16 weeks on....

So what's been going on this week to update you on Dad's stroke recovery...well....

On Wednesday we were informed that the nursing home we are interested in for the next phase of Dad's recovery were coming to carry out their assessment on Dad next week.  Eventually it was confirmed that a PCT representative who sits on the weekly meetings at NG had instructed them to contact the care home.

From this information we guessed that the PCT had made their decision about Dad's funding needs.  After waiting all day Tuesday and Wednesday and not receiving a call as I was told I would,  I contacted the nurse at the PCT myself to get the information.  She confirmed Dad had not been approved to receive funding.  She said she'd marked Dad's cognitive score of 'severe' down to 'high' based on the clarification from NG that Dad is eating a substantial diet and his PEG feed is being reduced (this is surely down to Mum's perseverance with Dad's eating habits), and that he has not suffered from any 'altered states of consciousness'.   The nurse confirmed Dad's behaviour score was also 'high'.  We will have to continue to appeal, as there is surely no way that the £108 nursing contribution per week will cover the cost of Dad's future care needs....it would barely pay for one days care a week.

As well as speaking to the PCT, I also spent my morning speaking with Dad's social worker - who didn't tell me anything new, and Dad's physio.  The positive the physio gave me was that after having two weeks off and coming back to assess Dad, he had not deteriated! She advised they were continuing to do stretches in bed with Dad and that he does them well, but he needs to focus more.  She explained that when they go in to see Dad in the morning, more often than not he has his head under the sheets and he says he does not want to get up.  His routine is to get up mid morning or before lunch - although this week he did get up at 9.30 one of the mornings.  They are still trying with the 'stand turner' but due to the increase in tone in his left hip and knee when he stands - there is little contact with his left foot on the floor which prevents him from baring any weight on his left side.  She explained the Stroke Community Rehab Physio would be coming out to assess Dad (they are the team who will continue Dad's physio when he is back home or in another nursing home that doesn't have their own physio) and also the Orthopedic Department from the hospital to reassess splints and braces for Dad.

The Stroke Community Rehabilitation Physio carried out her assessment with Dad's current physio. They worked together with Dad for an hour and explained to us after that Dad had been very responsive.  The verdict was that Dad still has muscle in the top of his left arm and in his thumb which was positive.  I have to say Dad's left thumb is noticeably much more flexible than his fingers on his left hand after their session.  They have made the decision to take the 'gutter' off the left side of Dad's wheelchair as it is not suitable to rest Dad's arm in and it causes him more pain.  They will write to follow up the Consultant's request for botox as they think this will assist with Dad's physio.

The man from the Orthopedic Dept also visited as discussed.  He advised on what braces would be most suitable for Dad's needs and to help him make progress.  He will order a new brace to support Dad's left ankle and foot - it should help in turning Dad's foot inwards so his foot is flatter to the floor and will allow him to weight bare. The brace is to be worn with sturdy trainers or shoes.  He did say Dad's current ankle support 'had seen better days and had parts missing' and that it wasn't doing the job of supporting Dad's ankle and keeping his foot flat to the floor...great - he's only been wearing it 11+ weeks.  Dad will also have a splint ordered for his left arm which should be 'comfortable to wear and help ease the pain'. With the botox as well - this all sounds very positive.  However, sixteen weeks seems a long time to get to this stage....but what do I know...?

I played catch with Dad this week with a small soft rugby ball that a relative had kindly given him.  I noticed that although he is quite strong on the right side of his body, he is unable to grip the ball to catch it - instead he bats the ball back with his palm or defends it.  We have therefore been encouraging Dad to squeeze the ball to help improve his grip.  He has also been complaining of pins and needles in the fingers of his right hand, so we hope this strengthening action might help. 

Unfortunately we have been informed of two incidents this week where Dad has put his fist forward again towards the carers.  This is happening when the carers are either getting Dad out of bed or putting him back in.  Dad is still being transferred by the hoist which doesn't look at all comfortable, and we hear him shout out in pain when using it.  On the first occasion Dad's 'jab' was blocked before it made contact with a carers face - and on the second, it caught a carers arm.  We have also been informed that Dad has been using offensive and abusive language during the hoist transfers.

