Just an ordinary man...

Into the last month of the year and it’s not been a bad one for Dad...a few dramas but good, slow progress continues to be made.

Let’s get the drama out of the way first.  Following on from Mum’s smack to the head by a ‘service user’ (patient to you and me) last month, Dad’s now been attacked by a different service user – twice.  On both occasions Dad was sitting in the dining area.  

In the first attack, the service user had been complaining about his dessert, Dad innocently asked ‘What’s he moaning about now’ and that’s when the service user wheeled himself over to Dad and punched him in the back - a carer tried to intervene.  We were advised that the service user would be eating his meals downstairs in future to prevent any further incident occurring.  So we were shocked to walk in to JC last Sunday to hear that Dad had been attacked again by the same person during his lunch. Dad was upset when Mum and Dan arrived half an hour after the attack happened, so it was still in Dad's short term memory – saying ‘They don’t like me here, they keep pushing me around’ – distressing for us all.  It transpires that Dad had been tapping his spoon on the table – not happy with the noise, the said service user wheeled himself behind Dad again, punched him in the neck twice and picked up a dinner knife to attack Dad with...thankfully a carer managed to prevent him following through with it.

As you can imagine we were absolutely distraught, especially as we had been advised that measures had been put in place after the first attack to prevent it from happening again.  The police were called, but Dan explained that we were not going to press charges – Dad is not in a position to give a statement and go to court.  The next day after speaking to the managers we were advised that the service user had been moved to a suite on the first floor (!) and he would only be able to go on to the ground floor where Dad is based, with supervision.  Another complaint therefore followed later this week when the unsupervised service user freely wheeled himself past Mum and Dad who were sitting alone in the quiet lounge, and proceeded to tell Mum he had been banned from the floor.  Not easy is it...?

On to the important news - Dad’s progress over the last couple of weeks.  We've been able to take Dad out in his wheelchair for a couple of walks around the block; this is the Black Country so there are lots of hills!  It’s hard work pushing Dad up hill, and just as bad trying to prevent the wheelchair from freewheeling going downhill.  It’s about a half hour walk, and Dad’s really enjoyed being out – ‘Feel that bitter chill in the air’ he says, ‘Oh that’s nice the warmth of the sun on my face’.  He always shows concern for who’s pushing – asking if we are OK.  We've sat and watched Football Focus on a Saturday morning together too, Dad telling the Nurse ‘I’m watching Football Focus’ when she asked what he was watching!  He asked about the Joey Barton story that was being covered and laughed when I explained about his French accent.  That was a good day.

We didn't want Dad to miss out on his grandson’s sixth birthday so we all went to see Dad on Oliver’s birthday and enjoyed a McDonald's round the table!  Dad was able to give Oliver his birthday present in person.  It was special to be together as a family and see Dad smiling and laughing.

Dad has now experienced about 35 sessions of physio since he has been at JC.  We told Dad how we look back on his first session and how proud we were that he was able to stand up. Now 14 weeks on, we tell him he is amazing that he is able to walk a good few metres with support and a walking stick.  ‘You’re a legend Dad and we are so proud of you’ I tell him – ‘I’m not a legend’ he responds ‘I’m just an ordinary man’.   It’s been lovely over the last couple of weeks that several of Dad’s family and friends have been able to witness him hard at work in the gym.  It must be so encouraging for them to see Dad progressing physically with their own eyes.  It is heartening and motivating for him to have people supporting him - we can see how hard he works and how much effort he puts in.  

The FES – Functional Electrical Stimulation – device has been helping Dad wonders with both his hand and foot movement. This should help retrain the brain to understand what it should be doing to move Dad’s limbs.  The device is hand held (see picture) and pads with wires attached to the device are stuck to Dad’s leg or arm.  The electrical pulses stimulate the muscles which lift the foot, or open the hand, doing the job of the nerve. All good progress.

Dad had a second home visit arranged for this week – typical it was pouring with rain, just as it was on the first visit, but we coped.  Instead of using the ramp to push him into the house, Dad’s physiotherapist got him to walk up the step and into the house himself.  Once inside, he paused sitting on the wheelchair, before finding the strength to continue walking to his chair – his reward, a comfy sit down on his throne.  I call it his throne – as his chair has been raised on lifters, which makes it rather high. It suited Dad though, and we can always make it lower as Dad improves.

