A week of Mixed Messages

29/7/2012

To anybody and everybody who is reading this blog, thank you for your support and for taking the time to keep up to date with Dad's recovery and the journey we are experiencing...it's good to know we are not doing it alone.  As a family we have received numerous emails and texts offering kind words and support - thank you, they are all very much appreciated.

Well...following Dad's stint in hospital last weekend, we've had another week of ups and downs.  The main issue this week being the mixed messages we have received from medical staff who just don't seem to communicate with each other.

The good news I guess, is that Dad came out of hospital on Tuesday afternoon and returned to NG.  But even that wasn't straight forward - first we were told Dad was coming out of hospital Monday evening, then it was first thing Tuesday morning...and then we were told conflicting information about Dad's scan results by various medical staff.  We hadn't got a clue who or what to believe - all adding to the confusion and causing unnecessary stress.

We requested a meeting with a Doctor to officially explain the results to us.   Mum met with the Doctor Thursday afternoon - he was the same one who assessed Dad's mental capacity last week. (Coincidently - whilst Mum was sitting in the hospital cafe on Monday during the two hour gap between visiting times - the Doctor recognised Mum and went over to ask what she was doing there - which we thought was good of him).

So from the information explained to Mum, our understanding is that the scan now shows three separate shadows of scarring, previously there were two.  This indicates that Dad has suffered a 'Transient Ischemic Attack' (TIA) more commonly known as a mini stroke. A TIA does not necessarily cause damage to the brain as it doesn't cause brain tissue to die, but it acts as a warning sign that a true stroke may occur unless something is done to prevent it.  A TIA is likely to have been what Dad suffered before his 'massive stroke' in May, but if it happened when he was sleeping, he would have woken none the wiser.

As this has occurred again after the massive stroke - it indicates that more needs to be done to manage the clots going to Dad's brain. The Doctor picked up again on Dad's irregular heartbeat, we were also concerned about this in A&E Saturday night when the monitor kept beeping the message 'irregular heartbeat'.  He explained that he will write to Dad's Consultant requesting to bring his six monthly check up in November forward to the next couple of weeks. He advised that more can be done to manage the irregularities in Dad's heartbeat. I'm not clear whether this will be done by medication or if an operation is required? Of course - I will keep you updated with any news.  Mum was also told that Dad has been put on more medication to assist in managing the seizures and epileptic fits he experienced last Saturday.  After a stroke there is a lot of electricity moving around the brain and it is common for this to come out out as spasms in the body.  So...if what Dad experienced last week were spasms - when did Dad suffer the TIA....it's not that clear to me....?

Anyway - after experiencing Dad being very emotional and restless during the few days in hospital, (on each visit we found him upset, unaware of what was going on and him telling us he thought the end had come) it was quite comforting to see him back in his room at NG. Dad told me Tuesday evening 'this doesn't feel real'.  

I visited Dad Friday afternoon - it was good to be sitting with him outside in the fresh air and we were able to push him around the grounds in his wheelchair, only experiencing a couple of minor incidents when Dad's left foot slipped off the plate and the delay in getting a cushion for Dad to sit on in the chair.

Dad remained alert, and there was no closing of the left eye - he only requested to get back in to bed after he had eaten his tea (although he repeated the request every two minutes, and the carers didn't respond as quickly as we would have liked when we pressed the button for assistance). Dad is still confused and frustrated with regards to his left side not functioning and  difficulties still occur with Dad slipping out of the wheelchair, but his core strength is becoming stronger.  

Dad gets mixed up with what he hears on the TV and the here and now.  He told Dan yesterday that he had travelled along way from Halesowen to visit him in London.  Dan explained to him that he was in Netherton, but Dad thought he was in London, probably due to watching the Olympics on the TV.  But progress is being made and it will only get better.

Keep it up you're doing a good job Dad and please, if you're reading this...keep believing :-)

Love you Dad x

Dad's back in hospital...22/7/12

Dad's back in hospital...

Sunday 22nd July

It really feels like two steps forward one step back at the moment - or even one step forward two steps back...but that would be a negative attitude to take wouldn't it...?

Yesterday Dad had been sick after breakfast, we're still not even sure if he'd eaten anything?  So the Carers put Dad back in to bed.  Dan and Oli arrived for visiting hours on the afternoon, so Dad was put back in to his wheelchair and as it was a surprisingly nice day for the 2012 Summer we are experiencing, Dan decided to take Dad outside for a bit of fresh air.  Dad had been told to go outside without his PEG feeding water in to his stomach on the proviso that he drank a glass of squash. Once outside, Dad emptied the squash out of his glass and on to the grass.  Mum and I arrived about half 3 to see Dad looking ghastly pale and very tired. We decided it would be best for Dad to get back in to bed and have a sleep.

