One year on...

On the 10th May it was one year since Dad had a stroke and our lives changed forever, although we didn't know then to what extent.  We tried to treat the day as any other to keep the emotions at bay. Thank you to all those who got in touch to let us know you were thinking of us x.

Thank you also for the support we received following the article published on the 1st May in the Birmingham Mail.  The Stroke Association advised they too had 'lots of people getting in touch as a result of the article' and that it 'had a really big impact'.

So what can I tell you about Dad's progress through out the month of May? Well...it was rather a good month!  I am hesitant to write with such positivity knowing how quickly things can change, but telling you how it is and compared to the last 12 months - it's been...well, it's been 'OK'.

I am pleased to report that Dad's appetite has continued to increase and he is still enjoying his food.  Most days he eats three meals a day, which looking back to where he was only a couple of months ago is practically a 100% improvement.  He continues to eat between meals and sip cups of tea, the only downside is his sweet tooth as he enjoys biscuits, cakes and chocolate - but in moderation, this is good.  Dad still struggles a little with swallowing, usually if eating quickly and he does experience coughing fits when food becomes stuck in his throat, the nurses have come rushing a couple of times as he has started choking. The dietician has been back to review Dad's weight and eating habits and such is the improvement; she has reduced his nightly PEG feed to 600 ml.  A big step forward - especially as the food is feeding his brain and making him more engaged.

Another step forward is that we have finally got Dad's leg brace remoulded so that it fits him and he can wear it without causing him pain and distress.  It's only been five months since Dad first received it...but it finally fits and is now doing what it was designed for; supporting Dad's leg and foot and aiding his walking. 

A call from Dad's GP instructing the NHS to get us an appointment sooner than the June date they sent us is what it took to be seen by a private company who were brilliant.  I don't usually name names, but Dudley Surgical Appliances gave us a fantastic service.  They dealt with Dad in an excellent manner, engaging him and supporting his left leg and foot as new measurements were taken.  They told us they could understand why Dad had been shouting and swearing when trying to fit the brace, as it was too narrowly curved to fit the fatter part of his ankle - they too said they would have been shouting and swearing had we attempted to do it to them.  How frustrating that the brace was made incorrectly the first time round and we have been forcing Dad's foot in to it and causing him additional, unnecessary pain.

The day we went to collect the remould, there was no shouting, no bad language, just Dad telling us to be careful - and we were.  He was able to take steps as soon as he was wearing it...and since then we have been making sure Dad wears it daily and over the last week or so, he has walked several times each day.  Up until now, it has been the physiotherapist who has supported Dad when walking, so this is new to us and we are giving Dad the confidence to trust us as we have been assisting him.  At the moment Dad is walking only short distances with us; from his wheelchair and back to his chair and walking to the table to eat his evening meal.  The medication he started taking last month for the relief of neuropathic pain also appears to be making a big difference as we are able to touch and move Dad's foot without him shouting in pain.  Dad always needs support from someone on his left side when standing and walking and he does get tired (by his sixth walk of the day!), but he wants to do it, and asks 'shall I walk?' which is excellent positivity.  It's not the prettiest of walks but Dad is only just getting back in to the routine of doing it.

The way he gets in and out of my car now is fantastic - it's all down to practice, practice, practice.  Dad even put his own seat belt on without prompting this month and Mum's ended up telling him to 'slow down' as he starts swinging his legs out of the car before I've even assembled the wheelchair! Routine definitely helps.

We have discovered for ourselves that it still takes two to take Dad to the commode, no problems with getting Dad on to the commode, but afterwards when Dad needs cleaning, he still requires someone to stand at his left side for support whilst the other person cleans and pulls his pad, pants and trousers up.  Which goes to show that Mum would not be able to cope on her own looking after Dad.  But this is something we will continue to work on with Dad throughout his rehabilitation. 

Dad has been taking his medication without much trouble this month.  He usually asks what the tablet or medicine is for before taking them - which is only sensible for someone to ask who is suffering from short term memory loss.  Would you take a tablet from someone you didn't recognise if you didn't know what it was for?!  Once explained Dad takes it no messing.  Even the blood sugar tests and insulin injections Dad has accepted with little protest this month.  One of the nurses at the care home even reported to us that Dad had said to her 'thank you for looking after me' - I think she nearly fainted!