Once again Dad was so relieved to be back.  He asked if the toilet was upstairs – well remembered Dad.  He looked at ease and nodded off straight away.  But not for long – the physiotherapist wanted Dad to practice walking in the house.  She got him to walk to the other end of the room, to his new NHS commode, and back again – with a rest on the commode in between.  I have to say it was the best walking I have seen Dad do since he had his stroke.  His leg without the FES device and new brace (we’re still waiting for it) was still shaking and he needed support from the physiotherapist, but he was able to place it really well – it shows the FES stimulator is working.  Mum had cooked Dad his dinner, and he told her it was good to be eating her food again.  When asked back at JC later that day if he’d enjoyed Wendy’s cooking – he joked ‘Well, I’m still alive’!

Once again we experienced some emotions when it was time for Dad to go back to JC.  He got angry and started swearing – even deliberately clonking me round the head when we were trying to get his coat on.  But he’ll be back soon.  Hopefully we shall have him home for Christmas Day, and soon after for an overnight stay – although we need to get the NHS bed delivered first.

Dad appreciates all that everyone is doing for him and we appreciate all the support too.  Yesterday after a really positive day, Dad broke down at the table and started sobbing out of the blue.  I gave him a big hug and asked why he was crying, he finally said ‘Because some people are on their own and they don’t have families to love and support them like I do’.  That was a moment.

It’s been a tough year for our family – a year where I've finally had to grow up or certainly ‘man up’, but we are aware we are not alone and that there are many families going through difficult periods all the time. We thank each and every one of you for reading this blog, for keeping in touch and showing your support and for all those who were involved with the Charity Day at Halesowen Golf Club in October.

We  wish you and your families a very special and enjoyable time this Christmas.  I will be counting my blessings and thinking how lucky I am to have both my Mum and Dad with me again for Christmas...if all goes to plan...!  Wishing you all love, laughter and good health for the New Year.  As always – thank you for reading, for hoping and believing...

Love you Dad x

Dad with his grandchildren 1-12-12

Oliver's 6th Birthday 7-12-12

Walking at home 14-12-12

Dad on his 'throne' 14-12-12

                                 

200 days and a visit home

 I am pleased to say we have experienced some positive days since I last wrote.  Dad is continuing to make good progress in his recovery, although I reiterate it is slow, it is in the right direction.

The Physiotherapist has worked Dad hard during his last few sessions off physio which has resulted in him being able to walk with the support of her and a walking stick…with the wheelchair close behind.  It’s not a pretty walk, but it is a great achievement considering Dad has only been at JC twelve weeks, including his time in hospital after the fall and the confusion of the UTI.  Prior to JC, NG had left him in either his bed or wheelchair and basically given up on him.

At the moment, Dad requires the assistance from the Physiotherapist to place his left foot firmly on the floor – the Ankle, Foot, Orthotic (AFO) brace should help do this when it arrives, hopefully this side of Christmas.

Christmas already, where has the year gone!?  The best present this year would be to spend the day together as a family.  With this in mind, we have been preparing for Dad to be with us at home on Christmas Day.  Dad’s 200^th day of recovery was marked last Monday with a two hour visit back home with the Physiotherapist and Occupational Therapist (OT).  It felt so good to see Dad back in his home environment.  Once in the house, we asked Dad if he recognised it as he looked around – ‘Of course I recognise it’ he said ‘it’s home’.  A few emotional tears were shared between Mum and Dad whilst I, along with the Physio and OT tried to keep it together. 

Dad was able to walk with a walking stick and the support of his Physio, from one end of the living room to ‘his chair’.  This was the first time Dad had walked on carpet and he did very well, although he did air his frustrations.  Once sitting in his chair it was as though the last six months had been a terrible nightmare, it looked so right and so normal.  ‘Put the news on’ he suggested.  Both the Physio and OT commented that it was the first time they had seen Dad completely at ease – he did look relaxed and comfortable and it wasn't long before he was asleep.  Unfortunately, reality set in for us when Dad stated he needed the toilet. 

There were no tears shed when Dad came to leave after his short return home, but there was anger and a few choice words.  It was sad to see him leaving, but it was amazing to have had him back with us even for such a short time – it gave us the determination to get Dad back permanently where he belongs.  Adaptations are already being made to the house for Dad’s return.

In the last couple of weeks Dad has also visited the Guest Hospital and Corbett Hospital, both times for x-rays of his right shoulder following his fall.  Unfortunately, on both occasions they took x-rays of his left shoulder…yes, I know.  So we are still waiting for the correct x-ray to be taken.

