Poor Doug hit a really bad spot late on Sunday evening (23rd) initiated by a somewhat hurried move of bed space within the ward that placed him at the opposite end to the nursing station.
This seemed to completely destroy his sense of personal space and badly affected his confidence in his ability to control his environment.
This reawakened his feelings of insecurity and knocked his mood completely out of kilter - his feeling of frustration at his perceived lack of progress and his anger at all that he has lost returned in a trice, the consequence of which was a refusal to accept any intervention (feed, water, medication, physio etc.) and also a desire to be left completely alone.
However thank God, the good news is that, after an agonising couple of days he appears to have come round to accepting feed and medication as of 11 pm Tuesday 25th.
We were getting very concerned over his weakening state especially the effects of dehydration.
We can only hope that his mood continues to improve as the days pass.
Sheena and I have no way of knowing for sure just what he is going through but, from what he has said, it must be absolute torment and the fact that he is able to deal with it I believe says a great deal about him as a person. I'm sure he will tell me I'm talking rubbish when he gets round to reading all this for himself but ...............
So, on behalf of Douglas I extend apologies to those staunch friends who braved the Edinburgh weather in the last few days only to be turned away at the door so to speak. Your thoughts and kindness is now and always will be of immense importance to Doug as he struggles to come to terms with his own personal disaster.
Iain
Tuesday 25 November 2008
Friday 21 November 2008
Onward - ever onward .........
Douglas continues to do well with lots of little improvements that, in the great scheme of things, add up to a steady move forward.
Needless to say it's all too slow for Doug but I do believe he is now recognising that it does all take time and railing about lack of progress can change very little.
He is generally in very good spirits and, when the mood takes him, his sense of humour really reasserts itself. The other night I happened to make a remark about rather onerous loo cleaning duties in our caravaning days and that really set him off!! We all ended up in fits of laughter .... so much so that the nurses were coming over to share the hilarity!!
His next eye appointment is still to come on the 5th December and, as he says, we'll see what happens, but hopefully it will be good. He is resigned to the possibility he'll have to wear specs at least for the medium term, and if this improves his sight, he's happy to go along with it.
Swallow tests are now routine and the latest one had him, at long last, consuming coffee, albeit thickened to a custard consistence. He was in seventh heaven at this .... as he says he's a coffee junkie!! It's notiable that his mental arithmetic goe a bit skewy at this point .... his speech therapist ALWAYS counts more spoonfulls than Doug does!! :-) (His swallow response is very good but does need a bit of improvement before any attempt at solids and no-one is making any predictions about this just yet.
He is due for a full scale swallow test using fluoroscopy to investigate more fully how things are working but we haven't a date for this yet.
The main reason for this is that the left vocal chord is still not working properly (hence the rather guteral voice) although the right chord is doing its best to compensate but he still cannot cough in the same way we all do (seems to need a rapid closure of the chords).
Feeling in the left side of his face is slowly returning and now extends from the jaw line up to the cheek bone. Makes shaving a bit easier for him!! Hopefully this signals the possibility of a return of some muscular activity and, if so, it'll also help with his swallow and maybe his blink control.
His physio and occupational therapy continues with the focus on balance, standing and walking and in spacial awareness. He seems to be doing well at all these and his 'I'm just rubbish' comments do seem to have diminished in frequency. The staff are very strong on weekly and monthly goal setting and I guess this helps greatly in giving him a sense of achievement.
The gift from all his friends of a Sony DVD player (when he was in the Western) is really appreciated and he uses it a great deal now - even to the extent of enjoying biking DVDs (which shows great resilience I reccon).
He still has short periods of high emotion - sad news or kindness - but he can get through these without too much difficulty - all credit to him!!
As you can imagine, Sheena and I are much lighter in mood as a result, although we still find ourselves saying ' now don't get too confident in continued improvement .........'
Keep up the visits .. Doug really does love to see all his friends (even though you might have a problem getting a word in edgewise!!!)
Iain
Needless to say it's all too slow for Doug but I do believe he is now recognising that it does all take time and railing about lack of progress can change very little.
He is generally in very good spirits and, when the mood takes him, his sense of humour really reasserts itself. The other night I happened to make a remark about rather onerous loo cleaning duties in our caravaning days and that really set him off!! We all ended up in fits of laughter .... so much so that the nurses were coming over to share the hilarity!!
