Despair (Pete) and Guilt (me)

I last blogged on Sunday and such a lot has happened since with Pete reaching the depths of despair and making a serious attempt on his own life.  Monday he was very down again and kept indicating to his groin, Tuesday I had to go to the dr and when I came back found him in bed having taken 4 sleeping tablets - very worrying but he wasn't out cold and I kept rousing him every 20/30 minutes and we got through that.  I took the packet away and hid them and there were 8 left in the box.  Then yesterday it all came to a head, when we woke at 6.30 am he was again indicating his groin and said he was in pain, but I just kept reiterating that he had no infection and he had to wait another 2 weeks before seeing Dr Saunders and being referred by her to a urologist, but I also said that as he hadn't taken the tablets she prescribed then she probably would not be too impressed.  We had a very bad tempered morning and a couple of distressing things happened which I won't go into.  Pete took himself off to bed after lunch but got up again at about 3, then took himself off again at about 4. When he hadn't reappeared by 6.40 I went to check on him to find him out cold and the box of sleeping tablets on the floor - empty.  I couldn't rouse him so called 999 and an ambulance was there in minutes.  The paramedics managed to get a bit of reaction but said he had to go into hospital to be monitored until the effects wore off.  So, back to A&E and I left him there at 9.45 whilst they waited for a bed for him on the Medical Assessment Unit.  I was obviously very upset, especially as I realised he had gone looking for the tablets and found them, the only lucky thing is that there were only 8 left or goodness knows what the consequences would have been, I dread to think.  

Pete was seen by the consultant this morning and he had indicated to them his pain in his groin so the Consultant Urologist was called and he had a bladder scan where they found that he has not been able to empty his bladder and there was quite a build up of urine, causing the pain and discomfort.  This is when my guilt kicked in - I had not believed him as to how bad it was.  This damned aphasia again causing problems as he couldn't talk to me about how it was for him.

A catheter was put in and, thankfully, this seems to have relieved the problem but he is being referred to the Urologist in Plymouth Hospital.  He was seen by the Psychiatrist this afternoon who then rang me to discuss it.  Having had a long talk with the Psychiatrist about Pete, his history and his feelings we both agreed that this had been a one off brought about because he couldn't get his feelings across.  He has not prescribed anti-depressants as neither of us feel he needs them at the moment, the problem now being sorted.

Pete is now home with the catheter still in, it has to stay in until he has his appointment at Plymouth.  This is a bit daunting but I have been shown how to empty it and how to attach a large bag at night (sorry, probably too much information!) . During the day he has a smaller bag strapped to his leg.  

Pete seems much happier tonight and I am hoping someone is standing by the light switch ready to turn it back on to give a glimmer of light at the end of the tunnel.

The down side is he has no sleeping tablet to take for the next few nights!!!! So, could be long nights but I hope not.

And that is the position at the moment.  Incidentally, the ward staff did seem very nice and had understood his aphasia and given the time he needed to him.

Light Off!!

So, you get a bit complacent and think there is light at the end of the tunnel, then ..... WHAM ....  someone comes along and turns the damn thing off again! 

I still can't shake off this chest infection, but that is all beside the point really - after a few days of Pete seeming to be getting brighter etc, yesterday he decided to have a 'funny turn' and ended up in A&E again.  He was fine until about 3.30pm when he suddenly got very vague and 'away with the fairies' to a certain extent - he didn't black out but definitely was not his normal alert self, although he responded to questions he just wasn't with it at all.  Martin and Mel had just arrived and Martin called an ambulance as we didn't know what to do.  Was he building up to another stroke or what?  The ambulance lady did an examination (this is always so hard as Pete has no speech and can't explain how he is feeling) and, although Pete was coming out of it after about 15/20 minutes , she felt he needed to be checked out at hospital as he may have had a mini stroke.  The hospital did a full examination, blood pressure (which had been high when the paramedic took it) bloods, urine, heart, etc. and all the results were normal so the opinion was it was just 'one of those things', the Dr did say it may have been a mini stroke but there was no way of telling and all his medications are what they would recommend anyway.  So he was discharged home again - I feel a bit stupid as perhaps we wasted everyone's time, but, on the other hand, I tend to go into panic mode at times.

