Conclusion

I think this blog has now reached its conclusion.  

It is nearly 2 years since Pete had his stroke and, far from moving forward, he is now worse than when he first came home from hospital - with no indication that things will ever improve now.  

I started the blog with high hopes and with plenty to say about the situation, but now every day is the same and I have nothing to say.

I am a 24/7 carer, the only breaks being one and a half hour to go shopping in town once a week and about one hour a week at tesco and/or the Co Op.

I did think things would be better once I could drive and we could go out, but that was wishful thinking as Pete refuses to leave the house except for appointments - he won't even go for a walk around the garden, never mind a drive.

The aphasia is as severe as ever and his mobility has deteriorated.  He has a permanent catheter and also epilepsy (fortunately kep under control at present).  

What else is there to say? Nothing.

So, I'm thinking, That's All Folks.  

Physiotherapy, Dentist and Winning.

One day earlier in the week (can't remember which day) Pete tried to go outside but came to grief on the step in that his right foot kept turning in and he nearly fell.  This put him right off and he wouldn't go out.  I have also noticed that when he walks he doesn't bend his right leg at all, so we decided to go back to the very beginning and do some of the physiotherapy leg exercises that he used to do.  They really seem to hurt him but this is probably because he hadn't used the muscles for weeks and weeks.  So we will persevere with them and try to get the leg working a bit better. 

Yesterday was the trip to the dentist again and Pete had to have a tooth out and have a filling.  For the first time he had to transfer to the dentist chair, but we did manage it fairly easily. It all went well and he doesn't seem to have had any after effects apart from a sore jaw.  I did tell the dentist that he had aphasia and got a very puzzled look in return!  So had to explain he has no speech but can understand everything - I don't like saying he has no speech as it always seems to emphasise the fact to him.  We have had a couple of times this week when Pete has desperately wanted to say something to me and I have not been able to get what he wants to say - this is so frustrating and I feel so sorry for him.  Incidentally, on the visit to the dentist I did manage to find a dropped kerb after walking the full length of the pavement and turning the corner - and there it was!! 

One bright spot this week is that I won a copy of a book called 'Locked In'.  It is written by Richard Marsh and describes his struggle, and eventual release, from locked in syndrome.  I am really looking forward to reading it.  I won it in a competition run by Chris Banting who has a website which gives details of all aspects of strokes.  (www.mystroke.co.uk) Chris is an amazing young man who had 2 strokes four years ago when he was only 29.  Through a lot of very hard work and effort he is making a recovery and does loads to help others.  Inspiration indeed. 

Addiction

Addiction - a very sensitive subject.  I thought a lot about whether or not I would write this post about Pete's addiction to some of the medication he takes - it has caused me much worry and puts me in a dilemma as to whether or not to support him.  I feel incredibly guilty that I have let the situation occur and, in fact, have helped him feed the addictions.  It is very hard to admit this.  

The main problem is that Pete has a very low tolerance of pain and suffers from dysthesia (that may be the wrong word, I can't remember!) which is abnormal and heightened sensitivity.  During a particularly bad period of pain the GP prescribed some oral morphine - and he is still having it!  He is actually allowed 8 spoonfuls a day, but I never ever told him this and have only ever given him one spoon in the morning and another late afternoon - he thinks this is the maximum dose he can have.  He insists he have it, although he doesn't need it really, but for a quiet life and to keep him happy I administer it!!  The other thing he doesn't know is that I have been watering it down for several weeks, and he hasn't noticed, so rather proves my point he doesn't really need it!  

The other medication he insists on having every day, regardless, is the codeine/paracetamol painkillers.  He has been gradually taking more each day to the point where his regular prescription runs out well before the month is up.  I have aided this addiction in that I then buy more but that is getting increasingly difficult as they don't just sell them willy-nilly.  On Monday I picked up his prescription and, by then, he was taking 9 a day - I know, I know, not good by any stretch of the imagination.!   I really had got extremely worried by then so gave him a right lecture and told him he was going to run out of them in 10 days and that then he would be on his own dealing with having NO painkillers apart from regular paracetamol as I was unable, and unwilling, to get any more for the following 20 days.  He really didn't seem bothered about what I said but must have thought about it as yesterday and today he has cut it right back to 4 a day!  Again proving my point that he doesn't really need them.  He has been miserable and bad tempered for these 2 days but that is what I would expect when he suddenly more than halves what he has been having.

His third addiction, which doesn't concern me as much, is that he has to have a sleeping tablet every night.  Won't even try to sleep without it, but I am happy to go along with it as it is pretty miserable not being able to sleep - time drags enough for him I think. 

His final addiction - which I am quite happy to feed - is for a bar of Turkish delight every evening!! 

Anyway, as I said, I have tremendous feelings of guilt in supporting these addictions and find it very hard to admit that I do, but I really hate seeing him in pain, even if it is all in his head! So, judge me as you will, but I wonder what others would do. I do all I can to make his life easier and more bearable, sometimes by doing the wrong thing I know. 

This has probably been one of the hardest blogs to write - it's not easy to admit you haven't done the right thing, but actually I feel better for really admitting and writing about the problem. 

First Catheter Change

Today Pete had to go back to the hospital for the first change of the suprapubic catheter.  It is 8 weeks since it was put in.  I was a bit nervous about how it would go and I think Pete was aswell as he didn't have any breakfast - I really wish he could tell me how he feels sometimes.  However it all went very smoothly and he doesn't seem to have any after effects apart from asking for more painkillers than usual as it was obviously a bit sore around the entry site.  The nurse was pleased with the site and said we don't need to keep a dressing on any more as it is nice and clean.  All further changes (every 12 weeks) can now be done by the district nurses.  I have to mention that since having it inserted Pete hasn't had any urine infections so that is a definite improvement.

Whilst Pete was having his catheter changed Mel (our daughter in law and also one of the Lovely Ladies) was taking her driving test and I am so pleased to say she passed on her first test. So the number of drivers in our family has trebled in the last month!!!  I am sure Martin is relieved as we won't have to rely on him too much in future!  Mind you, he has promised to take me out tomorrow evening so that we can nail this parking in a car park business! 

This evening Pete dropped a glass and, unfortunately, it smashed.  He gets very upset if anything like that happens - whereas pre-stroke he would have just cleaned it up and shrugged his shoulders, now it turns into something major.  I have to calm him down and assure him that it isn't a problem and accidents happen to everyone, but he finds it hard.  

Another one of the Lovely Ladies lost a dear friend of hers today, sadly to a brain tumour, but it did emphasise to me how lucky I am that I still have Pete. Not exactly the same person as before but still my soulmate. 

So I need to count my blessings when I get depressed and not feel so sorry for myself.

Another week gone

Time seems to be passing very quickly at the moment - I don't know why, but the weeks are flying by.

