And there it was - gone!

So there it was, gone - Christmas done and dusted for another year.  We both hope you all had a good one.

We went to Martin and Mel for Christmas lunch and the afternoon.  Although we both enjoyed it (oh the relief to get out the house for a while!) I have compared the photos from last year to the ones taken this year and Pete has definitely deteriorated and there were no big smiles from him although he seemed happy enough.  He also insisted on using the wheelchair from the car to the front door whereas he had been able to walk that a few months ago.  When we got home Pete was very very tired and I mentioned having a FaceTime session with Adrian but he said no.  However, he had a doze and a Mars bar and that seemed to revive him, so we did have a chat with Adrian after all which was good as it seemed as if we had seen the whole family by the end of the day.  Pete did eat a good meal which was absolutely delicious as usual. 

On Boxing Day afternoon Martin and family came over for some nibbles and present swapping - we do that on Boxing Day as the kids get so much on Christmas Day and it spreads it out a bit.  Also had another FaceTime link with Adrian and Amie.  Again, Pete was really shattered in the evening, in fact he did take himself off for a rest on the bed at about 4.30pm.  

All in all, we had a lovely Christmas but it goes so quickly.  I also feel so sad that Pete cannot enjoy it as he used to - he used to love all the decorating, planning, cooking, present wrapping, etc - all gone now.  It's at times like these that I really feel for him and just cannot imagine what his thoughts are.  I am going to put up a couple of photos - one of Pete and me and one of Martin and his family.  

One disappointment was that I ordered a pair of wireless headphones for Pete as he can then sit wherever he wants to listen to music instead of being at the mercy of the headphone lead, but, although I ordered them on 13th December, they never arrived - indeed they still haven't come.  

To get back to basics, we have had a letter to ring up and book Pete in for the insertion of the suprapubic catheter.  It will be done in Day Surgery but now I am starting to worry and panic about it as, as far as I know, you have to be there about 7.30am but then may wait around all day before going in.  Now, I know that is not going to work in Pete's case - there is no way he will be able to sit there staring into space all day without going into a massive rage.  So what do I do about that?  I will have to ring on Monday and will see what they say and, perhaps, request he doesn't wait too long - but I know they will just say they can't guarantee that.  So I can see major problems with, perhaps, the end result being that I have to take him home before it is done.  As I have said before, sometimes it seems as if I am trying to push rocks with feathers and it is emotionally exhausting! 

Happy Christmas!

Well, it's Christmas Eve again - not a proper blog tonight, just a few words to say I hope everyone has a really good day tomorrow.  Pete hasn't been too bad over the last couple of days but I know he finds Christmas hard as he hasn't been able to help buy presents, wrap presents or do any cooking.  But, there we are, such is life. 

We are off to Martin and Mel's tomorrow and are really looking forward to it.  Mel is a superb cook and always lays a beautiful table and, of course, we shall see what Santa brought for the kids!!! 

       So, HAPPY CHRISTMAS EVERYONE!

Together Forever

Together forever, that is Pete and his catheter!!  It was the appointment with the consultant urologist today and it went ok apart from one blip.  I gave Pete a lecture before we went and told him he had to remain calm and not get into a rage like last time and if he did, then I would just wheel him out!!  Harsh, I know, but he had to be told after his last appointment there!  It was a different consultant from last time and he was very nice although we had to wait ages whilst he read the notes.  Anyway, it seems the stroke has affected the muscles in the right hand side of the bladder so it will never empty completely as it should.  The catheter Pete has at the moment is the usual one with the usual entry point for men (you know where I mean!!!) and this is what has been causing all the pain and discomfort despite Pete thinking it is always infections which he is obsessed with! When I told the consultant he had all this pain Pete immediately denied that (this was the blip that made me look stupid and as if I was making it up) and insisted it is infections but the dr said all the symptoms he has of infections are just natural discharges and debris - which Pete still won't accept.   But I think the dr agreed it is just the catheter itself causing discomfort.  So, the answer, is to insert a suprapubic catheter.  This basically involves a minor procedure to insert the catheter in through the abdominal wall straight to the bladder - it still involves bags etc but should relieve all his personal bits (!!!) of the pain.  I have told Pete that it will stop all the pain and stop infections - in the hope that he will give up on that one!  We now wait for a date for the procedure to be done under local anaesthetic.

We had a really bad day yesterday with Pete wanting me to ring the dr and getting angry when I said no. Eventually I gave in and asked for the duty dr to ring back.  As luck would have it, our own GP was the duty dr.  When he rang back I first of all asked for more of the morphine based painkiller and Pete got into an almighty rage with much shouting and bellowing as he assumed I wasn't going to say he had an infection.  He grabbed my arm and I had to force him off me and go into another room to continue the call.  The dr was quite concerned to hear all this going on but prescribed what I wanted and also antibiotics in case there was an infection in there.  This made me feel so cross with Pete and, unfortunately, that mood lasted all day and the atmosphere was very cold!  I just feel sometimes that, although he has had a stroke which has devastated his life, he also has to realise that my life has also changed for the worse and he can't keep treating me the way he does at times when I am trying to do my best.

So, there we are, life has to go on much the same as before with no miracle occurring to get rid of the catheter.

Good Weekend

Say it quietly but, we have had a very reasonable weekend! 

Pete hasn't been too bad although still stuck in his low mood but his temper has improved very slightly and he hasn't got angry too often.

On Saturday it was the Christmas meal for the Lovely Ladies where we all had a really nice evening.  I will put a photo of them at the end of this (the other 3 that is, not me!!).  From left to right they are Ashton, Fiona and Mel.  Although it is a cliche, these three amazing ladies really are my rocks and keep me sane.  I was a bit worried during the day because Pete didn't seem too happy and I was a bit worried for Martin having to cope with him, but he went on the bed and was fine.  I must admit that whilst I was out I didn't really give him much thought!  Fiona's daughter is a professional trained carer and I think I may get her to come in sometimes just to give Pete a bit of therapy and give me a break occasionally.  She used to come in to my mum so Pete knows her and we both know she is also an amazing person, always treating her clients with respect.  Anyway it is a thought for the new year.

Pete had another set of bloods taken again today so I hope they turn out ok.

We have also heard from the Stroke Association about the meetings they are going to have once a week, for 6 weeks, starting in January.  They sound like they may be quite helpful but I am still not sure about going - the big problem being the speech therapist, but I think I will probably definitely go to the first one at least, even if Pete doesn't, just to see what happens there.

And that is it for tonight, except to say Pete has an appointment with the consultant urologist on Thursday.  Hopefully he will have some suggestions on dispensing with the catheter.

Very low week

This week has passed with Pete still fairly bad tempered and me still pretty down.  Our bathroom floor has been laid ok and, luckily, Pete saved all his anger about not being able to walk on it for me in the evenings so I didn't have the embarrassment of a rage in front of someone else.  It took 2 days and then he had to come back a third time to replace the support that goes round the toilet - I don't think he had planned to put it back as, when I asked, he said he would do it but would have to go and buy some sort of drill.  Helpful!  I knew it wasn't going to go smoothly but, all in all. It was better than I anticipated.

On Wednesday evening Martin took us out to buy a few Christmas goodies and the turkey.  During the afternoon Pete had said he wasn't coming but he did in the end.  

Yesterday Adrian came down and has gone home today.  Pete did so enjoy seeing him but it still didn't make him really buck up, and, of course, he was really upset after he had gone.  It was a visit we had been looking forward to and I was pretty sure WW would stop it somehow, so it was such a joy that he got here!!! Probably not too enjoyable for Adrian but it made such a difference to me to have someone there just to say something to and get a verbal response.  

Adrian saw us doing writing and sounds and was quite surprised at how he has progressed since he last saw him (back in July).  He also suggested doing a few little drawings which was a good idea and, I think, Pete liked doing that so we will include them into daily exercises.  I am also going to start trying to get some gestures learnt - today we started with 3 for windows (opening or shutting), specs and water.  If we just keep on with those 3 to start with then, hopefully, Pete will start to use them.  

I am convinced Pete is now slowly but surely withdrawing into himself more.  He does a fair bit of muttering (well, just making low noises) to himself and when I ask what is wrong he just shakes his head. 

WW has been in action again - the microwave worked fine Wednesday lunchtime but, at tea time, it just didn't cook anything or even slightly warm it up.  So, a trip tomorrow to get a new one - how did we manage without them?!?! 

I am out tomorrow night with the Lovely Ladies for our Christmas 'do' and am looking forward to it if only I can get a grip on myself!!  I hope Pete will be ok with Martin but am not convinced he is happy about it! 

Depression

Depression is setting in I fear!  Over the weekend I have felt quite low and today have been wondering what the end of all this will be.  I just can't get a grip on the situation and keep wanting to cry (as if that would help) - even whilst rushing round town doing the shopping!  

One reason is that if I say something Pete doesn't agree with then he gets into a rage and won't listen to me or what I am trying to say, just shouts loudly.  So it seems what I think doesn't matter any more.

This isn't conducive to a good atmosphere.  I have basically learned over the last few days just to keep my mouth shut and go along with what he wants.

Tomorrow someone is coming to put tiles down on the bathroom floor following the flood several weeks ago.  This is going to be a very difficult day as, apparently, once they are down no-one can walk on them for several hours - Pete doesn't agree with this!  I foresee several arguments and they will be witnessed by a stranger.  I am very unsure about how we are going to manage at all.  If I had known this was going to be the situation I would have asked for a bit of Lino to be slapped down.

