Still in Hospital

Update: It's about time I gave family and friends an update - so many have been in touch to find out if Dad has made a recovery.  I was waiting for some good news or at least for Dad to have been discharged, but ten days on I am sad to report that Dad is still in hospital. 

The Doctors informed us last weekend that the CT scan revealed no bleed to the brain - a huge relief.  However, they tried to convince us that Dad had had another right side stroke, although it wasn't showing on the CT scan, and that he had a left side denseness that would need a lot of rehabilitation.  We didn't agree.  Dad had started going downhill days before the fall, so if Dad had have suffered another stroke, the effects to the brain would have been showing by then on the CT scan.  It was us who had to explain to the medical staff about Dad's bilateral stroke in May and that we had already made great attempts to address the 'denseness' in Dad's left side by intense rehabilitation.

I'd carried out some further research on the possibility and effects of a Urinary Tract Infection (UTI).  This sounded more like it.  UTI's can give a person stroke like symptoms or make a person seem even worse than after they'd had their stroke, change their behaviour and character completely, make them more aggressive and make their urine smell.  We asked for a urine test to be done and were told they'd tried twice and there was no trace.  We insisted for another to be done and were extremely relieved to hear news that there was trace of a UTI.  So Dad was immediately put on a course of antibiotics.

At the start of the week Dad was moved back on to the rehabilitation ward where he'd spent five weeks in May/June.  It was a relief to see some familiar nurses who greeted us with smiling faces, but were sad to see Dad back in hospital.  We showed them photos of Dad's progress and they were amazed and so impressed to see how far he'd come, but disappointed to see Dad in the mess he was now in.  They knew Dad back then and they understood that the aggressive, angry, confused man shouting and hitting out at them was all down to the effects of the UTI.  They warned us how nasty UTI's could be and how they could change a persons personality.  Although some of the nurses were understanding, the other patients on Dad's ward weren't so understanding when Dad kept them awake through the night with his shouting - one patient actually insisted on moving.

Dad's physio from the care home visited him in hospital whilst we were there on Monday, as this was the day she should have been accompanying Dad to receive his botox injections...obviously this didn't happen.  She seemed quite shocked when she saw the state of Dad's face, and heard him moaning and groaning as he lay there asleep.  The Consultant that Dad is now under is the one Dad should have been seeing for his botox injections.  The physio wanted to make sure that Dad wasn't overlooked and that a decision was not made not to give Dad the botox injections based on Dad's current state.  We advised her we had still not received a call from the care home to see how Dad, or even Mum, was after the fall.

Mum, Dan, Len and myself have been extending our visiting times (2 - 4pm and 6 - 8pm) by staying with Dad at 5pm to feed him his tea.  He will not accept it from anybody else and is continuing to refuse both breakfast and lunch.  We do not want for Dad to have his nutrients increased again after we have all worked so well together to get them reduced over time from 1,500ml to 800ml.

Towards the middle of last week we were seeing signs of a calmer Dad, more of Dad's personality, post stroke, was starting to shine through.  The singing had come back, Dad even asked the ward if anyone had any requests!  He was giving the nurses hugs and stroking their faces and when he was being changed he only became frustrated at the very end when the nurses attempted to move his left arm. He referred to one of his golfing friends as 'a Legend' - no he replied...'You're the Legend'!  'We're both Legends' Dad said!  This was positive and gave us encouragement that Dad was on the mend.  

And now it's all changed again.  Yesterday was a real down day and probably the most stressful visit I've had with Dad in months.  It's been a long time since I've said goodbye to my Dad at night and walked away with tears in my eyes...but I'll admit to you all, last night I did.  Again, he just wasn't himself.  He was  so confused telling me to get everybody together and explain what was going on - repeating himself over and over and shouting at me when I didn't do it.  He squeezed my hand so tightly and aggressively - and although he'd been squeezing hands earlier in the week, maybe testing his strength (?) he always apologised when we said 'ouch that hurt', but this time nothing - he just stared at me.  He refused his medication pushing my hand away in anger - Wednesday night I spoon fed all of his medication to him without any problems at all.  I asked the nurse if Dad was still on his antibiotics - 'they finished Thursday' she informed me...and that's when Dad seems to have taken a turn for the worse again.  I'm convinced the infection is still in Dad, his urine is smelling again, he is confused and he has reverted to calling us by the wrong names - usually those of his brothers' and sister.