We also accompanied Dad to Russells Hall Hospital for his six monthly check up this week.  Unfortunately, the night before, Dad had been given his first sleeping tablet to assist in getting him a good night’s sleep. The effects had not worked during the night, but took great effect during the morning!  Dad was in a deep sleep as we spent nearly 25 minutes with the Doctor. He advised us that Dad’s cognition and physical disabilities will improve as time goes on.  It is unlikely that Dad’s short term memory will improve which is common following a vascular stroke.  A routine for Dad should certainly help along with time and rehabilitation.

It’s hard when so many things have to be repeated to Dad as often as they do – but we will continue to do so until he is able to remember.  We tell him everyday that he had a stroke in May and that his brain was damaged which controls the left side of his body.  ‘Why can’t I walk?’ he shouts out in frustration, ‘I’m in a state’.  The down days Dad experiences are difficult to deal with, especially when he won’t smile, he shouts and swears – even at Mum, he shouts that ‘he’s had enough’.  We wait on tenterhooks as Dad is taken to use the toilet, the feeling of relief when it is a ‘quiet’ visit.  It is not pleasant to hear Dad demanding and shouting orders at the carers, in all honesty it turns our stomachs to hear him so angry…but this is the effects of the stroke.

Dad’s cognition seems to be improving, He has not lost his intelligence and his sense of humour still shines through on the good days.  He is using the correct name more often with family, although when he is tired they are not so accurate.  Dad’s emotions are still at the forefront, as well as the anger and frustration he becomes tearful quite easily.

Dad continues to have a blood sugar test each evening which consists of a small prick to the finger to draw blood, followed by the insulin injection to his stomach.  Some days he doesn't react and other days he lashes out at the nurse and is verbally abusive.  Again, this is down to the effects of the stroke.  These are all daily tasks that we will have to deal with when Dad comes home as we endeavour to carry out the nurse’s role as well as the carers – the majority of the responsibility falling to Mum.

Talking of Mum – an upsetting incident occurred this week.  A confused patient, new to JC, walked in to Dad’s room as Mum and some family members were sitting with Dad whilst he slept.  Mum explained to her that it wasn't her room and followed her out.  Mum being the helpful and kind person that she is, told the patient which direction her room was.  Mum was rewarded for her act of kindness with a full on smack around the head from said patient.  Mum was left extremely distraught and upset.  The care home was advised of the incident and thankfully the patient has now been moved to another area of the home.  Sometimes it’s a blessing that Dad doesn't have a short term memory. For information – Mum is OK now just a little shaken.

To end on a positive note; for those who keep up to date with this blog, you will know that we have been appealing against the PCT’s decision not to fund Dad for his ongoing health needs. 

The appeal meeting went ahead but was terminated when information not seen before came to light.  The Consultant’s report from August, clearly stating that Dad should be entitled to rehabilitation, had not been provided as evidence to the PCT Nurse when she carried out her assessment at NG back in August.  It transpires that the physiotherapist and OT at NG, as well as the social worker, had basically given up on Dad and this was reflected in their reports stating that there was little potential of any progress being made – this is the information the Nurse based her assessment on and put to the PCT Panel. The Chair of the meeting read the Consultant’s report and said ‘This changes everything’.  As she informed us that she was ‘sorry’ and that we had been ‘failed as a family’, I broke down. 

It has been confirmed this week that Dad will receive backdated continuing health care funding from the date he went in to private care and going forward, with another assessment in a couple of weeks.

As a result, we do feel let down by those that should have been supporting Dad and providing us with up to date information.  The last few months have been extremely difficult for us all with the added pressure of the appeal on us.  Thank goodness Dad now has a team around him that encourages, motivates and supports him - we can not thank the Physiotherapist and OT enough for believing in Dad.  Along with the love that surrounds him from his family and friends, Dad continues to make progress that amazes even the professionals.  I have shown the Doctor and the PCT Nurses the most recent footage of Dad walking, and they have watched in astonishment as they see a man that was written off without any potential take steps with a walking stick.

The bad days are hard for us all, but the good days help keep our spirits lifted – we know...one day at a time.

As always – thanks for believing and thanks for the read. 

Love you Dad x

Dad back in 'his chair' - 26-11-2012

At home together for the
first time in 200 days - 26-11-2012.

           

Working hard - 28-11-2012

My Dad - The Legend xxx

               

A step in the right direction

It has been over a couple of weeks since I last wrote an update – apologies if you have been waiting for some more news on Dad’s recovery, it’s been a busy couple of weeks.

Many of the issues at the home seem to have been resolved, although there are some ongoing.  Unfortunately the Director didn't turn up to our meeting that we had arranged with him at the end of October – we were so annoyed as both Len and I had taken time off work to attend.  We finally caught up with him later in the day and let him know how we felt.