The only thing we can think that has changed this week to make Dad more frustrated is that he has been taken off anti-depressants at the request of the psychiatrist - remember he said Dad is 'emotional' not 'depressed'.  But if not having the tablets is making Dad more emotional again i.e. becoming upset when he sings or sees visitors, then they are also making him become more frustrated - another emotion.  I think we will have to speak to the nurses or Doctor to see about putting Dad back on them.  Dad also broke down this week during one of the patients family party's when they sung 'Happy Birthday' - whether this brought back memories of family gatherings I don't know?  Of course I asked Dad why he was upset but he didn't have an answer.

On a more positive note...it was good to hear Dad ask Ash, when we took her to visit him on Wednesday evening, 'So when do you go back to school then Ash...?'  A question asked and in context - was that a fluke or were Dad's pathways in the brain connecting correctly at the time?

I know I put out a request last week asking for people to come and visit Dad who hadn't been to see him yet...but we didn't expect a donkey to turn up!  Very random - but a donkey did visit the home on Friday and I got photos of Dad stroking him.  It put a smile on Dad's face - although half an hour later Dad didn't remember seeing it.  If Dad's short term memory doesn't come back it is going to be very difficult for us all to live with.

Another positive is how much Dad is enjoying his food.  He continues to eat his lunch and dinner - still no breakfast though.  He looks forward to the homemade soups and often says 'compliments to the chef - that was delicious' after he has eaten. Dad is totally off coffee and tea and will only take sips of his thickened squash if we insist, most of the time he tells us he is not thirsty. The SALT nurse also visited again this week - her aim was to get Dad to have drinks without the thickener.  She tested Dad's muscles in his throat by getting him to sip normal water while she held her stethoscope to his throat.  Unfortunately the water remained resting in Dad's throat, which could result in it going to Dad's lungs and causing an infection - ultimately pneumonia.  She advised there is still plenty of time for Dad's throat muscles to start working again, although in some patients the muscles never come back.   Dad's weight is monitored weekly and we were advised he is sustaining a healthy weight.  Before Dad had his stroke he weighed 87kg (13 stone 7lbs), he now weighs 77kg (12 stone 1lbs).

Mum and I found it quite comforting and reassuring to speak to the wife of one of the other patients at NG this week.  Her husband had a similar stroke to Dad (within five days of each other) and has been left with similar disabilities to the left side of his body.  When discussing our experiences she confirmed she is going through the same - i.e. the fact that like Dad, her husband will liven up and perform in front of an audience or group of visitors and that he is also obsessed with going to the toilet and asks to go again even after he has just been, and that he has developed a sometimes childish sense of humour too.  Tonight I have had a text from Mum to say Dad's been singing (again) while he was having his tea, and the ladies husband sitting at the next table, has been encouraging Dad and egging him on - oh eck!

She also confirmed that she too felt that she was receiving mixed messages and that it would be helpful if there was one point of contact who could co-ordinate the information and help plan the next steps giving support and advice...I'm aware this is something the Stroke Association are campaigning for from the NHS.  

So we are not alone...there are many people going through the same journey as our family.  I hope they are as lucky as we are in having as many supportive loving family and friends as Dad has.  To the visitors that came for the first time last week or this week - thank you for acknowledging my request for your support - it is appreciated SO much.  I'm not sure how much longer Dad will be at NG, but I know we have to make decisions - we will hopefully know more after tomorrows assessment.

Thanks for the read and thanks for the support...I hope the photos below make you smile.

Love you Dad x

Dad and the Donkey!

Dad with his brother Frank
(not to be confused with the donkey) ;-)

100 Days...

Saturday marked a milestone in Dad’s recovery as it was 100 days since he had his stroke.  Mum has been at Dad’s side every single one of those 100 days – it’s clear to see that their marriage is solid after 42 years and that they truly meant it when they said ‘in sickness and in health’.

I am pleased to say Mum agreed to have a ‘day off’ on Sunday.  We took her to celebrate a 90^th birthday and it was good to see Mum catching up with her family.  Dad’s brothers’, sister and their other halves looked after Dad on Sunday – it sounds like he had a good afternoon engaging and interacting with them, laughing and joking.

