Nearly home...

Always a pleasure to see you back here to share the month's events - thank you.

One of the many worries we have had whilst Dad has been rehabilitating after his stroke, is how will people react if Dad has one of his shouting episodes when we are out in public? If you recall, I've already had one experience where people just stopped and stared when Dad was shouting at me whilst transferring him out of the car. You imagine if you were enjoying a family meal in a restaurant or out shopping and you heard somebody suddenly start shouting and swearing and becoming abusive - how would you react? I imagine you would be quite offended, disgusted even - especially if you were with young children hearing such bad language.  This is a challenge that we have to confront, as the alternative is that Dad spends the rest of his life behind closed doors, only venturing out for hospital appointments. Admittedly the shouting only occurs if Dad feels pain, particularly in his arm, or if there is too much noise - it is certainly more frequent if he is suffering with a UTI too.  

Well at the start of the month, Mum bit the bullet and took Dad to the local pub along with another resident and an activity coordinator from the care home. It was a quiet afternoon so noise was minimal in the pub, Dad ordered himself a coffee - not his usual tipple, but times have changed - and he ate all of his food, without any shouting or upset. Mum reported a pleasant afternoon! This is certainly something we need to start doing more of once Dad returns home, although similar to taking a baby out, there's a bit of thought planning to do before hand and lots of things to pack to cater for every eventuality.

Those of you who are Corrie fans will be familiar with Nick Tilsley's portrayal of brain damage following his car accident in the programme. A week after Dad had his stroke, we were told that the damage to Dad's brain was on a parr with a head injury as a result of a road traffic accident. The anger and frustration that Nick portrays is a glimpse to what we are experiencing with Dad, but unfortunately Dad is not acting.

During the month Dad developed a rather aggressive cough. He seemed to be endlessly choking - it was so loud, so often and it made his face go red...it was really concerning for us -  nurses and staff even came on several occasions to see what was happening, hearing it from two corridors away. But for all our efforts of raising it with the care home, it took two weeks before the Doctor saw Dad on her round and diagnosed bronchitis and a course of antibiotics which helped to clear it up with immediate effect. You might wonder why we allowed it to go on for so long without Dad being seen by a Doctor, but after more than a year  of keeping on top of Dad's care you do feel you might be over reacting, especially when the nurses are more qualified than you to know whether to call the Doctor as an emergency. Believe me, Mum was there every day raising our concerns - and rightly so now knowing it was bronchitis that could have led to pneumonia. I believe it was lack of communication between the care home and the surgery that let us down, we were informed the regular Doctor had been on leave for three weeks - contingency springs to mind?

We arranged privately for a second opinion on Dad's medicine, spasticity and mobility before he leaves the care home. The neuro physiotherapist was recommended by the care home's physio and the social worker. He identified straight away that Dad's pain relief is not being managed sufficiently. 'There is no way Alan should be experiencing this much pain' he told us and explained the pain may also be heightened as a result of damage caused by the stroke to the thalamus in the brain, which has a role in feeling pain. He made a recommendation to increase Dad's pain relief medication, which has been put forward in a report. We are currently waiting for the Doctor to review and action. There may be potential side effects including drowsiness, so we were advised it would be better to manage these whilst Dad is in 24 hour care, and as there are less than three weeks to go, we hope this is done soon.

A full assessment was carried out on the left side of Dad's body - 'You hurt me and I'll hurt you' Dad threatened the physio with a clenched right fist. He responded to Dad very professionally and was able to get Dad to stand and walk with his support. He stretched Dad's left arm, not very far before Dad started shouting that he was hurting him. 'He should not be in this much pain' he told us. We were also advised that Dad had good range in his leg and his hamstrings were not too tight, as had previously been suggested. His focus was on Dad's left knee, explaining that this was the reason why Dad could not place his foot to the floor. He felt Dad's knee and diagnosed arthritis and irritation of the knee. Understandable considering Dad had a right knee replacement six years ago, his left knee must be suffering from the same wear and tear of years of sport.

We now have plans to meet with a stroke consultant who works privately in partnership with the neuro physiotherapist to try to get a pathway in place to treat Dad's knee and shoulder simultaneously. We are hopeful, but not naive to know that you 'get what you pay for'.

