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.