Pete hasn't been too bad apart from having toothache over the weekend which brought him down again, also hasn't helped his weight much as he hasn't really been eating until today.  I had to take him to the dentist on Monday which was the first time I had taken him anywhere on my own! I worried all day (appointment was at 3.20pm) about parking but Martin assured me there was space there and I would be alright.  It turned out half alright!!! I found the parking but didn't get in properly first go so had to have another try, meanwhile Pete was getting agitated as to where I was going, so I got very tense and ended up straddling 2 spaces and decided that as there was loads of room and I wasn't in anyone's way that was where I was going to stay - much to Pete's disgust and he was having a full scale strop, not quite a rage but getting there!!!!  Anyway the dentist (who has moved since our last visit) assured me they were still wheelchair friendly and, indeed, they were - the only problem being the fact there was no dropped kerb anywhere near, in fact not at all the whole length of the pavement which proved a bit of a problem but I managed in the end after much huffing and puffing and brute force!! The end result of the visit was that Pete has an infection and then needs the tooth out.  Antibiotics were prescribed and another appointment arranged but, unfortunately, that isn't until 11th June. Not looking forward to that!!! 

Pete had also come with us to Lidl last week and seemed ok with my driving apart from the fact I didn't park in disabled spaces!! Not enough room!!  I think I may have to have a lesson on how to whizz in and out of parking spaces like everyone else! Or else I can sit in a car park and watch everyone!!  It's all very stressful! 

Last Saturday was a brilliant day for me although Pete spent most of it on the bed.  My sister came up for the day and I picked her up from the station and, amazingly, I did park ok there!!  I always love seeing her as it's non-stop conversation with no effort.  Then in the evening it was out with the Lovely Ladies for our regular gossip and catch up, we went to a fish & chip restaurant and it was delicious!  Huge portions and, although we looked at the dessert menu, all decided any more and we would be sick!! Anyway a great day for me.

Yesterday Rebecca from the Stroke Association rang to see how we were doing and to say they were thinking of doing another series of sessions for carers of people with aphasia.  I reiterated how helpful this had been to me and she is hopeful she may be able to feed people to us after it finishes which would be so good. 

So there we are, another week gone and another bank holiday looming. Time flies! 

Two Weeks Later!!

No blog for 2 weeks mainly because I didn't think there was anything happening, but making notes earlier there are a few things to say!! 

Pete had his regular 3 Botox injections today, so we are hoping there will be a bit of relief for him with his right arm.  It doesn't make a huge difference any more but does release his muscles a bit, especially in his hand which gets really clenched up.  Also he has made a lot of progress with the jigsaws he does on his ipad - he is now up to 81 pieces and can do them in about 30 minutes.  It probably doesn't sound like much to you but, believe me, for him to solve a puzzle with 81 pieces in a half hour is a major achievement plus it gives him a sense of achievement which is very important.  The ipad is brilliant for doing jigsaws as he can choose himself which one to do and can choose how many pieces plus no pieces are ever missing or end up on the floor!!!  We have to buy the categories but each category costs about £1.50 and gives a choice of about 40 puzzles which I think is VERY good value as where can you buy a proper one for £1.50, never mind 40!!  And each one can be done as many times as you like with your choice of number of pieces.  

We have also started doing sounds again which is good as it was his choice to get back to it.

The only downer for Pete has been that we had to get rid of the car he had in the garage which was going to be his retirement project.  It was a Rover 820 which we have had since new (early 1990's) and, after serving us well for several years, it started to need a lot of work doing on it so Pete took it off the road and put it into the garage for him to do up when he retired.  It has been there for 8 years!!! Unfortunately, there is now no way Pete can work on it so the decision was made to get rid of it.  Pete's brother and his mate kindly came over and managed to get it out of the garage, even getting it started which was amazing.  It still looked really good but, last Wednesday, we sent it on its way.  It was a sad day as was a source of many happy memories and also emphasised to Pete that he couldn't do what he wanted any more.

Last week I also had a phone call from another carer asking to meet up - so I met her for a drink on Friday - we can't meet at home as both Pete and her husband hate to hear us talk about them!  They both know why we meet but Pete gets very angry when I talk about him (unless it is good things of course) and she says her husband is the same.  Anyway it was a relief to talk to someone who knows exactly how it is and we both offloaded and felt much better.  I am so glad she is there at the end of the phone and we both agreed that we will meet when either one of us feels the need.  It makes such a difference to know someone else is going through the same as often you feel you are entirely alone - and as I have said before, there are things you can only say to someone who knows!! 

I have been out driving a bit with Martin and also been out on my own - but definitely need to get out on my own more often. Getting from A to B is ok, but parking in a car park is still a tad tricky!!  I need at least 3 spaces (to get in the middle one), 5 spaces is better and 7 or more is ideal!!!  Need to nail this as soon as possible!  Pete hasn't been out with me yet - he is still a bit nervous yet I think but I have told him he WILL come out with me soon!!! 

Very Good News

I passed my driving test!!!!  Oh yes!!!  

Today has been the best day for a very long time.  I took my driving test and was quite prepared for a fail but, no, I actually passed!  Not bad for a 61 year old methinks!  And to pass first time - I feel pretty bloody pleased with myself.  It's something I never thought I would do, I was always quite happy to have my own chauffeur and never dreamt circumstances would dictate I needed to do it, but, so be it, life dished the dirty and forced my hand.  

I have been out with Martin (who was probably shaking in his shoes!) tonight and he said I was alright and he felt quite relaxed by the end.  I have to thank Martin for the time he has given to me practising manoeuvres.  The manoeuvre I was dreading was reverse parking in a bay - and, sure enough, that's the one I got!! But miracle of miracles I got it perfect first time.  

This is going to make such a difference to Pete and I, we will be able to go out when we want, and hopefully this will make him want to go out.  I am going to do a few more outings with Martin and then take Pete - he has promised he won't get a rage on and will keep quiet!!!  You never know Adrian, one day we may rock up in Bristol - but not for a while yet!!! 

And that's it, I am still smiling to myself and have been all day!  The tears flowed from Pete when I came home and showed him my pass certificate! 

Wheeeeeee, North Devon here I come!!! 

As Good As It's Going To Get

No blog for over a week - this is because nothing at all has changed or happened worth posting about.  I think we have now reached the stage of 'this is as good as it is going to get'.  Pete makes no improvement at all, and hasn't now for some time.  He doesn't want to do the writing and trying to make words from sounds any more.  The only good thing is that, at least he is not going backwards.  He walks round the house with his quad stick and helps lay the table for a meal, but nothing else.  Each day is the same for him, he never wants to go out anywhere or do anything.  We get up some time between 9 and 9.30, have breakfast and then he either listens to music, plays Angry Birds on the ipad or does jigsaws (49 pieces) on the ipad.  Lunch is at 12 and then Pete goes on the bed at 1pm for a sleep.  He gets up again between 2.30 and 3 and watches tv. Tea is between 4.30 and 5 and then Pete is off to the bed again at 5.30. until 7 and then watches tv in the sitting room until between 8.30 and 9 when he goes to bed, he likes to be settled in bed by 9 and he watches tv. I usually go to bed between 10 and 10.30 and then we watch tv until 11 when he settles down for the night.  So, as you can see, every day is very regimented and always the same.  Pete likes to do everything at the same time every day, the only changes he makes is if I have to go out and then he goes on the bed again!!!  If I have to go out then I try to go whilst he is having his afternoon rest and be back by the time he wakes again, but sometimes things occur when I have to be out at different times.

Life certainly isn't a bowl of cherries but I think I now have to get used to this regime and, to be honest, I can deal with life as it is as long as Pete doesn't get any infections or anything to disrupt the routine.  I do, obviously, get very down at times and still, at times, embark on crying jags!!!! But not so much now!! 