I said to the nurse that we couldn't wait until Monday to start the antibiotics again, so she asked the weekend Doctor to check Dads bloods from the previous day - she confirmed the white blood cells were increasing which was a positive sign.  Until the nurses have been able to carry out another 'dipstick' test on a clean sample of Dad's urine, we won't be able to find out if the infection is still there...as I write this, 24 hours after the request, we are still waiting for a sample to be taken.  Since Dad moved to the rehabilitation ward we have not been consulted by a Doctor to discuss Dad's progress, so we have requested a meeting with them asap. Apparently the 'medical team' will meet this week to assess Dad's situation and they will then be in a position to meet and discuss the next steps with us.

On a positive, Dad had his stitches removed Friday evening.  The scabs are healing well and the bruises are changing colour daily - photos below.

I will update you soon - when we know more.  As always, thank you for the read and again for taking the time to read about Dad's journey. I know we are not the only family having a tough time at the moment and you are also in my prayers and thoughts.  

Love you Dad x 

Day 137: Dad's bruising coming out.
Monday 24 Sept 2012

Day 142: Dad's stitches are out and the
scabs are reducing. Saturday 29 Sept 2012

A&E Round Three....

How disappointed I am to have to write this blog documenting Dad's stroke recovery after such an excellent start in the new care home.

The photo's I put on the last update lifted everyone's spirits - I know this because we received so many texts, emails and phone calls from family and friends expressing their joy and relief to see Dad standing...such positive news. 

Unfortunately....Dad's progress for the time being ended there, as he has slipped back considerably - almost back to the days when he was in hospital in May/early June.  Gone has all the enthusiasm for singing and the determination to work hard in physio, even trying to lift his head is too much for Dad at the moment and if he does speak the words are slurred and confused. His behaviour has changed too. 

Something must have happened...?

By the start of this week the care home had raised their concerns about Dad too and after speaking with the local Doctor, arranged for some tests to be carried out - blood pressure, breathing, urine - but all were reported as normal.  Dad's routine bloods should also have been checked, but to date no one has yet been.

Dad's frustrations have been let out at the carers, his language blue, voice shouting and tone aggressive - even post stroke this is not the Alan Skett we know and love.  Now we appreciate Dad doesn't always look forward to taking his medication and having his insulin injected (who does) but an extreme came Tuesday evening witnessed by both Mum and Dad's brother. Dad's behaviour really did turn and he hit out at the male Nurse in pure anger, bearing in mind Dad is still very strong on the right side of his body.  Confused and convinced he was being poisoned Dad shouted at Mum to get away from them all and that they will all be going down for 30 years...  As you can imagine, an emotional evening for all.

It was a relief to hear that when the Nurse went back to try to administer the meds again, Dad was calm and polite as usual, and composed as he took the medication.

The local Doctor went out to assess Dad on Wednesday morning.  We had concerns that Dad had experienced another TIA (mini-stroke) or seizure to put his progress back this far and to effect his behaviour and personality  in this way, but it was fed back to us that the Doctor did not share these concerns and had ruled them out. The Nurse at the care home spent over an hour talking with Mum, Len and I as we sat with a calmer but still very tired Dad on Wednesday evening discussing Dad's behaviours and deterioration.  It became apparent towards the end of the conversation just how many times Dad is changed during the night.

The carers check on Dad every hour throughout the night and if he is wet, they have a duty of care to change Dad and make him comfy.  We were told Dad 'messes' with his pads through the night and undoes them, therefore when he urinates, he wets both the bed and his pyjamas - resulting in the carers changing Dad.  This happens on average 4/5 times a night - which means Dad is getting very little sleep at night, making him extremely tired through the day.  It's a big contrast to NG where Dad was left to be wet throughout the night, but ended up getting some sleep.  It's a catch 22.  So maybe the lack of sleep is having a detrimental affect on Dad's personality and behaviour...I know what I'm like if I don't get a good night's sleep...and that's without the addition of damage to my brain from a stroke?  

