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.