Dad's colour started to come back, but that's when the seizures and spasms started.  They started in his left leg, went up to his left arm at times - and even went to his head.  Dad could not stop them as they were shaking the left side of his body. His left eye remained closed for most of the time. The nurse was concerned - especially as Dad's blood pressure continued to give a low reading.  The spasms continued over a period of two hours - in which time the nurse took an instruction from the Doctor on call to phone the paramedics and get Dad to hospital.  

So then Dad, Mum, Len for some of the night, an extremely large and heavy bag containing Dad's medication and I, endured a long worrying Saturday night in A&E for the next eight hours.   Dad was eventually seen by the Stroke Nurse, A&E Doctor and at about 2am in the morning, the Doctor from the Emergency Assessment Unit (EAU).  The same questions were asked over and over again and the same answers were told.  There were initial concerns of Dad experiencing a mini stroke or that the seizures could be post stroke related caused by the scar tissue on his brain, having a direct link to epilepsy.  Dad was booked in for a CT scan for this morning with the aim of comparing the scan to his previous one to identify if any more damage had been done - thus potentially ruling out another stroke. If the spasms do relate to epilepsy Dad will need more medication to manage it - we were told that it may be trial and error with the right dosage because the drug will need to work with the walfarin and not against it.

We probably spent more time with Dad last night then we usually do, as visiting hours are restricted at NG to 2 - 7 pm.  During this time I would say we witnessed what the carers and OT refer to as Dad's behavioural issues.  It's actually difficult to write down in words, but I know what I experienced was clearly not how my Dad behaved prior to the stroke.  We reluctantly left Dad in one of the curtained cubicles on the EAU.  It was distressing to leave him lying on one of the beds you get put on in A&E knowing that his bottom was in pain from the mattress.  Dad has been using an air mattress for the last 10 weeks - it makes you realise what state Dad could be in if he hadn't been using it. 

And so today....well the CT scan never happened, but it's a Sunday - Don't get ill at the weekend the newspapers report - nothing gets done in a hospital on a weekend.  So we hadn't held our breath.  Mum was informed when she phoned this morning that Dad had had a comfortable night (mmmm he looked really comfortable when we left him at 2.15 am this morning....I don't think),  and that he had since moved on to a short stay ward.  

Mum and I visited Dad between 2 - 4pm.  He seemed quite well all things considered.  He told us I thought this was it, I thought I was going to have to stay lying here forever.  We try and tell Dad every step of his recovery exactly what's happening - but he doesn't remember.  The thought of Dad lying there and wondering where the hell he was and if anybody would ever come and see him again breaks my heart.  He seemed happy to see us.  We chatted - he interacted, quite intellectually, and he appeared to be calm and understanding to what was going on.  

We checked with the Staff Nurse why Dad didn't have his PEG feed going through - he had been without water and nutrients for 24 hours by this time.  A glucose bag had been going in to a cannula in Dad's hand to increase his sugar levels, but had since run out. The staff nurse told us NG had not sent the information over. I knew NG had because I had stood in the A&E cubicle last night reading all 50+ pages of Dad's notes to find out what had been written about him and knew the information about his medication and PEG feed was in there.  Mum kindly found the document and showed the staff nurse the information she needed.

But then to tonight's visit....apologies if this is a rather long blog - I suppose I have a lot of worries and concerns to get off my chest.  Dan and Mum went to the late visit, they arrived to see Dad calling out to another patient's visitors to come on over.  He said about a visitor standing at another patient's bed - he's standing around with nothing to do, come on come over here.  He started shouting the nurse to come over too.  He was fidgeting and messing with the pillows and wasn't the calm understanding Alan who Mum had left only a couple of hours before.  He was also saying his shoulder was in pain.  Dad had still not been set up on his PEG for his nutrients or water to be fed to him.  This was well over 24 hours now and I am now wondering if maybe Dad was dehydrated and if it could effect his behaviour in this way??  We had told the staff nurse earlier that Dad could eat a soft pureed diet and have a drink with one scoop of thickner in - she said she'd look in to it - but Dad had still not eaten anything.  Mum asked the staff why Dad still hadn't received any food or drink and she was told the Doctor would be round later to review him.  We will be phoning very soon expecting an update from the ward.  Dad's CT scan is supposedly booked in tomorrow, but the staff were not sure of what time.  They mentioned Dad may be back at NG tomorrow.