His next eye appointment is still to come on the 5th December and, as he says, we'll see what happens, but hopefully it will be good. He is resigned to the possibility he'll have to wear specs at least for the medium term, and if this improves his sight, he's happy to go along with it.
Swallow tests are now routine and the latest one had him, at long last, consuming coffee, albeit thickened to a custard consistence. He was in seventh heaven at this .... as he says he's a coffee junkie!! It's notiable that his mental arithmetic goe a bit skewy at this point .... his speech therapist ALWAYS counts more spoonfulls than Doug does!! :-) (His swallow response is very good but does need a bit of improvement before any attempt at solids and no-one is making any predictions about this just yet.
He is due for a full scale swallow test using fluoroscopy to investigate more fully how things are working but we haven't a date for this yet.
The main reason for this is that the left vocal chord is still not working properly (hence the rather guteral voice) although the right chord is doing its best to compensate but he still cannot cough in the same way we all do (seems to need a rapid closure of the chords).
Feeling in the left side of his face is slowly returning and now extends from the jaw line up to the cheek bone. Makes shaving a bit easier for him!! Hopefully this signals the possibility of a return of some muscular activity and, if so, it'll also help with his swallow and maybe his blink control.
His physio and occupational therapy continues with the focus on balance, standing and walking and in spacial awareness. He seems to be doing well at all these and his 'I'm just rubbish' comments do seem to have diminished in frequency. The staff are very strong on weekly and monthly goal setting and I guess this helps greatly in giving him a sense of achievement.
The gift from all his friends of a Sony DVD player (when he was in the Western) is really appreciated and he uses it a great deal now - even to the extent of enjoying biking DVDs (which shows great resilience I reccon).
He still has short periods of high emotion - sad news or kindness - but he can get through these without too much difficulty - all credit to him!!
As you can imagine, Sheena and I are much lighter in mood as a result, although we still find ourselves saying ' now don't get too confident in continued improvement .........'
Keep up the visits .. Doug really does love to see all his friends (even though you might have a problem getting a word in edgewise!!!)
Iain
Tuesday 11 November 2008
Back on track .....................
Douglas continues to amaze me!!
He overcame his immense frustration and anger and agreed to go along to the second eye appointment at the Eye Pavilion on Monday. The outcome was not quite what he had hoped for in that the remaining stitch was not completely removed but was 'lengthened ' to give around a 5mm opening. However it is a step in the right direction.
This is just enough to expose the cornea when he looks down. The intention appears to be to further open the lid in early December, assuming the eye condition does not deteriorate in the meantime. Vision is obviously fuzzy and will likely be so until it all gets used to being exposed and used and needless to say it can't come soon enough for Doug.
His mood has recovered quite remarkably - looks like I underestimated his recovery rate (again!!) although he can still get a bit agitated when the eye subject is raised.
He is due to go for an appointment with the audio consultant (a follow up on tests done last week) on Thursday 13th (afternoon) to review the hearing weakness on the left side and the options and, just as important, to convince Doug that using his right ear is not going to have adverse effects.
So I guess the message is ......... Let Visiting Commence!!!
With hindsight both Sheena and I find ourselves becoming perhaps over protective on occasion. forgetting that Doug is a 36 year old man and also that there are so many things that he alone must come to terms with. Having said that I'm sure we'll do the same thing over and over again in the coming months. Guess its all a part of being a parent :-)
Iain
He overcame his immense frustration and anger and agreed to go along to the second eye appointment at the Eye Pavilion on Monday. The outcome was not quite what he had hoped for in that the remaining stitch was not completely removed but was 'lengthened ' to give around a 5mm opening. However it is a step in the right direction.
This is just enough to expose the cornea when he looks down. The intention appears to be to further open the lid in early December, assuming the eye condition does not deteriorate in the meantime. Vision is obviously fuzzy and will likely be so until it all gets used to being exposed and used and needless to say it can't come soon enough for Doug.
His mood has recovered quite remarkably - looks like I underestimated his recovery rate (again!!) although he can still get a bit agitated when the eye subject is raised.
He is due to go for an appointment with the audio consultant (a follow up on tests done last week) on Thursday 13th (afternoon) to review the hearing weakness on the left side and the options and, just as important, to convince Doug that using his right ear is not going to have adverse effects.
