Things I Didn't Know About

Last night I went to the third meeting for Carers and came home with information about things I didn't know about.  Again it was a good meeting with lots to talk about - there are so many things that seem to be common to all our partners which I sort of assumed were peculiar to Pete, but if they all have them then they are obviously small things that affect the majority of stroke survivors but which you aren't told about.  The main two I can remember are: 1). Everything has to be done NOW, not in 5 minutes time but now. It doesn't matter what else you might be doing.  2) taste can be affected.  One lady said her partner seems to have lost a certain amount of taste and he says food is bland, so she gives him relishes etc to help.  I have mentioned that Pete seems to dislike some foods now and also that he has to practically have a plate full of tomato sauce with everything, which he hardly ever used to have before.  Someone used to have salad cream with everything and now won't have it at all.  It's very interesting to compare these things.

Then there was information about practical things I didn't know about - 3 in particular.  These are all schemes some of the others knew about, not information officially given out.

1). Devon Carers can issue a card, about the size of a credit card, that you carry all the time and it says you are a carer and gives information on who to contact if anything unexpected happens to you whilst away from home.  It has crossed my mind that I should have some information on me to say that Pete is at home alone and will need someone.  So this sounds good and I have rung them this morning to apply for the official card.  This is supplied free of charge.

2). Boots (aaaagh!!) supply pots for a scheme called 'message in a bottle'.  This is a little pot that you keep in the fridge (because most people have one!!) with information on the medication the person needs.  There is a sticker you put up saying you are part of this scheme and so when anyone has to come in in an emergency and you are not available to give details then they can quickly find all the relevant information. So I have picked one of these up today.  Definitely worthwhile and, again, it is all free.

3). We may be eligible for a reduction in our council tax (yippee!!). Apparently, if you are a carer for someone in the house (but not a partner/spouse) you qualify for a reduction but although this rule doesn't apply to us, we may qualify for another reduction because Pete uses a wheelchair sometimes in the house.  They are sending the form for me to complete and we have to get a letter from the GP but they said that, although Pete only uses the w/chair first thing in the morning as he is a bit unstable for a while when he gets out of bed, they think we may qualify. That would be useful.  But I do think that perhaps the information that some carers get a reduction and also you can qualify if a wheelchair is used in the house should be much more widely available.  Basically, when they leave hospital all you are told about is the Disability Living Allowance.  For a few weeks when Pete came home he could only use the wheelchair to get around but we would definitely have been able to get a reduction then.

So now I am much wiser than before and this is all useful information that you only find out about from word of mouth from other carers.

Bad Times

The bad times continue I'm afraid.  For a start I haven't been feeling too well myself, mainly I think just because of a build up of stress and worry.  I have had an almost permanent headache and also feel sick all the time - sure signs of tension!  Unfortunately Pete doesn't seem to take in how I feel so everything has to continue as normal - which is quite difficult to keep up.  But there is nothing else to do, just get on with it.  

I did go to the Carers' meeting on Wednesday evening and just being away from the worry made me feel better .... but then you have to come home again!  And nothing has changed!  Within an hour I had a headache again and felt ill.  The same last night when I was out with the Lovely Ladies and really enjoyed it and felt ok ... and then came home again!  This tells me that it is probably all in my head and I just need to try and relax a bit but, at the moment, there is continual worry about painkillers.  I have bought some over the counter but obviously I can't get any more than one box at a time and so, when they run out I really am stuck.  I'm hoping that it will be a different member of staff serving when I try and get some more.  Problems, problems! 

Pete has an appointment for the regular Botox on Tuesday which he is looking forward to as his arm and hand are so tight now.  

So we start another week - I hope it is better than the last.

Body Temperature

I have been wondering, and am now completely certain, that the stroke has affected Pete's body temperature.  It has got more noticeable over the last couple of months.  The first sign was when he suddenly, some time last year, found that a normal cup of tea and some foods were too hot for him to eat or drink.  But now he has also been finding it hot in the house, even when the heating isn't on!  Yesterday, after a long, involved question and answer session, he said he wanted some sleeveless t-shirts as against the normal ones.  I thought perhaps he was getting cold and wanted an extra layer, but no, today he has just been wearing the new one which is, basically, a vest.  So he is wearing a vest, a shirt and a jumper - and still getting hot.  Not hot to the touch, he just feels hot in himself and will discard the jumper at the drop of a hat!  Meanwhile, I'm wearing 2 t-shirts and 2 jumpers just to be comfortable, and sometimes a cardigan on top of that!  We can only have the heating on when he says so, otherwise he gets angry.  So half the time I'm shivering and he's only wearing a vest and shirt!!!   Now, normally this wouldn't have worried me to any great extent, but last night we saw a programme on how the elderly and vulnerable are coping with this cold weather - the main thing being when they don't put the heating on because of the cost - but they compared a lady who was very comfortable when her house was cooler rather than warmer and a man who kept the house cool because of the cost.  The point they were making was that if the surroundings are cold then their blood pressure rises to try to warm them up.  They found that both the participants' blood pressure rose as the temperature fell, even the lady who would rather do without heating, and this is dangerous for their health.  So now I am worried that Pete's blood pressure will be sky high as his body thermometer isn't working normally. But there is nothing I can do as if Pete feels hot, even when he actually isn't, then that is how he feels and he won't be told that it isn't good for him.  Just one more thing to worry about.