And just to add there...we popped in to NG earlier to pick up some PJs for Dad and his shaver and toothbrush...the nurses and carers kindly asked how Dad was and wished to be remembered to him.  But we were also advised that if Dad's not back by tomorrow it's up to the PCT if they give Dad's room to someone else and he'll have to go back in to the system - we just do what we're told!  Great ay...!?!

Anyway - one day at a time is the only way you can really take this recovery and tomorrow's another day.  What wonderful news it would be to hear that the CT scan shows no further damage to Dad's brain and the spasms were brought on by the scar tissue and has no link to epilepsy - that would be a good outcome wouldn't it...and then Dad can get back to NG and we can proceed with our plan for Dad's recovery.  You keep that hope right there with me.  

Thanks for the read.

Love you Dad x

Dad's Progress...21/7/12

Saturday 21st July

This week has been a productive week - full of highs and lows.

We've met with the Speech And Language Therapist, Nutritional Nurse, as well as reviewing places where Dad can go for the next phase of his recovery.

We didn't learn a great deal from the SALT lady.  Dad is speaking well, he understands what is being said, he is relearning and using the new information he learns, however his short term memory is still poor. The fact remains Dad has cognitive and behavioural issues.

The Nutritional lady was really impressed with Dad's progress.  On previous visits she had seen Dad in bed, struggling to stay awake.  She said seeing Dad in a wheelchair, sitting upright and listening to what was being said was a big improvement. She said we should encourage Dad to feed himself, we know he can do it, and it must become habit for him.  In a stroke where the left side of the body is left immobile, it isn't uncommon for a person to lose their appetite - but this can come back.  She explained how many things will taste very different to Dad, compared with before the stroke. For example a cup of tea may taste bitter to Dad because his swallowing is slow and the bitterness of the tea will stay in his throat longer than we are used too.  She will work with us over the next couple of weeks with the aim of reducing Dad's nutritional feed.  We are pleased to hear that Dad has been eating more of his meals at lunchtimes as well as his evening meals and he has also been feeding himself the latter part of this week.

We are getting Dad in to the habits of washing his hands, shaving, brushing his teeth and combing his hair.  He has had a couple of fantastic days this week sitting in a wheelchair from 8.30 am in the morning until about 5.30 pm - this is excellent progress as Dad has struggled to sit out for even two hours over the last couple of weeks.  This shows his tolerance levels are improving and his stomach muscles strengthening.  Dad will lean forward on to a pillow to rest, however he is able to pull himself back up using his core strength. Dad is remaining upright when sitting and not leaning to the left  - this is all very good, subtle progress. He does at times, slide forward in his chair, and we have to work with him to lift his bottom towards the back of the chair - not easy, but we persist.

Dad's behavioural issues are a concern.  He gets frustrated during physio and we have been told he raises a hand - though we are not aware of him hitting out?  He has started to hit his poor hand and arm saying come on wake up. Although there are many instances of Dad's personality showing through, there are instances where traits of the stroke effects are showing - and this is with regard to inappropriate comments that Dad would never normally have made.

With regard to Dad's physio - this week we witnessed the physios spend 45 minutes trying to encourage and support him to move from the bed to a wheelchair. Dad was unable to find the strength and trust to do it, which resulted in the large hoist having to be used.  However, Dad's OT did tell us that he managed it later in the week.  They also worked on his balance by getting him to stand.  Rather than Dad holding on to the physio with his good arm, he wanted to lean against the wardrobe - is this a bit of Dad's independence and determination showing...or is this classed as behavioural issues because he is not listening to what he is told to do...?  Due to Dad's short term memory we were told he forgets instructions which hinders his progress.  Dad also kicked a ball across the lounge with another patient - passing from one side to the other.

Following a couple of intense days where Mum and I visited several ' nursing homes', we met with the social worker yesterday.  Many of you will know my views of our social worker. I explained that where my Dad was concerned I will do anything possible to ensure he has every opportunity to make the best recovery he can.

