Meetings for Carers

We had the final meeting of carers last night.  As I have said before, we find great solace at these meetings and I have also said I would like them to continue.  Well, they are going to!!! Yessss!   The two ladies who have been running it did suggest we could continue on our own, informally, and we agreed we would like to.  I know I am repeating myself, but just to be able to talk honestly is the best feeling, and to find others feel the same is a great relief.  Although it doesn't absolve our feelings of guilt, etc at how we feel - we all feel the same and we are allowed to have these feelings.

Anyway, we are going to meet up monthly and the first get together will be on 21st March.  There will be no formality about it, no set agendas etc. just some carers having a chat.  Rebecca and Bev are going to pass the word around and, hopefully, some other carers of people with aphasia will join us.  I know if there had been anything like this several months ago I would have been there like a shot.  Just to meet others struggling like me. 

I don't know the people who read my blog but if, like us, you care for someone with aphasia, or know anyone who does, and can get to Barnstaple, then please get in touch and we will welcome you with open arms.  Anyone who is interested can email me at shirleypdutt@gmail.com or contact me on Twitter @ShirleyDutt  and I will gladly give you details.  There must be more than the 3 or 4 of us that have been at the Wednesday meetings.  Now that we have got this organised there is no need for people to struggle on their own like we all have been doing.  I really hope more people can come.  The meetings will be in the evenings.

Meanwhile, things continue here as before.  We are actually making progress with the writing and speech that we are doing.  Pete can now write several family names with only a few hiccups on the way, just the odd letter here and there are still problematical.  Illogically, it is not often the same letter each time.  But a few months ago Pete couldn't write any names on his own (other than his own name which he has always been able to write). We also do a few other 2, 3 or 4 letter words and they are all improving.  So, although it is sometimes a bit of a tedious chore, it is well worth it.  Speech is another matter though in that we have been unable to incorporate any new sounds, but every day we go through all the sounds and words he can say - the day he actually then uses them will be amazing.  He has, once, called for me by my name but has not done it again.  But I think this shows we are, slowly, getting a few connections in his brain.  It can only get better! 

One tiny step at a time is indeed what is happening.  

I will just reiterate that PLEASE, if you care for someone with aphasia and are struggling with the life cards you have been dealt, GET IN TOUCH.  We can all help each other. 

Procedure Booked!

Well, the pre-op assessment went ahead!  They were very good and understanding of the situation and the procedure to insert the suprapubic catheter will happen on 3rd April.  They did say they could book a date in March but it would probably be cancelled but April dates should be ok, so fingers crossed it goes ahead on that date.  I explained that Pete is unable to control his emotions and would not be able to wait too long before getting very angry and I would have to take him home, and she fully understood this and explained it to the booking office, she did ask for a first appointment but we have been given 10.00am as the time to be there - so will see how long we wait.  When we went in the nurse told us she had weighed Pete's notes, just for interest, and they weigh 4kg!  Quite hefty now!!! 

The carers' meeting went ahead again on Wednesday and, unfortunately, it was the penultimate one.  I am still thinking of mentioning us meeting up perhaps monthly or something as I think we are all finding great solace there.  Just to be able to talk and know we all feel the same means a lot.  There is no-one else that we can ever talk to so honestly and say how it is and how we feel. 

Yesterday my sister came up for the day and it is quite a trek at the moment as she has to get on a coach for part of the journey as the railway line at Dawlish was washed away!!  We had a brilliant time just talking - her daughter gets married in July and it was great to hear all about the wedding preparations.  I don't know whether Pete will go or not, he wants to but I don't know whether he would be able to stand such a long day and the journey there and back.  He gets very tired easily now and hasn't got much stamina.  Again, it is just a case of wait and see what he is like nearer the day.  Yesterday, whilst Wendy was here he was very anti-social and went on the bed!  But, there again, he spends most afternoons there now just having a rest and snooze.  

Meanwhile we just go on as usual - every day more or less the same, Pete no better and no worse and me just getting on with it, as I have to!  

Oh yes, and we have had a letter from the GP confirming Pete uses the wheelchair in the house and so I am hopeful we may get a reduction in council tax, but it is by no means certain.

Anxiety

I know it is a very common complaint but it seems that I, along with loads of others, suffer from anxiety which is affecting my health.  This is probably the cause of my headaches and often feeling sick.  I had to attend a clinic at the surgery last Friday and had to answer lots of questions about how I feel - I can't really remember them but I do remember the last one being 'do you have a feeling of dread that something really bad will happen?' - the answer was yes!  It was suggested that I ring some stress/anxiety counsellors, but what can anyone do?  The fact is that I worry continually about Pete and no amount of counselling is going to remove that worry.  The only time he is not on my mind is when I am asleep!  So, I am sure we all now feel much better that I know I have a high level of anxiety!!! 

But what to do about it? Nothing I am afraid.