WW has been in action a couple of times over the weekend - one instance, the bulb went in the light in the hall and it spat out the glass bit and retained the metal bit, impossible to get out so had to get someone in.  There is usually no problem in changing a bulb, but not in this house!!  It becomes a major operation. 

I did email an Aphasia Research Group in London to get their ideas on how we can go forward.  Unfortunately they have not really proved any help - just saying exercises every day can help.  So no further forward on that front.  I also asked if they knew how common Pete's level of aphasia is, but they didn't answer that question, just general statistics on how many people have aphasia.

The representative from the local branch of The Stroke Association rang me to say they are setting up meetings for people with aphasia and their partners.  These meetings will take place once a week for six weeks, starting in the new year.  I asked who was running them and it is her and our old speech therapist.  This has immediately put me off but I'm wondering whether I might be cutting off my nose to spite my face.  Pete doesn't seem keen but it was suggested to me that I go to the first one on my own to see exactly what their purpose is and this may be a good idea.  The Stroke Association lady said she would send me information on the meetings - but nothing has arrived so far.  I don't know how to proceed on this one.  If the other people there have some speech or can write notes then this isn't going to help Pete and will just make him even more aware of how isolated he is and there will be no-one to tell me how they manage.  

One last thing, today the surgery rang and asked to speak to Mr. Dutt.  I said he has aphasia and could I help?  Oh no, they had to speak to him as it is confidential.  Very abruptly I told them to look at his notes and they would see they could speak to me - after a pause, back they came to say "oh yes", no apology or anything for not checking notes before ringing.  Do they do it to wind me up? It certainly feels like it. 

Off to have a good cry now! 

Is there a God?

Is there a God?  The ultimate question that hasn't been, and never will be, answered with any definitive proof - one way or another.

Before I go any further I have to say that I do believe there is a God - that is my personal feeling but I have no problem with anyone who doesn't believe in Him.  Indeed, it can start an interesting debate.

However, if you believe in God then, conversely, you also believe in Satan - the eternal good and evil.

So, who is determining the path of our (Pete's and mine) lives?  When Pete first had his stroke I tried to make the usual deals with God, as you do in crisis situations.  I thought, over the first weekend, He had heard and things went ok, but then it all went wrong and the brain damage really took hold and progressed - why, I wondered?  Over the next few months Pete did really well physically and my faith was restored somewhat.  

Now, though, things are very different.  I truly feel God has turned his back on us and, although I still believe in Him, I am totally uninterested in any platitudes that may say he is still there and cares.  When I am awake in the night, alone with my thoughts and churning things over and over, I have often thought that if Satan (complete with horns and cloven hooves!) were to appear and offer THE deal - my soul in exchange for Pete recovering speech and being able to write - I would snatch his hand off to shake on it.

Having written all that I'm not sure what I am rambling on about!  Suffice to say, God and I do not communicate any more.  Do people in ongoing bad situations retain any strong faith or not?  When you feel you have been abandoned it is very hard to deal with.  Am I losing my mind?  Maybe, probably! 

Meanwhile, not to self:  look out for a book about black magic - preferably leather bound and the older the better.  Last year's reprint just won't cut it!! 

Talking of magic, have you seen Dynamo in action?  OMG (oops) he is amazing. 

Is that the men in white coats at the door??? 

Sometimes I Feel ......

Sometimes I feel:

1. like going outside and just screaming 

2. that I just want to walk away from the whole situation

3. that there is no way I can take any more and can't cope

4. very angry with everything and everybody (including myself)

5. frustrated because any progress is so minute and also because so often I can't understand what Pete wants to say

6. so terribly sad for Pete.  I think back to how he was and imagine a conversation we could have had. Would he have wanted to live being so affected by the stroke? I know he would have said "definitely not" - but now it has happened I wonder what he thinks to himself and how he copes.

7. guilty because I can still do everything, go out and speak normally.

8. resentful that I have had to give up the life I had.

9. scared for the future. Will it ever improve? What if something happens to me - who will look after Pete? 

10. utter hopelessness and despair. I know I can't make it better and wonder whether I am doing ok or not and is there more I could do to help and support Pete.

11. so very lonely.  It feels like we are the only couple in the world going through this - although I know full well we are not.

12. like I am such a nuisance having to ask others to do anything for us

13. grateful that at least Pete is still here and understands everything

14. more anger that WW won't leave us alone and makes life even more difficult at every opportunity

Wow, this is such a self pitying post, but sometimes everything just overwhelms me and there is no-one to listen to me moaning on.

Some of these feelings just come and go but others are there all the time.  I think the emotion I feel the strongest is sadness that Pete has lost such a major part of the quality of his life - and also lost his status in the family.  He can never join in a conversation which is horrible for him.

I think that just about covers most things.  The only feelings that elude me are joy and serenity.

WW Back in Action

So, WW (whoever, whatever) has been very busy and is totally back in action to make sure we have problems! 

Following the problems last week with the Sky TV installation, a different engineer arrived this Tuesday and actually set it all up with not too many problems.  He hadn't realised someone had been before  but he got right on with it, set it up, explained it all and was generally very pleasant and helpful.

Yesterday we were due to switch to Sky for broadband and phone.  Broadband went very smoothly and we were only without it for about 20 minutes, not so the phone!  WW woke up and got to work!  The phone never came on yesterday, so on the phone to them first thing this morning and the girl was very helpful, she rang me several times to say what they were doing and at about 11am said someone had to get it unlocked and they would ring me in about an hour.  And there we go, end of story for today and we still have no landline phone.  So, it will have to be an action replay tomorrow.

Also today Pete's sister and brother in law were due to visit and we were so looking forward to it.  First thing this morning Pete was sick, and then he kept rushing off to the bathroom.  I assumed he had the obvious and had to ring to let Ruth and Dave know the situation - so disappointed. I have since found I totally misinterpreted the situation and it was actually chronic constipation rearing it's ugly head!  He has had tablets for it but not sure what the situation is with him.  He has only eaten a bowl of soup today so that's not going to help the weight gain. Ruth and Dave did pop in for about half an hour which was really nice but I am still disappointed that it all went awry.  What did I expect though really? 

We had an enjoyable FaceTime session with Adrian last night as it was his birthday and he hopes to come home in a couple of weeks when he has 2 days off work together.  This would be so great but, I have to admit, I am almost certain WW will put paid to that plan in some way or other.  Just have to wait and see - it would give Pete such a lift to see him, and me! 

Other than those problems Pete hasn't been too bad for a few days, but it is so hard to get a smile out of him these days.

I have come to the conclusion I am a very bitter and twisted nasty person!  This evening I went onto a website of a lady trying to raise funds so she can go to America to have intensive rehabilitation so that she can speak, read and write again following her stroke.  There was a video of her and yes,  you have guessed - she can speak (obviously not as fluent as usual) and hold a conversation and write a few words.  Oh, I wish!!!  Yet another one who doesn't know the meaning of REALLY not being able to do either of those thing AT ALL.  I always feel so bitter and jealous when I come across these situations.  Not nice of me but I can't help it.

Feeling Safe

This is going to be a fairly short post as there is nothing much happening at the moment!  Pete's mood remains low and today, especially, he has been so quiet it is quite worrying.  Last night we had a FaceTime session with Adrian which boosted him for a while.  I know he misses Adrian quite a lot as he can't get down here that often.  We are lucky that Martin and family live near and come in often.  

Talking of Martin it reminds me that Mel has booked the Lovely Ladies Christmas Outing in a restaurant - and I'm not allowed to wear jeans!!!  This means I have to get something bordering on posh to wear!!!  This means a shopping trip and Mel and Fiona are going to help me - but I have told them they are not allowed to bully me!!! I am really looking forward to it, the 4 of us will have a good time.  Another thing we have to look forward to is that on Thursday, weather permitting, Pete's sister and brother-in-law are coming for a visit.  Pete will enjoy that I know.

Whenever I go to town Pete always goes on the bed.  As I usually go in the afternoon I haven't really thought about this fact as he goes for a rest every afternoon, but this morning I had a driving lesson and Pete took himself off there which is unusual.  When I go out in the evening he always goes on the bed aswell which has puzzled me a bit as Martin is always here.  Thinking about it today I think he goes there whenever I am out as that is where he feels safe and nothing will happen to him (falling or anything).  This has been happening ever since we went through that period of him not wanting to be left on his own.  It must be quite worrying for him to be on his own I think and if he goes where he feels safest then that is fine. Feeling safe is very important - to everyone really.

That is about all there is to say today. Abrupt end, sorry! 

Thwarted at every turn!

My biggest wish is that Pete would be able to say a couple of words and that something would happen to give him a huge rise in how he feels about himself.  

Failing that, my next wish is that whoever, whatever would just leave us alone and stop thwarting us at every turn.  

