Life after Stroke - October 2014

Hope you all had a wonderful Summer and spent some quality time with your loved ones during the many beautiful sunny days we were lucky to have had these last few months.  We certainly made the most of taking Dad out to enjoy the sunshine on as many days as we could, sometimes just for 15 minutes for him to get some fresh air, other times for over an hour, when he picked up a healthy colour too.  The motorised wheelchair has been put to good use, but Mum still hasn't been able to take Dad out on her own due to the complications I wrote about last time about transferring Dad.  

Our Summer got off to a good start with three family birthday’s in the first week of July.  Dan and Ruby celebrated their birthday’s with Nanny and PopPops. It was great to see Dad sharing Ruby's excitement when opening her birthday presents, especially her ‘ruby red’ dressing up shoes…'Put them on Ruby' Dad shouted, ‘Put them on and give us a twirl’.  It was a happy family moment for us all to enjoy hearing Dad engage with us.

Mum’s birthday followed.  She explained to Dad that this was the first birthday for three years that they had celebrated together in the comfort of their own home.  'Two years ago you were at NG' she told Dad 'and last year you were at JC. I used to get two buses every day to see you Al' she reminded Dad – 'two buses…what does that tell you?'…Dad thought about it for a while….'That you like buses?’ he replied.  It made us all laugh – but I still don’t know if this is Dad’s sense of humour or whether he does think that literally - he says it's his humour!

As is the norm most months, we took Dad to a couple of hospital appointments during the Summer.  Early July he attended a Radiography appointment on his throat.  Dad gets a lot of reflux after eating and has been known to ‘heck’ and clear his throat for well over an hour after he has eaten, it’s not pleasant for anyone to listen to.  The dietician suggested the appointment to identify what is going on in Dad's throat to make him do this.  He was made to eat a variety of foods with a special substance in that showed on the x-ray when he swallowed. As is typical on these occasions, his swallowing was good and he didn’t ‘heck’ or choke. It was noted that a little food might linger longer than it perhaps should in the throat, but on the second swallow it went in to his stomach. Arthritis was also mentioned, but no cure provided. However many times we tell Dad to slow down with his eating and to breath in between mouthfuls, he still continues to eat his food quickly which obviously doesn't help. The 'hecking' continues.

A second appointment to the pain management consultant followed in July and I am pleased to say the experience was as good, if not better, than our first in March.  To us, Dad doesn’t appear anywhere near as angry as he used to and we can only put this down to the fact that his pain is now being managed.  It is frustrating that it wasn’t managed sooner in his recovery but it makes us appreciate the care and understanding he now receives when he attends these appointments, we can’t praise the Consultant and Physiotherapist enough.

We arranged for a visit from one of JC's residents to come and see Dad and a lovely afternoon was spent in Mum and Dad's garden catching up with him. We spent a lot of time with Lee during the year Dad was at JC and he became a part of our family.  He commented how relaxed and at ease Dad seemed in his own surroundings.  A lot of that, I am sure, is down to the devotion of love and care Mum gives Dad 24/7. 

During August, whilst we all enjoyed time out on our sunny summer holidays abroad, Mum remained committed to Dad day in day out repeating their daily routine.  She has often stated that she feels as though she is on a constant treadmill and can’t get off - there is no lie in for Mum when she’s having an off day or feeling tired. We can only do so much to give support, so we are currently looking in to alternative possibilities to give Mum some respite. A local facility providing day care and activities for dementia patients has recently been refurbished having had a £900k transformation.  We are trying to get the go ahead for Dad to attend a couple of afternoons a week to help give Mum some time for herself.  During our Summer walks we have monitored progress on the building and when recently walking past, even managed to get an invite inside to view the transformation minus the furniture! As with all things that incur a cost, there are forms to be completed and a process to follow. I'm not sure how enthusiastic Dad will be taking him out of his cosy warm home to travel in the wet weather we've been having recently, but once at the Centre, we really hope he is treated with respect, is well looked after and is entertained and kept occupied...not that he'll remember anything to tell us, but we can but hope he enjoys himself whilst he is in their care.

