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