And so to the events of last week...Following on from the 'jab' Dad gave an OT recently and the fact he sometimes fends off the Nurses when they come to give him his medication and injections, Dad was referred to a psychiatrist due to ‘behavioural’ problems.  The psychiatrist met with Dad on Thursday in the presence of Mum and his sister.  The verdict from the psychiatrist was that Dad wasn’t harmful and that he jabbed the OT due to the pain he was experiencing and nothing more sinister.  He advised Mum that the medication he could prescribe would make Dad very drowsy and take years off his life, but he saw no reason to prescribe the drugs – Mum agreed. 

It was therefore frustrating to hear on Friday that one of the Doctors at NG had signed off the drug to allow the Nurses to administer it three times a day if necessary – which clearly isn’t going to help Dad’s progress. It was also dropped in to this conversation that Dad had been put on a behavioural chart – which was news to us, so we asked to see it.  I think several residents and their visitors also found out about Dad’s chart at the same time as it was shouted out in the dining area for all to hear ‘Has anyone seen Alan Skett’s behavioural chart’ – yes, thanks for that…nothing like a bit of patient privacy.

This chart is to document Dad’s behaviour at each hour during the day and had been started on Thursday, so not sure why we, as Dad’s family, hadn’t been consulted?  This now explains why one of the carers came in to Dad’s room when we there on Friday afternoon, pretending to look at the label on Dad’s bed.  She had the chart in hand and was apparently able to make a three hour assessment based on less than 10 seconds in the room and without any interaction with Dad. It is immensely frustrating that we are treated as though we are stupid.  It would be appreciated if proceedings were conducted openly and honestly with us being informed – you never know, we could even work together for the benefit of Dad – or would that be too sensible?

The PCT got back in touch this week.  The panel have requested further evidence as to why Dad has scored a ‘severe’ for cognitive.  It doesn’t help that the copy of Dr B’s report we have received this week states Dad’s cognitive ‘is back to normal’.  I suggested that the PCT Nurse also reviews the score for Dad’s behaviour.  Clearly if Dad has been referred to a psychiatrist, jabbed an OT and been put on a behaviour chart – he should be scored higher than ‘moderate’.  Not holding my breath for a positive outcome when they contact me again on Tuesday - but we'll see.

Going back to Dr B’s report – it reads positively.  It states ‘I think this gentleman has really come along way and I anticipate further improvement.  He is also a very motivated individual’.  He confirms Dad was readmitted in to hospital on 21^st July with an ‘episode of scar epilepsy’ – so not a mini stroke (TIA) as had been suggested.  Unfortunately Dr B did not engage with Dad for long, as he would clearly have realised that Dad’s cognitive is nowhere near ‘back to normal’.  Dad was able to follow the simple instructions that were given to him, but was not asked any questions to demonstrate his state of mind.  Dad has been emotional again this week, his short term memory is still very poor (forgetting visitors have been five minutes after they have left), he struggles to find certain words and the meaning of other words he would have known before the stroke e.g. he asked this week – cockles and mussels…what are they?

Dad’s own wheelchair has arrived this week with a gutter support for his left arm - although after weeks without the gutter-support, Dad's arm is now in a set position whereby it is too painful to rest his arm in it.  Not sure why it’s taken nine weeks to arrive, when other patients arriving at NG after Dad have been in theirs for a lot longer.  Then again - the name tag on the wheelchair says Alan Scott…so say no more.

The physio spoke briefly to Mum this week to advise her they had tried again to get Dad to use the stand rotator, but unfortunately he couldn’t do it - as long as they keep trying.

We had our own physio session Friday afternoon in Dad’s room.  I’d downloaded the music from Mum and Dad’s line dancing classes, thanks to Anne their instructor, so Mum and Dad spent an hour or so singing along and tapping out the dance steps with their feet.  We encouraged Dad to use his left foot too – although he said it was painful.  Dad broke down a couple of times during these songs, which made me wonder whether he was still on his anti-depressants. It is so important to get Dad engaging and laughing - which we all encourage when we are in his company.  It is really good to see his face light up when his grandchildren are with him – although they will be missed for the next two weeks as they are on holiday.

On Saturday we sat outside in the sun with Dad and he asked if his legs were going brown!  We had a good afternoon listening to music and I read some stroke patient’s recovery stories from ‘Stroke News’ – a monthly magazine we have now subscribed to – which kept Dad’s interest. I asked the Nurse if Dad was still on his anti-depressants as he is very emotional again - she confirmed his meds hadn't changed.