And so to Thursday - at half past 12 midday, just as Mum was preparing to visit Dad, she received a call from the care home advising her that Dad had fallen out of his wheelchair and gashed his head - an ambulance was on it's way to take him to hospital.  Mum and Dan then spent several long hours, again in a&e, waiting for Dad to have the wound stitched.  Three times in the last five months my poor and exhausted Mum has endured the a&e experience with Dad - this really is a test of her strength, love and devotion for her husband x.

Due to Dad being on walfarin, his blood is thinned and Mum reported that it just wouldn't stop bleeding, trickling down Dad's neck and forming a puddle, even though it was bandaged.  At 9pm - eight hours after being admitted - the wound was finally stitched. Mum and Dan again experienced first hand Dad's frustration - Mum saying if it wasn't for Dan having the strength to hold Dad down, several hospital workers would have been attacked.  Dad's language was foul and the shouting horrific, especially when having the cannula fitted and the stitches put in.  This is just not Dad, even post stroke.  

The Doctors are keeping Dad in for a few days to monitor him as they have concerns regards Dad's blood being so thin and the high risk of a bleed to the brain.  He had a CT scan last night and we are now waiting to go to the hospital to receive the results.  I pray that no further damage has been done.  The Doctor that came to assess Dad Wednesday morning called me  following a request from us to meet to discuss his observations.  I updated him regards the recent events - and he did advise that the CT scan would be able to show if a further TIA had occurred in the last few weeks, but if there is any damage to the brain as a result of the acute head injury - it would be on the outside of the brain.

One piece of information I am clinging to, is that one Doctor did say that Dad could have the start of a chest infection or a water infection due to the strong smell of his urine - although he was tested on Monday and the reading was normal?  If this is the case - the water infection could be accountable for Dad reacting the way that he is with his aggressive behaviour?

What a trying and testing time; just when you think you've turned a corner - boom another hurdle to climb.  But we will get there...slowly...and we must NEVER give up.

We shall know more over the next few days...I shall of course keep you updated on this journey. Thanks for the read and as always, the love and support.  Stay positive for us - and let's hope we get to that next corner soon.

Love you Dad x

Dad Bruised and Stitched 21/9/2012

Phase Three....

So, as I write this Dad is just moving in to his 18th week of recovery post stroke and yesterday spent his 120th day in care.  

To recap, Dad spent five weeks in hospital followed by a further twelve weeks in an NHS 'step down'.  He has now moved in to 'Phase Three' of his recovery - a care home for adults with physical disabilities, acquired brain injuries and degenerative neurological disorders, which is currently being funded by ourselves.  We are in the process of appealing the PCT's decision not to fund Dad and have been sent an appointment to meet with them in October to review their decision.

Having not updated the blog for a couple of weeks, there's probably quite a lot to keep you informed of with the ups and downs we are all experiencing on this journey of Dad's recovery.  I will start by thanking the family and friends who visited Dad during the difficult two weeks when our support network was somewhat reduced due to summer holidays.  I think it made a pleasant surprise for Dad to see and remember new faces - I know how much Mum appreciates and values the support, as do Dan and I.  As always - I think the whole situation would be even more challenging without the constant love and support from those around us, and those that come regularly to see Dad and support us - as a family we are truly blessed.

Positives...well, we felt Dad had a real surge of progress over the last couple of weeks - he seemed to be engaging more and in the presence of visitors - more in the 'here and now'.  He has been asking more questions in context and his comments have been relevant to the conversation - not ad hoc and off the wall, which is encouraging.  Of course, this is usually after Mum has arrived at 2 pm and brought Dad back in to the real world.  When Dad is left alone it allows his mind to wonder, telling us when we arrive that he has 'been to the seaside that morning' or he has 'seen his Mum and Dad' - both of who are no longer with us. Dad has also continued to serenade his fellow in-patients, including Hilda who I became particularly fond of in the room opposite Dad - her face lit up when Dad sang!  

