Insular World

I now live in a very insular world!  Every week is the same, day in and day out.  Pete seems stuck in limbo still - the only thing different is that next week he goes in to have the suprapubic catheter inserted.  This is a worry, we have to be there at 10am but don't know what time he is scheduled to have the procedure.  However .... hopefully I will get a bit of inside information as to where he is on the list so will have some sort of idea how long he will have to hang around, but if it is too long then it probably won't happen.  We will see.  

Anyway, back to my world - it has shrunk beyond belief really.  Everything centres around Pete and what he wants and needs.  I hardly see anyone now whereas when I worked I met so many people and talked about everything and anything - what was going on in the world, etc etc. I also knew all the ins and outs and ups and downs of people's lives.  I couldn't imagine living without buying a newspaper every day - now I only buy one on Saturdays and that is only for the TV magazine!  Nothing now is of any particular interest to me - it's very hard to explain why, but my priorities are Pete, Pete and Pete. Of course there are certain news stories that are of interest but whereas before I would follow events avidly and read all interviews etc., now I just see the news twice a day and that is it.  Pete and I used to discuss all the world events - sometimes we had quite animated discussions about some politics!  We had to agree to disagree on a few subjects!  But that is all gone - I suppose this is part of why I am not interested any more, because there is no one to talk to anything about. 

So there it is, that is my world now.  Having said that, I am very much looking forward to next Saturday as it is another Lovely Ladies evening - we haven't been out for ages and, boy, do I need it!! 

Support

Support is so very important.  Anyone in our situation needs support of all different kinds - and I think, at last, I have got it all covered now as far as I am concerned.  Unfortunately, I can't say the same for Pete - but the question is, what support does he need?  Ideally, he needs the support of someone the same as he is, but that wouldn't work as he can't communicate his feelings or thoughts and someone who is the same wouldn't be able to either!  I think he should have continued with his psychology sessions but he always told her he was fine so they stopped.  He is always so terribly sad - and who can blame him.  I know I keep saying it, but I do now think he needs a higher dose of antidepressants, but he says no.  So we still go on in limbo as far as he is concerned.

My support network is now complete - it took a long time but there you go.  Of course we both have the support of our family who are always there for us and they are vitally important to us.  I also have the Lovely Ladies who I go out for a meal and drink with every couple of months and they also come round individually to see me and keep me up to date with what is going on in the world, and I can relax and have a good gossip and laugh with them - again important.  Finally, I now have other carers to talk to.  Last Friday was the first informal meeting we had and, unfortunately, only two of us were able to be there but, no worries, we had a really good chat and talk and, indeed, talked about a couple of subjects that had not been mentioned in the previous meetings with professionals.  I came home feeling uplifted again and able to go on again.  We haven't made a definite date for our next meeting but agreed we would text each other when we felt we needed to talk and we would meet up.  I have been thinking about it and I think we perhaps should make a definite date as then if anyone else wants to join us they can and they will know where to be and when.  But, just knowing I can ring someone at any time is a good.  There must be so many people out there who need to talk but know no-one in the same situation.  So, carers for people with aphasia ..... Get in touch! 

I will finish as I started, support is so very, very, very important.  

In Limbo

No blog for a week as I have still been feeling so low - don't want to do anything or see anybody!  But on Tuesday one of the lovely ladies texted to see if she could come over, my initial reaction was No, but then I made up my mind that if I carried on feeling sorry for myself then things never would get any better so replied for her to come today - and now I am so glad I did.  Ashton came over with Lady (her springer, who spent the entire time dozing off on the sofa!!) and it did me the world of good to chat and gossip (!!) with her, she is a lovely young lady about 35 years younger than me but we really get on, we always worked well together and she, along with the other 2 lovely ladies, support me no end.  

Having decided to see Ashton, then another old workmate rang yesterday and said she would like to pop in this morning for a coffee and a chat - so having decided to pull myself together, we arranged a time for her to come.  I haven't seen her for about 4/5 years so lots to catch up on and gossip (!!!!) about. 

Therefore, today has been a really good one for me and I now feel so much better and have concluded I must not let myself slide right down like that again - it's up to me to sort myself out.  

Meanwhile, Pete seems to be in limbo, if not sliding backwards.  Although he can now get his leg up enough to get his trousers on, he is using the w/chair almost all the time, only using his stick for the few steps from his chair to the table.  He is back to how he was when he first came home from hospital, only on a lot more medication and not anywhere near as positive as he was then.  So that is not good.

I think I did mention previously that we had applied for a reduction in council tax because Pete uses a w/chair in the house - well, we heard yesterday that they have approved it and have also back-dated it to September 2012 when he came home.  Positive outcome.  But, perhaps stupidly, I wonder whether fate decided that if we have the reduction then the wheelchair must be used more often!!! 