A second opinion has also been provided on Dad's hand and arm splint and taking the advice, we have now purchased a saebostretch for Dad's left hand to aid with his recovery once he is home. The splint has been mentioned several times during Dad's rehabilitation, but the NHS have been reluctant to provide one. Therefore, we have now invested some of the money that was raised for Dad last year at the charity golf day to aid in his rehabilitation as planned - so thank you if you supported that day.

We have continued to do all that we can to engage with Dad to help his brain continue to reconnect. Music as you know is amazing therapy for Dad - we have been informed he has been on the karaoke machine a few times this month and we had a lovely evening playing hymns and church songs to him as a different genre of music. Hearing him sing so enthusiastically to 'This little light of mine...' put a smile on all of our faces. Dad has also been working through a maths workbook that Mum has taken for him  - admittedly it is for ages 3-4, but it keeps his brain active. Who knows we might be on age 5-6 before you know it.

A lovely moment to share with you this month - back in the day we put a white board in Dad's room at the care home so we could communicate with him when we weren't there. 'Had a great day with you today Dad', 'Wendy and Dan will pick you up tomorrow at 12pm' even Oli and Ruby write messages and draw smiley faces for their Pop-Pops. We like to think the care staff point the messages out to Dad - we know he won't remember the message, but in the moment it is a reminder that he has a family that loves him. Following a toilet visit I had assisted Dad with, we were on our way back out of the room when I showed him the white board so he read the message which ended 'Love Wendy'. He asked me for a pen, so I wheeled Dad close to the board and he wrote 'I do. Alan xxx'.

A further meeting with the social worker went ahead this month to discuss in more detail the arrangements for care when Dad is home. Dad sat with us for the meeting. The social worker speaks slowly as a result of the stroke he suffered 14 years ago, but because he does, Dad seems to be able to keep up with what he is saying. Dad totally engaged with him, I feel there's almost an element of sympathy that Dad has for him, not realising that he is in fact in a worse situation than the social worker. It is probably well documented how I felt about the social worker when he did not support our quest for further rehabilitation for Dad last year, but to see the way he spoke to Dad and how he made him laugh and smile on several occasions throughout the meeting, it made me realise that he obviously does have a very good understanding of what life after stroke really means. Again he referred to the Doctors diagnosis last year - 'look at him now' he said 'who would have thought it'.

To everyone who supported and sponsored Helen and Katie to motivate them on their half marathon challenge raising money for the Stroke Association, thank you so much. It was an amazing and emotional day and they both completed the Bupa Great Birmingham Run in under three hours - fantastic, we were all very proud of them. Back at the care home, we told Dad what they had done on his behalf and he welled up calling them both 'Champs'. I'm not sure on the totals raised yet, but I will let you know.

Well next month I hope to be sharing with you the news that Dad is back home. The vertical lift is in place and the building works, including wet room and ramps at the front and back of the house, are complete with just the snagging issues to finish. We now need to make sure all the equipment is delivered and put in place, such as the bed with rails, air mattress, shower chair - the list of jobs is substantive and time is running out, but at least the 'big jobs' are completed and the house no longer resembles a building site. There has been so much upheaval at Mum and Dad's house lately and there has been a lot of hard work put in to making it all happen. Hopefully a bit of normality will now return - well until Dad returns, as there's nothing normal about wiping your Dads bottom and seeing your Mum struggle to transfer your Dad on her own from a chair to wheelchair and worrying about their safety.

I am well aware that we are not the only family to experience difficult times and that life sometimes does deal you a tough card - but by staying positive and believing and having your support, it certainly helps us. As always - thank you for the visits, for the read and for sharing our journey, until next month.

Love you Dad x

Walking with Dad at the start of the month.

Dad peddled one mile in 10 minutes
using both legs 12/10/13.

A Saturday night watching 'Strictly' - Dad's getting good
at remembering the judges names with a bit of prompting!

Dan, Oli and Ruby join Mum and Dad
 for tea 18/10/13.

Comparing our leg supports...and Dad tells
me I'm the brave one !!!

So proud of them - Helen and Katie with
their well deserved medals 20/10/13.