So there you are, that is our life now and probably how it will continue for the foreseeable future.

I will continue to blog about my life as a carer of a stroke survivor and any progress made, but not so often - otherwise everyone will get very bored with the same old thing!! 

Not Impossible - Just Inexplicable!!

The district nurse came in yesterday with a supply of flip-flows(!!!) and to check Pete's op site.  I explained to her what had happened on Friday, expecting her to totally disbelieve me, but, no, apparently it can happen but she doesn't really know how or why.  She said if the entrance site is a tight fit and the catheter is shut off then it will find another exit.  I fully accepted and understood this - but, thinking about it later, it still isn't really the explanation as the bladder had not filled to the extent it needed to find another way out.  So, there we go, I still find it inexplicable and have no idea what was going on.  However, she said if Pete is more comfortable using the continuous flow leg bag then it is best to carry on with that and it won't be a problem.  I just have to explain at the hospital, when they do the first catheter change, that we did try it and it didn't work.  She also checked the site and it is looking nice and clean and doing fine.  She left some dressings to be changed weekly (although it has to be checked daily to make sure there is no infection or discharge).  So all is well again.  When Pete has the catheter changed after 8 weeks the hospital may want it left open - we just have to wait and see what they say.

Other than that, Pete continues as usual.

Epic Fail!!!

The infamous flip-flow has turned out to be an epic failure!!   But more on that in a while.

First, an update on how the week has gone.  Not well - just for a change!  As I said in my last blog, the nurse came Monday and dressed the op site, she put on a special small ring under the gauze which would help it heal and it was to be left on a week if possible, just changing the gauze on top.  Well, 6.15am Tuesday morning Pete woke me and showed me he had removed the whole dressing!! Why? Your guess is as good as mine!  Anyway I put another one on (she only left me 2 as that was all she had, they being samples which were very expensive) but by Wednesday Pete wanted it changed again and had taken the gauze off.  I explained it had to stay on as long as possible which he then accepted.  But he was also doing a lot of moving the actual catheter tube around, so, another lecture from me, telling him to leave it alone!  I said that if you put something through a hole and then keep moving it around, then the hole will just get bigger (think sticking a cane in soil and moving it round and round) and more painful.  Again, I think he accepted that and indeed, during the morning, went and got a pair of gardening gloves out of a drawer and put the left one on.  There was no way I knew what the hell he was trying to tell me - putting on one gardening glove quite randomly!!  His next move was to go and lie on the bed and close his eyes as if he was asleep so I guessed he wanted to wear it at night!  I can only assume this is to stop himself moving the catheter tube around in his sleep as it is difficult to get hold of with glove on.  It would be quite funny if it wasn't so sad.  That seems to have done the trick though as he has left it alone since.  The wound still seems to give him a lot of pain at times - he can be fine then moves slightly and that sets it off.  We try and keep it under control with painkillers.

One big improvement is that Pete has stopped using the wheelchair all the time and is back to walking around with his stick which is a relief as I thought he had decided the wheelchair was going to be his way of getting around for ever. 

So ..... the flip-flow!!  Today was the day it had to be put in and Pete seemed quite happy with this although I was a bit worried about it.  After a false start when I put it in upside down we got it in the right way and all was well.  I put it in at 9.30am and said he needed to empty it at about 10.30/11, yep, fine.  Now you have to bear in mind that the nurse told me that if it wasn't emptied then the bladder would fill and overflow through the op wound, being the only exit point other than the catheter, but this would not be a major problem as would just need to empty it and wash it around.  At 11am Pete went to open the flip-flow and empty his bladder - I went aswell to try and judge how much had gathered and how often it would need to be emptied.  All that came out was a tiny dribble, and his trousers were wet.  My first thought was that his bladder had filled and overflowed but ... In one and a half hours??? 

So onto the bed to see what was going on.  His boxers and trousers were indeed wet around the crutch area but the op site was dry!  So, not from there then, check the connection and that was also dry - what??  The only place it could have come from is the natural exit!!!!  But how does that happen?? We decided to attach a new leg bag and see what happened - that was perfectly alright, flowing into the bag continuously as normal.  I am now totally puzzled and I know the nurse is going to tell me that what happened is impossible!!  How come the catheter is in and the urine flows freely into a leg bag, but shut that off and it flows out of the natural exit????  It makes no sense at all.  My mind boggles trying to figure it out!!! 

As I said - epic fail!!!  Will wait and see what nurse says next week, although I already know - impossible! 

After Care

Following the op last Thursday, on Friday Pete was doing very well - he didn't seem to have any excessive pain and was quite happy.  However, that didn't last!!  By Saturday he started to go downhill and was in a lot of pain at the actual site of the op.  I looked at it and realised no one had given me any instructions on changing the dressing or anything.  I should have asked but got so involved with the flip-flow that I totally forgot - and the flip-flow is also another story that I will come to in a bit!  

I had a chat with The Oracle (my sister) and she advised I ring the district nurses for advice as there was no way the original dressing should stay on for 8-10 weeks which is when his next appointment should be.  She wasn't sure about the flip-flow and reasons for suddenly wanting that to be used.

The dressing seemed to be blood soaked and was starting to roll off a tiny bit by Sunday but I didn't dare touch it.  

This morning I rang the District Nurses and she said she would visit and change it and check it over.  She was here by 10am and was horrified that no one had told me what to do with the dressing.  She took it off and cleaned the wound (which is a tiny cut about half an inch long - bit like a stab wound, not that I've ever seen a stab wound, only on TV!!!!) and it is looking a bit red and angry, but she wasn't sure if it was just inflamed or is infected.  I have to watch it and if it gets redder or spreads to ring the GP for antibiotics. She showed me how to dress it when necessary and left some dressings.  She was also startled when I said he has to use the flip-flow, she couldn't understand this as he has been on continuous flow for 11 months and his bladder will have lost sensation and be like a deflated balloon!  We agreed the best course will be for Pete to empty it regularly - say every hour to start with, and then build the time up as he gets more used to it.  She said it would be fine to still connect the night bags and leave it open as we don't want to be getting up (means a lot of effort for Pete) regularly throughout the night - so that is the plan!!  The hospital gave me one flip-flow so I assumed that would stay on until he goes back BUT .... It has to be changed every week, just like the leg bags were!!!  I am so glad I mentioned it to her as hadn't really planned to.  She decided she will come in next week to check the wound and furnish me with a supply of flip-flows and, thereafter, I can get them on prescription.  So there we go - perhaps the hospital weren't as brilliant as I thought they were! 

I nearly cancelled going out Saturday evening but decided I really needed to get away for a while and Martin could ring me if he needed me.  I had a great evening with the Lovely Ladies with the usual gossip and laughter! 

And on we go - hopefully the pain will start easing soon for Pete and we can get back to the usual routine.

Operation Done!!

Well, actually, not an operation just a minor procedure - but a bit of exaggeration works for me!! 

Anyway the suprapubic catheter is now in place and, hopefully, Pete will be much more comfortable in future.