Dad’s physio sessions at the local hospital started in August.  He has shown good progress in the three he has attended to date, walking along the parallel bars with the support of the physiotherapist .  For me, Dad walks a few steps in his own home really well, and does it even better after his legs have had a good stretch by the physio.

An unplanned trip to hospital followed at the end of August this time via A&E. I received a call from Mum just as I was heading up to bed telling me that Dad's lips had turned blue, he’d stopped breathing and the paramedics were taking them to hospital in the ambulance. A thousand thoughts raced through my head as I drove over to the hospital 'Is this it?', 'What was the last thing my Dad said to me?' 'Haven't my parents been through enough dramas recently?' After being admitted to the Resus Unit, a 16 hour stint in the hospital followed and Dad was finally discharged from hospital at 2pm the next day, much to our relief he was not admitted on to a ward. A UTI was confirmed which caused low blood pressure. The positive on this occasion was the excellent care provided by hospital staff and their understanding of Dads dementia...it made a big difference - and yes, I did eventually get round to writing to the hospital acknowledging the care and professionalism we received from the nurses this time around.  

It came as a big surprise to look up from the cubicle Dad was moved to at 3am in the morning to see a big beaming face smiling at me from the cubicle opposite...it was another of the residents from JC! Due to his brain damage 'A' is unable to speak - but it certainly showed there was no damage to his memory as he recognised me straight away. He was over the moon to see Mum when she arrived back that morning. 'Wendy' he attempted to say - Mum and Dad were part of his daily life for over a year at JC so it meant a lot to know he remembered us. After dressing Dad and getting him in his wheelchair, we pushed him over to see his old friend. Dad didn't remember him, but knew they were 'friends' by the reaction he received. 'A' leant forward from his bed to shake Dad's hand, his face full of smiles and recognition. 'Hello!'Dad said, 'Good to see you. You must pop over some time' - referring to his cubicle...it made sense in Dad's head. It was another one of those special moments.

The care that Dad receives at home continues to be of a good standard.  He has some lovely ladies providing his care, but a special mention must go to Sarah as we think she is wonderful! She always arrives with a smile on her face and makes Dad her priority throughout her visit. She's had a few difficulties in her life recently, yet she never complains, she never changes and just 'gets on with it'. Sarah has built a fantastic relationship with Dad which has a huge positive impact on Mum and the rest of us.  She is so bubbly and her laughter is infectious - she loves a good sing song with Dad, unbeknownst to us all, Dad sings 'The Town Flirt' to her which she finds hilarious! If Sarah knew I was writing this she'd be most embarrassed, as she is a down to earth and modest person, but I think she deserves recognition in her profession as a carer as she takes pride in providing the service that she delivers.

We received extremely sad news at the end of August from a relative telling us her Dad had suffered a massive stroke and was in hospital. Our hearts went out to her and her family as we empathised knowing only too well what they would be experiencing. We have offered support and shared advice to ensure they have a better understanding of the road ahead and an appreciation of the correct care that should be provided to her Dad right now. It's a long journey, as regular readers will know from the trials and tribulations I write about, and their lives will never be the same again. My thoughts and prayers are with them for positive progress to be made for a successful recovery that allows a good quality of life. 

I will continue to cherish the special moments I share with my family - the singing sessions that put a smile on my Dad's face. I find it amazing that he can't remember what was said 30 seconds ago, yet he can remember the words to recent songs such as Magic's 'Rude' - which we enjoy singing together! The brain - one of the most complex yet magnificent organs in our bodies...and so fragile.

Well, I shall end my writing there. Now the mornings are dark (and Dad finds it more difficult to get out of bed), the nights are drawing in and the leaves are falling from the trees, I shall wish you all the very best for a happy and healthy rest of the year and thank you as always for taking the time to share our journey of life after stroke.

Love you Dad x




Pop-pops and Ruby on her birthday.

 

Mum and Dad together on Mum's birthday.





A visit from Lee.





Out for a drive with Dad (we were

parked up at the time)!



Dad working hard with his Physiotherapist.





Walking tall.





Enjoying the sunshine in the garden.