The weekend passed quite quietly (I did go out on Saturday evening with the Lovely Ladies, but not for too long as Pete is so down - but at least it lifted me for a little while) and Sunday night was alright with no catheter disconnections!  Then Monday morning WW was back in action!  A letter came for Pete from the surgery saying something from his blood test needed further action or treatment, please ring the receptionist for details.  Straightforward enough until I rang them - there was no way she was going to give me the information, patient confidentiality again.  So I gave her the option to book me a call from the GP or write to Pete.  She opted for the phone call but the GP wasn't in until today - so, no problems, we could just worry about it for 24 hours.  When he rang today it is just that the level of something (he did say what but I'm not sure what it is) is very slightly up and he would like the full blood count repeated in a months time.  He will arrange for the district nurse to come and do that.  He has also put it on the notes that anyone can talk to me about Pete - I was under the impression the previous GP had done that but, obviously not!  

Today I had arranged for SKY to come and install Sky TV.  All sorted and arranged and the engineer would come, whack up the dish and connect us up. No problems.  All permission obtained from our landlord etc.  So he duly arrived just after 10am, checked around for where the dish can go, only to find that, because of some very high trees around us, there was only one place to put it.  And he couldn't get access to that spot because of a large camellia bush right where he would need to put his ladder!  After investigating the possibility of connecting us up to the landlord's dish which is already in situ further along the wall (the landlord's suggestion) it was established this couldn't be done for whatever reason.  Anyway, he is going to cut a bit of the camellia tomorrow and then SKY will come again next Tuesday, can't get here before.  So, not so easy after all.  So annoying and disappointing.

They are taking over our phone and broadband next week aswell, again shouldn't be any problems but, no doubt, WW will arrange for something to go wrong. 

It really gets me down that absolutely everything is such a fight.  I find it very hard to get motivated to do anything.  I want to email an aphasia research group, but haven't found the motivation to do it - I'm afraid of what they are going to say I think, as well as it seeming too much trouble.  This isn't a good state of mind but, at the moment, I can't snap out of it.  I'm sure I will at some point.  I hope so - there we go, that word hope again! 

Hope in all our lives

I am still brooding about the events of Wednesday - it is like a festering wound.  I keep telling myself to forget it but it just keeps going round and round in my head.  How must Pete feel?  He was so looking forward to her coming, had his ipad ready and also the book he writes in to show her, but unfortunately we never got that far.  It is like someone you like and respect comes in and, after a few pleasantries, announces you are absolute rubbish, a total waste of space who will never improve no matter how hard you strive to do so, and will never amount to anything.  How could she do that to Pete?  Thinking back, she did say any improvements will be made in the first six months - if that is the case why did she waste her time all these months? That is when she said the brain cells are destroyed so end of story, she said something about stem cell research not going to go anywhere.  I was always told that you should never hate anyone, you can despise or actively dislike them, but not hate as it is a damaging emotion - but, I'm sorry, my feelings are close to hate at the moment. Just for the way she said it and how it must affect Pete to be told that.

Anyway, moving on, I have been thinking about how much hope plays a part in all our lives.  We all live in hope of some sort or other almost all our lives.  We hope to do well at school and pass exams, etc., we hope to get a good job that will pay well and we will enjoy, we hope to meet someone who will become our partner and soulmate (and I did), we hope to have children, we hope our children will be healthy, happy and do well in life, we hope we will stay healthy as we get older and, then the biggie - we hope to win the lottery!!!!  You see? Hope plays a big part in all our lives.  Not all hopes are fulfilled but it is what keeps us all going.  If our hopes and dreams are destroyed - what is left?  Perhaps you don't agree with that but it is what I think and, particularly now, it is what makes me go on.  

So on we will go.

Bit of a Rant!!

Having only done a post a couple of days ago, I hadn't really intended to post again so soon, but events today have upset me and then made me very angry. So I decided - best have a rant on the blog!!!! 

The speech therapist came this morning, not having been for a few weeks.  After a bit of chat on how Pete was I told her we weren't doing too well on letters and sounds - her response? What we are doing is a complete waste of time and Pete will now never improve on the communication side, not even slightly.  A devastating statement to say the least.  I told her he could now write my name, to which she shrugged her shoulders as if to say 'you wish'.  I asked why then had the consultant said his aphasia will improve slowly over the next 2 or 3 years?  (We hadn't asked him if it would improve)  Apparently he shouldn't have said that and he only did so to make us feel better!  Bearing in mind that he is a very direct person and usually says it like it is, I find that very hard to believe.   

She spent quite a time explaining the brain cells are now destroyed (what, really???) and so can never be repaired.  Does she think we are total fools living in a fantasy land?  WE BLOODY KNOW THAT!!!  But as the consultant, and also the previous speech therapist, spent time explaining that, hopefully, repetition, repetition, repetition will eventually stimulate other parts of the brain to take over these tasks.

I am so very very angry that she sat there and thought it was perfectly alright to destroy us so bluntly.  I think she was out of order and, no matter what her personal thoughts on the situation, she could have possibly said she was 99% sure we wouldn't make any more progress but there is still that 1% chance.  At least we would still have hope.  After she had said it was a waste of time several times I told her I thought she had made her point.  She said she wasn't going to give us false hope and did we want her to leave? Too right we did! 

I can't really understand why she set out to destroy us as she has previously been very supportive but, so be it, she won't be coming again.

Several hours later I still think she was out of order to say that to us.  I have had several messages of support from friends and family and, despite her, we are going to continue as we were.  At least others don't think we are wasting our time.

I appreciate we are never again going to have an in-depth discussion on politics (!!!!) but just a couple of words would do.

Obviously Pete can't tell me what he thinks but how would you feel to be told that?  This could send him back down again but he does agree she shouldn't have said it and he still wants to carry on, but tonight he is very quiet.

Wasting our time? We have all the time in the world.  As my sister said, never say never.

I can't live without hope - it's all we have.

And Again

Yesterday I thought to myself that at least the urine infection must be clearing as Pete doesn't seem to be in as much pain.  Biiiiig mistake!  Whoever, whatever heard my thoughts and put the boot in again.

This morning Pete woke me at 2.30am - yes, wet bed again, but this time it was the leg bag had disconnected from the night bag - ffs why????  It was exactly one week and one hour from the last disconnection!  I can't really tape that connection up as it would have to be removed every morning and replaced every night and it takes ages to get it off.   So again change sheets etc and turn mattress, the only difference was that Pete didn't need to get changed - just wash his legs!  Once was bad enough, twice is a step too far - I dread next Sunday night, what will whatever, whoever think of next?  The trouble is that I can't control my thoughts and they are there before you know it.  I feel we are fighting a losing battle on every front and it will break us in the end. 

The District Nurse came today for a weight check and, although Pete hasn't put on weight, he hasn't lost any more. This is a bit disappointing as I was sure he would have put on a bit.  It was a new nurse so had to go through his diet again, and she said his weight still needs monitoring regularly.  She also took blood for a full blood screen, so await results of that.  

Letters, words and sounds aren't going anywhere although Pete can now write my name - that is, he can if it is the first thing he writes!!  This morning we started with 'Martin' and, for the first time, he got the first 4 letters but then he couldn't do my name - where is the logic in that?  It is very similar with sounds, he can usually do the first 6 or so sounds first time but then it all goes to hell and he has to make a big, big effort to do them again and never gets them right straight off.  It is so hard to see him struggling and getting upset with himself.  Is it worth putting him through it every day?  But we have to keep on trying and live with a bit of hope.

We are really struggling at the moment.  

Here We Go Again!

What did I say? Onwards and upwards! Well, someone somewhere laughed their socks off and put a stop to that! 

Whoever, whatever is in charge of our life, destiny, call it what you will, they decided we had drifted along nicely for too long.  Time to put a stop to that tiny feeling of moving onwards!  

It started at 1.30 am on Monday morning - Pete woke me to show me the catheter had become disconnected from the leg bag, GREAT, a wet bed to sort out!  I had to change all the bed clothes, help Pete get washed and changed and wash and turn the mattress as it was damp aswell. (Then had to be turned again in the morning and dried out).  I'm not sure why this happened but we have now wrapped insulating tape around the connection to make sure it doesn't happen again.  I keep asking myself why we have to deal with these totally unnecessary mishaps - you know the sayings, What goes around comes around, Evil comes to those who evil do, You reap what you sow, etc, etc, well, all I can say is that we must both have done something so bad in the past but I wish I knew what it was.  It may sound silly but I have really racked my brains and memory and, honestly, I don't know what we did to deserve all this.  The stroke and level of aphasia is hard enough without anything else.

Then, as if that wasn't enough, whoever, whatever, threw in another urine infection for Pete to endure (and me in a roundabout way).  Tuesday evening Pete showed me there was blood in his urine, it was really quite red, but then cleared again. So Wednesday morning asked for a phone call from the GP as Pete was obviously in pain again - so, it is back on our old friend antibiotics.  I wish Pete didn't feel such an intensity of pain but it seems that is all part of the stroke effects.

Sometimes it really feels like I am hanging over a cliff,  just holding on with my fingertips, and then someone comes along and slowly but surely, one by one, is prising my fingers off.  I know one day I am going to fall and there will be no-one to catch me.

Candy came on Tuesday morning for a psychology session and, again, Pete said everything was really good. But, this time, I think she guessed it wasn't and after a few gentle questions Pete did admit to feeling low again.  Anyway, it was a good session and quite a lot was discussed and sorted as much as it can be.  As she said, it is a hell of a thing to have to live with and Pete (and me) is entitled to feel depressed at times, this is all part of the process.  There is no magic wand to make everything better - all we can do is try to get through the hard times - but this is difficult when nothing is going well.

