too much I will remind him he refused tablets to block the nerves!! 

Next week, on Tuesday, he has a hospital appointment in Plymouth - hope we manage to get there alright!! 

One Year On

It is exactly one year ago today that Pete had his stroke.  It has been an emotional rollercoaster for both of us.  The year can be split into three parts.

1). Pete spent two months in hospital.  6 days in the stroke unit at North Devon District Hospital in Barnstaple, then he was transferred to The Stroke Rehabilitation Unit at Bideford Hospital.  Looking back, it was on the Monday following his stroke (which he had on the Friday) when it seems all the damage was done, he had been doing well over the weekend, moving and with a little speech.  I was told he had not had a second stroke (still not convinced on that one) but that the brain damage was just progressing, but everything seemed to go that Monday.  Whatever, no good arguing the point, massive damage was done.  Pete did well at Bideford with intense speech therapy and physiotherapy and was able to come home on 11th September.

2). When Pete came home he had speech therapy and physiotherapy every day for 6 weeks and he continued to progress well physically, not so well with communication.  Then he was handed over to the community team who were equally as good and came often.  Pete was walking around the house with the aid of a quad stick, then a normal walking stick, and even a bit without a stick at all.  He walked around outside with a quad stick and the wheelchair was only used for going out when it involved a fair bit of distance, eg supermarket, hospital appointments, etc.  He could do a bit of dusting, helped make the bed, make cups of tea, peel vegetables, cook beans on toast or a bowl of soup, heat pies for lunch.  I went back to work with no qualms and Pete managed very well.  The communication side of things was still a huge problem, but we still had hope things would one day click back into place.  For the next seven and a half months we continued on a roll (only the occasional bad day or days) and the future looked fairly set for tiny improvements all the time. 

3).  Then everything totally collapsed for some reason.  Pete started getting urine infections, was diagnosed with urine retention and a catheter put in, then he was diagnosed with epilepsy and I was told he had had further mini strokes.  He got very very miserable and depressed (tried to take his own life) and has not been able to have any therapy sessions for ages, he has not set foot outside the house for weeks, despite the fantastic weather, and I have had to give up work.  So for the last two and a half months we have both been in a very bad place, with not much enjoyment in life at all.

Where will we be this time next year? In a better place I hope.  I think we have just about given up any hope of any of the communication tools being reinstated.  One of the hardest things to deal with is that our lives have changed so much, but everyone else can carry on as usual (as they should).  It gets terribly, terribly lonely at times.

Adrian came down last night and has gone back tonight, but even that has not made much difference to Pete's mood.  I thought he would be a lot more cheerful than he has been. 

And that is the story of the first year in brief.

And On We Go!

The heel has been the cause of major fall-outs in our house!!  Although Pete didn't remove the dressing to soften the top skin, he spent most of Sunday complaining loudly about it and that it was causing pain.  He also nearly went into a melt down in front of the kids when Martin looked at it and declared it to be ok and that it had to stay on til Wednesday.  I had only managed to calm him by saying I would call the nurses on Monday if necessary.  So when he showed signs of getting angry in front of Robbie and Ella I really had to pull him up sharply.  

Monday morning dawned and I had a look at the dressing and said I would not be calling anybody as it looked to be ok and was to stay on for 5 days in order to do its job.  This provoked major anger and most of Monday was just horrible, but I was resolute that I would not call anyone.  I told him I would take 2 days of his temper as against another 5 if they came and had to redo it all.  He opted for the 5 days that a new dressing would have to stay on.  He took 2 more painkillers than he should have but I decided that was ok.

Tuesday morning dawned - at 3.30 am!!  Pete was ranting and raving about the pain and in the end he stormed off (in his wheelchair) into the sitting room and lay on the sofa.  He took 2 painkillers at the same time.  This left me wide awake and considering what the hell to do.  After much thought, I decided I would have to call the nurses, would have to cancel his hospital appointment for Botox, would cancel his speech therapy appointment, and would also pull myself back from Pete and, basically just become someone who was there to cook, clean and change catheter bags, etc.  I would get someone else to take him to hospital appointments etc.  I was finding it so difficult to be emotionally involved and having to take all the rage aimed at me and the looks of hatred that were being directed at me - it was just grinding me down and there was no one else to take any of the flak. At 8am I left a message for the nurses and then later cancelled the appointments.  I then told Pete of my decision to pull away from him as a person I cared about.  Actually I was really really horrible to him but I had reached the end of my tether.  We had also had a fight over pain killers with me having to literally force his hand open to get them off him.  He had managed to get the packet from the top cupboards - God knows how!   After a couple of hours of stoney silence and us being in separate rooms he eventually came to me and showed contrition, after I told him how I felt and how he was treating me we agreed to one more try - looking back, I think we need these major major fall outs to resolve a situation that is deteriorating badly.

To get back to his heel (!!) the nurse duly arrived and looked at it, and luckily the dressing had done its job and she was able to remove the top skin very easily, all the gunk had come out and so she cleaned it and put another dressing on it.  She will return on Thursday and told him that, in the meantime, he would have pain but it should now start to heal and he was not to do all this shouting etc.  Amazingly, today Pete has been fine, really nice to me with smiles, and has only had 4 painkillers during the day.

Today we also had the cushion to prevent pressure sores and a heel pad delivered.  Instead of a double mattress overlay, they tried to give us a single mattress!!  No, not going to work!!  So that has gone back and I told them a mattress is no good as I have nowhere to store our mattress, it has to be an overlay, and a double at that!! 

Photos today of our handsome young grandson (with attitude!) Josh, and Robbie in his new specs with his other grandad. 

Continuing Saga of the Heel!

