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.