The day went exceptionally well, with no histrionics or anything from Pete.  We had to be there for 10am and went straight through into the ward.  I was allowed to be with him all the time (well, all except for when he went into theatre, obviously!!) which was good although we had to have the curtains round as it was the mens ward and females weren't usually allowed that far in.  They started on paperwork more or less straight away and then took his temperature and blood pressure and then he got changed into the very attractive gown (I'm sure you have all seen them) and onto the bed.  They had said he was last on the list and it may be about one and a half to two hours before he went into theatre.  But Pete seemed ok with this and then promptly went to sleep so that helped the time pass for him.  By the time he got on the bed it was about 10.40am so I settled in for a long wait, but the surgeons came in about 11.10am and he went in about 10 minutes later - so not long at all in the end.  I came home and got a call at 12.20pm to say he was back on the ward and was fine but the surgeons wanted him to stay for two hours so he couldn't go until 2pm, but I was welcome to go back and sit with him.  So back I went and he was dressed and drinking a cup of tea.  He then dozed off and on again until it was time to come home, and everything has been fine.  He has not complained of any pain and seems quite happy.   I have to remove the leg bag after one week and insert a 'flip flow' into the tube, this means he will let his bladder fill as normal and just flip the 'switch' to empty it down the toilet.  I'm not so sure about this as he has had a continuous flow catheter to make sure his bladder empties properly - I may have to consult the oracle (my sister!!) about this.  But it will be nice to be rid of the leg and night bags.

I am so glad today is over as it has been on my mind for days and I have worried about it endlessly.  Pete has not really shown me how he felt but I am sure he has also worried about it.

Once again I have to say the staff were fabulous on the Day Surgery Unit, their patience was endless and they kept popping in to keep Pete up to date with the situation and to make sure he was alright.  They were very professional but very friendly at the same time.  As an extra bonus one of the nurses on the Unit used to work on the ward I worked on, so a familiar face was welcome and we had a good chat and laugh, she always had a smile on her face and hasn't changed at all.

I'm out with the Lovely Ladies tomorrow evening - looking forward to that.

Insular World

I now live in a very insular world!  Every week is the same, day in and day out.  Pete seems stuck in limbo still - the only thing different is that next week he goes in to have the suprapubic catheter inserted.  This is a worry, we have to be there at 10am but don't know what time he is scheduled to have the procedure.  However .... hopefully I will get a bit of inside information as to where he is on the list so will have some sort of idea how long he will have to hang around, but if it is too long then it probably won't happen.  We will see.  

Anyway, back to my world - it has shrunk beyond belief really.  Everything centres around Pete and what he wants and needs.  I hardly see anyone now whereas when I worked I met so many people and talked about everything and anything - what was going on in the world, etc etc. I also knew all the ins and outs and ups and downs of people's lives.  I couldn't imagine living without buying a newspaper every day - now I only buy one on Saturdays and that is only for the TV magazine!  Nothing now is of any particular interest to me - it's very hard to explain why, but my priorities are Pete, Pete and Pete. Of course there are certain news stories that are of interest but whereas before I would follow events avidly and read all interviews etc., now I just see the news twice a day and that is it.  Pete and I used to discuss all the world events - sometimes we had quite animated discussions about some politics!  We had to agree to disagree on a few subjects!  But that is all gone - I suppose this is part of why I am not interested any more, because there is no one to talk to anything about. 

So there it is, that is my world now.  Having said that, I am very much looking forward to next Saturday as it is another Lovely Ladies evening - we haven't been out for ages and, boy, do I need it!! 

Support

Support is so very important.  Anyone in our situation needs support of all different kinds - and I think, at last, I have got it all covered now as far as I am concerned.  Unfortunately, I can't say the same for Pete - but the question is, what support does he need?  Ideally, he needs the support of someone the same as he is, but that wouldn't work as he can't communicate his feelings or thoughts and someone who is the same wouldn't be able to either!  I think he should have continued with his psychology sessions but he always told her he was fine so they stopped.  He is always so terribly sad - and who can blame him.  I know I keep saying it, but I do now think he needs a higher dose of antidepressants, but he says no.  So we still go on in limbo as far as he is concerned.

My support network is now complete - it took a long time but there you go.  Of course we both have the support of our family who are always there for us and they are vitally important to us.  I also have the Lovely Ladies who I go out for a meal and drink with every couple of months and they also come round individually to see me and keep me up to date with what is going on in the world, and I can relax and have a good gossip and laugh with them - again important.  Finally, I now have other carers to talk to.  Last Friday was the first informal meeting we had and, unfortunately, only two of us were able to be there but, no worries, we had a really good chat and talk and, indeed, talked about a couple of subjects that had not been mentioned in the previous meetings with professionals.  I came home feeling uplifted again and able to go on again.  We haven't made a definite date for our next meeting but agreed we would text each other when we felt we needed to talk and we would meet up.  I have been thinking about it and I think we perhaps should make a definite date as then if anyone else wants to join us they can and they will know where to be and when.  But, just knowing I can ring someone at any time is a good.  There must be so many people out there who need to talk but know no-one in the same situation.  So, carers for people with aphasia ..... Get in touch! 

I will finish as I started, support is so very, very, very important.  

In Limbo

No blog for a week as I have still been feeling so low - don't want to do anything or see anybody!  But on Tuesday one of the lovely ladies texted to see if she could come over, my initial reaction was No, but then I made up my mind that if I carried on feeling sorry for myself then things never would get any better so replied for her to come today - and now I am so glad I did.  Ashton came over with Lady (her springer, who spent the entire time dozing off on the sofa!!) and it did me the world of good to chat and gossip (!!) with her, she is a lovely young lady about 35 years younger than me but we really get on, we always worked well together and she, along with the other 2 lovely ladies, support me no end.  

Having decided to see Ashton, then another old workmate rang yesterday and said she would like to pop in this morning for a coffee and a chat - so having decided to pull myself together, we arranged a time for her to come.  I haven't seen her for about 4/5 years so lots to catch up on and gossip (!!!!) about. 

Therefore, today has been a really good one for me and I now feel so much better and have concluded I must not let myself slide right down like that again - it's up to me to sort myself out.  

Meanwhile, Pete seems to be in limbo, if not sliding backwards.  Although he can now get his leg up enough to get his trousers on, he is using the w/chair almost all the time, only using his stick for the few steps from his chair to the table.  He is back to how he was when he first came home from hospital, only on a lot more medication and not anywhere near as positive as he was then.  So that is not good.

I think I did mention previously that we had applied for a reduction in council tax because Pete uses a w/chair in the house - well, we heard yesterday that they have approved it and have also back-dated it to September 2012 when he came home.  Positive outcome.  But, perhaps stupidly, I wonder whether fate decided that if we have the reduction then the wheelchair must be used more often!!! 

I am still scared and worried for the future but I do feel more able to cope at the moment.

Almost there - but not quite!

Pete is almost back to normal now, but not quite.  

On Sunday Pete had to make a very determined effort to help himself as my back decided to register its disapproval of what I was doing!!  I ended up on full quota of painkillers aswell as Pete!  Anyway, during the day he managed to sit himself up and also pull himself up the bed.  By Monday he was able to get out of bed ok, sit up ok, pull himself up the bed, transfer from bed/wheelchair etc.  The only thing he still couldn't do, and still can't today, is get his right leg off the floor enough to get his trousers on so I have to help with that which is fine.  The other thing is that he still can't walk much and is still insisting on using the wheelchair to get from room to room.  No doubt this will improve with a little bit of a push each day.  