Dad is clearly too young to go to an old peoples nursing home - although some were better than others, we feel Dad may give up on the progress he is making if not continuously challenged.  It was emotional to even imagine Dad sitting with the residents and being 'one of them', with Mum becoming overwhelmed on several occasions.  Thankfully, we found an alternative option - a newly opened Rehabilitation Unit.  They have cleverly identified a niche in the market where not all people suffering brain damage are old and at the end of their lives - patients need stimulating and rehabilitating before moving back home and back to the community.  This place has more of a hotel feel to it than a home, which goes someway to making it feel more like an interim measure.  Their aim is to work with Dad on a daily basis, they have a resident neurophysio and a team of assistant therapists as well as a gym on site.  If Dad were to go into a 'Nursing Home' he would have a visit from  the Stroke Community Team once a week if lucky and potential visits to a local hospital for physio sessions - but he would have to travel there and wait for his turn before even doing any physio work. We are not naive enough to think there won't be teething problems - it is a newly opened unit and we will all have to get used to the set up, as well as the carers, nurses and physios familiarise themselves with Dad.  

So how long until Dad moves....well it is likely to be next week...and that is when the NHS stop funding and we start paying!  It is a costly option - but we believe it will be worth it. We will monitor the progress and continue to have review meetings over the next few months and hope and pray that Dad is able to make the progress to enable him to come home where he belongs. 

Love you Dad x

Monday 16th July

Monday 16th July

So based on the feedback from my Mum...I have to keep my daily updates shorter and keep the detail for my personal diary!

So here we go...something to lift all of our spirits.  Mum met with the Doctor today - he had come to check out Dad's mental ability.  He spent some time speaking with Dad on his own, to Mum and Dad together and then took Mum in to a private room to have a chat.

He said the fact that Dad had even survived the stroke at all, let alone the progress he has made, was a surprise. He was impressed with Dad's ability considering the extent of the brain damage and reiterated the need for brain stimulation. When Mum mentioned the research we had done on computer stimulation, he agreed that computers are a good source to help stimulate and improve the brain.

According to Mum the Doctor said at the rate of progress Dad is making, his memory could come back in the next three, six, twelve months, when the brain finds new pathways.

The Doctor did say that he could see from the MRI and CT scan that Dad had had a previous stroke....news to us all.  Mum said I've been married to Alan for 42 years and I'm not aware of him having had a stroke.  The scan showed some scarring on Dad's brain and the Doctor was convinced it wasn't from this stroke.  However, he also said that this is common in many people.

He advised Mum that the PEG wasn't a bad thing, as it helps to prevent infections.  

The OT also spoke to Mum as she'd heard we didn't think Dad had progressed last week.  She said her report showed that Dad had received physio on four days - twice in one day.  When  Dad had his shower last week, the physios spent 80 minutes with him and carried out much of the physio work in the shower.

To continue the brain stimulation, Dad was taken a Saga magazine, which he seemed engrossed in reading, a book in a large font size and a book of word searches.

Dad didn't eat any breakfast today, he ate half a bowl of soup 'himself' for dinner, and ate all his tea and main meal fed by Mum this evening.

Hope that's short and sweet enough?  Tomorrow we meet with the SALT nurse (Speech and Language Therapist don't you know) and view some potential nursing homes.

Love you Dad x

Sunday 15th July

Sunday 15th July

Did I end yesterday saying we were waiting for that next uplifting moment...mmmm well unfortunately it didn't come today!

Mum, Sue and Ruby joined Dad at the usual dining room table today at 2pm, just after the carers had got Dad out of bed.  I've been asked where Dan is lately - so to keep you informed, he's been bedridden with tonsillitis, conjunctivitis and the flu...but he's on the mend and will hopefully be well enough and germ free to visit Dad in the week. Back to today - Dad. Mum. Sue and Ruby had been talking and colouring pictures at the table for an hour or so, when Dad had a funny turn.  He had said that he needed to go the toilet, so Mum went to find a carer who could assist.  Meanwhile, Dad went very pale and ended up being sick over himself, and the table, luckily Sue was with him and she and a carer got the Nurses to respond quickly.

Dad's blood pressure had gone low and his temperature was high.  The carers changed Dad in to his pyjamas and put him back in to bed.  Mum was emotional after being given a fright by Dad, and Dad looked incredibly pale and went in to a deep sleep.

Dad's blood sugars were checked to see if they had anything to do with the turn, the reading was 9.7, later going down to 5.something and was therefore ruled out.  The man who had been in the room opposite Dad was rushed in to hospital on Wednesday night having had a funny turn, his room has since been vacated and now has somebody new in it?!

