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!!!