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!