The Nurse had stopped Dads's water going through his PEG tube following his turn, but when she returned to set the water back up she couldn't get the machine to work.  Dad ended up having 100ml of water injected directly in to his PEG.  We were told Dad had refused both his breakfast and lunch again today.  One of the carers came in to see how Dad was and spoke to us about his refusal to eat.  She said if they were to force Dad to eat after he has said he doesn't want to, it can be construed as abuse and they are therefore unable to keep asking.  She reiterated that the 1,500ml of nutrients that goes in to Dads PEG each day is the equivalent of two good meals which would fill dad's stomach up.  So we end up in a catch 22 situation; Dad's too full to eat, but if he doesn't eat, the nutrients won't be reduced.  A couple of weeks ago the SALT nurse reduced Dad's feed to 1,000ml but over a period of a few days decided Dad wasn't eating enough to sustain itl. Tonight Dad was brought soup and a yoghurt for tea.  He had the soup and even had a second bowl.  He said the yoghurt was too sweet for him.

Dad was in better spirits after his food, he was singing and talking with his visitors tonight.  Dad doesn't talk for long periods of time, he responds with one liners which is often banter or sarcastic.  He was speaking about his relatives from years ago again - making reference to the Lees.  There is a lot of confusion in the things he says.

After doing more hours of research on the internet again tonight - I came across the following:

View periods of apparent lack of progress as times of 'consolidation' where the individual is gaining sufficient practice with the new skills to make them become habits.  It is unreasonable to expect the individual to learn new information every day.  Allow time in success before presenting new challenges.

And so taking this on board, I shall remain positive and let Dad embrace the skills he is relearning. 

Love you Dad x

Saturday 14th July

Saturday 14th July

So today Mum, Sue and Oli went so see Dad - at you guessed it - 2pm.  And where was Dad....yep sitting in his wheelchair at 'the usual' table in the dining room...and how long had he been there...you're getting good at this...yes that's right...the carers had just got Dad out of bed.  Can you see there's a bit of a routine going on here?  So much for the four hours 12pm - until 4pm as agreed and instructed by the Occupational Therapist.

We are realising now why Dad is always sitting on his own in the dining room - basically Dad doesn't have the energy to keep upright for long periods of time sitting in a chair - so by putting a table in front of him, Dad can slump or lean against the table when he is tired - rather than if Dad was sitting in a chair in the lounge when the carers have to take responsibility to look after him. Great - so Dad loses out on interacting with other people and watching the TV because he takes up too much of the carers time?  I've bought Dad's ipod shuffle home for a few days,
1) because I want to upload some more music for him and 
2) because we don't like the fact the carers put Dads earphones on him and leave him to sing out loud alone in the dining room.

Dad was able to engage today by helping Oli with his Ben10 magazine do 'spot the difference' puzzles, word searches and a bit of colouring.  This was good as it kept Dad occupied and helped stimulate him so he was distracted and not thinking about going back to bed.  We will endeavor to find Dad some adult word searches and puzzle solving books that we can take in and get him to do. Bring some along if you're visiting Dad and you've got some good ones.

We have noticed Dad's communication is definitely not as good when he is sitting in a wheelchair to when he is lying in bed - maybe it's because it is so tiring for him sitting in the chair and it uses up all of his energies?

Dad was complaining again about the pain in his underarm today...considering he is taking the muscle relief medicine three times a day and he takes paracetamol - it must be really bad.  He was complaining about his bottom hurting on the wheelchair - but when Mum thinks back, she doesn't recall Dad sitting on one of the cushions as he usually does.  Dad also wasn't given a pillow for him to rest his arm on.

Dad ate 3/4 of his lunch today - which is good news and he ate all of his tea.  Let's hope he keeps this up.

One thing Sue realised today was how bad Dad's short term memory is.  Sue had spent two hours sitting with Dad this afternoon, but when he had been put back in to bed and Sue went back to his room - Dad greeted her as if it was the first time he had seen her.  Can we hope for short term memory to come back or is this how it will always be?  The extent of the damage to Dad's brain is shown when he refers to people from the past - he said he saw his Dad outside mowing the lawn the other day and today he was asking Oli where his Grandpa was.  

Difficult times.  We are all waiting for that moment that will uplift us and keep our hope alive when we see another improvement to Dad's health.  But again - let's not forget how far he has come since 10th May...