Dad is still refusing to eat breakfast.  But when I asked Dad if he knew where he was each morning when he woke up he said ‘no’.  So if he is unsettled in a morning I can understand why he wouldn’t want to eat - although I’m sure if Mum was with him giving him reassurance he would eat his breakfast.  I suggested putting something on Dad’s wall so he could read it each morning to understand where he is and what has happened to him – maybe that would help?  Dad continues to eat most of his lunch and all of his dinner.  He still needs to be eating more to sustain his weight.  I would say Dad’s core is getting stronger from sitting in the wheelchair and so he is continuing to make progress - I just hope he makes progress with his physio so that he will soon get to the stage where he can stand.

Over the next couple of weeks, due to the holiday period, regular visitors to Dad will not be around – so please, if you would like to visit Dad, even for just an hour, do get in touch with me or Mum to arrange....your help and support would be much appreciated:

Update: Following a one to one conversation Mum had with one of the Nurses, she confirmed that although the 'additional' medication had been signed off by the Doctor, it would only ever be administered in very severe cases and unlikely to be used on Dad.  She also confirmed that the psychiatrist advised Dad is NOT suffering from depression (contradiction) and that he is emotional - he recommended that Dad was taken off the anti-depressants for that reason!  This therefore explains why Dad has been so emotional again over the last few days.

Love you Dad x

Mum n Dad 18th August 2012

A Living Miracle

This is a record of the discussion we had when we met with the Consultant (Dr B) on Thursday  9th August.  

Originally one of Dr B’s team came to speak with us, but we insisted we had come to speak to Dr B himself and we eventually got to see him. 

He started off by telling us that Dad was very unlucky to have suffered the stroke he had…and that people don’t usually survive.  He explained that they had expected Dad’s organs to fail and shut down based on the extent of the brain damage…but against all odds, Dad fought back, beating pneumonia along the way and his organs have remained strong.  Dr B checked Dad’s organ’s over and confirmed they were working well.  He said it is only because Dad was such an active and healthy man that he has been able to survive this. A Living Miracle.

So what caused the massive stroke?  Well the finger points directly to Dad’s irregular heartbeat.  Dad may have been feeling symptoms of a racing heart, or his heart skipping a beat over the last 2 to 3 years – but he could have dismissed them as nothing important and not worth a visit to the Doctor.  Lesson learnt.  An ECG scan would have picked up Dad’s irregular heartbeat and prevention methods could have been put in place.  This is why the Government are currently considering funding for all those aged over 50 to have regular ECG’s to help prevent the number of strokes that occur in the UK each year.

Without going in to too much detail, numerous small blood clots will have formed over the last 2 - 3 years resulting in several of them forming in to one big clot.  Because the clot was such a large one, it would have made it's way through two of the three arteries to Dad’s brain, starving the brain of oxygen and causing damage to both sides of Dad's brain when it exploded.  

Dr B explained that once the brain is damaged, it is dead.  The dead brain cells are replaced with skin and muscle and the brain has to then create new pathways to rewire itself to carry out activities.  Dr B was very pleased to report that Dad’s left part of his brain is recovering well and should improve further as the neurons find new pathways to connect.  Dad must be kept stimulated to encourage this.

We were told Dad is likely to have permanent disability and motor function (the ability to use and control muscles and movements) particularly in his left arm, but he saw no reason why Dad wouldn't be walking again in time.  The left side of Dad’s body has a high level of spasticity – although Dr B advised botox injections would help with the loosening of Dad’s muscles and should make physio easier.  He advised us that his colleague would be interested to see Dad and would carry out a series of scans and examinations to identify which muscles in Dad’s arm and leg would benefit from the injections.  He would be able to understand whether it is a nerve injury or muscle weakness as to why Dad can’t yet put pressure on his left foot.  There is hope that Dad will, in time, be able to have a level of mobility in his left leg to be able to take some steps.

It is important Dad does not neglect the left side of his body as Dr B said his right side is so strong.   Sitting in a wheelchair will assist in ensuring Dad uses both sides of his body.

