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