So, I'm afraid it's not onwards and upwards, more like backwards and downwards!! 

Success!!

I said on my last blog that I had tried to register on some aphasia forums without success.  Well .....Adrian to the rescue!!  I still don't know what I was doing wrong but Adrian has registered me on two forums called TalkStroke and Speakability.  The TalkStroke forum is a very active one and last evening I put up a request for any tips to help us with Pete's aphasia, and I got a reply quite quickly.  A lady who knows what it is like (although her situation has now improved) gave me a couple of links which may be of help.  There does actually seem to be quite a lot of research going on into aphasia and it may be worthwhile to get involved in some of these projects, or at least find out about them.  She did say that she believes hard work will be rewarded eventually, so we hope this turns out to be true and will continue with our exercises.  We are currently working on trying to get the 'buh' sound but without success yet.  She also said that she had invested in Sky Sports in the hope her husband would get excited and shout at the referee! It didn't happen!  When Pete gets into a rage and starts making loud noises etc I have often wished a word would spontaneously pop out - even the worst swear word would be a delight!!! I have also put up a comment on the speakability forum but this one is not so active so I'm not ever so hopeful.  But it is still good to get involved.

Pete has still not cheered up at all which is quite depressing - I may ring the doctor next week and see about increasing the antidepressants as he is on a low dose.  I haven't mentioned this to Pete so don't know what his reaction would be.  I don't think he realises how grumpy and down he is at the moment.

The only other event of note is that we have got the appointment to see the Urologist on 19th December, so not too long to wait.

I must think of a way to finish each blog - it is always difficult trying not to finish abruptly.  I think I may adopt the phrase Onward and Upward to finish, in the hope that it becomes true at some point.

So, onwards and upwards!! 

Aphasia Forums

Pete has been a bit grumpy these last 2 days - I don't know why but have an awful feeling we are going to hit the pain highway again sometime soon.  His appetite hasn't been as good as it was, it seems to me that we seem to get something sorted and then Pete (just to be contrary!!) brings it to the forefront again - I just can't understand what it is all about.

Meanwhile, we continue to bash away at language therapy, at least half an hour every day which seems to be enough as then he gets tired with it and struggles.  Some days it goes really well and he writes first letters quite quickly, other days, like today, he just can't seem to get the letters and can't distinguish the sounds and finds it hard.  The sounds continue to be a major problem and Pete gets so upset or angry when he can't make them, he just shakes his head, gets up and walks away.  

Yesterday was World Sroke Day when we try to make people aware of symptoms and when to act quickly.  Did you know that 1 person in 6 will have a stroke and it can happen to anyone of any age.  A frightening thought and, I must admit, I barely gave it a thought until it happened to Pete and devastated our lives.  Our problem was that, as Pete didn't display the normal major symptoms, no-one diagnosed a stroke until they had ruled out all other options.  I watch quite a few of these 'emergency' programmes on TV and when a stroke is even REMOTELY suspected, the A&E staff rush around trying to get the correct diagnosis and emergency treatment to prevent further brain damage - this certainly didn't happen when Pete was taken in, it was all very slow and seemed quite casual. He did have a scan which showed no bleed on the brain so, I ask myself now, why did no-one suspect a clot (which it was) and give the clot-busting injection which would have stopped all the major brain damage which occurred 3 days later.  But there, hindsight is a wonderful thing! 

Anyway, as it was World Stroke Day, on the twitter feeds I follow there were a few links to Aphasia Forums where survivors and carers could post questions and get answers from others in similar situations and just generally chat. Ideal I thought, this is where I need to be!  I read quite a few descriptions of problems and suggestions as to how to solve them - needless to say, no-one has the same level of aphasia as Pete.  Right, I need to register to join in the chats - easy, NOT!!!  I just couldn't get any site to complete the process!  It always started well but then just wouldn't continue to complete.  Now I'm not totally computer literate but, on the other hand, I am not a total idiot!  So what am I doing wrong?  Suffice to say, it seems I am definitely doomed to do this all on my own with no tips or chats from anyone else!!!  It certainly doesn't get any easier, probably harder.

Putting on weight

The District Nurse arrived on Thursday to do Pete's weight check and he is up to 9st 8lbs - wow, that is brilliant as he did go down to 9stone, so now he has to keep up the good work and keep putting it on.  She did say his BMI is probably low and a dietician may want to give advice, but I said its no good trying to tell him what he should eat - he knows that - if he doesn't want to eat it, he won't!!  She said full-fat milk, butter, cream, cheese, cakes, chocolate and lots of snacks.  These boxes are just about all ticked anyway.  She also brought with her the flu injections - one for Pete and one for me!  She said they do partners aswell so that saves me a trip to the surgery.  We have had no after effects so, a good job done.

She asked about the catheter so updated her on the situation and she explained they may change to a flip-flow which would help the bladder tone - instead of a continual flow it lets the bladder fill and then you empty it when you feel the urge!!  So, a bit of hope there that Pete may get rid of the catheter eventually. We will have to wait and see.

Unfortunately, Candy had to cancel her psychology session as she was ill, but will ring her on Monday to see if she is back and make another appointment. 

We continue to do about a half-hour a day on letters and sounds, the letters may be improving slightly and today I also asked Pete for the first letter and then do a drawing (eg first letter of tree and then draw a tree), I am hoping this will make it a bit more interesting and also encourage him to draw a picture as a clue - it went quite well actually.  I need to vary things as otherwise it just gets to be a tedious chore.  The sounds still remain a problem although I have got him to try and put a few of the sounds together - only two at a time, eg 'muh' and 'i' to make my, 'luh' and 'i' to make lie, and 'wuh' and 'i' to make why, this is coming on but I don't know that he will use them as words even though I am saying they are words and when to use them, he just seems confused at that point!  Still we will bash away at it.

Well, tonight the clocks go back and a horrendous storm is forecast for tomorrow night - winter has arrived!!  I don't like the short dark days.  I am feeling a bit down at the moment just at the thought of it and also because we don't seem to be getting anywhere.  Hopefully this will pass soon, I try not to let Pete know how I feel as then he gets down aswell.  

I will do a blog all about me soon and the whole gamut of feelings that I experience. 

End of Hospital Appointments

We have come to the end of hospital appointments - at least for the moment.  Hopefully we will get an appointment soon from the consultant urologist to discuss the next step.  I do have vague recollections of him saying a catheter is not satisfactory treatment for urine retention, but he may (or, equally may not) have said this at the nightmare appointment a few weeks ago.  All I hope is that I'm not making it up and there is some alternative.

Pete has been fairly happy the last few days with a few smiles and laughs so I think the antidepressants are now taking effect.  As he has been in a better mood we have, today, started a few exercises with letters and sounds.  He can still write all the letters of the alphabet when asked and I also say a few words that begin with each letter, and then try to make the sounds which doesn't work so well.  But we will keep trying - the main problem seems to be that he can't place his tongue in the right position to get the sound.  All he can do is the 'luh' sound and that involves curling the tongue which he does all the time.  It seems odd that he can't place his tongue flat against the roof of his mouth when asked.  Nor can he put his teeth on his bottom lip (vuh) when asked. It is all so difficult for him and he gets upset if I push it too hard so I tend to just say try it a couple of times then move on.

Yesterday was the appointment with the stroke consultant who was pleased with him.  I said it doesn't get any better, nor any worse, we are just on a straight line at the moment. This is normal now after this length of time but he said don't give up on speech, it can improve over 2 or 3 years - it will never be as good as it was but the odd word may yet come out.  He was quite happy with the medication Pete is now on and the seizures are now under control so that is positive.  He doesn't need to see Pete regularly in his clinics but will always be happy for the GP to refer him back if necessary.

Then later on yesterday it was the Botox injections again!!  I don't see that they do a lot of good now but Pete is adamant they do help his arm to relax so they are quite happy to continue with them, every 3 months, for as long as Pete feels benefits.  I do think they help his arm above the elbow but not much in his wrist and hand, but at least it makes washing and dressing easier if he can pull that arm further away from his body.  He doesn't get physiotherapy any more so we just have to do the best we can with arm exercises on our own.

I think the district nurse is due to visit tomorrow for a weight check, they weighed him at the clinic yesterday and he has put on a couple of pounds since the last appointment which is good.  Then Candy is coming for a session on Friday and, after that, nothing is booked - so we are on our own and in limbo!! 

NO ICONS!!!

Having just published this post, I find my little icons don't come up - just boring little squares!  So forget all that, I am so disappointed! 

Not Good News

Firstly, I am pleased to say Pete is still taking the antidepressants!  He isn't jumping around laughing and singing yet but hasn't been so bad tempered these last couple of days! 😃  (I have just managed to get these little icons on my keyboard and am becoming obsessed with them, so expect to see quite a few from now on!!!!).  I also think they are at last beginning to help with his appetite as on Friday he requested a pie, chips and carrots for tea - a decent meal, the first for weeks.  He is also eating more cake and chocolate - long may it last as he is due a weight check this week.  And flu injection is also on the agenda!

