Dad makes the news...

April was yet another busy month for hospital appointments and progress in Dad's rehabilitation.

We've now got Dad's travelling down to a fine art through trial and error.  We know he travels much better if:

1. He sits in the front passenger seat of a car,
2. He doesn't take the anti sickness medication which knocks him out for the entire day,
3. We wrap him up warm to get in and out of the car, but keep the car cool inside so he doesn't over heat.

This has made our journeys and visits to appointments and home visits a much more pleasant experience - not just for Dad but for all of us.  Dad even put his hand up and thanked a driver for letting me out last week!

The first appointment of the month was to see the Vascular Consultant.  She confirmed Dad has a healthy left leg with strong pulses and suggested there were no vascular concerns, which was excellent news.  She advised that the pain appeared to be neurological.

A disappointing visit  to a Consultant followed the same week for Dad's botox appointment.  Knowing full well how Dad reacted to the injections in October, the appointment had been rearranged to attend on an open ward on the Acute Stroke Unit. Dad was calm, co-operative and engaged...until the Consultant began to inject the needles in to his arm. He shouted and cursed at the Consultant very loudly.  Not great for anyone to hear - but in an Acute Stroke Unit surrounded by critically ill people - it wasn't good, goodness knows why the appointment was there and not in the clinic we had attended three weeks before. The Consultant only administered one injection in to Dad's bicep and one in to his shoulder.  Very disappointing, as last time Dad had two injections in each and it made a significant difference - the pain eased, his arm could be stretched out to enable Dad to wash under his arm pit improving his hygiene and it made it easier for dressing Dad.  Sadly with only one injection in each muscle, these goals have not been achieved this time.  We were hoping for Dad to have injections in to his hamstring to aid his walking rehabilitation too - but the Consultant would not entertain doing it.  I pleaded with him to reconsider:

'No, it is too painful' he said.  

'When?' I asked 'When is it too painful?' 

'When the injections are administered.' 

'But Dad lives in the moment' I tried to reason 'Dad doesn't even remember cursing or having the injections.'

I asked Dad if he remembered having the injections and his response was 'No - what injections?'

It is so frustrating, knowing that the botox injections could have such a big impact on the quality to Dad's life, but not being able to get them.  What hope do we have when the Consultant won't support us??  If anyone reading knows of any private botox consultants in the West Midlands region, please get in touch, I have already tried to do some research.  But then you ask - why should we have to pay privately when Dad has worked all his life, paid his taxes and his national insurance...grrrrr. Dad is now wearing his left arm splint again with the aim to keep it straight and prevent his arm and hand from bending and clubbing. 

Following the vascular appointment, Dad has been prescribed 'Gabapentin' a medicine to ease the pain caused by the damage to his nerves, something that the Physiotherapist has been suggesting for quite some time. I can not imagine the pain he experiences, as the slightest knock to his left leg or arm can set Dad off in to a complete frenzy -  'Don't tell me not to shout you can't feel this pain.' he shouts at us. But he always apologises after for shouting.  

Dad's physical rehabilitation had been put on hold whilst he waited to see both the Vascular and Botox Consultant, so with these out of the way, he has been making attempts at walking again across the room and back.  The pain from the tightness of the splint does cause him to shout out in pain, but we have been told we have to wait another three weeks for an appointment to get his splint re-moulded - as I said in last months blog, it feels as though we are continuously held up by all this waiting.  

Good news this month is that twice Dad has taken some steps with me and Mum. After asking to go to the toilet, Dad has asked if he can walk.  Come on then let's have a go, I've said passing him his quad stick.  With me supporting his left side and helping him place his left foot and Mum by his right side or behind with the wheelchair, Dad has been able to attempt to walk with us - only a few steps, but this is a massive achievement.  It's hard work - but if we could keep this up it will be really good progress.

Later in the month came a visit to the Urology Department - this time for Dad to have a camera inserted in to his bladder.  After the injections episode - I can't say I was looking forward to this one.  The two nurses who dealt with Dad were brilliant and so understanding.  Once on the bed, they kept Dad dignified and covered.  'Oi get off - your hands are cold' Dad shouted 'Yes' said the second nurse 'But she's ever so good at making pastry!'....Dad laughed.  Thankfully there were no 'F's' and 'B's' at this appointment, but when the camera was inserted he did look at me and shout 'Ay she's got my b****cks - tell her she's squeezing my b****cks.' Oh dear.