Love you Dad x

Friday 13th July

Friday 13th July

Well I know family and friends out there are reading this because I get sent a report detailing the number of views each blog receives - which is excellent to know.  However, a bit disappointing is the fact that people can't leave comments and messages of support if they don't have 'gmail' accounts.  If I can find another site that allows comments I will transfer - but for now, this will have to do.  But thanks for taking time out to read about Dad's progress.

Today Mum went to see Dad at 2pm, (it's the norm isn't it), myself and Dawn arrived just after 3pm.  Dad was dressed and had been put in to a small wheelchair just before Mum arrived.  The physios hadn't been to see Dad today and we were told he had refused breakfast and lunch again.  The hours until 2 pm must really drag for Dad - what's he doing all this time apart from lying in his bed alone with his thoughts?  I mentioned to one of the Nurses that Dad had been in bed all day yesterday and that he hadn't done anywhere near the amount of physio he had done last week - she said she would speak to the Carers as we had agreed Dad would always be sitting out at least for when we arrived, and advised us that Dad should only be getting physio once or twice a week and not every day...

When we arrived I could see Dad was sitting with Mum at a table in the dining room - I could tell he was concentrating...he was reading a golf magazine.  He also read several pages from my diary - he read out loud at first, he was slow but was able to read and understand what he read, asking for help on words where my writing wasn't so great.  The pages he read were of when he was in hospital in May and fighting pneumonia.  We forget just how far Dad has come in nine weeks, and it reminded us of what a scary time those early days were for us all.  

I asked Dad to write something in my diary - he wrote keep shining and sing and dance.  I asked him to draw an arrow on the paper to each of us round the table as I said our names - he correctly drew an arrow to each one of us matching the correct name.  Mum said write down how you are feeling Alan - Dad wrote I FEEL FINE, Up & down, main up few dones (sic). 

Dad again complained of the pain in his left armpit - it is the muscle tone tightening.  He used his hand held massager to ease the pain and I also gave him a mini hot water bottle - we were advised previously by the physio that heat was good for the pain.  Dad started getting tired after two hours in the chair and the Carers got him back in to bed shortly after 4pm.

Dad ate all of his tea again this evening.  Soup to start and a jacket potato (minus the jacket) with cheese, Dad said it was dry so I went and got some more soup for him to put on the potato - he ate it all.  We reiterated to Dad how important it is to eat and that he should eat his breakfast and lunch.  We have noticed that Dad becomes more engaged and alert after he has eaten food.  

To look at, although Dad has lost some weight since he was admitted to hospital on 10th May he does look quite well.  Lying in his bed, his disabilities are hidden by a sheet, and it is only when you engage with Dad that you get an appreciation of the cognitive issues caused by the stroke.  Dad has a long way to go in his recovery, but when you look back to the early days and  the milestones he has achieved - beating pneumonia, learning to swallow again, speaking, knowing when he needs the toilet, and much more - it is then we realise how far Dad has come in a short space of time considering he has suffered a 'massive' stroke.

For those that haven't been able to see Dad - I've attached a photo of Mum with him last Saturday afternoon.  Also attached below is a photo taken on the 17th May, a week after Dad was admitted to hospital and the day he had has MRI scan.  Dad had just been diagnosed with pneumonia.

Love you Dad x

Thursday 12th July

Thursday 12th July

I arrived early to see Dad today at 1.45 pm.  When I peered through Dad's window I could see he was fast asleep in bed.  I was pleased to see when I got to Dad's room, that the Carers had got him dressed today.  He had not been out of bed, and didn't get out all day.  The Carers had asked Dad if he wanted to get out, but he couldn't be coaxed.  We are concerned that Dad's tiredness may be from the anti-depressants he started last week, although it might well be an effect from his stroke - we have asked the Nurses to monitor this. Good to hear that he had eaten his lunch though - with a little help from one of the Carers.

Dad woke up slowly while I was there.  He brushed his teeth whilst in bed, and he gave himself a shave - he looked better for it too.  The Doctor came to check Dad's chest after he had been coughing earlier in the week I've come to listen to your chest  the Doctor said Hello I'm Alan's chest  Dad said in a funny voice making himself laugh.  Although Dad has always had a good sense of humour and is quick witted - his humour seems to have become a little more childlike...  Anyway - the Doctor was pleased with Dad and said there were no problems with his chest which is good news.