He has recently confirmed that he will be refunding the money for the two weeks that Dad was in hospital – which we are very pleased about - although he wants us to sign a new contract before we get the money back...!

So anyway, more importantly – how’s Dad doing?  Well I am pleased to report that Dad has had a couple of positive weeks and some improvements have been made.  The UTI seems to have finally cleared from Dad’s system.  He is much calmer, is smiling and joking once again and the swearing and aggression is far less frequent than before.  Although there’s the occasional ‘f’ or ‘b’, overall Dad seems so much more like his old self - at last.

To keep us going, we popped out to the local McDonald's the other night to get some food and took it back to the home to eat whilst Dad was eating his tea.  Dad helped himself to Mum’s fries – he really seemed to enjoy them…so much so he took the carton of fries out of Mums hand only to realise he hadn't got a spare hand to eat them with. Dad has also been eating Jaffa Cakes, which is excellent as he needs to put weight on and we’d been trying to think of what other foods we could encourage him to eat.  

Unfortunately Dad’s drinking habits haven’t yet improved and he’s still not drinking enough orally, even though he is now drinking normal consistency fluids.  He seems to think the more he drinks the more likely he is to have to use the toilet – and he sees this as a big job.  We've tried to explain to Dad whether he drinks orally or through the PEG he still has to go to the toilet.

A solution has been found to stop Dad having to endure the weekly injections for blood tests due to him being on walfarin. A couple of new drugs have recently been approved by NICE and literally the day the walfarin clinic at Russells Hall Hospital was given the licence to use it, they contacted us to offer it to Dad.  After much research on the internet and speaking to the walfarin nurse and Doctor, we have agreed that this will be a suitable alternative to prevent Dad's blood clotting.  One tablet a day and an annual renal check is far better than Dad suffering his needle phobia on a weekly basis. 

The physiotherapist is working wonders with Dad.  His walking with the pulpit, a tall frame on wheels, has improved considerably.  He has also been taking steps without the frame holding on to the edge of the raised bed with the physiotherapist on his left side for reassurance.  She believes that in time Dad will be able to walk up stairs!  She even got Dad to walk up the first step of the practice stairs in the gym this week – although a little shaky, he did very well - photo below.  Dad is getting stronger and more determined by the day.  We can now see, the only thing holding Dad back physically are his cognitive issues.  The fact his short term memory is so poor, means that unfortunately he can’t remember what he has done five minutes after doing it.  I show him photos and videos of the exercises he has done in the gym and he doesn't even recognise himself.

The physiotherapist and occupational therapist (OT) visited Mum and Dad’s house this week.  It was encouraging to hear that they feel Dad will be able to get up the stairs to his bedroom, either in a stair lift or walking, although walking may be some months away.  They explained to us how once a patient comes back to their home environment, they feel reassured and safe and recovery can improve more quickly.  In the next couple of weeks Dad will be coming home for a short two hour visit.  The physiotherapist and OT will assess how Dad reacts in his home environment.  We did show Dad a picture of his house on Google maps recently, but unfortunately he did not recognise it.  However, when he is in the surroundings of his own home, this may help trigger some memories.  The next step will be to have Dad back for an overnight stay and the aim then to get Dad back home early in the New Year.

Dad went for his cast fitting at hospital yesterday, although the journey wore him out before he got there, he did very well when the orthotist was plastering his leg and moving it up and down - a few weeks ago, Dad wouldn't have let anybody get near it.  He will attend another appointment in 3-4 weeks to have the new splint fitted.  This should aid Dad when he places his left foot on the floor helping it to be flat rather than arched.

It has been lovely to see some of Dad's friends visiting him again over the last couple of weeks.  His face lights up as he recognises a familiar face - although you shouldn't expect him to remember your name.  He still gets frustrated when he hears more than one conversation  at once, or if he can't keep up with the pace of the conversation - 'I can't keep it up with it I can't' he says and he has been known to snap at us to shut up too.

He has been speaking very well, although there is still lots of confusion, and he does try his best to contribute when the conversation is directed at him. Dad still has a huge chunk of his memory missing, but it is clear he feels safe when he his with Mum.  He asks 'Where's Wendy gone' if she has popped to the toilet, or gone to make a drink.  He also gets very emotional when Mum arrives and sometimes when we say goodbye - asking 'When will I see you again - will you make sure you come back?'

We appreciate it's a long road to recovery and that although we may have several positive days with Dad, a 'not so good' day often follows, but we have learnt to take each day as it comes.