I am still scared and worried for the future but I do feel more able to cope at the moment.

Almost there - but not quite!

Pete is almost back to normal now, but not quite.  

On Sunday Pete had to make a very determined effort to help himself as my back decided to register its disapproval of what I was doing!!  I ended up on full quota of painkillers aswell as Pete!  Anyway, during the day he managed to sit himself up and also pull himself up the bed.  By Monday he was able to get out of bed ok, sit up ok, pull himself up the bed, transfer from bed/wheelchair etc.  The only thing he still couldn't do, and still can't today, is get his right leg off the floor enough to get his trousers on so I have to help with that which is fine.  The other thing is that he still can't walk much and is still insisting on using the wheelchair to get from room to room.  No doubt this will improve with a little bit of a push each day.  

I have been in a very bad place for the last couple of days - it just sometimes seems such a battle to just get through each day, and what the future holds is anyone's guess.  Unfortunately I can't seem to foresee anything improving much.  It is hard to believe that this time last year Pete was doing so well that I was preparing to return to work.  It is now about 20 months since the stroke and things went really well for about 10 months but then the following 10 months have just been absolute hell for both of us. 

I am trying very hard to get my head together again and move on and it seems ridiculous to be feeling so low when Pete is getting better, but that just seems to be the way I feel.  The future really scares me at the moment.

Infections!

We are now one week on from when Pete started being quite poorly and, I have to say, at times I did wonder whether he would ever get out of bed again, but, thankfully, although by no means back to normal, Pete does seem to be improving a bit.  

I rang the surgery on Tuesday for advice and they said they would get a doctor to visit on Wednesday as then he had done 3 days on antibiotics and should be getting over it.  Luckily it was his own GP that came on Wednesday (I was a bit concerned that it would be a random one unaware of his full history) and after examining Pete he said he had a chest infection aswell and the two combined had just knocked him for six.  He changed the antibiotics and said I should notice a difference in 24/36 hours but if he was no better, or getting worse, to ring again on Friday.  He did start to make slight improvement in that he started eating again and wasn't quite so unsteady but he still couldn't pull himself up.  Yesterday (Friday) Pete did manage to sit up on the side of the bed to eat and also was able to transfer to the wheelchair/toilet/bed much more easily, however he still had to be pulled up and propped up in the bed.  

Today he still can't get himself up but I think it is something to do with his right leg causing him a lot of pain.  He can't walk with the quad stick but has to use the wheelchair to get to the bathroom which isn't too good.  This afternoon he did come to sit in the sitting room for 3 hours which is the first time he has left his bed (other than bathroom trips) for a week.  I think he is getting better but the big problem is that right leg - the trouble is that the muscles are wasting and contracting through lack of use over the last few months and so he finds it increasingly difficult to move it.

Hopefully Pete will now continue to improve but if he still has problems pulling himself up I will ring the doctor again on Monday.

On the up side, he has now mastered the art of using my name when he wants me and has to shout for me!!!! 

And Again

And again Pete has a raging urine infection.  On Friday and Saturday he wasn't himself and lay on the bed for most of the time although he did get up, get washed and dressed and came into the sitting room for meals and to watch tv.  On Sunday morning though he couldn't even sit up by himself, never mind get up.  He seemed very weak and I literally had to pull him into a sitting position by getting my arms under his armpits, and hauling him up the bed, not easy when it is 9 stone of dead weight.  He then tended to lean to the right and had to be pulled upright.  But then he got hotter and after finding he had a very high temperature I rang the out of hours service for advice.  They said he had an infection and prescribed antibiotics which we started straight away.  On Monday he seemed no better apart from his temperature had gone down and he still needed to be pushed and pulled up the bed.  His urine is very very dark.  I told him to drink lots of water to flush it all through - which he did, and the colour got lighter, but this morning it is back to how it was.  He still can't sit himself up or move up the bed so I have had to put two large cushions behind him to prop him up as I physically can't do it any more - my arms feel like they have been pulled out of their sockets!! 

We are on the third day of antibiotics so I am hoping there will be a bit of improvement soon, but if not then I will have to ring his GP.  

He has now been in bed for 3 days which is worrying in itself.  He can't sit himself up, move on his own or stand up so I am very concerned.  But, and this is the thing, at what point do I call a doctor? I hate being here on my own with him and not having anyone to discuss it with and get their opinion on what I should do.  Sounds pathetic doesn't it that I can't make decisions on my own. Is it all part of the infection or is there some other reason his right side seems to have seized up?  

I am just spending the days drinking coffee/tea, smoking and worrying.  

The outlook doesn't seem good at the moment.

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.