Unfortunately, he is unable to wave goodbye to the catheter 😪.  This was determined at the Urodynamics appointment on Thursday.  We were there for 3 hours and the staff were really nice and let me stay with him the whole time.  Firstly they put some liquid in his bladder through the catheter as it, obviously, was empty.  Then they removed the catheter and inserted some pressure measuring catheter, left it a while for his bladder to refill a bit naturally.  Anyway the pressure was measured regularly and also scans were done regularly.  Eventually he had to do what comes naturally (all dignity goes out the window with these investigations!!) and scans etc. done, left him another half hour and then did it again, and the final verdict was that his bladder did not have enough 'squeeze' to empty completely and he was retaining too much urine.  Therefore, the catheter has to remain in situ.  I was told the catheter removal trial due tomorrow would be a waste of time and advised to cancel it, which I did.  They will report to the consultant now who will, hopefully, send an appointment when alternatives can be discussed.  They also confirmed Pete's prostrate is fine and dandy.  I have been quite amazed at how well Pete has taken this news as both of us were hoping to see the back of it, but he has been fine and no anger outbursts or anything.

Pete has not complained of pain either the last couple of days - I did expect some complaints after catheters in and out, but it's all been ok.

Last night I was out with the Lovely Ladies again - it's only been two weeks since we last met but we had lots to catch up on as one of them had a daughter get married last week and also there has been much unrest at work, so lots of criticisms and gossip about that!!  We had something nice to eat and a couple of drinks 🎉 and a really good laugh.  I don't think I could keep going without these breaks and appreciate true friends so much - and, believe me, these three ladies are all something special.

On Tuesday Pete has an appointment with the Stroke Consultant in the morning and then it is Botox again late afternoon.  The Botox doesn't work as well as it used to, but does release his muscles a little bit.

And so, on we go again.  I have decided that, from now on, I will sign off with a little bee icon - this is because I have a bee tattoo on my right wrist which I love! Please excuse my madness!  🐝

Back on the Pain Highway

For the last two days Pete has been indicating pain in his groin AGAIN.  I would have thought it almost impossible for him to feel any pain now as he is on 9, yes 9, nerve blocking tablets a day as well as having the morphine based painkiller and also paracetamol/codeine painkillers!  I am convinced it is his brain sending pain messages, mainly because that is all he thinks about!!  I don't think there are any physical causes, nevertheless if his brain tells him there is pain then he feels it.  This seems to be one of the results of his brain damage (I hate saying he is brain damaged, but that is the way it is) and unless you can divert his attention from it, then there is no cure and, for whatever reason, this is what he focuses his whole attention on all day, every day.  

He has had investigations and nothing has been found to be a problem so far, which is good, but, on the other hand, I almost wish they could find something wrong so that we had a reason for it and could do something about it.  Tomorrow he has a 2 hour session in the Urodynamics Department - what this involves I really don't know.  Other than the fact that it is an investigation into the strengths and weaknesses of the bladder function I am not even sure what they are hoping to find out.  I can't see that they are going to be able to find out much considering he has had the catheter in so long.  The intake/outtake diary we have had to keep doesn't seem to be of much use as it wants to know how much he drinks of what (water, tea, coffe etc) and then how often he empties his bladder and how much comes out each time, and, as he is on a continuous flow catheter, all I can put down is when he empties the bag which gives no indication whatsoever of what they want to know!!  But, I may be wrong, and they will find out lots!!!!  Let's hope so! 

On Monday, Pete has to go for the catheter removal trial - as he has had it in since 30th May I am not too hopeful that they will be able to remove it permanently as much of the tone and muscle control will now be very weak.  He has to be in for about 6 hours so this is going to be a long session.  

Then, I think, he will have had all the investigations the consultant ordered for him.  As usual, I am very nervous about these next two and what will happen and how he will react and behave.

Again, for the last two days, Pete has been very bad tempered and aggressive.  This could be due to the pain, but I don't think so.  I told him today he is being bad tempered and he went off and got the packet of antidepressants - so, I assume, he blames them!! Whether he now continues with them remains to be seen.  He has been taking them for a week so they won't be working yet - but surely they are supposed to make him happier, not surlier.

On the up side, Pete did accompany us to Lidl last night and that seemed to go ok although I can't really say he enjoyed it! 

Now to wait and see what tomorrow brings.

Everything is Hunkey Dorey!

This is a very misleading title today!  Everything is Hunkey Dorey (is the spelling correct!?).  I have used it as the title because that is what Pete indicated to Candy (psychologist) yesterday.  In fact, it is far from it, but he doesn't like anyone to know we have problems.  He is trying to do more and not spending quite so much time lying on the bed but I think this is due to the fact I told him to stop just thinking about pain and do something to help himself.  I think Candy realises it is not as good as he tries to say it is but if he says his mood is getting better etc. who can argue with him?  She asked if he has been out at all, and he answered no which is true - he hasn't set foot outside the door for weeks apart from going to hospital appointments.  I don't know why he won't go out, he just points to his leg but I don't think it is that bad.  It is almost like the onset of agoraphobia.  She asked him would he go out for a walk that afternoon and the answer was an emphatic no!  Martin has offered to take us for a drive tomorrow afternoon, so I asked him did he want to?  He said no, but when I asked why not and that it would do us both good just to get out, then he said yes.  So, at the moment, we have arranged to go out but, when it comes to it, I'm not yet convinced he will.  

Pete does seem very keen to keep on taking the antidepressants - and yes, he does take one a day as prescribed, so goodness knows what breaking one in half a couple of days ago was about!! 

Aphasia is still causing major problems and arguments!!  I told Candy that I really would like to make contact with someone in the same situation as us (how many times have I said this) and she is going to ask around but - the usual problem, it is very rare for someone to be so severely affected with no breakthrough over time.  

We have gone quite a while now just drifting with no major knock-backs (touch wood) so I am ever so slightly hopeful we may be back on track.  Pete has the Urodynamics appointment on Thursday and, from Monday, I have to write down all his liquid intake and output!  The output is easy (obviously) but I think the easiest way to monitor input is just to use bottled water all the time and add up the bottles used per day!! 

And that is the state of play at the moment!  

Welcome to my World

The book that Candy recommended - The Selfish Pig - arrived this morning.  It is written by a carer for carers.  The carer is The Selfish Pig and the person they are caring for is The Piglet (Person I Give Love and Endless Therapy to).  There are about 13 million of us in the UK - and the bad news is that we all battle on completely alone and feel we are the only ones having to cope with it.  We seem to be a very solitary lot - whether this is from choice or not, I am not sure.  But it certainly seems to me that this is from choice as I have had no contact whatsoever from any other carers.  

I have read a couple of chapters and I am still not sure what I really think of it - it doesn't give a lot of hope for the future.  You are now a carer and are stuck with that job, and all it entails, with no help forthcoming from anywhere.  On the other hand it is not written in a depressing style, just 'this is how it is'.  I have found several examples of how I feel at times and have marked them to go back to.  There are several quotes I could give you but I am not going to!!!  All I would say is that if you ever see a copy of it for sale anywhere, and are interested in how carers deal with everything, then buy it and read it as no-one except a carer can understand what it is like 24/7.  I am no exception and didn't give much thought to carers' lives before.  Pete used to be my mum's carer when she lived with us for a few months.  I went to work in the mornings and he looked after her whilst I was out and we also had someone come in to get her washed and dressed as it wasn't appropriate for Pete to do that.  But we still basically had our own life.  Nothing like now.  The biggest, worst problem in my life is Pete's aphasia.  I could cope with the physical disabilities on their own, but throw this into the mix and it becomes well nigh impossible. (Unfortunately this side of things doesn't look to be covered in the book). At the moment we are almost not communicating at all.  We both get so frustrated and angry and, I think, Pete has decided it is not worth it to try and say something.  So, stalemate there I am afraid.  All it seems to be at the moment is a series of questions - do you want a shower, what do you want for lunch, what do you want for tea and do you want to go to bed now? Not much is it conversation wise?  

One thing Pete did manage to indicate today is that he wanted to start antidepressants.  This started when I gave him the morphine based painkiller and he didn't think I had given him a full spoonful and went into a rage.  I accused him (probably wrongly) of behaving like an addict and told him he had to start helping himself. Lying on the bed thinking of pain only made it worse, etc. etc. After a while he got the book with words and indicated the doctor and then went to the feelings page and pointed to sad and depressed. I asked if he wanted the antidepressants, which we already had, and he said yes.  So I gave him one and explained they will take a couple of weeks to work.  This afternoon he went and got the packet and took another one out and broke it in half, I thought he was going to take another and told him no it is one a day.  What he actually was trying to say is still not clear - did he want more than one or less than one, I don't know.  No doubt I will find out tomorrow.

Anyway, there you are, welcome to my world - and that of 13 million others, but all of us living a very solitary life.  

In Limbo

We don't seem to be getting anywhere at the moment.  Pete is spending most of his time now sitting on the bed with his legs up.  I don't know what is going on in his head as he doesn't go to sleep or watch the television during the day (he does have it on in the evening) and just seems to be sitting there staring into space.  I don't think this is doing him any good but I can't really get him interested in doing anything, although today he has played some games on the ipad for about an hour.  He seems to be quite content with this way of life, just coming through for meals basically.  On the other hand he is not complaining too much of pain, only a dull ache down his right side but, I'm thinking, this could be due to him not exercising.  So, yet again, I ask myself the question 'what to do' and, yet again, the answer is 'I don't know'.  I have offered him antidepressants again but he is still adamant he doesn't want them.  I will be quite interested to see what he says to the psychologist, but that isn't until Friday.

I have to book the catheter removal trial again but am a bit dubious about whether he can do it in his present state of mind.