A discussion with the Doctor followed - a lovely old school caring Doctor.  He confirmed that the reports proved all the UTI's Dad had suffered were in deed strong infections.  He also gave us some positive news that Dad had got a healthy bladder but with some debris lurking. After ruling out Dad catheterising himself or the nurses doing it for him, he suggested Dad be put on one antibiotic a day to keep the UTI's at bay.  I explained Dad had been on this very medication since January - not according to the medical notes he advised.   So it transpires that since the start of April, through miscommunication, Dad had not been on medication to prevent the risk of a UTI reoccurring - this has now been rectified.

This month, amazingly, Dad's appetite has come back out of nowhere. I can't tell you how good it is to see him eating again and actually enjoying his food - fish, broccoli, sausages, chips and crisps, chocolate biscuits, fruit - it is such a relief. The dietitian came out to visit Dad and was very impressed with his eating. She checked his swallowing of bread and butter, something he hasn't eaten for nearly a year since he had his stroke, and dry biscuits.  Dad was able to swallow them well and she gave her approval for Dad to have these incorporated in to his diet.

And so - for the first time since Dad has been at JC he has eaten breakfast!! Several members of staff were excited to tell Mum when she arrived that day how they had stood looking on in amazement as Dad happily ate his egg sandwichs for breakfast! 

Because he is eating again, we have also found Dad has become more engaging....and thinking all these things through, the light bulb suddenly clicked on in my brain...Dad's appetite coming back coincided exactly with the same time that the antibiotic was stopped.  Surely the medication 'nitrofurantion' didn't suit him, as he is now eating, he is more alert and engaging and, although still very protective over the left side of his body - woe betide if you accidently hit it, he is less angry and aggressive.  Dad has been put on to a new daily antibiotic so we will continue to monitor his appetite and engagement to see if he starts to change again.

Hopefully you will have all rushed out to buy your copy's of the Birmingham Mail on 1st May to see Dad making the headlines...well the health pages?  To coincide with Stroke Awareness month and the new publications 'Feeling Overwhelmed - the Emotional Impact of Stroke' and 'You're not alone', I was interviewed to discuss the emotional difficulties in dealing with a loved one who has suffered from a stroke.  The point is that it is not just the physical side that a stroke effects, but also the mental side - the side that people can't see, and the emotional impact this has on the family and the stroke survivor themself.  The online link is attached below for those that didn't get chance to read it:

Dad's Article in the Birmingham Mail

I understand a couple of Dad's friends have been disappointed by a lack of engagement from him when visiting this month. Dad gets up on a normal day anytime between 9.30 am and 11.30 am so a visit after then is probably best. Restricted meal times are between 1.00 pm and 2.00 pm and 5.00 pm and 6.00 pm.  If in doubt give Mum a call to plan a visit.  But it's always a good idea to tell Dad who you are and how he knows you - and don't expect him to remember throughout your visit, so be prepared to keep reminding him!

Just one thing to add this month - we met with the PCT again.  They had come out to review Dad and to collate evidence to make a decision as to whether they will continue funding him.  It was explained to us that the only reason Dad was being funded was to rehabilitate?  This confuses me as to why we have had to have four Continuing Health Care Assessments carried out when rehabilitation is not even a care domain that is assessed as a criteria for funding?  The PCT will be requesting the 'professional's opinions' as to whether Dad has anymore potential, but the bottom line is they believe Dad has plateaued.  We strongly don't believe this as Dad has started eating and engaging again this month and he has taken steps without his physiotherapist being there.  It's frustrating why no attempts were made to question why Dad's appetite had gone in an instant for the last three months - but perhaps as Dad has been put in to a box labelled 'Vascular Dementia',  the finger of blame can always be pointed to that? A meeting with Dad's GP at the care home follows for us in May.

Anyway - let's end on a positive...Dad is allowing the care staff to shower him now, something that had rarely happened over the last few months and he continues to enjoy his singing.  As mentioned in the article, a fellow resident at JC plays his guitar and Dad happily sings along - providing the songs are not too emotional, because the tears do still come. Mum has been able to take Dad out on a few walks in the sun, just the two of them.  (I shouldn't mention that she's managed to do her back in from pushing Dad in the wheelchair though...).  Dad remains interested in all sports and has been watching the snooker with interest - advising when there's been a good shot or telling us to 'watch this one'. Dad's also enjoyed watching Dad's Army - it's been good to see him laughing!

We know everyone has such busy lives to live, so to all our wonderful family and friends who take time out to visit Dad, thank you so much for the support you give us - it is appreciated by us all and we value you giving up your precious time. And to those that keep in touch, also a big thank you. 

Thanks for reading the update and for remaining interested in Dad's progress.  

Love you Dad x

Dad enjoying the chocolates that Malthouse
kindly sent to Mum and Dad.

Ruby giving her Pop Pops a
well deserved cuddle.

Dad laughing at Dad's Army - good to see!!