Dr B advised us that Dad would benefit from being referred for intensive rehab therapy three times a week.  We updated him on our thoughts of the brain injury rehabilitation home; although he had not heard of the place – he said as long as Dad was getting regular intensive therapy this would benefit his recovery.  He made clear he had no involvement with the PCT process.

We were also advised that Dad should be off the PEG feed within four months and eating a normal diet.  I asked what…a normal diet…as in no thickener and pureed food? And the Doctor replied yes! How promising is that?!

We explained how Dad’s progress seemed to have gone backwards since coming out of hospital last month and the only thing that had changed was his medication.  Dr B was frustrated that NG had not sent over a list of Dad’s latest medication so that he could make adjustments.  We had specifically asked whether there was any documentation or info to take with us to hospital – but that's another story.  Dr B advised he would still make his assessment when the information had been received. (NB I phoned his secretary Friday to ensure the info had been faxed to her...I'm relieved to say - it had).

So how long did Dr B say we are talking for Dad’s recovery…well it’s no quick fix.  He advised Dad’s recovery would take approximately 3 – 4 years.  We always knew we were in this for the long haul – and we've said from the start we will be with Dad every step (literally) along the way supporting and encouraging as we have done over the last 13 weeks. 

That's a 'brief' summary of our meeting with the Consultant.  We felt very positive after talking with Dr B, it was good to finally have some answers as to why this happened and have an understanding of what we would be working towards for the future. But that positivity lasted all of 24 hours....because then Mum went to visit Dad at NG on Friday and Dr M asked to speak with her...

Dr M advised Mum that he didn't want to dash all of our hopes...but he didn't think it was realistic that Dad would be walking within 3-4 years...?!?!?  Talk about messing with our heads.      This knocked us back down for a short while, but if Dad is to get some mobility back in his left leg over the next 3 - 4 years then I, for one, will be proud. A few steps even...I'm not expecting an 18 hole round of golf - not just yet anyway ;-)  Look how Dad has surprised the professionals by getting this far and making the fantastic progress he has...I know he'll go on surprising people as he continues in his recovery. 

I should add here an update regarding the PCT assessment.  I received a call on Tuesday from the Nurse who presented our case to the panel, informing me that she had been asked to get further information from Dr M.  The panel want to know a) whether Dad will make any further progress and b) what is the risk of Dad suffering from further strokes.  I saw this as a positive - excellent that the panel hadn't said an immediate 'no'. But do the PCT want to know the answers to understand whether Dad's worth investing in, or are they of the mindset if he can't make any more progress he'll need long term funding??  I don't know what they are thinking....but I do know that if we are talking years and not months for Dad's recovery - then we are going to need some financial assistance.  I could go off on a personal rant here - but I won't.  I'm sure you all feel the same- when someone's been a law abiding citizen and paid their taxes all their life blah blah blah...but let's see what happens Tuesday when our case is reviewed with the additional information. We must stay positive.

And so staying on the positive vibe....I must thank each and every one of you for all your kind thoughts and positive prayers for Dad over the last few months.  He is a living miracle and I am pretty sure that Dad’s recovery to date has a lot to do with the love and support, encouragement and faith that family and friends have shown him during this time.  There has not been one single visiting hour in the last 13 weeks when Dad hasn’t had someone by his side speaking to him, stroking him and positively encouraging him to fight – so thank you to you all.

Dad’s recovery is only just beginning and as I’ve said before, we’re in it for the long haul….there will be good and bad times, emotional highs and lows and lots of challenges to face…but I just hope you’ll stay with us on this journey of getting my Dad - 'Alan Skett - The Legend'  back!

Love you Dad x

Just to add some more good news; I successfully passed with a credit the exam I took in May, a week after Dad had been admitted to hospital. It was the last exam to complete Level 5 (year 2) of my CIPS qualification.  

Dad wrote the following message in a card to me :-)

  

Three months on...

Week twelve in Dad's recovery after his massive stroke.  Has it really been three months since that life changing day back in May when we had no idea to what extent of damage this blood clot would bring...time goes so quickly, but at the same time so slowly.