It is Pete's birthday tomorrow and he will be 63 - so young really to have his life changed so much and everything taken away from him.  I have seen a couple of items on the local and national news recently about people who have had massive strokes which have changed their lives - for the better!!!  I am getting quite bitter and twisted about it all as they say they had major strokes which have left them with a bit of weakness on their left side but it has changed their outlook on life - yes, they could both speak fluently and talk about it.  All strokes are bad news, but they have different results and when someone tells you they have had a massive stroke but recovered, I tend to think 'you don't actually know what a MASSIVE stroke is' - I'm probably wrong and I'm not trying to denigrate anyone else's suffering but, hey, a massive stroke leaves you pretty well isolated and totally dependent on others, not thinking your life has changed for the better.  I still so wish I could just contact someone else who is in the same situation as we are.  If there is anyone else out there who wants to contact me, my email address is shirleypdutt@gmail.com  please feel free to use it.

Last night was a Lovely Ladies night again.  As usual I really enjoyed it and had a good gossip and laugh - I think I live for these get togethers as it means two or three hours away from it all and that is such a relief, especially at the moment.  

Tomorrow is the start of another week again - wonder what it will bring?  

Update

I couldn't actually think of a title for today's post as there are a few things to cover - so here is an update.

Yesterday Pete went for his Cystoscopy which I was very nervous about as wasn't sure how he was going to react.  When we arrived there were 2 doors to negotiate which were quite awkward but a lady jumped up and held the door which was really good of her.  There seemed to be quite a few people waiting which made my heart sink as Pete doesn't cope well with long long waits!  But, all was well as they were all women and they run two rooms - one for men and one for ladies, ideal!  We only had to wait about 10 minutes and that was spent filling in a form.  Finding somewhere to sit with the wheelchair next to me looked like it wasn't going to happen but luckily a couple offered to switch chairs so I could get on the end with Pete next to me.  There is this odd British habit of never sitting near a stranger if you can help it - always leave a space!!  They allowed me in with Pete to do questions etc and then he was taken off for the procedure and I returned to the waiting room.  He was gone for about 20 minutes before they called me back to be there for the results which, thank goodness, were that they found nothing abnormal.  That was a relief as I was worried about his prostrate - always a concern with older (!!) men.  Pete seemed fine afterwards although he kept indicating his leg - I think, but am by no means sure, they gave him an injection in his leg which hurt!  I may have got that all wrong!  

Today when he woke he did take 2 painkillers and indicated his groin but I am hoping this is just discomfort after yesterday, after all they took his catheter out, inserted a telescopic camera, removed that and then put in a new catheter - that's got to cause some pain!!!!  He has seemed a bit down today but I think it is just the after effects.  He was told to drink lots after the procedure and I had to get up in the night to change the overnight bag which was full!!  Anyway that is now over and done with - next on the agenda is Urodynamics which will last 2 hours!  Also if all goes well I can now book the catheter removal trial.

Today Candy, the psychologist, rang to see how we were doing as I had to cancel her last appointment.  Pete said he would like her to come so that visit will be next week on Friday.  She will pick up Hughie, her dog, on the way.  She was asking how I am and has recommended a book called 'The Selfish Pig' which is written by a carer and talks about all the feelings of guilt, selfishness, resentment and murderous thoughts we carers go through!  All apparently written in a very human and humerous way and not just a litany and lecture on what to do.  So, straight onto Amazon, and that is ordered!!   People ask me 'and are YOU getting support?' and I always say yes, but actually I don't get any professional support apart from Candy - where is it and what is available? I really don't know.  If I say, in front of Pete, how hard I find it at times then he gets terribly upset, so I tend to hold back really which probably isn't good, but also who wants to listen to a list of my woes!  That's why you, readers of my blog, get it full on!  Sorry about that!  I do keep a diary where I write everything, including how I feel, down but that is something I would never want anyone to read - people would probably think I am really horrible! 

Also today Pete's GP rang to see how he is doing.  Gave him an update and he has said that Pete should go back onto some antibiotics just to counter any chance of infection from yesterday.  I can't say enough times how glad I am we changed his GP. 

So, now back to drifting along I hope for a few days.

Still Touching Wood!!

This, for a change, is going to be a short post! 

We are just drifting along at the moment - no ups but, amazingly, no downs!!  Touch wood!

Tomorrow Pete goes for the Cystoscopy which I am very nervous about - I hope it goes ok.  I am going to ask if I can be there when they tell him after it what, if anything, they found.  Obviously he won't be able to tell me what they say so, hopefully, they will let me be there.  We will see.

So that's it at this moment in time - drifting is good. I can live with that! 

Slightly Better, Touch Wood!

I am reluctant to say we are moving forward again because, as soon as I think that, they (whoever 'they' are) deliver another stunning blow.

A quick catch-up, the mattress overlay arrived last week.  I was expecting something about, perhaps, 1" thick - but horror of horrors, it is about 5" thick so we now almost have to use a ladder to get into bed (alright, slight exaggeration, but it is HIGH).  The only problem is that if Pete leans over to pick something up he nearly falls out so I have to hang on to him!! 

I cancelled the Catheter Removal Trial on Tuesday but have got the telephone number to ring to rebook it when Pete is fit enough.  He had a Cystoscopy booked for 24th October, but that has been brought forward to 1st October and, today, I had a phone call for an appointment in the Urodynamics Dept on 17th October.  These have all been at the request of the consultant urologist we saw when Pete got a rage on - hence these appointments are coming out of the blue as far as I am concerned! But it certainly seems that he is following up on finding a cause.

The District Nurse came yesterday and gave Pete the antibiotic injection and did the catheter change which went smoothly - just flinched a bit when the catheter went in.  As Pete ate absolutely nothing over the weekend and Monday she has decided he needs to be weighed, by them, every month, so has booked the first 'weigh in' for 24th October.

The social worker called yesterday and a very pleasant gentleman he is.  He is called Greg and has said we can have respite when necessary and is sending all the details.  Also he gave me information on the Carers' Group and what they can provide and they rang this morning to get things rolling.  I may never need what they offer but it is good to know it is there and I can access it if I want.

Pete is enjoying the liquid painkiller - need I say more!!!  I am only giving it twice a day (he can have it 3 times but he doesn't know that!!) and it seems to be solving the problem. He has been much more alert and is much happier with smiles being delivered fairly often.  

A friend from work (one of the lovely ladies) called yesterday with an apple pie, custard and cream which her sister had made for us - what can I say, I really do have some true friends.  That was so thoughtful of her and, as her sister wants to be a professional chef, it was really delicious and looked good even decorated with leaves on top!  Oh yes, and her springer, Lady, was with them!! Pete loved seeing her again. 

One last thing - I was able to leave Pete on his own for just over an hour on Tuesday - he said he would be ok, and he was.

Still waiting for the next blow but I am feeling good and hopefully will be able to deal with it - whatever it is.  If Pete feels good - then so do I. 

Crisis Point

Last week ended on a high - the ultrasound didn't show up anything to be concerned about, the hospital rang with an appointment for a Cystoscopy in October and a Catheter Removal Trial today. So far so good.  I felt really sick and ill Friday night and decided it was reaction to everything that had gone on but now seemed to be going forward.  Saturday dawned, the nurse came to change Pete's catheter now that he was on antibiotics after the infection, but decided to leave it as it was coming out today anyway.  Again, so far so good.  Then Hell came knocking again on Saturday afternoon - without going into a long convoluted story I will just say unbearable pain was involved, I just crumbled, couldn't cope and was basically a train wreck. I tried to get a Nursing Home but you can't go in as emergency admission unless a doctor or social worker is involved (fair enough really) - so no joy there.  I would have very happily waved Pete off at that point. 

Monday morning I rang the district nurses to request a catheter change and then just broke down to them completely - said I couldn't do it any more.  She said she would make phone calls and get respite and ring back.  When she rang back she had referred us as a priority to the duty social worker and had also seen that our GP had us down for a visit anyway following the hospital discharge a couple of weeks ago.  He rang about 12 noon (please note, just a foible of mine, but there is no such time as 12am or 12pm - it is 12 noon or midnight!  Just saying!!) not knowing what was going on so I told him and he said he would contact the microbiologist and then be up.  He arrived, on a push bike, about 20 minutes later! He examined and talked to Pete, decided he needed an antibiotic injection and a catheter change at the same time and he would also prescribe a morphine based liquid painkiller to be taken alongside his normal painkillers.  He would immediately go back to surgery and get the prescription done and get it faxed to pharmacy.  Would be available for collection in an hour.  Wrong!  Again, to cut a long story short, Mel and Martin eventually, after phone calls, got the painkiller at about 5.30pm, just before they closed.  This, I hasten to add, was not the GPs fault.  They did not have the stuff for the injection and would have to order it in, would be available early this afternoon.  I picked it up today so the nurse will be in tomorrow to administer it (thought I might have a go, but decided perhaps not!!) and do the catheter change.  Meanwhile I have started Pete on the new liquid and it seems to be doing the trick, he is much happier today.  Only problem is that he seems to be getting really fond of it!!!   

Somewhere along the line yesterday the social worker rang and, after talking to him and explaining doc had been and crisis point had passed, he arranged to visit us tomorrow - hopefully to tell me what to do if I get to that point again and also to discuss any help available.