There are also stormy waters ahead in the next couple of days as the strong painkillers, paracetamol and codeine, he takes are about to run out and he can't have any more for a couple of weeks.  I have been warning him this was going to happen and trying to get him to cut down, but he won't.  We have already had a rage about it this morning when he wanted me to get more, and he is angry that he can't have any more than his regular prescription.  So, I am definitely not looking forward to the next couple of weeks when he will only be able to take paracetamol.  There will be much raging and/or depression.

There has also been a setback in getting the new catheter inserted.  Pete had an appointment today for the pre-op assessment and to get a date, but yesterday the hospital rang to cancel the appointment and the next available one is 13th February.  So I can see it is going to be a while before that happens.

Bad times.

At Last!

I have been wanting this for the last 18 months - and, at last, it has happened!!  Oh yes, oh yes, oh yes!  What am I talking about?  I have met other carers of stroke survivors in, more or less, the same place that we are!!!  

Obviously, although we so often feel so alone and that we are the only couple experiencing this, we did know that there were others but just couldn't find them.  However, that has now changed due to the meeting last night arranged by Rebecca, from the Stroke Association, and Bev, speech therapist.  It turns out that it is more to give support to carers than the actual person with aphasia (important though they are) and we could say what we wanted without fear of upsetting our partners.  There were 4 of us there which was actually a really nice little group as we had plenty of time per person and after Rebecca and Bev had introduced themselves then it was basically just the 4 of us talking about how we felt etc - the main thing we all felt was guilt especially when we just couldn't guess what our other half was trying to say.  We all have the same feelings of guilt, anger, frustration etc and we all feel sometimes that we just want to walk away for a while.  Also that feeling of 'oh no, not another day which I don't want to start' is common to us all.  

We are all about a year or more along this journey we are on with no chance of getting off.  There are slight differences in our situations, but, in the main, we are all in the same boat.  No-one has any answers or miracle cures, but just talking about it has been so helpful.  The time passed so quickly, it didn't seem like we had been there for half an hour, never mind an hour and a half!  At the end I felt so much better and everyone agreed it was nice to know we weren't going mad with all the range of feelings we have!  They are common to us all!!  

We will meet weekly for 6 weeks and, perhaps, we may be able to meet every so often after that (that is just me wishing) but, already, I am looking forward to the next one.

It seems to me that this is so very important because, as a carer, you always say everything is fine when it isn't and to be able to tell others who are not going to judge you, in fact they know exactly what you are saying, is an amazing feeling.   This is what all carers need - despite being told there is plenty of support out there,  in fact there isn't, certainly not support like this.  WE NEED IT.  Keep it coming I say!! 

So, tonight, I can finish feeling good for a change.

Oh yes, something I have just remembered is we discussed anti-depressants and all agreed our partners do need them but were very reluctant to take them initially,  in fact 1 person is still struggling to get his partner to accept them, I hope he can persuade her they are good and not an admittance of failure.

Rubbish Life!

Do you know that feeling when you either want to smack someone and scream at them or else you just want to sit down and cry?  Well, I know it all too well!!                                                                Today I have resumed my ongoing battle with Boots.  I went to collect the 2 items that were missing from Pete's regular prescription last Thursday, and also to collect my regular prescription.  I got one item for Pete and the other they will not have until 18th January, so helpful! Luckily we can last until then - which is just as well as Boots seemed totally unconcerned about it, just said there was nothing they could do. The fact that they had a month to order the item seems to have completely passed them by!  Then it came to my prescription - that seems to have totally disappeared into the ether, no sign of either the script or medication despite the fact that, again, they were ordered a month ago.  The pharmacist agreed to do an emergency prescription as it was a regular one - come back in 15 minutes, this after I had, again, stood there for 20 minutes whilst they scrabbled around claiming none of it was their fault.  Go back in 15 minutes to find one item still missing - by then I had had enough and also had to rush to catch the bus (or Pete would have got anxious that I hadn't returned) so decided to just take it and go and not argue the toss.  Did I want to order for next month - I really don't think so!  I am changing to another pharmacy as from NOW thank you very much! 

Why, oh why, oh why is it all such a bloody fight?  These places offer this infallible repeat prescription service which they totally cannot fulfill.  Apparently they are so very busy - not my problem, don't offer the service if you can't do it.  They also offer a new service now whereby they will text you when your prescription is ready - really? Even though they don't have time to fill regular prescriptions as they are so busy??  Nuts!!  End of rant! 

On the up side, with the sound exercises we do ..... Pete can now say my name!!  Yay!! Progress.  He can't process to use it when he wants me yet but, hopefully, that will come sometime in the future.  It is a major lift, for both of us, that he can actually say it.  

It is steps like that make us keep up the fight against aphasia.  One tiny step at a time. 

Strop from Pete and Strop from me!!!