I have been in a very bad place for the last couple of days - it just sometimes seems such a battle to just get through each day, and what the future holds is anyone's guess.  Unfortunately I can't seem to foresee anything improving much.  It is hard to believe that this time last year Pete was doing so well that I was preparing to return to work.  It is now about 20 months since the stroke and things went really well for about 10 months but then the following 10 months have just been absolute hell for both of us. 

I am trying very hard to get my head together again and move on and it seems ridiculous to be feeling so low when Pete is getting better, but that just seems to be the way I feel.  The future really scares me at the moment.

Infections!

We are now one week on from when Pete started being quite poorly and, I have to say, at times I did wonder whether he would ever get out of bed again, but, thankfully, although by no means back to normal, Pete does seem to be improving a bit.  

I rang the surgery on Tuesday for advice and they said they would get a doctor to visit on Wednesday as then he had done 3 days on antibiotics and should be getting over it.  Luckily it was his own GP that came on Wednesday (I was a bit concerned that it would be a random one unaware of his full history) and after examining Pete he said he had a chest infection aswell and the two combined had just knocked him for six.  He changed the antibiotics and said I should notice a difference in 24/36 hours but if he was no better, or getting worse, to ring again on Friday.  He did start to make slight improvement in that he started eating again and wasn't quite so unsteady but he still couldn't pull himself up.  Yesterday (Friday) Pete did manage to sit up on the side of the bed to eat and also was able to transfer to the wheelchair/toilet/bed much more easily, however he still had to be pulled up and propped up in the bed.  

Today he still can't get himself up but I think it is something to do with his right leg causing him a lot of pain.  He can't walk with the quad stick but has to use the wheelchair to get to the bathroom which isn't too good.  This afternoon he did come to sit in the sitting room for 3 hours which is the first time he has left his bed (other than bathroom trips) for a week.  I think he is getting better but the big problem is that right leg - the trouble is that the muscles are wasting and contracting through lack of use over the last few months and so he finds it increasingly difficult to move it.

Hopefully Pete will now continue to improve but if he still has problems pulling himself up I will ring the doctor again on Monday.

On the up side, he has now mastered the art of using my name when he wants me and has to shout for me!!!! 

And Again

And again Pete has a raging urine infection.  On Friday and Saturday he wasn't himself and lay on the bed for most of the time although he did get up, get washed and dressed and came into the sitting room for meals and to watch tv.  On Sunday morning though he couldn't even sit up by himself, never mind get up.  He seemed very weak and I literally had to pull him into a sitting position by getting my arms under his armpits, and hauling him up the bed, not easy when it is 9 stone of dead weight.  He then tended to lean to the right and had to be pulled upright.  But then he got hotter and after finding he had a very high temperature I rang the out of hours service for advice.  They said he had an infection and prescribed antibiotics which we started straight away.  On Monday he seemed no better apart from his temperature had gone down and he still needed to be pushed and pulled up the bed.  His urine is very very dark.  I told him to drink lots of water to flush it all through - which he did, and the colour got lighter, but this morning it is back to how it was.  He still can't sit himself up or move up the bed so I have had to put two large cushions behind him to prop him up as I physically can't do it any more - my arms feel like they have been pulled out of their sockets!! 

We are on the third day of antibiotics so I am hoping there will be a bit of improvement soon, but if not then I will have to ring his GP.  

He has now been in bed for 3 days which is worrying in itself.  He can't sit himself up, move on his own or stand up so I am very concerned.  But, and this is the thing, at what point do I call a doctor? I hate being here on my own with him and not having anyone to discuss it with and get their opinion on what I should do.  Sounds pathetic doesn't it that I can't make decisions on my own. Is it all part of the infection or is there some other reason his right side seems to have seized up?  

I am just spending the days drinking coffee/tea, smoking and worrying.  

The outlook doesn't seem good at the moment.

Meetings for Carers

We had the final meeting of carers last night.  As I have said before, we find great solace at these meetings and I have also said I would like them to continue.  Well, they are going to!!! Yessss!   The two ladies who have been running it did suggest we could continue on our own, informally, and we agreed we would like to.  I know I am repeating myself, but just to be able to talk honestly is the best feeling, and to find others feel the same is a great relief.  Although it doesn't absolve our feelings of guilt, etc at how we feel - we all feel the same and we are allowed to have these feelings.

Anyway, we are going to meet up monthly and the first get together will be on 21st March.  There will be no formality about it, no set agendas etc. just some carers having a chat.  Rebecca and Bev are going to pass the word around and, hopefully, some other carers of people with aphasia will join us.  I know if there had been anything like this several months ago I would have been there like a shot.  Just to meet others struggling like me. 

I don't know the people who read my blog but if, like us, you care for someone with aphasia, or know anyone who does, and can get to Barnstaple, then please get in touch and we will welcome you with open arms.  Anyone who is interested can email me at shirleypdutt@gmail.com or contact me on Twitter @ShirleyDutt  and I will gladly give you details.  There must be more than the 3 or 4 of us that have been at the Wednesday meetings.  Now that we have got this organised there is no need for people to struggle on their own like we all have been doing.  I really hope more people can come.  The meetings will be in the evenings.

Meanwhile, things continue here as before.  We are actually making progress with the writing and speech that we are doing.  Pete can now write several family names with only a few hiccups on the way, just the odd letter here and there are still problematical.  Illogically, it is not often the same letter each time.  But a few months ago Pete couldn't write any names on his own (other than his own name which he has always been able to write). We also do a few other 2, 3 or 4 letter words and they are all improving.  So, although it is sometimes a bit of a tedious chore, it is well worth it.  Speech is another matter though in that we have been unable to incorporate any new sounds, but every day we go through all the sounds and words he can say - the day he actually then uses them will be amazing.  He has, once, called for me by my name but has not done it again.  But I think this shows we are, slowly, getting a few connections in his brain.  It can only get better! 

One tiny step at a time is indeed what is happening.  

I will just reiterate that PLEASE, if you care for someone with aphasia and are struggling with the life cards you have been dealt, GET IN TOUCH.  We can all help each other. 

Procedure Booked!

Well, the pre-op assessment went ahead!  They were very good and understanding of the situation and the procedure to insert the suprapubic catheter will happen on 3rd April.  They did say they could book a date in March but it would probably be cancelled but April dates should be ok, so fingers crossed it goes ahead on that date.  I explained that Pete is unable to control his emotions and would not be able to wait too long before getting very angry and I would have to take him home, and she fully understood this and explained it to the booking office, she did ask for a first appointment but we have been given 10.00am as the time to be there - so will see how long we wait.  When we went in the nurse told us she had weighed Pete's notes, just for interest, and they weigh 4kg!  Quite hefty now!!! 

The carers' meeting went ahead again on Wednesday and, unfortunately, it was the penultimate one.  I am still thinking of mentioning us meeting up perhaps monthly or something as I think we are all finding great solace there.  Just to be able to talk and know we all feel the same means a lot.  There is no-one else that we can ever talk to so honestly and say how it is and how we feel. 