Over the last couple of weeks we have received many texts and phone calls off family and friends asking for information on Dad's health and so we hope the photos below keep your thoughts positive.  If you are thinking of visiting we would advise avoiding meal times, so not between 12.30 pm and 1.30 pm or between 5 pm and 6 pm.  Also, Dad has been put on a new routine where he has a sleep in the afternoon between 2 pm and 3 pm, so he's likely to be asleep - probably best to give Mum a call or drop her a text to let her know your plans; let me know if you need her number.

As always - thanks for the support and your time in reading this, we'll get there, however long it takes.

UPDATE 19/11/12: It has been confirmed that Dad has another UTI.  All the signs were there again; Dad's urine has been smelling very strongly again, he has been complaining about the pain around his kidneys and feeling nauseous and the extra confusion set in yet again on Saturday evening.  It was as though someone had flicked a switch - Dad started shouting and became very angry in the matter of seconds, he shouted 'I'm so confused, why am I so confused?"  The nurse addressed our concerns immediately and the Doctor again faxed a prescription for antibiotics to the Midnight Chemist which we fetched straight away.  I really hope this one is not as extreme as the last UTI.

Love you Dad x

Dad standing whilst practicing his ball
 to hand co-ordination.

Dad taking steps without a frame.

Mum & Dad x

Attempting walking up and down
one stair.

   

More ups and downs...

It's taken a while to find the time to write the next installment to keep family and friends updated with Dad's recovery.  If we are not physically with Dad, then our thoughts are with him as we 'fight' on his behalf to ensure he continues to get the best care and chance of recovery that he can.  

There have again been many issues over the last few weeks. Every week I seem to have a list of issues and concerns that need addressing by the care home - the manager has informed us that 'they (the care home) need to rebuild our confidence in them'.  This week it has been left to me, a member of Dad's family, to identify that his mattress is not fit for purpose.  The mattress had a huge saturated wet patch in the middle; this was clearly soaking Dad through the sheet and his pyjamas and creating a high risk of contracting bedsores. Turns out the mattress had other stains, evidence it was not a one off the night I was there and had been supplied incorrectly. The fact it never seemed to be an issue to be raised by anyone as a concern over the past three weeks, beggars belief. Dad is now sleeping on a new 'waterproof' mattress.  Other issues include waiting times for Dad to be taken to the toilet in excess of one hour, Dad's splint being put on his 'good' foot and his night time brace soaking wet for three days with no explanation as to why or any attempt made to dry it. At the end of the day - all we want is the best care for my Dad...we thought we would get it at this new state of the art care home. There are some staff who really do seem to try their best to help us.  We have a meeting with the Director tomorrow to raise our concerns once again.

A particularly distressing visit occurred a couple of Saturday's ago.   It involved me giving an emotional plea to the nurses to 'do something' to address Dad's behaviour and aggression. Traces of the existing UTI were still showing in Dad's urine.The 'f' word had found it's way in to Dad's vocabulary and he was using it for every other word.  A late night phone call to the out of hours Doctor resulted in me travelling to a chemist open till midnight to a get an emergency prescription to help clear the UTI.  

We have now received confirmation from tests done at the lab that the UTI has cleared - excellent news.  But the aggression and anger remains - Dad has even grabbed on to the curtains during one of these episodes and pulled the curtain rail down, he has also spat and physically hit out at the carers.  I have done numerous hours of research on the effects to a person suffering from damage to the frontal lobe of the brain.  This area of the brain is considered as our emotional control centre, home to our personality and memory.  Dad was an enthusiastic, passionate man, full of positivity and wisdom - the reality is that Dad is no longer this person and we have to accept the person he has become.  I will love him no less and I don't expect anyone else to either.  Dad still shows us signs of his caring side, but he is so confused by all that has gone on and does not remember the things we tell him that he says and does - 'But I'm a quiet person aren't I?', 'I would never swear or hit out sweetheart', 'It must be frustration or a defence mechanism.' he says.

I spent some one on one time with Dad yesterday evening.  He was rather sleepy, so I played music to him to which he engaged between spells of sleeping.  We listened and sang songs from musicals, some modern music and hymns - we both had tears at times, it was a special 'Father, Daughter' moment.  Words to songs seem to take on new meanings.  Dad stroked my hair and said 'Thank you'...I asked 'What for?'  'For being with me when there are many other people to be with.' Dad also asked the question 'Why me?' - 'I know' I said 'We've all asked that question Dad'....but who can control life?  It was upsetting after spending five hours with Dad, that when I walked in to his room after he had been put in to bed for the night (singing for a change without any aggression or swearing) he greeted me as though I had just arrived and said he did not remember sitting with me all evening.  I showed Dad the whiteboard we use to communicate with him, the date is on there and names of staff and visitors for that day - 'I've never seen that before' he said...we show him every day.