Today Pete was due for his regular 12 week catheter change, which always worries me a bit as this is the worst time for infection.  However, it went ok with the nurse arriving nice and early at 9.15am so we didn't have hours of waiting for her to come.  The new catheter comes already connected to a leg bag (which has to be changed once a week) and Pete, for some unknown reason, took exception to this and insisted the leg bag be changed for one of the ones we use regularly.  I said it didn't need to be changed and the nurse also said it was best to leave it as it was all sterile and didn't need to be changed for a week.  But, no, Pete wasn't having this and decided to have a strop with much shouting! The nurse, being new, was a bit startled at this display of bad temper and so I had to change the bag there and then.  This, again, is a problem with the aphasia as Pete couldn't tell us why he objected to the original bag.  Anyway, it is now done probably until he has the suprapubic catheter inserted - and then it has to be changed every 8 weeks instead of 12.  

Now to my strop!  I trotted along to the pharmacy (and to name and shame them, it is Boots) to collect Pete's regular monthly prescription of pills, potions and catheter bags.  Their system is that when you collect the prescription you tick everything needed the next time and the object of the exercise is that when you arrive in a months time the prescription is ready to collect in full.  Well, that is what is supposed to happen, but, for the third month running, I have arrived to find it has not been done and also some items are not there so have to go again to pick them up.  It took them 10 minutes to find the actual script today, then 15 minutes to get it together and discover what they didn't have, and then another 5/10 minutes to wait for the pharmacist to check it.  So half an hour instead of about 5 minutes and, even then, not all items there.  And that is not counting the queuing time before you are attended to!  I made it very plain I was not happy.  So, I have decided I need to find another pharmacy who will, I hope, be much more efficient.  Most pharmacies do the repeat service so I should be able to find one I hope.  To rub salt into the wound, you can be in the queue waiting but when a drug addict arrives it appears they go straight to the front and are attended to immediately with sharps bins and whatever they need being produced at once!!  Why is that?? 

I have had a phone call from Rebecca at the Stroke Association about the meetings that are being started next week.  It seems they are mainly for carers of people with aphasia so we can talk about how we cope etc and, hopefully get some support.  So, I have decided I will definitely go next Wednesday evening and find out what goes on.  I will report back to you all!! 

Having got all that off my chest I will sign off for tonight! 

Still Low

I am very tempted to tell you all how it is - with no holds barred!  But that is far too depressing for everyone.  

One good thing that has happened is that Adrian got some replacement wireless headphones sent (and they did arrive safely, that is, the postman came back with them a half-hour after his first delivery of mail saying he had forgotten them on his first visit?? Odd!!) and I managed to set them up alright and they work brilliantly.  Pete can even use them in the bedroom with no problems.

Other than that, every day continues the same.  We are both very down, Pete again spending much of his time staring at the floor, even when the tv is on with programmes he would normally be interested in.  Nothing I suggest he do is of any interest to him.  When he is like this it is very hard to be positive, therefore I am down there with him.  

So, nothing else to say really.

A New Year

Another year done, a new one beginning.  I think back to the start of last year when we still hoped for great things, well, that is all gone now and I certainly can't see this year being any better.

It is with certainty that I can say miracles do happen - only not for us.  A friend whose mother was on the heart transplant list got the call to London today and I am so happy for the family but, rather darkly, at the back of my mind lurks the thought, why can't WE have something good happen?  Even my Christmas gift for Pete was stopped in its tracks.  Jealousy is not a nice trait.

We watched a film a few days ago and one character said "hope is a dangerous thing, it gives you a false reality" but then another said "but hope is a good thing, it keeps you going" - I don't know which of these I now believe.  I try to keep hope going but it is getting more and more difficult.  We continue to try to beat the aphasia with the writing and sound exercises but, even though Pete can now actually say a very few words by putting sounds together he is totally unable to use them outside of the exercises.  I met someone I used to work with a few days ago who I had not seen for 2 or 3 years so told her about Pete's stroke and that he had no speech now - this brought the usual response that he can write notes, draw or gesture, on telling her that none of that is possible, what did she say "oh well, at least he can't argue with you or moan at you" !  Yes, fantastic, just what I wanted to hear!  At that point I made my excuses and left (as they say).  

One other thing that is difficult for me is seeing other people getting on with their lives with all the natural joys of each day.  Then you get others that moan about their life when they really don't appreciate what problems others have to deal with.  I freely admit that I used to be like that - the only thing that did affect me was seeing parents with children with many many health problems and this always made me thankful that our boys were healthy, but other than that other people's problems mainly passed me by  - I wish now I had not been so selfish but had stopped and really tried to understand their lives.  But, on the other hand, I don't think anyone can truly understand unless they have been there themselves.

As you can see I am, again, in a very depressed phase.  I think it is comparing our pre-stroke life, after-stroke life and how it is now and I see yet another year stretching ahead with nothing getting any better.  Communication is the life blood of all humans, indeed we even try to communicate with other species.  Being able to talk about anything and everything whenever you want is something we don't think about until it is gone, so, please, all of you, appreciate the gift of speech and/or writing. 

And, with that thought, I will leave you.