We had another carers' meeting last Wednesday and I am sure, indeed I know, we all have the same levels of worry and ask ourselves the same questions over and over - how are our partners feeling, what are they thinking, what will they do if something happens to us, what will the future bring, will something awful happen, etc. etc. and on it goes - there are no cures for this sort of anxiety.  So, stalemate.   One of the other carers asked if we ever feel sad - definitely a yes to that.  It is sad that our partners have, basically, had their futures snatched away and it has come to this.  You never think it will happen to you, human nature to think that, and it is a devastating shock when it does happen and you look around at others of the same age etc and wonder 'why us?'  And it is us, when you are a close couple then it affects both of you and both lives change beyond recognition.  

Pete has a pre-op appointment tomorrow afternoon which, so far, hasn't been cancelled so I am hopeful we may get a date for the new catheter.

On a brighter note, Adrian and Amie went to the BAFTAs last night!!  I will put up a photo of them both looking very very smart!!  Adrian is the absolute image of how Pete used to look at that age.

Moving on

I haven't posted for several days because I have been busy most evenings practising for my driving theory test, which I took today and I passed!!!  Yesssss!  I am feeling quite pleased with myself as I was really nervous - I'm too old to be taking tests!!  The next thing, of course, is the actual driving test which is going to be really nerve wracking - but, hey ho, on we go, it has to be done! 

The other good move is that, yesterday, I went to pick up my regular prescription from Tesco and it was all ready and waiting for me.  If you remember, Boots (aaaagh) managed to lose my prescription completely last month so this is a good result.  I have also moved Pete's prescription now to tesco - I picked up the missing bits from the last one yesterday so, hopefully, won't have to go back to Boots again.  We will see how tesco do next month.

We had a session with Candy (psychologist) yesterday and it went well.  Pete indicated he was fine with no major mood swings now so we have decided she doesn't need to come again - but if I feel Pete isn't coping again then I can give her a ring.

I think we have more or less accepted the routine of our lives now - we know there will be no major steps forward, but there may be a few tiny tiny ones if we don't give up.  

There is the carers' meeting to look forward to tomorrow so I hope it won't be cancelled again.

Pete continues to have pain in his right leg which is a bit worrying, I may have to ring the doctor and see whether we can increase the nerve blockers - even though he is on 9 a day at the moment! 

I will say goodnight now - at least I should sleep better tonight!!! 

Putting on Weight

We had an unplanned visit from the district nurse today - she popped in on the off chance to weigh Pete and he has put on 2lbs which is really good, but I can't remember when he was last weighed but it was definitely before Christmas so, possibly, he should have put on more!!  At least it is going up though so that is a positive.

Pete seems to be having pain in his right leg over the last few days which is making him miserable - no change there then!! 

Today was the day I was due to visit Boots (aaaagh!) to collect Pete's regular prescription.  I had to go early as he was desperate to get his strong painkillers!  Actually it wasn't such a long wait today as they didn't seem so busy - but I still had to wait for it all to be made up and, again, there is one item missing which I have to go and collect tomorrow.  I made the decision last month to change pharmacies so have got the list of his repeats to take to tesco - we will see how they do!  It can't be any worse though!! 

Pete didn't even get out of bed today until 2.30pm as he didn't feel so good (luckily he had just got dressed when the nurse came) but seems a bit better tonight. 

There was no carers meeting last night unfortunately but they are going to add another date on at the end to make up. 

And so we go on.

And Here We Go Again

For a few days last week Pete was complaining that he had a discharge round the catheter entry point, but I had been told this was natural at times so, to my shame, I got annoyed with him going on about it and kept telling him it was normal.  However, on Friday he seemed quite unwell.  Nothing you could put your finger on, just really really quiet and upset and wanted to be on the bed.  So I rang the district nurses to ask their advice and she said she would refer it to the duty doctor and get them to ring me, which they did quite quickly.  The doctor said it sounded like thrush and had he had it before?  I said no although he was prone to infections - she said she would prescribe some cream and ring again if that didn't work.  However, when Martin (what would I do without him and Mel) collected the prescription, it was actually for his usual antibiotics which Pete started straight away and they seem to have done the trick again thank goodness.  I thought at the time, I hope we can get this suprapubic catheter in soon.  Bad thought!!!  On Saturday a letter arrived cancelling the pre-op assessment booked and re-scheduling it for 18th February - so that's twice now it has been cancelled.  Bound to be a third time!! 

I have received the forms to fill in to apply for the Alert Card and a reduction in Council Tax, but haven't filled them in yet - just looked at them and thought I will do that tomorrow.  It all seems so complicated but I must do it - it all just seems just more hassle and energy and fight.  One of the other carers from Wednesday evenings said she also had these feelings and just doesn't have the mental energy to go down yet another road.  

Also yesterday Pete was very very shakey when walking and when he was writing his left arm and hand were shaking. Don't know why.

I keep looking back (which you shouldn't do) to this time last year when he was doing so well - what went wrong?  Will things just deteriorate or will they get better? 

Time will tell.