Another episode over the last few weeks was when an experienced nurse from the local hospital came to take Dad's bloods.  Due to Dad being in an angry mood, he started shouting and swearing at her, she was not alone with Dad - other carers and the nurse from the care home were there, but it resulted in her leaving in tears without the blood sample and putting in a complaint to her manager who promptly followed it up with a call to the care home stating they would not treat this patient in future!  Surely if you go in to the medical profession you should have learnt and gained an understanding of the effects caused to a stroke survivor and especially one suffering from a UTI?  By not taking Dad's weekly blood sample, it was unable to be tested to identify whether Dad should be taking walfarin - this is life saving medicine that she is potentially stopping Dad from taking.  Fortunately a nurse from the local surgery visited another patient in the care home the next day and Dad happily let her take blood samples.

Through all the difficult times we are experiencing, we have to cling on to the positives that keep us going. Dad had a visit from the nutritional nurse a couple of weeks ago who tested his swallowing ability.  I am so pleased to say she has signed Dad off the thickner and he can now drink liquids of normal consistency. He must still be careful when sipping to prevent choking, but it is a positive step in Dad's recovery.  The aim now however, is to encourage Dad to drink more to reduce dependency on the PEG.  Without the PEG feeding water in to his stomach throughout the day, Dad would dehydrate.  He has tried a sip of coffee and tea but still did not like the taste.

Dad has continued with his physio and has had a couple of productive sessions in the gym.  The physiotherapist really is excellent the way she gets Dad to respond to her.  His standing has improved considerably.  He uses the shoulder of the physiotherapist or carer to pull himself up by resting his good hand on their shoulder or uses a rail - this helps in particular when transferring from his wheelchair to the toilet or when being dried after a shower.  Dad also seems comfortable in transferring seated from wheelchair to bed, doing it by himself with verbal encouragement from the physio or carer. This should put him in good stead for when we start practicing transfers from wheelchair to car.  Dad has also been taking some steps with a large frame on wheels with support from the physiotherapist and two others.  I have filmed this on my phone but am unfortunately unable to download it. I wish you could all see it as I'm sure it would all make you feel as proud as I do.  Dad is able to channel is frustration in the gym positively in to the determination to beat his disability - 'You b.....d' he shouts 'I'm going to beat you I am'. I truly believe he will.

The physio has also started using a circulation booster on Dad's left hand.  The booster uses electrical muscle stimulation applied through small pads placed on Dad's arm to stimulate thousands of nerve endings.  The result is that Dad's fingers contract and release to loosen the tightness.  The physio is then able to stretch Dad's arm more easily.  I will endeavor to get some photos on here of Dad working hard in the gym.

Which leads me on to last week's visit to see the Consultant who deals with spasticity and botox.  I admit to dreading this appointment due to Dad's recent outbursts of anger and the behaviour he displayed when he had the botox injections whilst in hospital.  Dad was completely the opposite - he was drowsy, sleepy and totally unengaged, nothing could stir him. He looked white on arrival at the hospital and his blood pressure reading was very low.  The Orthotist was impressed with the range in Dad's arm, hand, leg and foot and was very pleased to hear Dad had been taking some steps.  The decision was made not to inject in to Dad's leg on this occasion as it could have a detrimental effect on Dad's muscles and hinder his walking.  Instead Dad will have a mould taken of his foot and leg which will allow for a new brace to be made specifically for him.  The brace should provide additional support to aid Dad's standing and walking; it should be ready in about six weeks time.  Dad will also have a new arm support  in the next couple of weeks.

The Consultant also reviewed Dad's medication as he was concerned about Dad's drowsiness. He has taken Dad off one medication with immediate effect and will wean him off the muscle relief medication over the next two weeks as it is no longer serving a purpose and can make people tired and drowsy.

I asked the Consultant about Dad's behaviour, as he had witnessed it when the botox injections were last administered.  He advised that it could well be an effect of the UTI and that although Dad's urine is now clean of any infection, the effects may take a long time to get out of the system, alternatively it may be the effects of the stroke. No one has the answer. As I mentioned from my previous research, I have a feeling that this may be Dad's personality post stroke - I guess we have to all stay positive and hope that the aggression may fade in time.