Pete seemed to be fine today although he has not done any walking and wouldn't go out for a drive this afternoon, despite it being a fabulous day.  Then tonight he has gone off to bed at 8.30 so obviously is still not feeling himself, but I can't really get to the bottom of how he is feeling.  It's very hard trying to assess the situation - but if it happens again I probably won't call an ambulance but will let the situation develop and see what happens.

So, there you are, the light is off again and I don't know what this week will bring.

Light at the end of the Tunnel - I hope!

I think we are now coming out of what has possibly been the worst period since Pete had his stroke.  

He has been much happier these last few days and, at last, I think I am beginning to feel a bit better.  I lasted until Sunday on the instructions not to take medications unless I got worse, but by then although I didn't feel worse, I didn't feel any better so started on the antibiotics and steroids.  

With both of us being so miserable things were not improving, but following Pete's visit to Dr. Saunders he has picked up no end.  I think a lot of it was that she did a proper examination and seemed to want to get to the bottom of things and this made him feel that, at last, someone was trying to help him rather than just dish out tablets which was all his GP was interested in doing.  

Today Bev and Suzanne have both been to see Pete and both seemed pleased with his progress.  Bev especially was pleased to see the old Pete back as she saw him and referred him as she was worried about him.  Anyway today's session went well and she said, although he was a bit rusty, things were coming back.  She thinks it would be a good idea to make a couple of lists of words for Pete to refer to, but I would have to make him use them as he doesn't really connect to use lists to try and tell me something so would have to be prompted to do so.  We are starting to think now of useful words that he can point to - the first one is probably going to be 'greenhouse' as he likes to know that I have closed it up for the night! But I don't think we need too many words as then Pete would just opt out of using it all together!!  So that is our task for the next few days.

Suzanne was also pleased to see Pete and to hear things were a lot better - she had talked to Dr. Saunders and has also said she will have a word with her about the medication she prescribed.  It is really good to know we have such a caring community team who all communicate with each other and compare notes, very reassuring.

I told Suzanne about Pete walking on the side of his foot when going down steps and the way his foot swings right round, so off we went outside to demonstrate! She could easily see what I was talking about and thinks it is because Pete feels slightly unsafe as there is no rail or anything so is concentrating on not falling and keeping his balance.  She suggested he use the ankle brace to go up and down the steps as this will help his balance - the unevenness of the steps is quite challenging for Pete and he actually does very well - but he is not to do the steps on his own at the moment!  He is to keep up the walking in the house which is fine, his foot goes down flat inside which makes sense as he feels much safer.  It is just such a shame that, yet again, he can't actually explain how he feels when walking up and down steps and on different surfaces.

So, that is it for the moment - I feel there is light at the end of the tunnel at last after the worst of times.

One Week Later!

No blog for a week - the reason for this has been that both of us have been under the weather and going to bed early most evenings.

First off, Pete went to a hospital appointment on Tuesday with a clinical specialist for the community.  After the usual long wait (!!) we eventually went in for a 45 minute appointment, which was very good.  Nothing was rushed.  I had written out all the history of the infections and all about his leg.  She did an examination and her conclusion was that, although his leg muscles were tight, there is a possibility that the pain messages and nerves are getting confused in the brain and it is telling Pete his leg hurts when, in fact it doesn't really.  Not much help as he still has to deal with the pain.  Regarding his urine infections she went back through all his notes and has concluded there may be an underlying cause for the aggravation rather than infection.  She took another sample to send to the labs and she rang me yesterday to say there is definitely no infection now, but the symptoms may persist for a while until it all settles.  She did prescribe some tablets which will block out the leg pain, help him sleep and also help the bladder settle.  Unfortunately Pete cannot take these tablets and sleeping tablets - and he won't give up the sleeping tablets!! Even though I have told him over and over that the new ones will cover that and more, when it actually comes to bedtime it is the sleeping tablets he opts for!  Not helpful as it shows he is addicted.  But, on the other hand, he cannot complain about anything when he won't take the new tablets.  The Specialist Dr says she will see him again next month to see how it is going, and if necessary she will then refer Pete to a Consultant Urologist.