Yesterday my sister came up for the day and it is quite a trek at the moment as she has to get on a coach for part of the journey as the railway line at Dawlish was washed away!!  We had a brilliant time just talking - her daughter gets married in July and it was great to hear all about the wedding preparations.  I don't know whether Pete will go or not, he wants to but I don't know whether he would be able to stand such a long day and the journey there and back.  He gets very tired easily now and hasn't got much stamina.  Again, it is just a case of wait and see what he is like nearer the day.  Yesterday, whilst Wendy was here he was very anti-social and went on the bed!  But, there again, he spends most afternoons there now just having a rest and snooze.  

Meanwhile we just go on as usual - every day more or less the same, Pete no better and no worse and me just getting on with it, as I have to!  

Oh yes, and we have had a letter from the GP confirming Pete uses the wheelchair in the house and so I am hopeful we may get a reduction in council tax, but it is by no means certain.

Anxiety

I know it is a very common complaint but it seems that I, along with loads of others, suffer from anxiety which is affecting my health.  This is probably the cause of my headaches and often feeling sick.  I had to attend a clinic at the surgery last Friday and had to answer lots of questions about how I feel - I can't really remember them but I do remember the last one being 'do you have a feeling of dread that something really bad will happen?' - the answer was yes!  It was suggested that I ring some stress/anxiety counsellors, but what can anyone do?  The fact is that I worry continually about Pete and no amount of counselling is going to remove that worry.  The only time he is not on my mind is when I am asleep!  So, I am sure we all now feel much better that I know I have a high level of anxiety!!! 

But what to do about it? Nothing I am afraid.

We had another carers' meeting last Wednesday and I am sure, indeed I know, we all have the same levels of worry and ask ourselves the same questions over and over - how are our partners feeling, what are they thinking, what will they do if something happens to us, what will the future bring, will something awful happen, etc. etc. and on it goes - there are no cures for this sort of anxiety.  So, stalemate.   One of the other carers asked if we ever feel sad - definitely a yes to that.  It is sad that our partners have, basically, had their futures snatched away and it has come to this.  You never think it will happen to you, human nature to think that, and it is a devastating shock when it does happen and you look around at others of the same age etc and wonder 'why us?'  And it is us, when you are a close couple then it affects both of you and both lives change beyond recognition.  

Pete has a pre-op appointment tomorrow afternoon which, so far, hasn't been cancelled so I am hopeful we may get a date for the new catheter.

On a brighter note, Adrian and Amie went to the BAFTAs last night!!  I will put up a photo of them both looking very very smart!!  Adrian is the absolute image of how Pete used to look at that age.

Moving on

I haven't posted for several days because I have been busy most evenings practising for my driving theory test, which I took today and I passed!!!  Yesssss!  I am feeling quite pleased with myself as I was really nervous - I'm too old to be taking tests!!  The next thing, of course, is the actual driving test which is going to be really nerve wracking - but, hey ho, on we go, it has to be done! 

The other good move is that, yesterday, I went to pick up my regular prescription from Tesco and it was all ready and waiting for me.  If you remember, Boots (aaaagh) managed to lose my prescription completely last month so this is a good result.  I have also moved Pete's prescription now to tesco - I picked up the missing bits from the last one yesterday so, hopefully, won't have to go back to Boots again.  We will see how tesco do next month.

We had a session with Candy (psychologist) yesterday and it went well.  Pete indicated he was fine with no major mood swings now so we have decided she doesn't need to come again - but if I feel Pete isn't coping again then I can give her a ring.

I think we have more or less accepted the routine of our lives now - we know there will be no major steps forward, but there may be a few tiny tiny ones if we don't give up.  

There is the carers' meeting to look forward to tomorrow so I hope it won't be cancelled again.

Pete continues to have pain in his right leg which is a bit worrying, I may have to ring the doctor and see whether we can increase the nerve blockers - even though he is on 9 a day at the moment! 

I will say goodnight now - at least I should sleep better tonight!!! 

Putting on Weight

We had an unplanned visit from the district nurse today - she popped in on the off chance to weigh Pete and he has put on 2lbs which is really good, but I can't remember when he was last weighed but it was definitely before Christmas so, possibly, he should have put on more!!  At least it is going up though so that is a positive.

Pete seems to be having pain in his right leg over the last few days which is making him miserable - no change there then!! 

Today was the day I was due to visit Boots (aaaagh!) to collect Pete's regular prescription.  I had to go early as he was desperate to get his strong painkillers!  Actually it wasn't such a long wait today as they didn't seem so busy - but I still had to wait for it all to be made up and, again, there is one item missing which I have to go and collect tomorrow.  I made the decision last month to change pharmacies so have got the list of his repeats to take to tesco - we will see how they do!  It can't be any worse though!! 

Pete didn't even get out of bed today until 2.30pm as he didn't feel so good (luckily he had just got dressed when the nurse came) but seems a bit better tonight. 

There was no carers meeting last night unfortunately but they are going to add another date on at the end to make up. 

And so we go on.

And Here We Go Again

For a few days last week Pete was complaining that he had a discharge round the catheter entry point, but I had been told this was natural at times so, to my shame, I got annoyed with him going on about it and kept telling him it was normal.  However, on Friday he seemed quite unwell.  Nothing you could put your finger on, just really really quiet and upset and wanted to be on the bed.  So I rang the district nurses to ask their advice and she said she would refer it to the duty doctor and get them to ring me, which they did quite quickly.  The doctor said it sounded like thrush and had he had it before?  I said no although he was prone to infections - she said she would prescribe some cream and ring again if that didn't work.  However, when Martin (what would I do without him and Mel) collected the prescription, it was actually for his usual antibiotics which Pete started straight away and they seem to have done the trick again thank goodness.  I thought at the time, I hope we can get this suprapubic catheter in soon.  Bad thought!!!  On Saturday a letter arrived cancelling the pre-op assessment booked and re-scheduling it for 18th February - so that's twice now it has been cancelled.  Bound to be a third time!! 

I have received the forms to fill in to apply for the Alert Card and a reduction in Council Tax, but haven't filled them in yet - just looked at them and thought I will do that tomorrow.  It all seems so complicated but I must do it - it all just seems just more hassle and energy and fight.  One of the other carers from Wednesday evenings said she also had these feelings and just doesn't have the mental energy to go down yet another road.  

Also yesterday Pete was very very shakey when walking and when he was writing his left arm and hand were shaking. Don't know why.

I keep looking back (which you shouldn't do) to this time last year when he was doing so well - what went wrong?  Will things just deteriorate or will they get better? 

Time will tell.

Things I Didn't Know About

Last night I went to the third meeting for Carers and came home with information about things I didn't know about.  Again it was a good meeting with lots to talk about - there are so many things that seem to be common to all our partners which I sort of assumed were peculiar to Pete, but if they all have them then they are obviously small things that affect the majority of stroke survivors but which you aren't told about.  The main two I can remember are: 1). Everything has to be done NOW, not in 5 minutes time but now. It doesn't matter what else you might be doing.  2) taste can be affected.  One lady said her partner seems to have lost a certain amount of taste and he says food is bland, so she gives him relishes etc to help.  I have mentioned that Pete seems to dislike some foods now and also that he has to practically have a plate full of tomato sauce with everything, which he hardly ever used to have before.  Someone used to have salad cream with everything and now won't have it at all.  It's very interesting to compare these things.