It's nearly six months since Dad had the stroke (six months, can you believe it?) and we mustn't forget just how far he has come.  Three to four years we were given as a time for recovery, so I think he is doing really well.  Regards coming to visit Dad - maybe a change of face would do Dad good and lift his spirits.  From reading this, I hope you have an understanding of how Dad is and it helps to manage your expectations should you choose to visit him. I would strongly ask you to contact Mum to arrange the best time to visit, as Dad struggles with hearing more than one conversation at once - several visitors at one time would not be effective.  Dad is being put on a new routine whereby he will be put back in to bed for an afternoon sleep and it would not be worthwhile visiting during this time.  

I appreciate this has been a lengthy update and hope I have managed to capture your attention without too much drifting off.  I certainly appreciate the time you have taken to read about the continuation of my Dad's stroke recovery.

Dad's Charity Day: I can not write this update without mentioning the successful Golf Charity Day organised by some very special friends of Dad's. Over 70 golfers and helpers turned out to play on a drizzly wet Monday to support Dad, joined by numerous people who brought raffle prizes, bought raffle tickets and made donations.  I snuck in just in time to see the presentations.  To say it was a little overwhelming to see the support shown for my Dad is an understatement.  I am extremely proud to be Alan Skett's daughter - as proud as Mum is to be his wife and Dan his son.  The phenomenal figure raised will help to buy specialist equipment to aid Dad's recovery, we will of course keep you informed of how the donation is used. Thank you from the bottom of our hearts to each and everyone of you involved in this day. 

The love and support shown to Dad from family and friends is testament to the loving, kind and loyal person we all knew my  Dad to be.  I've said it before, but it is so true - and I told Dad this only last night, if he was able to get better on love and kind wishes alone, he'd have been back out on that golf course with his friends a long time ago.  To all Dad's regular visitors and the people who keep in contact with us - we couldn't have got through the last six months without you. 

As always - thank you for your support and thank you for your time.

Love you Dad x

Dad's back at the care home

In answer to the question that everyone's been asking - 'Is Alan out of hospital yet...?'....yes he is, Dad's back at the care home.

In answer to the next question - 'No, unfortunately he's not doing that great'.

So what's been going on.  I last wrote stating that after a couple of days on antibiotics Dad had started to show signs of improvement, but then worryingly started becoming aggressive again and not 'with it' at all.  We were right to raise our concerns with the nurses, as last Monday it was confirmed that Dad still had the UTI.  Dad began a course of stronger antibiotics last Monday, they finished on Saturday afternoon.  

We were informed on the Monday that the Consultant was going ahead with Dad's botox injections the next day.  Although the appointment was cancelled at very short notice, it went ahead on the Wednesday.

Mum took herself out in to the corridor whilst I stayed behind the curtains holding Dad's hand to give him reassurance and support. The Consultant, as well as three others from his team and a physio, gathered in the small space around Dad's bed and proceeded to inject the botox in to his left shoulder.  Those that have visited Dad may well have an appreciation of his fear of needles, having experienced his reaction to the small insulin needle that is injected daily in to his stomach.  Even prior to the stroke, if Dad needed a filling in a tooth, he would have it without the injection, such was his fear of needles.  So when he saw the length of the needle to be used to inject the botox he practically hit the roof...had I not have been holding his hand, he would probably have hit the Consultant and his team too. The language was again offensive and abusive - it wasn't an easy situation, but with the sounds of 'Bridge over troubled water' amoungst other calming songs playing on the iPhone...we got through it.  Five minutes later...Dad didn't remember anything about what we had all just experienced. 

The botox will not make Dad's arm work again, but it should ease the resistance and pain when we do the stretches in his left arm.  To date, the arm does seem to move with a little more ease, however Dad is still feeling the pain.  We were advised the botox will be at it's maximum potential after one month.  Dad has a further appointment on Monday 22nd October for the Consultant to consider botox to Dad's left leg - his physio is strongly pushing for it.

Later in the day we were advised Dad was deemed as 'medically fit' and both Mum and I were summoned, it felt like it, to meet with the discharge nurses.  It was held in the meeting room where five months ago the dreadful news was delivered to us that Dad would never walk again and would need help with every aspect of his life.  It was great to be back there again bringing back those memories...huh. Unfortunately the nurses we met had very little compassion and advised us that NG had confirmed they couldn't do anymore for Dad and he would therefore not be entitled to a place in 'step down'.  We were instructed that Dad had to go back to the care home 'today or tomorrow'.  We agreed Friday as we needed to have discussions with the care home before Dad went back.  We didn't find it helpful when the nurses criticised us for not raising our concerns with the care home before now.