For goodness sake, who would have guessed that the original blister on Pete's right heel would turn into such a drama!!  A week ago Thursday the nurse came, looked at it, declared it nice and clean and dry and put a foam heel cup on it to protect it.  All good so far.  Fast forward a week to last Thursday and a different nurse returned to check how it was doing - she studied it and said she really wasn't sure what to do but would put another adhesive foam pad on it and return on Monday to check it.  Then it all went belly up!  Thursday evening Pete was indicating a lot of pain in his heel again and going into melt down, wanted me to call someone etc.  he even went to the front door, opened it and started shouting.  Eventually he ripped the adhesive patch off and then calmed down a bit.  I absolutely refused to call someone out of hours as all they could do was prescribe pain killers and we already have some really strong ones which he wouldn't take, but I said if it was still the same the next morning I would ring the district nurses again - which I had to do.  One of our regular (that's bad isn't it, to have regular nurses call) nurses came and looked at it and declared that it was seeping under the skin surface so needed to be drained, and the only way she could do that was to put another dressing on it which will soften/dissolve the top layer and allow the gathering pus (yuk!!!) to escape.  It is not infected so I don't really understand what is going on.  Anyway, this dressing was put on and I emphasised to Pete that if he removes it that is up to him but I will NOT be calling anyone about it, just the nurses on Monday morning (the nurse agreed this action).  This dressing has to stay on till Wednesday when she will return to see how it is doing.  So far, so good, Pete has not touched the dressing and seems to be tolerating it with the aid of painkillers.

On the subject of pain killers, she lectured Pete (nicely) on the consequences of overdosing on paracetamol and he must take no more than 8 in 24 hours - so the dishing out of these is now in my hands!!!  She also told us that they have had meetings about Pete and how to proceed with his care.  Firstly, he is showing signs of developing pressure sores on his bum - not surprising as he sits on the sofa for about 12 hours a day - so some cream has been ordered along with a special cushion for him.  Also they have ordered a mattress overlay which has to go on the bed and her words were "I am afraid you will have to sleep on it as well as it has to be a double to cover the whole bed". It is the words 'I am afraid' that worry me, is it uncomfortable or what?!?! Will have to wait and see!!  They are also going to monitor his weight as he is down to about 9 stone when his usual weight used to be ten and a half to eleven stone.  There are also more dressings on order for him.  So, as you can imagine, I don't see the future looking too bright.

One positive thing I did on Wednesday was to order a lightweight wheelchair from Amazon (who else?!?!) as his is terribly heavy to heave in and out of the car.  The idea is that this new one will stay in the car and be used to attend hospital appointments etc.  anyway it arrived yesterday and is about half the weight but still quite sturdy, so that was quick and I am pleased with it.

Finally, a bit of family news, Robbie has been prescribed glasses to wear and has also had grommets put in his ears - so now he can see and hear much much better!  His glasses really suit him and make him look very intellectual!  Josh is now 13 and a real teenager - a handsome young man with attitude!!! As for Ella, she was a team captain at school sports day and her team won, out of 14 teams! So well done Ella, and her mum was tipped that an athletics coach had been watching her and was keeping an eye on her - so watch out for her at future Olympics!!!  The photo is of Ella with the cup they won. 

New Doctor and Psychology Session

Yesterday was the day Pete had his appointment with his new GP.  We were not kept waiting long (about 5 minutes) and were with the doctor for a good 25 minutes and we had no feeling of being rushed  - hopefully he had booked us a longer appointment and we didn't keep others waiting!!  I was armed with a list of questions (as I was before, to no avail) and each one was answered really well.  The doc had a good look at all Pete's notes and fully understood the situation.  Our main question was about the catheter and Plymouth hospital appointment, he explained all the reasons for the appointment and why the catheter had been put in, and hopefully Plymouth will be able to help, but if not then it may be prostrate problems which we will go back to him about.  Barnstaple hospital had not suggested a trial removal of the catheter and the doc said, although uncomfortable and inconvenient, he was reluctant to try a removal because if things went wrong Pete may end up in hospital again and miss the Plymouth appointment - and we don't want that!!  Pete agreed with him that it is best to wait now and see what Plymouth say.

Then on to the touchy subject of antidepressants!  I had talked to Pete about it before we went and he agreed they might help him at the moment.  The doc asked loads of questions and said that he would normally suggest counselling as a start, but that obviously wasn't going to work in Pete's case!!  So, he agreed medication would be worth a try.  He has started him on a really low dose as they may not interact well with the epilepsy tablets, but they should definitely help just to lift his mood a bit.  Any problems and he will try others.  He just has a half tablet a day and had the first one today.  

I told the doc Pete is just taking 3, not 4 as prescribed, epilepsy tablets and that seems to be controlling it, and that is fine.  Also mentioned sleeping tablet every night and lots of paracetamol - the sleeping tablets are ok as Pete has a lot to deal with at the moment and needs to sleep at night, as for the paracetamol, just try to control it a bit and not let it get out of hand as can cause liver damage.  So, satisfaction after that appointment.

Today, Bev came along with a Clinical Psychologist, just to talk to Pete and get a handle on his feelings at the moment.  She talked about the antidepressants as Pete now doesn't seem keen on them, but as she said, we all take different tablets for different things and these are no different.  He has not failed in any way - she said that if I had been prescribed them would he want me to take them? He answered yes, so has to see why I want him to take them!  She had a really good deep chat with Pete about all that has happened since the stroke, all the ups and downs we have faced, and are still facing.  It got a bit emotional at times, but she said we are allowed to cry. 

And that has been the action in the last couple of days!  Pete has seemed a bit brighter over the last few days, but still experiencing lots of pain which takes him down at times.  This evening he has been low but not too bad.

Here's hoping he will continue with the antidepressants which will take a couple of weeks to kick in.