Then there was information about practical things I didn't know about - 3 in particular.  These are all schemes some of the others knew about, not information officially given out.

1). Devon Carers can issue a card, about the size of a credit card, that you carry all the time and it says you are a carer and gives information on who to contact if anything unexpected happens to you whilst away from home.  It has crossed my mind that I should have some information on me to say that Pete is at home alone and will need someone.  So this sounds good and I have rung them this morning to apply for the official card.  This is supplied free of charge.

2). Boots (aaaagh!!) supply pots for a scheme called 'message in a bottle'.  This is a little pot that you keep in the fridge (because most people have one!!) with information on the medication the person needs.  There is a sticker you put up saying you are part of this scheme and so when anyone has to come in in an emergency and you are not available to give details then they can quickly find all the relevant information. So I have picked one of these up today.  Definitely worthwhile and, again, it is all free.

3). We may be eligible for a reduction in our council tax (yippee!!). Apparently, if you are a carer for someone in the house (but not a partner/spouse) you qualify for a reduction but although this rule doesn't apply to us, we may qualify for another reduction because Pete uses a wheelchair sometimes in the house.  They are sending the form for me to complete and we have to get a letter from the GP but they said that, although Pete only uses the w/chair first thing in the morning as he is a bit unstable for a while when he gets out of bed, they think we may qualify. That would be useful.  But I do think that perhaps the information that some carers get a reduction and also you can qualify if a wheelchair is used in the house should be much more widely available.  Basically, when they leave hospital all you are told about is the Disability Living Allowance.  For a few weeks when Pete came home he could only use the wheelchair to get around but we would definitely have been able to get a reduction then.

So now I am much wiser than before and this is all useful information that you only find out about from word of mouth from other carers.

Bad Times

The bad times continue I'm afraid.  For a start I haven't been feeling too well myself, mainly I think just because of a build up of stress and worry.  I have had an almost permanent headache and also feel sick all the time - sure signs of tension!  Unfortunately Pete doesn't seem to take in how I feel so everything has to continue as normal - which is quite difficult to keep up.  But there is nothing else to do, just get on with it.  

I did go to the Carers' meeting on Wednesday evening and just being away from the worry made me feel better .... but then you have to come home again!  And nothing has changed!  Within an hour I had a headache again and felt ill.  The same last night when I was out with the Lovely Ladies and really enjoyed it and felt ok ... and then came home again!  This tells me that it is probably all in my head and I just need to try and relax a bit but, at the moment, there is continual worry about painkillers.  I have bought some over the counter but obviously I can't get any more than one box at a time and so, when they run out I really am stuck.  I'm hoping that it will be a different member of staff serving when I try and get some more.  Problems, problems! 

Pete has an appointment for the regular Botox on Tuesday which he is looking forward to as his arm and hand are so tight now.  

So we start another week - I hope it is better than the last.

Body Temperature

I have been wondering, and am now completely certain, that the stroke has affected Pete's body temperature.  It has got more noticeable over the last couple of months.  The first sign was when he suddenly, some time last year, found that a normal cup of tea and some foods were too hot for him to eat or drink.  But now he has also been finding it hot in the house, even when the heating isn't on!  Yesterday, after a long, involved question and answer session, he said he wanted some sleeveless t-shirts as against the normal ones.  I thought perhaps he was getting cold and wanted an extra layer, but no, today he has just been wearing the new one which is, basically, a vest.  So he is wearing a vest, a shirt and a jumper - and still getting hot.  Not hot to the touch, he just feels hot in himself and will discard the jumper at the drop of a hat!  Meanwhile, I'm wearing 2 t-shirts and 2 jumpers just to be comfortable, and sometimes a cardigan on top of that!  We can only have the heating on when he says so, otherwise he gets angry.  So half the time I'm shivering and he's only wearing a vest and shirt!!!   Now, normally this wouldn't have worried me to any great extent, but last night we saw a programme on how the elderly and vulnerable are coping with this cold weather - the main thing being when they don't put the heating on because of the cost - but they compared a lady who was very comfortable when her house was cooler rather than warmer and a man who kept the house cool because of the cost.  The point they were making was that if the surroundings are cold then their blood pressure rises to try to warm them up.  They found that both the participants' blood pressure rose as the temperature fell, even the lady who would rather do without heating, and this is dangerous for their health.  So now I am worried that Pete's blood pressure will be sky high as his body thermometer isn't working normally. But there is nothing I can do as if Pete feels hot, even when he actually isn't, then that is how he feels and he won't be told that it isn't good for him.  Just one more thing to worry about.

There are also stormy waters ahead in the next couple of days as the strong painkillers, paracetamol and codeine, he takes are about to run out and he can't have any more for a couple of weeks.  I have been warning him this was going to happen and trying to get him to cut down, but he won't.  We have already had a rage about it this morning when he wanted me to get more, and he is angry that he can't have any more than his regular prescription.  So, I am definitely not looking forward to the next couple of weeks when he will only be able to take paracetamol.  There will be much raging and/or depression.

There has also been a setback in getting the new catheter inserted.  Pete had an appointment today for the pre-op assessment and to get a date, but yesterday the hospital rang to cancel the appointment and the next available one is 13th February.  So I can see it is going to be a while before that happens.

Bad times.

At Last!

I have been wanting this for the last 18 months - and, at last, it has happened!!  Oh yes, oh yes, oh yes!  What am I talking about?  I have met other carers of stroke survivors in, more or less, the same place that we are!!!  

Obviously, although we so often feel so alone and that we are the only couple experiencing this, we did know that there were others but just couldn't find them.  However, that has now changed due to the meeting last night arranged by Rebecca, from the Stroke Association, and Bev, speech therapist.  It turns out that it is more to give support to carers than the actual person with aphasia (important though they are) and we could say what we wanted without fear of upsetting our partners.  There were 4 of us there which was actually a really nice little group as we had plenty of time per person and after Rebecca and Bev had introduced themselves then it was basically just the 4 of us talking about how we felt etc - the main thing we all felt was guilt especially when we just couldn't guess what our other half was trying to say.  We all have the same feelings of guilt, anger, frustration etc and we all feel sometimes that we just want to walk away for a while.  Also that feeling of 'oh no, not another day which I don't want to start' is common to us all.  

We are all about a year or more along this journey we are on with no chance of getting off.  There are slight differences in our situations, but, in the main, we are all in the same boat.  No-one has any answers or miracle cures, but just talking about it has been so helpful.  The time passed so quickly, it didn't seem like we had been there for half an hour, never mind an hour and a half!  At the end I felt so much better and everyone agreed it was nice to know we weren't going mad with all the range of feelings we have!  They are common to us all!!  

We will meet weekly for 6 weeks and, perhaps, we may be able to meet every so often after that (that is just me wishing) but, already, I am looking forward to the next one.

It seems to me that this is so very important because, as a carer, you always say everything is fine when it isn't and to be able to tell others who are not going to judge you, in fact they know exactly what you are saying, is an amazing feeling.   This is what all carers need - despite being told there is plenty of support out there,  in fact there isn't, certainly not support like this.  WE NEED IT.  Keep it coming I say!! 