Mum and Dad's sister arrived at 2 pm to visit Dad and shortly after another of Dad's golfing friends dropped by.  Mum and I met with the lady from DSA and had a good chat with her.  She was more like a counsellor and a support than someone with all the answers.  I think it was good for us to talk to an independent person who has experience of stroke recovery in her own family, she was able to empathise and relate to what we are experiencing.  She reiterated to us that part of the process was to experience the bereavement of the Dad and Husband we have both lost and adapt to the changes that are going on around us and the person Dad has become.  Not an easy journey - there are definitely good days and there are definitely bad days. As I say, she didn't have the answers to what the future holds, nobody has, but she made positive suggestions for us going forward.

Dad was asleep when we got back to the room, but he soon came to when we started talking amongst ourselves.  Dad tries to join in conversations but gets confused trying to describe what he means and struggles to find the right words - we try to encourage him and listen to what he says but it is difficult to understand what he is getting at.  Dad speaks very well - but the words don't always come easily.  

During our visit today, Dad lifted his left leg several times - he has not done this for a couple of days. Considering a few weeks ago he didn't have any feeling at all in his left leg, this is good progress.  We are still waiting for his new 'boot' to arrive that has been ordered - it's to help prevent Dad's foot from turning inwards.  Dad's left arm still didn't have any movement today, but he can feel when it is being touched - when he was in hospital he didn't have any sensation at all.  We try to keep it as straight as possible and ensure his fingers are kept straight too.

Since Dad had his stroke we have found he sings even more than he used to.  He knows all the words to his old favourites and is word perfect.  Since starting the anti depressants, Dad has stopped breaking down in tears when he starts singing and his pitch and tone is definitely improving - he's no Sinatra - but it's an improvement to the monotone voice we were hearing a few weeks ago.  Dad was singing 'Only the Lonely' and with a bit of prompting knew it was by Roy Orbison - although at one point he did suggest it may have been sung by Pauline Amos!  He also sang 'Some day I'm gonna write the story of my life' - when asked who it was by - he said something to do with Holly or Holiday it was by Michael Holliday.

Dad ate all his tea tonight fed by Mum - soup, main and a bit of dessert.  When the Nurse came to give him his insulin (which he has only been having since being admitted to hospital) Dad attempted to bite her saying you hurt me and I'll hurt you.  This is the effect of the stroke - because my lovely, caring, gentle Dad would never have done anything like that before.

Hopefully a few days of resting in bed will do Dad good and he'll be more up for being active tomorrow...we'll see.

Love you Dad x 

Wednesday 11th July

Dad was just being put back in to his bed when Mum arrived to visit him at 2pm today as he was very tired and not up to sitting out in a wheelchair.  Dad had been with the physios before Mum arrived, but she was unable to find out what he had done and how much.  Mum said she's worrying that the physios think he is becoming complacent?

After a sleep, Dad was able to give himself a shave with his electric razor. He needed the bed changing three times during the visit, and also used the bedpan to 'open his bowels'. Aunty Sylv visited this afternoon to support Mum after an emotional day yesterday.  Apparently Dad was being quite crude with his comments and making himself laugh.  He made reference to having a crap and a shit...and after taking a sip from his cup of tea saying it tasted like a woman's tit...not usual comments I'd expect to hear from my Dad - but perhaps this is a side I've never seen before? Dad also asked about his car today - good that he remembers he has one.

Good news that Dad wasn't coughing today, fingers crossed he won't be getting a chest infection.  Dad only complained once about the pain in his left shoulder/armpit today - he was offered paracetamol as pain relief but Dad said it's not that bad.  The medicine for the muscle pain relief that arrived yesterday evening must be taking effect already as he had been complaining about the pain regularly since Friday.

Mum spoke to one of the SALT nurses to day (Speech and Language Therapist) who is involved with Dad's nutrition more so than his speech.  She confirmed Dad had not lost any weight in four weeks, but nor had he put any on.  Dad is not eating sufficient food yet to cut down the nutrients feeding him through the PEG in to his stomach.  The SALT nurse picked up from Dad's food charts that although he does not eat breakfast or lunch, he always eats his meals in an evening - she said this is more than likely because he trusts us, as it is usually either Mum or myself that feeds him.  Tonight Mum fed Dad - he ate most of his soup, all of his main and a few mouthfuls of yoghurt.  The SALT nurse advised Mum that the thrush on Dad's tongue and back of his throat, which he has had since being in hospital, would have an impact on the taste of his food and drink and would probably give everything an awful taste.  The medicine Dad is taking is starting to take effect and clear the thrush.  She suggested that now Dad has started brushing his teeth we should get him an electric toothbrush and this should help in cleaning his tongue as well.