Unfortunately Dad had a filling that came out of his mouth this month.  He said to Mum whilst he was eating 'I think my tooth's fallen out' sure enough it was a filling.  Dad is now waiting for a visit from the dentist to the care home in June.  I really don't know how that one will work out with Dad keeping his mouth open and not biting the dentist's fingers off...one to write about next month I expect.

As a family, we have had two meetings to attend in May to review Dad's health; one with his GP and one with the psychiatrist. They both supported us in the belief that Dad would benefit from further rehabilitation - but the decision lies with the PCT who have still not got back to us following our meeting in April. Another one I'm sure I will be writing about next month.

We have been able to take Dad home and back to Dan and Sue's for day visits on several occasions this month, making use of the two sunny bank holiday weekends we had at the start and end of May.  As a family it felt good to have Dad with us eating alfresco, watching the grandchildren playing in the garden and generally enjoying the sunshine.  Who'd have thought this would have been possible even a few months ago? Upon returning to the care home Dad doesn't remember where he's been that day - but in the moment he knows he's happy and that he's surrounded by love.

We took Dad out in the car to visit a friend who lives nearby, what a shock he had when we pulled up at the bottom of his drive and he saw Dad waving at him!  Sitting in the car, without sight of his wheelchair and disability and the way he was engaging and chatting in the moment, Dad seemed the best he'd been for a very long time.  He could almost have been mistaken for having nothing wrong with him.

The care home put on two events in May with singers performing - it's an excellent way to get all residents, staff and visitors involved as most of us respond to music...and as you know, Dad certainly does.  The carers tell us 'Give Al a name and he'll always find a song to sing'! The first event was for Eurovision where Dad knew the words to all the songs, carrying out all the actions with his right arm and conducting the singers as he sang!  The second was a celebration of the care home's first anniversary and again Dad thoroughly enjoyed joining in, becoming a little emotional at times.  It is all very overwhelming for Mum to see Dad, as he is now, enjoying himself in the music. Although before his stroke Dad loved his music, he would never have been one to take the lime light and sing out loud in public.  If any friends or family would like to see the next musical performance at the care home, I know Mum would welcome the support, so please get in touch to find out dates, as Dan and I can't always get time off work.

Dad's recollection of song lyrics is amazing and this also applies to poetry.  An 82 year old gentleman who visits his niece in the care home sometimes takes time out to sit with Dad to recite and read poetry with him.  Dad really enjoys it and the visitor is often left astounded when Dad joins in the recitals from memory - one of his favourites being A E Houseman.

During the month we have still experienced the occasional blip when Mum has arrived at the care home to find Dad soaking wet in his chair and in desperate need of changing, when the response to the 'nurse call' button for Dad to be changed has sometimes been excessive. And there have still been a few outbursts of bad language as a result of a lack of care around Dad's arm and leg.  He currently has an open wound on his left shin which is being monitored - I hope it will heal soon as it has already been over a week.  On the whole though, things have improved. Dad does seem a lot calmer and gentler - much more like my Dad of old.  We have found he is more questioning of things around him and has more to say for himself, although as stated he was never one for being loud or being centre of attention.  Dad even told us the other day that Charles Darwin was a scientist when we were pondering what in fact he was famous for!

I would like to believe that we are on the up and that Dad is going to make further positive progress.  I am so proud of his new determination and want for walking again and the love that he is pouring out in abundance to his family for 'loving and supporting me' he says.  I am, as I said at the start, mindful of how quickly things can change, but as many stroke survivors state, improvement after stroke is constant and can be made year on year, provided the risks of another stroke are reduced.

Thank you for reading, for the support that is still very much needed and appreciated and especially for believing.

Love you Dad x

Dad eating alfresco with his Family 26/5/13

Oli making his Pop-Pops laugh
at the care home!

'My hairband suits Pop-Pops doesn't it?'
asks Ruby!

Dad standing tall and walking proudly.

Dad relaxing in his own garden 2/6/2013