I am not proud of myself for wanting someone to take Pete away and am eternally grateful that we survived that point and came out the other side.  It is impossible to describe my feelings at the time and no-one can really understand unless they have lived it - and plenty of people have I know - but you get really really desperate and consider the unthinkable options available.

So, I would never have thought we would need a social worker in our lives!  Who would have thunk it!!! 

But we do need one.  

I am not going to say we have turned a corner because I just know there is something bad around the corner - there always is at the moment.  Sorry, but I am being a pessimist, I can't help it, nothing is easy and what should be straight forward turns in a fight for us.  

That's it for today. Goodnight all. (Dixon of Dock Green - anyone remember that?!?!)  

In Limbo

Ok, I get it, we are officially on someone's hit list and they are scoring a bulls-eye every day!! 

Sunday passed with Pete in extreme pain in his groin all day - maximum painkillers but they didn't do the job.  I told him I would be on the phone to Urology on Monday morning and we would go from there. 

Monday morning dawned with Pete absolutely in agony.  I decided something must be drastically wrong and rang the surgery - then you have to wait for a dr to ring back.  Whilst waiting for that phone call, the out-patient appointments department rang - they had a cancellation and could Pete attend on Tuesday morning at 9.20am. - oh yessss!  Meanwhile by about 10.00am Pete had calmed down a bit after I had given him an extra painkiller.  The dr rang and said best thing was to wait for the appointment tomorrow and just keep giving painkillers.  So I just crossed my fingers and hoped Pete would be in a fit state to get to the hospital.  The rest of the day just passed in a sea of pain and tears.

Tuesday morning came and Pete, although still in pain, said he wanted to go to the appointment.  Off we went and I hoped we could get some answers - wrong!!  We went in and the consultant examined him for about 2 minutes, this did not go down well and Pete refused to get off the bed, I really had to force him.  The dr then said 'well, I can't do anything today' - wrong thing to say!  Pete went into a rage which turned the whole appointment belly up.  I got that the dr said he had an infection in his bladder and testicle and the pain was just radiating out from that.  They aren't allowed to prescribe any more so we were given a 'Recommendation for Medication' sheet to take to the surgery and should get tablets in 3 days time.  Martin took this to the surgery and handed it in.  This seems a ridiculous way of going on - but them's the rules!  That is all I managed to take in during the appointment because, as I said, Pete had gone into a rage so I was trying to listen to the dr, calm him down and just thinking 'I've got to get him out of here'.  The dr did his best and was talking about causes, treatments and investigations, but I have NO idea what he said.  I couldn't ask any questions or anything, so I don't know what is happening re the catheter and removing it.  After we had been back home for a while Pete decided to keel over on me again (this has become part of his repertoire now). As I now know he will come out of it I just leave him where he is until he resurfaces.  He also seemed to go into panic attacks yesterday where he started gasping for breath - I deal with that by making him look at me and tell him to calm down and breathe slowly with me.  

Today hasn't actually been too bad!  I have kept him dosed up with maximum painkillers, and more, and he has been much calmer, even doing a bit of work on his owl whilst listening to music.  About 3.30pm he had a bit of a turn, but other than that, fairly good.  So, you ask, what was the bulls-eye today?  Well, the district nurse visited and I told her about urology and that we could get antibiotics on Friday.  She said no, she would ring the surgery and make sure they would be ready for collection tomorrow (she didn't get here until 5pm so was too late for today).  She duly phoned straight away to be told they had no record of the Medication Request!!!! They had lost it! Unbelievable! After a few harsh words and speaking to a dr she told them to write the prescription (luckily I knew what antibiotic was named and how long to take them for - from past experience I read every prescription now!!) and get it faxed for collection tomorrow from the pharmacy.  I wonder who will draw the short straw and have to deal with me!!!  If they are not there I have to ring her.

We are now basically in limbo - I don't know what is happening or what to expect next.  Oh yes, we do have an appointment for an ultra-sound on Friday and I don't know what that will throw up.  Nothing good I know! 

I hope you are all faring better than us! 

Hard Times Ahead!

After picking up a bit yesterday, Pete seems very unhappy again today with a lot of pain in his groin. He is spending more time just lying on the bed staring into space and, probably, thinking about the pain he is enduring which doesn't help the situation at all.  He isn't interested in watching television or listening to music to take his mind off it.  He isn't walking at all well and, indeed, his legs just seemed to give way beneath him today and he ended up kneeling on the floor.  Not good.

The other major thing is that he now doesn't want to be left on his own at all.  This is going to mean I will have to rearrange my life to ensure this doesn't happen.  Plan A was to get a carer to come in whilst I had driving lessons or went to do shopping.  Unfortunately, this is not a viable proposition as our income has been drastically cut.  So now to find a Plan B!  It is probably going to have to be that I don't go to town at all and, hopefully, can get someone to pick me up anything I need when they are in town.  Then I can cut driving lessons to one a week and get someone to come here for an hour whilst I am out.  This seems a good plan - not the best thing in the world but do-able.  To only have one hour a week out of the situation here is going to be very very hard, and is a scarey prospect,  but, hey, Pete doesn't even get that.  

One of the lovely ladies that I used to work with came over this afternoon and it was so good to just talk about other things and forget everything bad for a while.

We are just about dried out now after the flood and I managed to get a lot of washing dried outside in the sun and wind today, before the gales and rain tomorrow.

I would like to say onwards and upwards but that looks increasingly impossible!! 

11th September

This date has great significance to everyone the world over, it is also significant to me as it was the date Pete came home from Bideford Stroke Rehabilitation last year and we were so full of hope.  Now it is going to be remembered by me as the date that life, not content with giving us a good kicking from time to time, decided to totally beat the living daylights out of us.  

It all started to go wrong at 4.20am when I woke and had to go to the bathroom.  Outside the bathroom I suddenly found myself walking in water so, after hesitation about putting the light on (had it come from the flat above? Electrics, would I get electrocuted? Oh, what the hell!) I pulled the light switch to find the bathroom and kitchen totally flooded, our immersion tank had overflowed over the top of it and water was pouring out at a horrific rate as our water pressure is really high for whatever reason.  After a quick panic, yelling to Pete to come (stupid, what could he do) I turned the water off - phew!  Ok, grab towels - only to find them all totally saturated, as was everything in the airing cupboard.  So, then followed 2 hours of using one of the hand towels in use to try and mop up what I could.  4 bucketfuls later I had mopped up the worst, ripped up the bathroom Lino and carpet and decided that was the best I could do for the moment.  At 7 am I rang our landlord, who lives next door, and he came straight round.  He had arranged for the plumber to come at 8am, and we pondered the question of how to dry the kitchen carpet which, luckily, was flotex so repelled rather than absorbed water.  He brought me lots of old towels and sheets to lay down to soak up what was left and then it has been the dehumidifier on all day today and, amazingly, it is dry now.  All the stuff in the airing cupboard (why do I keep so much in there??) has had to be washed and dried, and no sun so everything in the tumble drier which has pretty much been on all yesterday and today - washing machine, tumble drier, dehumidifier - our electric bill will be enormous, not to mention the water bill!!!  Not to mention all the water in the house, today I found our wheelie bin (full size) full to the top with water - it sits under the overflow pipe. Luckily Martin was here and managed, with a struggle, to tip it onto its side and empty it - gallons of water down the drain.  Somewhere in between mopping up I noticed that Pete's overnight catheter bag was empty - was it blocked?  Oh no, it wasn't sealed along the bottom so had just run straight through onto the carpet for several hours!  Another major clean up! 

So, could it get any worse? Surely not!  But, oh yes it did!  The plumber arrived, had to go to get a part, at which point Pete decided to keel over on me.  He passed out, no response, eyes rolling.  Call the ambulance - again!  By the time they arrived (not long) he was coming to a bit but was carted off to A&E - I couldn't go as was waiting for the plumber to finish.  The house got quite full with 3 paramedics and the plumber!  Eventually he was admitted to a ward for tests, etc and I was told he would be in at least overnight.  The dr in A&E was appalled at the saga of his catheter and said I had to insist on it being dealt with.  At 5pm the ward rang to say he could come home but they had upped some of his medication, they had referred him for an ultrasound scan for a small lump on his testicle (oh no!) and had referred him to urology - they assured me they HAD referred him so I will start hassling urology on Monday.  So yesterday was spent running between the hospital and coming home to pick up saturated sheets and towels off the floor, load and unload the washing machine and drier, then back to the hospital. I can think of better ways to pass the time! 

They decided the problem had been he basically got overwhelmed with the pain in his right side and just keeled over, so have upped his nerve blockers to 9 a day and see how it goes. Today he hasn't been quite so bad, but the pain is still there.

Now I wonder what else life has in store for us, it certainly isn't getting any better.  What have we done to deserve this - makes us wonder! 

And that's it - not looking forward to 11th September next year! 

Saga of Antibiotics!

Yesterday was a really rubbish day which began at 4.30am!  Pete woke me at that time to try to tell me something was not right with his catheter.  I still don't know what his problem was as he seemed to think it was blocked, it wasn't, then he thought it was leaking, it wasn't, but he definitely wasn't happy with it.  We had a cup of tea as I tried to convince him all was well.  Then he had some painkillers and he eventually went back to sleep for about an hour - but I couldn't as was still trying to figure out what the problem had been.  For the rest of the day I felt really depressed and also was very cold for some reason - just reaction to all the problems I think.  When he woke he still wasn't happy but I said he was on antibiotics and painkillers - nothing else to do, which he eventually accepted.