We've been doing activities with Dad to keep him interacted and stimulated.  We put a small basketball net on the wall in Dad's room and took it in turn to 'shoot some hoops'! It was good to see Dad's competitive streak was still there and we had fun doing something different - although when Dad decided to 'throw' the ball he did do it rather hard!!  Len and Dave also visited Dad after a round of golf last Saturday.  It was good to hear Dad involved with the golf banter and hear his words of wisdom - which I miss as he would always make me feel better about a situation with his positivity.  He told Len he 'shouldn't gloat about his victory and take it in his stride...let his game to the talking'. We took Dad outside and Dave got a couple of clubs and balls out for Dad to use.  Dad was putting one handed - aiming for the leg of the bench opposite, which he successfully hit on several occasions.  He was so focused - it was good to see that he was engrossed in the activity - and it certainly took his mind off 'needing the toilet' and his 'bum being numb'.

More positives...Dad's braces and splints have arrived - though it may have been a good idea to have instructed the carers on how to fit them and when they should be worn...but I won't go there, it'll only take away my positive vibe!  Dad now has a support for his left arm to rest in which keeps his fingers out straight, this stays in place with velcro straps.  He has a brace to support  his ankle and keep his foot flat which is to be worn during the day with trainers and a chunky boot support to be worn at night, again to support Dads ankle and prevent his foot from turning - it doesn't look the comfiest thing to wear at night I have to say.

We got Dad some trainers to wear with his day time brace -velcro fastening for ease and speed of removing them - they are bobby dazzlers! They really seem to have spurred Dad on.  After wearing slippers or no footwear at all for 17 weeks, the trainers must have felt like a massive support to Dad - he even told the carers when they were removing them after wearing them for the first time that 'the Doctor says I have to keep them on', his feet must have felt very  light when they were removed. The braces and splint appear to be very encouraging in Dad's progress - perhaps it could have been done a little sooner though....?

After explaining to Dad earlier in the week about the plan to move him for the next phase of his recovery, he had a couple of emotional days.  He couldn't remember everything that had been said due to his poor memory, but he knew a change was coming.  This may have been playing on Dad's mind to make him emotional and start asking the carers if 'Wendy was ever going to come and visit again?'.  One afternoon this week Mum walked in to see Dad calling one of the patients 'batman' and telling other patients they were all laundering his money and trying to take it away from him - we wondered if he had picked up from discussions around him the fact that the PCT won't fund Dad's care and that it's his savings that will be used? I don't know, but again this demonstrates when Dad is left on his own without one to one interaction, his mind wonders.  Dad clearly picks up on conversations around him and gets a feel for them, but can't remember the details.  It wasn't great to hear the staff were just standing there watching whilst Dad was having his 'outburst'.

And so to yesterday - the big day when Dad put NG behind him and moved to pastures new.  There were tears shed - both Mum and Dad were emotional as were the carers!  Dad had written a card to thank the staff for 'taking care of me'.  Before leaving, it was a surprise to see the physio and an assistant take Dad to the toilet (yes THE toilet) to have a wee.  Wonderful - absolutely fantastic, really really positive - but why do it an hour before Dad's due to leave the place....why not in the previous weeks??  Apparently they'd taken Dad to the toilet on Wednesday too!  It seems a bit late in the day to me - but I am no expert.  Before Dad left, they also took the cushion away that Dad was sitting on in his wheelchair. I offered to drop it back the next day, but they insisted they wanted it, and low and behold, without much persuasion or many attempts - they got Dad to stand out of his chair so they could take the cushion away!  I must say it was brilliant to see Dad standing - he was able to eyeball me, in fact it was bloody amazing to see Dad standing in front of me, upright and tall - I wanted to give him a massive big hug, but I think I would have taken us both down flat on the floor!  Dad complained after about 30 seconds that he felt his ankle was dropping off and needed to sit down.

