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!  🐝