So I guess the message is ......... Let Visiting Commence!!!
With hindsight both Sheena and I find ourselves becoming perhaps over protective on occasion. forgetting that Doug is a 36 year old man and also that there are so many things that he alone must come to terms with. Having said that I'm sure we'll do the same thing over and over again in the coming months. Guess its all a part of being a parent :-)
Iain
Saturday 8 November 2008
A bit of a setback ...............
Hi folks,
It's me again with a rambling update.
Doug has really been doing pretty well since his move to the Astley although, by his lights, his performance has all been a bit 'wubbish' and progress has been too slow.
There have been so many little improvements which, I can understand, count for little in his book, given his ambition.
I guess the underlying improvement has been in his acceptance of just how much has changed and therefore how much must be rebuilt and, ultimately, just how much of this has got to come from him and his efforts (although possibly the latter has not yet formed into any sort of cohesive plan).
To us, the most obvious indicator is that he has been talking about what will happen at Christmas time ..... I'll (Iain) drive to Dundee, Mhairi and Kirsty will do the food and we'll have a whale of a time!!! And then of course there's Heike and Nicks' wedding .................
And he'll have to find some way to earn a living and pay the bills cause .............
Oh, and for those in the know - he's had a rather fetching haircut!! All the long curls at the back have gone and although he's still got his sideburns, thet're quite a bit shorter. Sorry, but he refuses to let me post any piks!!
All this would have been unthinkable only a month ago!!!!!!!!
Unfortunately, on Thursday 6th his eye appointment was canceled at the very last minute and this really upset him a very great deal. He had been setting great store on getting the stitch out and having the use of his left eye again and the cancellation knocked him way back.
As a result he has become un-cooperative and has been refusing feed and medication and is insisting that folk should just forget about him and get on with their lives 'cause he's useless'.
I suspect many of you may have had a call from him saying not to bother coming in to see him.
Please remember, this is not really Douglas talking ....... it's all being driven by feelings of helplessness and a lack of conviction that things will ever get better.
We have decided to give him space to work his way out of this depression and would ask you to do the same please, at least for a few days.
He does have a replacement eye appointment at the Eye Hospital on Monday 10th, but whether or not he'll agree to go along remains to be seen. We can only hope ............ We can also only hope that the outcome is good from his point of view.
I shall do my best to keep you all up to date.
Iain
It's me again with a rambling update.
Doug has really been doing pretty well since his move to the Astley although, by his lights, his performance has all been a bit 'wubbish' and progress has been too slow.
There have been so many little improvements which, I can understand, count for little in his book, given his ambition.
I guess the underlying improvement has been in his acceptance of just how much has changed and therefore how much must be rebuilt and, ultimately, just how much of this has got to come from him and his efforts (although possibly the latter has not yet formed into any sort of cohesive plan).
To us, the most obvious indicator is that he has been talking about what will happen at Christmas time ..... I'll (Iain) drive to Dundee, Mhairi and Kirsty will do the food and we'll have a whale of a time!!! And then of course there's Heike and Nicks' wedding .................
And he'll have to find some way to earn a living and pay the bills cause .............
Oh, and for those in the know - he's had a rather fetching haircut!! All the long curls at the back have gone and although he's still got his sideburns, thet're quite a bit shorter. Sorry, but he refuses to let me post any piks!!
All this would have been unthinkable only a month ago!!!!!!!!
Unfortunately, on Thursday 6th his eye appointment was canceled at the very last minute and this really upset him a very great deal. He had been setting great store on getting the stitch out and having the use of his left eye again and the cancellation knocked him way back.
As a result he has become un-cooperative and has been refusing feed and medication and is insisting that folk should just forget about him and get on with their lives 'cause he's useless'.
I suspect many of you may have had a call from him saying not to bother coming in to see him.
Please remember, this is not really Douglas talking ....... it's all being driven by feelings of helplessness and a lack of conviction that things will ever get better.
We have decided to give him space to work his way out of this depression and would ask you to do the same please, at least for a few days.
He does have a replacement eye appointment at the Eye Hospital on Monday 10th, but whether or not he'll agree to go along remains to be seen. We can only hope ............ We can also only hope that the outcome is good from his point of view.
I shall do my best to keep you all up to date.
Iain
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