On to Thursday, when we were informed by the PCT that they would be doing a reassessment of Dad that day for consideration of funding, following his return back to hospital.  Mum and Dad's sister sat through another emotional assessment where the severity of Dad's health was again scrutinised. The verdict - Dad had deteriorated.  Following on from this meeting, I picked up Mum who looked worn out and pale and took her to meet with staff at the care home, along with Dan to raise our concerns about Dad's care.  We needed to address how the fall had happened, what they had learned from it and what measures they were going to put in place to prevent it from happening again, along with a list of many other issues and concerns.  At the end of the two hour meeting - my poor Mum was mentally drained yet relieved.  We felt reassured about Dad returning there to continue his rehabilitation and that he would receive the right care.

And so on to Friday - after being told on the phone Dad was ready to be collected and transport was on it's way, I rushed Mum up to the hospital, only to spend the next four hours sitting around Dads bed waiting for it to arrive.  Dad moved back to the care home at 5.00 pm.  He looked pale, old, and completely exhausted by the time he got back there.

The physio turned up to try a session in the gym with Dad on Saturday afternoon.  First she had to get him motivated and out of bed.  Dad had been put back in to bed due to being so tired.  The gym session was nowhere near as successful as those photos that I'd posted on here previously.  As a result of the fall, Dad's confidence has gone, his left leg has been further damaged and he now has a tightness in the right side of his upper body.  Dad's language was awful, he was shouting and aggressive.  'No' he shouted when the physio encouraged Dad to stand 'I can't do it, I'm going to fall in to pieces' - and those are the words I can repeat.

Since Dad's been back at the care home he has been sleepy, uninterested and unengaging. He is still being aggressive, supposedly hitting several of the carers as they assist him, although there are times when he shows concern for their well being and kisses the hands of the female carers.  He does continue to shout and has a short temper.  Definitely not the Alan Skett we all know and love, not even Alan Skett post stroke.  It's hard.  The support from you all means the world to us, but spending time with Dad is hard. At the moment there are not that many rewarding moments - but in time I believe our commitment, love and persistence will pay off when he gets through this dark period.

We are still waiting for many of the reassurances from our meeting with the care home to be followed through. A week on we are still waiting for the chair they promised for Dad, he spends all day restricted to his wheelchair without any support for his upper back, neck and shoulders.  We are still waiting for the whiteboard to be put in Dad's room to help us communicate with him by leaving messages and information.  We have been advised we will not be getting our money back for the two weeks Dad spent in hospital...effectively money spent on an empty room as a result of Dad falling in their care.

Following discussions with the nurses at the care home about Dad's ongoing change in behaviour they agreed to monitor his urine. We have today been informed by the nurses that the UTI has still not gone.  More antibiotics then...even stronger ones maybe?  This might help to explain why Dad is still so different to who he was prior to moving to this care home when the UTI took effect.  Another clean sample is required to be sent to the laboratory for further tests.  We were informed that the local Doctor would be visiting on Tuesday to assess Dad's condition and to date still no visit has been made.  We also wanted the Doctor to review what could be done to help Dads sleeping pattern, currently the records show he is sleeping two to three hours a night.

And finally, the PCT contacted me today to inform me of their decision to agree to fund Dad at this care home for six weeks.  They will carry out a further assessment of Dad's health in four weeks time to assess any progress that has been made. Positive that we are getting help and support financially, but negative that Dad has clearly gone backwards in order to get some funding.  The PCT have concerns for Dad's behaviour, understandably, and his nutrition.  Since being back at the care home Dad has continued to eat very little breakfast - a few mouthfuls at best, on average a quarter of his lunchtime meals and with encouragement from his family, Mum most of the time, all of his evening meal.  Just the last few days Dad has even been feeding himself at meal times - we think he must be so hungry as he eats his evening meal very quickly.  Dads nutrients have also been increased again from 800ml to 1,000ml.

I hope this brings you up to date with all that has been going on with Dad's recovery.  I must add how surprised we were to hear about the fundraising event Dad's friends have organised to support him in his recovery.  A charity golf day is being held at the golf course where Dad is a member on Monday 22nd October.  If anybody would like to take part, please let me know and I will provide further information; amy.murray69@hotmail.co.uk.  It is humbling to know how highly thought of and well respected my Dad must be for this to take place - I am so proud to be his daughter.

As always - thank you for the read, the support, and the positive thoughts.  We will get Dad back on track...we just need to get rid of this horrible UTI.

Love you Dad x

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