Another week of ups and downs...but what's new?  Well...highlights include Dad having his 'special boot' on the wrong foot, being in a zombie-like state, jabbing a physio and having an intense assessment done by the Primary Care Trust (PCT).  A positive from this week... erm....Dad's had his hair cut - very smart, but the shortest I've ever seen it, oh and he sometimes gets our names right :-)

Yes twice we've been to see Dad this week and his boot has been put on his good foot. I know there's a 50:50 chance of getting it right...but come on, he's only been in their care six weeks now and it is quite easy to see which is Dad's good side and which isn't...a little clue - it's the leg that barely moves.  Apologies if I sound bitter, but this is my Dad we're talking about, and if people can't get a simple matter like that right, then what else can we expect from their care...?

Since Dad's episode which took him back to hospital two weeks ago, his progress seems to have been knocked back a little, which of course is disappointing.  For example, Dad could lift and bend his left leg bringing it up to his body so that he could scratch his toe - excellent progress we thought.  But coming back out of hospital - he can barely lift his leg again.

From Sunday onwards, Dad just wanted to sleep.  We appreciate fatigue is a big effect of a stroke but Dad had been sleeping less and staying alert for longer periods of time before he went back in to hospital.  This tiredness we were experiencing was more of a 'zombie-like' state.  Regular visitors will know the difference between Dad being sleepy and Dad being distant - as Mum goes every day she knew he wasn't right.  Although Mum asked on Monday for Dad's medication to be checked, when we followed it up Tuesday it hadn't been done.  Speaking with our 'favourite' nurse, she assured us she would speak to the Doctor.  Sure enough the new medication Dad had been put on for seizures was making him drowsy and he was brought off it and put on new medication.  If you recall from a previous blog - we were told it may be trial and error in getting the dosage right.  So, as a result, Dad doesn't seem to be so distant and is back with us.  Good job we asked the Doctor to check.

Dad has a limited attention span as a result of the stroke.  He is unable to concentrate for long periods of time.  So what can be done to improve this??  We feel he needs stimulating and challenging to develop him.  When Dad sees new visitors, he lights up.  New voices, new memories, new conversations.  There's only a limited amount of activities we can do with Dad so we can not always keep him interested when sitting in his wheelchair and he will frequently ask to be put back in to bed.  Dad, as I have said before, is much more relaxed and at ease when he is in bed.  Visitors  say how well he looks, which of course is encouraging and we agree Dad has come along long way since those early, scary weeks in hospital...but we need Dad to keep making progress.  We need Dad to sit out for longer periods of time in his wheelchair and to be comfortable and relaxed - because we need to get Dad home and to have a quality of life where we, as a family, can look after him.  Dad being in bed does not achieve this. Unfortunately, this week, we have heard more requests than before from Dad asking to be put back in to bed. 

On Thursday - Dad, Mum, Len and I met with a nurse from the PCT.  She came to carry out a 'Decision Support Tool' assessment on Dad for continuing healthcare and NHS funding.  This assessment is based on 12 care domains e.g. Behaviour, Cognitive, Mobility, Continence etc...Each one is scored on the level of need - ranging from no needs to priority.    

The PCT nurse scored Dad one severe.  We were there to give our input and to challenge where we didn't agree. Our assessment gave Dad one priority and four severe scores.  Len was excellent in dissecting the descriptions and interpreting the criteria for each score. Where as both Mum and I found it emotional to assess Dad in this way, Len was pragmatic and fought all he could for Dad.  The assessment is put to panel on Tuesday for a commissioner and four nurses to make their recommendation.  I don't like being negative, but you have to be realistic...what are the chances of getting funding ay? The fact we are working people who pay our NHS contributions every month, and Dad has paid for over 40 years....when we need some support, where is it? I will of course let you know the outcome.  By the way - the PCT nurse's interpretation of Dad's CT results was that he had in deed suffered another stroke.

And so to the latter part of the week.  We'd had a few mixed messages (what's new!) this week about Dad's physio.  So on Friday I had a 40 minute chat with Dad's OT to find out where we are at after Dad's six weeks rehabilitation at NG. 

I was asked where we hoped Dad would be at this stage. Well...I said...we were told from day one of him arriving at NG that he wouldn't be walking out of here after six weeks due to the extent of the brain damage, so our expectations have in that way been managed. But what we had hoped for by now, was for Dad's mobility to have progressed in his transfer from bed to chair from using the big hoist, and for him to be taking at least a couple of steps to get him to the toilet or commode.