So, tonight, I can finish feeling good for a change.

Oh yes, something I have just remembered is we discussed anti-depressants and all agreed our partners do need them but were very reluctant to take them initially,  in fact 1 person is still struggling to get his partner to accept them, I hope he can persuade her they are good and not an admittance of failure.

Rubbish Life!

Do you know that feeling when you either want to smack someone and scream at them or else you just want to sit down and cry?  Well, I know it all too well!!                                                                Today I have resumed my ongoing battle with Boots.  I went to collect the 2 items that were missing from Pete's regular prescription last Thursday, and also to collect my regular prescription.  I got one item for Pete and the other they will not have until 18th January, so helpful! Luckily we can last until then - which is just as well as Boots seemed totally unconcerned about it, just said there was nothing they could do. The fact that they had a month to order the item seems to have completely passed them by!  Then it came to my prescription - that seems to have totally disappeared into the ether, no sign of either the script or medication despite the fact that, again, they were ordered a month ago.  The pharmacist agreed to do an emergency prescription as it was a regular one - come back in 15 minutes, this after I had, again, stood there for 20 minutes whilst they scrabbled around claiming none of it was their fault.  Go back in 15 minutes to find one item still missing - by then I had had enough and also had to rush to catch the bus (or Pete would have got anxious that I hadn't returned) so decided to just take it and go and not argue the toss.  Did I want to order for next month - I really don't think so!  I am changing to another pharmacy as from NOW thank you very much! 

Why, oh why, oh why is it all such a bloody fight?  These places offer this infallible repeat prescription service which they totally cannot fulfill.  Apparently they are so very busy - not my problem, don't offer the service if you can't do it.  They also offer a new service now whereby they will text you when your prescription is ready - really? Even though they don't have time to fill regular prescriptions as they are so busy??  Nuts!!  End of rant! 

On the up side, with the sound exercises we do ..... Pete can now say my name!!  Yay!! Progress.  He can't process to use it when he wants me yet but, hopefully, that will come sometime in the future.  It is a major lift, for both of us, that he can actually say it.  

It is steps like that make us keep up the fight against aphasia.  One tiny step at a time. 

Strop from Pete and Strop from me!!!

Today Pete was due for his regular 12 week catheter change, which always worries me a bit as this is the worst time for infection.  However, it went ok with the nurse arriving nice and early at 9.15am so we didn't have hours of waiting for her to come.  The new catheter comes already connected to a leg bag (which has to be changed once a week) and Pete, for some unknown reason, took exception to this and insisted the leg bag be changed for one of the ones we use regularly.  I said it didn't need to be changed and the nurse also said it was best to leave it as it was all sterile and didn't need to be changed for a week.  But, no, Pete wasn't having this and decided to have a strop with much shouting! The nurse, being new, was a bit startled at this display of bad temper and so I had to change the bag there and then.  This, again, is a problem with the aphasia as Pete couldn't tell us why he objected to the original bag.  Anyway, it is now done probably until he has the suprapubic catheter inserted - and then it has to be changed every 8 weeks instead of 12.  

Now to my strop!  I trotted along to the pharmacy (and to name and shame them, it is Boots) to collect Pete's regular monthly prescription of pills, potions and catheter bags.  Their system is that when you collect the prescription you tick everything needed the next time and the object of the exercise is that when you arrive in a months time the prescription is ready to collect in full.  Well, that is what is supposed to happen, but, for the third month running, I have arrived to find it has not been done and also some items are not there so have to go again to pick them up.  It took them 10 minutes to find the actual script today, then 15 minutes to get it together and discover what they didn't have, and then another 5/10 minutes to wait for the pharmacist to check it.  So half an hour instead of about 5 minutes and, even then, not all items there.  And that is not counting the queuing time before you are attended to!  I made it very plain I was not happy.  So, I have decided I need to find another pharmacy who will, I hope, be much more efficient.  Most pharmacies do the repeat service so I should be able to find one I hope.  To rub salt into the wound, you can be in the queue waiting but when a drug addict arrives it appears they go straight to the front and are attended to immediately with sharps bins and whatever they need being produced at once!!  Why is that?? 

I have had a phone call from Rebecca at the Stroke Association about the meetings that are being started next week.  It seems they are mainly for carers of people with aphasia so we can talk about how we cope etc and, hopefully get some support.  So, I have decided I will definitely go next Wednesday evening and find out what goes on.  I will report back to you all!! 

Having got all that off my chest I will sign off for tonight! 

Still Low

I am very tempted to tell you all how it is - with no holds barred!  But that is far too depressing for everyone.  

One good thing that has happened is that Adrian got some replacement wireless headphones sent (and they did arrive safely, that is, the postman came back with them a half-hour after his first delivery of mail saying he had forgotten them on his first visit?? Odd!!) and I managed to set them up alright and they work brilliantly.  Pete can even use them in the bedroom with no problems.

Other than that, every day continues the same.  We are both very down, Pete again spending much of his time staring at the floor, even when the tv is on with programmes he would normally be interested in.  Nothing I suggest he do is of any interest to him.  When he is like this it is very hard to be positive, therefore I am down there with him.  

So, nothing else to say really.

A New Year

Another year done, a new one beginning.  I think back to the start of last year when we still hoped for great things, well, that is all gone now and I certainly can't see this year being any better.

It is with certainty that I can say miracles do happen - only not for us.  A friend whose mother was on the heart transplant list got the call to London today and I am so happy for the family but, rather darkly, at the back of my mind lurks the thought, why can't WE have something good happen?  Even my Christmas gift for Pete was stopped in its tracks.  Jealousy is not a nice trait.

We watched a film a few days ago and one character said "hope is a dangerous thing, it gives you a false reality" but then another said "but hope is a good thing, it keeps you going" - I don't know which of these I now believe.  I try to keep hope going but it is getting more and more difficult.  We continue to try to beat the aphasia with the writing and sound exercises but, even though Pete can now actually say a very few words by putting sounds together he is totally unable to use them outside of the exercises.  I met someone I used to work with a few days ago who I had not seen for 2 or 3 years so told her about Pete's stroke and that he had no speech now - this brought the usual response that he can write notes, draw or gesture, on telling her that none of that is possible, what did she say "oh well, at least he can't argue with you or moan at you" !  Yes, fantastic, just what I wanted to hear!  At that point I made my excuses and left (as they say).  

One other thing that is difficult for me is seeing other people getting on with their lives with all the natural joys of each day.  Then you get others that moan about their life when they really don't appreciate what problems others have to deal with.  I freely admit that I used to be like that - the only thing that did affect me was seeing parents with children with many many health problems and this always made me thankful that our boys were healthy, but other than that other people's problems mainly passed me by  - I wish now I had not been so selfish but had stopped and really tried to understand their lives.  But, on the other hand, I don't think anyone can truly understand unless they have been there themselves.

As you can see I am, again, in a very depressed phase.  I think it is comparing our pre-stroke life, after-stroke life and how it is now and I see yet another year stretching ahead with nothing getting any better.  Communication is the life blood of all humans, indeed we even try to communicate with other species.  Being able to talk about anything and everything whenever you want is something we don't think about until it is gone, so, please, all of you, appreciate the gift of speech and/or writing. 

And, with that thought, I will leave you.