And so on to the move.  Dad travelled sitting in his wheelchair and not a stretcher which was excellent,  but the motions of the mini bus ride made him feel sick.  Luckily Mum was on hand with a spare plastic laundry bag...unfortunately it had holes in the bottom of it.  Dad arrived at the care home looking quite pale and confused as to what was going on.  This is a change - a change in the right direction we hope, but it will take some getting used to...in particular the other patients.  Although at the moment there are only ten patients, the majority have severe brain damage.  Having not been used to being around people suffering from brain damage, it was a new experience and a little bit traumatising for us all.  Some of the patients scream out loudly unexpectedly and start making loud, sometimes piercing noises - apparently this is when they are happy or excitable...however, I'm not sure Dad saw it this way.  Whilst sitting with Dad helping him eat his dinner in the dining room, the lady at the table opposite kept staring at him.  Dad said 'What's she looking at me for?  She wants my food she does?'  When she started making loud piercing noises, it made us jump out of our skin and admittedly we did feel a little uncomfortable, I think  the whole situation overwhelmed Mum - and Dad even asked 'How am I meant to sleep tonight with all this going on?' and 'They're all bloody mad round here - I can't stay here'.  I tried to explain to Dad that he couldn't walk so he had come to learn to walk again and that similarly the lady couldn't speak and she had come to learn how to talk and communicate again.

One more anecdote before I end this blog...upon Dad arriving in sick soiled clothes, the carers promptly came to the room to change him in to fresh ones.  Once in the room, we thought the carers were taking an incredibly long time to change Dad compared to the timings we had become used to, but obviously were not familiar with their way of doing things so thought maybe they take longer...a lot longer?  After about 15-20 minutes, one of the carers came out and it was then we mentioned that Dad is transferred from chair to bed and vice versa using a hoist.  They had asked Dad if he could walk and Dad had said 'yes!'  He told them 'I walk everywhere'. They had then spent 15 minutes waiting for Dad to stand himself up and walk to the bed - he actually had made it on to the bed (?) but was unable to to swing his legs round to lie back due to his left side paralysis.  You have to laugh...if you don't you'd cry...and probably never stop.  The fact they had got Dad to transfer from the chair to the bed is progress within Dad's first few hours here, as NG couldn't do it in 12 weeks...!?!  It is frustrating that mixed messages have occurred yet again in the transfer from one place to another - including the information passed on from NG not being up to date. But it will take time and we all have to get used to the new environment - Dad needs a routine and the carers, who on first impression are coming across as friendly and 'caring', need to get used to Dad.

So Dad's journey continues...and we will continue with the ups and downs - hopefully I shall have many more ups to report than downs.  I will again give a plea to all to continue visiting Dad - he needs interaction with the real world more than ever.  Although the physio is very encouraging (telling me yesterday she will come in over this weekend to assess Dad) and his mobility and motor functions will hopefully improve, it can't be at the consequence of Dad's mental and cognitive behaviour suffering due to not having daily conversations and interaction with family and friends.  Visiting times are no longer restricted and visitors are welcome any time of the day or night.  However, we have told Mum that it is no longer sustainable to visit Dad every day and she needs to take some time off herself.  I know if she could, she would have a bed next to Dad's and be with him every minute of the day - but it is taking it's toll and she is tired.  The thought of Mum having to get two buses back home during the dark evenings is not a good one.

Our aim now is to get Dad through these next few months with the ultimate goals to get Dad 'moving' and to get him home.

As always - thank you for your support and for your time in reading this rather long update...I'll endeavor to get some photos on here soon - perhaps of Dad standing in his bobby dazzlers, that would be a good one :-)

I know it's a really tough time... but I love you Dad x


Update: 9/9/2012 Dad is settling in to the new home quite well, although he is still alarmed by the piercing screams and noises that come from one of the other patients. Dad has been using the commode when possible and has even had a shower today (we only know of Dad having had one shower in the twelve weeks he was at NG as they gave him bed baths).  True to her word, the physio came to see Dad today to carry out a further assessment on him.  She encouraged both Mum and I to be part of the session.  Dad was able to stand three times leaning on the walking bars for support, and transfer from wheelchair to bed and vice versa by pushing himself up and sliding across - all captured on my mobile, it took a lot of effort, but Dad achieved it.  The physios aim is to move Dad on from being transferred by the hoist - and she will be back to work with Dad again  tomorrow.  Dad demonstrated yet again today why he deserves the title of being a 'legend' by working hard and showing his determination. So proud.

Love you Dad x

9/9/12 Oli & Ruby with their Pop Pops

9/9/12 Dad's first physio session at JC