I am still trying to chase up an appointment in the Urology Department and he insisted I ring again, which I did.  She said she would check what was happening and ring me back - which, surprise, surprise, she didn't!! 

Antibiotics!  I left it on Wednesday that the surgery hadn't rung back, so Thursday morning I was on the phone to them again.  The lady I spoke to knew nothing about my Wednesday phone call and the GP was on a day off so she would get the duty doctor to ring, which he did within about 10 minutes!   He prescribed some antibiotics and would fax to pharmacy for me to collect.  So off I go to get them but it took ages for the pharmacy to find the prescription.  Back home I eventually go and Pete took one straight away, but about an hour later he had a violent shaking session and said he felt very odd!  This didn't last too long so I basically just let it go.  Friday morning he took another one and again said he felt weird (although no shaking) and threw the packet down to indicate he would not take any more.  So, on the phone again to the surgery!  Having established his GP was there I booked a phone call from him, but the receptionist was particularly officious and it was back to patient confidentiality again - would Mr. Dutt be there to take the call?  No, he has aphasia and I will speak for him.  I am afraid we can't do that with patient confidentiality. I said the dr. was well aware of the situation and would speak to me - just book the call!  I was a bit short with her as really had had enough without her opinions. The first thing the dr. did was apologise most profusely for not doing the prescription Monday - no excuses, he just hadn't done it and didn't know why not (scrub the black mark against him as he totally admitted he was in the wrong).  He faxed another prescription through to the pharmacy for me to collect.  Which I did within half an hour without too many problems.  There are about 5 or 6 people working in the pharmacy and I think, when they see me coming, they all disappear and pick straws and whoever gets the short one has to deal with me!!!  Things are never straight forward in there! 

Candy, the psychologist, came Thursday and Pete got on well with the session, but he did say his mood was good all the time - which it isn't! But I didn't say anything.  We talked about dogs and Pete having enjoyed a visit from a springer spaniel on Tuesday and his general love of dogs and she said she will bring her Lurcher with her on her next visit - so Pete was thrilled to hear that and is looking forward to it in two weeks' time.

Finally, two photos of Mivvi who has settled in very well!  Martin is still very nervous and terrified of scraping her or bumping anything, but he is a good driver and all will be well I'm sure! 

Up and Down

Yesterday we got our new car!  I'm not absolutely sure how Pete feels about it yet, he didn't seem overly enthusiastic last night but I think he is coming round to liking it.  He did have some difficulty getting in and out but that was because he wasn't used to it and it is slightly higher than our old one and also we have to get the position of the seat quite right yet - but we will get there I'm sure.  On the other hand, me, Martin and Robbie love it!  The controls seem a bit like a space shuttle to me but I'm sure we will get them sorted, when we were out last night all the exterior lights suddenly came on and this was a bit strange not to have to physically turn them on - it seems they come on automatically when the light starts to fade!  The most disconcerting thing is that there is no handbrake!!!  It is just a little switch/lever thing and it releases itself automatically but you have to remember to put it on when parking, it's really odd not to have to release the handbrake before you can move off!!  Martin is very nervous driving a brand new car and an automatic at that!!!  He did opt to have a driving lesson in an automatic beforehand so at least he had some idea, never having driven one before, which was very sensible.  We have decided, as it a Meriva, to call her Mivvi (all cars must have a name - our old one was Jazzle), I did suggest Meri but that was turned down by everyone immediately,  Pete and Robbie have approved Mivvi, but Martin says he is just going to call her spacebus!!! 

On the downside (there always seems to be one) Pete has got himself another infection to deal with.  The dr. came Monday and prescribed antibiotics - he left us 4 tablets to be going on with and said he would send prescription to pharmacy, fine, but when I went to collect them today they weren't there. So home to ring surgery and they were supposed to be finding out what is going on and ring me back, but they didn't!!  First black mark against dr., so now have no tablet for tonight, got to ring them in the morning.

This afternoon one of the lovely ladies, who was unable to come Saturday, came over for a visit and she brought her beautiful Springer Spaniel 'Lady' with her.  Pete had lots of smiles for her and she is so gentle and friendly - he really loves dogs.  We have thought about getting one but, at the moment, the cons outnumber the pros.  I know Pete would love to have one but it could be a bit dodgy with him  not so steady on his feet.  He did have a fall today trying to put the step outside the front door, he shouted for me and I found him sitting on the floor!  We managed to get him up ok and he didn't hurt himself at all, at least I don't think so!  He went out for a walk around and we saw 3 of our neighbours which he enjoyed.

Tomorrow is a psychology session so I will be interested to see how Pete answers her questions on how he is feeling and how things are going.

Short Tempered

I have noticed recently that Pete seems particularly short tempered.  If I don't understand what he is trying to say quite quickly then he gets angry.  He doesn't seem to get that it is as hard for me to guess the subject as it is for him to indicate it.  I just can't get him to stop waving his arm around in a general direction - he thinks I should know immediately what he wants!  I usually then ask if he wants me to get something or do something and then offer different rooms, by which time he has lost it and cant, or won't, answer properly.  Frustrating to say the least!   By the end of each day I am so tired mentally.  I absolutely know it is so hard for him and can't imagine how he feels, but he cannot accept how I feel.

I tried to chase up an appointment for Pete in the Urology Department last Thursday, only to find that he hadn't actually been referred!  Why is everything such a fight?  Anyway, the secretary was very nice and when I said the GP had had a letter from Plymouth saying he was being referred back to Barnstaple, she said she would contact the surgery and see if she could get a copy of the letter and they could, hopefully, use that as the referral.  So, yet again, it is a case of wait and see what happens.  I will ring them again this week as we need to get this sorted with a view to getting the problem resolved and the catheter removed.

After the debacle in the Haematology Department a few weeks ago I wrote a letter of complaint to the Health Care Trust.  They rang me and said it sounded extreme regular waiting times and would investigate.  Yesterday they wrote with the results of their investigation - basically they said the meetings are scheduled into appointments, but they can never exactly guess how long they would last or how long the consultations would last.  So no satisfaction there then.  I can write to the Ombudsman apparently but it isn't worth it.  I don't think I have the energy for another fight!!  (I have to ring BT to sort out our Broadband which is now very weak, can only be used in one room, but I just haven't got the inspiration to do it!!  Every time we get the bill I think I must do something as we are paying for a very inferior service at the moment, but it always seems to be 'I will do it tomorrow' and, as we all known tomorrow never comes!!!) 

I went out last night - after a dodgy start!  Pete started complaining loudly of pain - much moaning and groaning - about an hour before I was due to go, so rang to cancel, but then Pete got upset and said to go, so I did!!!  As usual, it is so nice just to get away from the situation for a couple of hours.  We all had a nice chat, nice meal and some laughs - and a general good gossip.  I have worked out that each week I have a total of 5 hours away from home - two trips to town, each lasting from 1 to 2 hours (no more) and 1 hour driving lesson, so I do need these evenings, even just once every couple of months! 

Motobility Scheme

First of all today I would like to update you about Katie who had a double lung transplant.  She is doing amazingly well, with no signs of rejection and today she had her first lung function test - it is up to 50% which is fantastic as it was at just 16% before the transplant.  You can read the blog Katie writes about cystic fibrosis at www.misskmgammon.blogspt.co.uk.  I will also put up 2 beautiful photos that Katie's lovely Mum, Angie, gave me permission to do.  There is one of them together after the transplant, happiness personified, and one of Katie taken two weeks after the transplant.  As her mum says, this girl rocks!!!

Now, the Motobility Scheme - we decided to go ahead with this about 3 months ago as I am learning to drive an automatic car and ours at the moment is manual so we would have to get a new car.  Also, if Pete can ever drive again (unlikely) then it would have to be automatic.  This scheme, contrary to what a lot of people think, is NOT free.  Pete has to give up half his Disability Living Allowance each month, but in return we get a brand new car, taxed, insured and with all repairs paid for.  This suits us as it means we won't be suddenly faced with unexpected car bills.  The car is replaced every 3 years.  Martin and I looked at quite a few and, in the end, opted for a Vauxhall Meriva as this ticked all the boxes we need.  It has height, so Pete can get in and out easily and has plenty of space for his wheelchair and any shopping.  It is also easy to get in and out of the back seats and has grab bars already in place.  We have named Martin as the driver and can add me when (and if) I pass my test.  So, all good, and we collect it next Tuesday.

I spoke to Pete's GP yesterday and he has upped the dose of nerve blockers as Pete still has quite a bit of dysesthesia, not as bad as before but still there.  He also gave me the results of the blood test and that is ok so no venesection needed for at least 3 months.  Good news!  We also discussed a couple of other issues and everything is now sorted.

Pete has been walking outside a lot, even going in and out on his own again.  The painkillers are down to 4 most days but sometimes 6 but this is ok.   He is still doing well in the kitchen - a big help!  And he is singing to himself - no words yet, but we live in hope.

The only down side at the moment is pain, and we hope to eliminate that in the next few weeks, and aphasia.  The gestures are not going at all well, Pete just cannot process to use them.

Probably no blog now until Sunday as it is another lovely ladies night on Saturday which I am looking forward to so much.