Yesterday and today Pete does seem a bit brighter and not going off to the bathroom so often, and he has also been doing some walking which is excellent. 

Meanwhile, I have got a bad chest and am feeling totally exhausted all the time.  I have been to the dr. and although he has prescribed steroids and antibiotics I am not to take them unless it gets worse!!  I will give it a couple more days but if it is no better then I am going to take them - I have never been given a prescription with those instructions before!  Very curious! 

Hopefully things are looking up! 

 

Depths of Despair

Here we are and things couldn't be much worse at the moment. We are both in the depths of despair because of the urine infection. Yesterday, when I returned from work Pete indicated that he is having problems again. This just seems never ending.
Today Bev has been and, unfortunately, we both ended up in tears as to what to do. She rang some specialist and has made an appointment for Pete for next Tuesday, as she thinks this may all be connected in with the stroke and Pete being very low health wise. This doctor will look at the whole picture and see if there is anything she can suggest, so a little bit of hope there.
In the meantime we will just struggle on and hope things don't get too much worse.
It is very hard at the moment and I almost feel all cried out, but still the tears come.

Other People's Opinions

Well, so far, so good - the antibiotics are still doing their job, but still a few days to go.
Pete's leg is playing up a bit but we need to keep walking and he has found if he sits with his leg up on a chair or the coffee table, this stretches the muscles and gives him a bit of relief.
The aphasia is still causing us grief - it is 10 months now but still no speech improvement. I really miss having two sided conversations rather than the 20 question episodes we have now. Sometimes Pete struggles so hard to try and say something, but to no avail, and this is very distressing for him and for me to watch him struggle is upsetting. He does really well on getting the first letter of words but we haven't progressed any further than that. He hasn't had any speech therapy for a couple of weeks but has a session this Friday when I will be at home so can have a chat and update with Bev. I'm hoping she will have some suggestions on how we can move forward. When I tell someone that Pete has no speech they seem to tend to think that he can actually say some words but can't say sentences or speak fluently, I think they don't really believe that his only word is 'yes' . They seem pretty startled that I do literally mean 'NO speech' and ask the obvious question 'how do you manage?' The answer is - we don't!! Frustration rules I'm afraid! It is especially bad when he isn't well, trying to find out his exact symptoms is a nightmare and he also seems to lose his sense of reasoning which makes life very difficult. People also think that well, he can't speak so he can write stuff down - again, a big fat no! All tools of communication gone.
Enough now of that depressing subject, I really feel I need to see some miracle. It's so hard, especially when dealing with it on your own.
Another thing said to me lately was that I need to get help and get someone to come and be with him whilst I go out and relax - but I can't do that as I know Pete can be left on his own but if I go out to have a good time I would feel so guilty as its not something he can do now. I am conscious of where he is, what is he doing, what is he thinking, ALL the time. So we have to battle on as we are with no changes on the horizon.
And that is enough for tonight I think!!

The Saga Continues!