I was told the team have worked with Dad to try to get him to use the 'stand rotator' - Mum and I have even seen Dad use it successfully - it is such an easy transfer and done in seconds, but Dad is not consistent.  Where as he may be happy to stand up and use it to get out of bed, when he gets back in to bed he refuses to use it.  He has been known to refuse to co-operate when he is half way through the process - and as this is a health and safety risk to both Dad and the carers, the OT can't sign it off as the method to use for all Dad's transfers.  

Dad's tone in his leg has become tight again.  It was progressing quite nicely before Dad went back in to hospital.  He has soft tissue massages which loosens it up, but an hour later the tone is back.  This is all due to the effects of a neurological stroke and tone is not easily rectifiable in this instance.  The impact of the tone is that Dad won't be able to bare weight on his foot and therefore that is why it is so difficult for Dad to even take a couple of steps.  So following on from the supported steps Mum and I saw Dad take on the 4th July with the physio and OT, not much progress has been made.

Another issue was raised from this week which we had heard rumours but not first hand until now.  Dad actually hit one of the physios this week. On Monday morning Dad was co-operating with exercises at the edge of of his bed, his arm was hurting due to the exercises and he shook his fist three times with his good hand.  The OT has worked with Dad for six weeks and has experienced this behaviour before, but he has never followed through. This time he jabbed the assistant in the leg.  When asked why he had done this - Dad was able to reason and said 'If you hurt me, I'll hurt you...it's a natural reaction'.  So, again due to health and safety they've had to be more precautious in working with Dad this week.  Physio had been done with Dad Friday but he stayed in bed for it - this was like the physio he was receiving in the early days of his rehab.  I asked if the medication at the start of the week may have had an impact, but I was advised Dad was alert Monday morning? 

I have been advised that Dad's progress is restricted due to his behaviour, compliance and muscle tone...all of these being effects from the massive stroke Dad had.

But we can not give up...we should never give up.  We must keep Dad engaged and keep him positive - it has been difficult to raise a smile out of Dad this week - although when I tell him that he is The Legend that is Alan Skett...he does raise a little smile.  Sue and I took Dad for a walk outside on Thursday - we pushed him up the road to get some fresh air - it didn't seem right, the whole situation felt surreal - me pushing Dad in a wheelchair, but I needed Dad to see there's a world out there and that Room 39 at NG is not the be all and end all.  It was so good to hear Dad say 'Hello Len' when Len arrived on Thursday, and 'Hello Pauline' and correctly tell me that it was his sister.  Whether Dad has re-learnt these names or whether they are coming back from memory, it is positive and shows that family and friends are persevering to retrain and mend Dad's brain.  It is through Mum's perseverance and her unconditional love for Dad that he is able and willing to eat as much as he now does.   

We need to have discussions with the rehab home where we were planning for Dad to go for further intense rehabilitation.  If they too will be limited in how far they can progress Dad due to his behaviour compliance and tone - then we will have to see if it will be money well spent? But what is the other option? As a family, we will try anything to improve Dad's quality of life. I want more than anything for my Dad to be happy again, I want to see him being able to do things for himself and to have a quality of life...I can't let my hope fade and I have to stay strong and believe...we all do.

Love you Dad x

UPDATE - We've had a better day with Dad today - although when we arrived at 2pm and saw Dad lying in literally a bed of urine we were quite disgusted - I won't put the photos on here but I have the evidence.  An hour later when Dad was washed, changed and sitting in a wheelchair Mum and I were able to take Dad outside.  We spent the afternoon outside listening to music and chatting.  Dad was in discomfort at times, but he seemed in good spirits, we got Dad laughing on several occasions and he engaged much better than earlier in the week - even singing to James Blunt's 'You're Beautiful'! 

Also - Mum wanted me to pass on a humongous 'Thank you' to all of Dan's friends after she received a beautiful bouquet of flowers and gifts from them this morning.  They were sent to both Mum and Dad to let them know that they are all thinking of them.  She was quite overwhelmed when she received them and when she read the card from 'The Lads' and saw all the names listed, was over come with emotion.  We have told Dad what 'The Lads' have done and shown him the photos and he said 'that's lovely'. The support is appreciated so much by us all.  If Dad was able to get better on love and kind wishes alone - he'd be back on the golf course already. x