Friday finished well and Saturday started well! No leg pain and the antibiotics seemed to be working - but then it all fell apart again yesterday afternoon! In the middle of the afternoon Pete came back from the bathroom and indicated the pesky bugs were active again! I admit I was a bit sceptical as it doesn't seem right that the antibiotics stopped working after 24 hours and he still hadn't finished the course. So said just to drink water and wait until the course was finished, but Pete got so distressed again and I just couldn't face another evening of him being upset and angry so I agreed to ring the Devon Drs to see what they said. After speaking to a dr and giving all the details of what has been happening, he wrote a prescription for yet another course of antibiotics, so we are now on the third lot! Luckily he didn't want to see Pete so we didn't have to go through all that, but Martin did have to take me to get the prescription - he must dread his phone ringing now!!!
Anyway, so far so good, they seem to be working but I am certainly not counting my chickens yet! Until the course is finished (7 days) and he hasn't had a recurrence I won't be relaxing. Every time Pete comes back from the bathroom I wait with baited breath! Hopefully it will be third time lucky as it's all been very stressful for all of us.
Today has been a beautiful warm day, just like summer! Pete went for a walk around outside this morning and we met Patrick and had a nice chat, and I have received further instructions on growing tomatoes and also have to sort out the strawberries we have coming on - a few haven't grown so need replacing, so I have to get some runners from Patrick's and plant them in. The cucumbers are looking well and I have been told what to do with them. Then this afternoon we went outside again and did a bit of weeding in the garden, Pete managed to do a bit as well. Have I ever mentioned that I don't do gardening! I really dislike it and my having to take over was never on the agenda!! But, hey ho, I have to do it now - begrudgingly!!! Give me an area of concrete with tubs of pretty flowers and a garden lounger and I am happy!! Luckily we haven't got a lawn that needs cutting.
No Vista Class tomorrow as it is Bank Holiday and the forecast is for another day like today - so, fingers crossed we will have a good, relaxing day! I bloody hope so!

Emotional and Upsetting Times

No post yesterday as Pete was incredibly angry and upset and in pain - which affected me and he also involved Martin.
Following our agreement on Tuesday that Pete would get back to exercises etc., he suddenly seemed to get a lot of pain in his leg that evening and it all fell apart - bad temper and anger. Of course the urine infection wasn't helping, but why he suddenly got such bad leg pain after being ok for a few days remains a mystery. I think all this anger really tenses up his muscles as, after he had taken himself off to bed, I heard him calling me (although he can't shout, he just makes fairly loud noises) and went through and found him lying on the bed with his right leg stuck up in the air at an angle of about 45 degrees!! It was absolutely rigid and wouldn't bend but after a couple of minutes it did relax and come down. There is no way he could have held it at that angle absolutely straight of his own volition! He can hardly lift it off the bed and certainly cannot get it straight like that!
On Wednesday the doctor rang and, although no results had yet been received, he did do a prescription for a different antibiotic, which we duly collected and Pete started taking early evening. Pete seemed happier now but his leg was still giving a lot of pain, and had throughout the whole day.
Yesterday was the worst day, culminating in Pete more or less ordering me out of the room because I wouldn't take him to A&E which is where he wanted to go as the antibiotics hadn't kicked in yet and his leg was extremely painful. No matter how much I told him he hadn't even had the tablets for 24 hours and the pain was because he had done NO exercises or walking for over 2 weeks. Martin went in and also reasoned with him and told him no A&E. Martin googled it and said to give him some muscle relaxant tablets we still had from the last visit to A&E and told him to walk about for a few minutes (which he didn't!!) as the pain was due to his muscles having no exercise for so long. Anyway, Martin then had to go home and Pete went to bed in a very bad mood and very worked up and tense. Pete was also trying to blame the pain on the antibiotics.
I took the opportunity to ring my sister, who was a nurse, to ask her advice. By this time I was in a bit of a state myself but she was very calming. She agreed the antibiotics would not affect his muscles and also confirmed they would take a couple of days to take effect. The muscle pain was due to loss of tone through no exercise. After a long chat with her I felt so much better and so went to see what Pete was up to. I told him what she had said and repeated he would have to wait a while for some relief. He then dozed off until I went to bed and seemed calmer but still upset.
Today we woke up to the Pete I know and love! The leg pain was easier (had got worse because he was so angry I think) and during the day the antibiotics have kicked in. He has done a fair bit of walking around during the day - so, phew, things are now much calmer!
My sister, the fount of all useful information, also told me about jigsaw apps on the iPad. We have downloaded one so far and it is very good, can choose from 24, 48 or 96 pieces and a variety of subjects and can even make a jigsaw from one of our own photos!! We also found an app for 'spot the difference' puzzles - these are all so good for Pete to get his brain functioning well.
So, a light at the end of the tunnel at last!!