For much of the visit today, Dad's left eye remained closed.  The SALT nurse said that due to the extent of the damage caused to Dad's brain when the stroke took place, he will need lots and lots of sleep and that even the smallest of tasks, like eating, is enough to wear him out.  So considering we saw him take a few shaky steps last week with the aid of the zimmer and physios - he must be exhausted.

Dad's brother, visited tonight - Dad stayed awake until about half past six and then went in to a deep sleep.

I phoned the Dudley Stroke Association today to reach out for a bit of support.  We are meeting with the Family and Carer Support Worker tomorrow afternoon.  Deciding on the next step is a difficult decision to make; we want Dad to have the best care, to be able to continue with his physio and speech therapy, but wherever Dad goes, it also needs to be accessible to Mum.

Love you Dad x 

Tuesday 10th July

Today Mum went to see Dad at 2pm with Sue and Ruby.  Len and I went up to see Dad this evening, Mum stayed there with us too.  We stayed with Dad until gone 7pm.

When Mum arrived at NG today she found Dad just being put back in to bed.  The Nurses had tried to sit Dad out in his wheelchair today, but he could not find the strength or energy to hold himself upright and kept slumping forward on to his pillow.  

A positive from today is that Dad had his first shower since the stroke took effect on 10th May.  The physios took Dad in to the shower sitting on a plastic chair.  Dad was able to wash his own hair with his right hand and wash his body.  His hair definitely looked better for it tonight when I saw him :-)  Both of Dads female physios ended up rolling up their trousers and getting in the shower to help and support Dad - Len joked how lucky he was to have had a shower with two young ladies....Dad nearly choked on his soup laughing.  He said 'we've already sold 200 copies...'!

Tonight Dad didn't have the energy to feed himself so Mum did it for him.  He ate both the soup and main, even though he said he didn't want it - but he said the dessert was too sweet for him. Dad was in his bed for the time I spent with him from 5 pm.  He was choking quite a lot today - which is a concern after he coughed up a fairly large amount of green phlegm at the weekend.  The Nurses said they'd keep an eye on Dad and have booked an appointment for the Doctor to see Dad Thursday morning when he is there.

After a happy evening with his friends and brother yesterday evening - it was a bit disappointing to hear from Dad that he couldn't remember it.  Mum had received calls saying Dad was enjoying laughing and reminiscing about old times...we were hoping it would have been the tonic to lift his spirits after a couple of down days...but it doesn't appear to be the case.

Dad seemed in a negative mood tonight - whether it is because the physios had spoken to Mum today openly in front of Dad about the next steps I don't know?  Mum was upset because she was not advised the conversation would be taking place today - had she known she could have made sure either Dan or I were there to take in the info and ask appropriate questions - questions that go out of your head when put on the spot and under stress.  She was told that if Dad came home he would not be able to be left for a moment and needs 24 hour care.  They have concerns that his left foot is becoming 'clubbed' - will this prevent him ever walking again, what implications does that have?  Guess I'll be googling it later.  Dad was asked what he thought about the situation...he said 'I'm happy here'...it's a nice little set up'.  I think he's starting to feel a burden after hearing that conversation...?

Dad told me tonight he was happy in the home...I gave Dad a talking to and told him he had to work hard to get better and get mobile because we want him back at home where he belongs...'Que sera sera' he said...'I don't want to be rushed', 'I've got time'.

So when we left Dad tonight he was very tired.  But tomorrow's a new day and a good nights sleep may help recharge his energies.

Love you Dad x

Dad's Recovery...an Introduction

Introduction....

So...here we go....Two months ago on Thursday 10th May 2012 my life was turned upside down when my beautiful Dad was admitted to A&E, with the symptoms of a stroke.  Since that day I have kept a diary of my Dads progress - the main reason so I don't lose sight of the progress he is making.

If I'd have known how to write a blog from day one I would have kept my diary on here, but eight weeks in - I've only just learnt how to do it.  It's not a diary where I write my emotions (that's just too personal) but it's a place where I write progress and facts and it's something I refer back to when the going gets tough...to see how far Dad has come in a short space of time.

We - Mum, Dan my brother and I - have had so much support from family and friends...turns out Dads a really popular man and the amount of calls and texts we regularly receive demonstrates how much people care.  By writing a 'blog' on here - it's our way of being able to reach family and friends to update them on how Dad is each day.  Not everyone can get to visit Dad, and not everyone can see Dad on a daily basis, but by reading this you should be able to find out the latest.  It's all new to me - but I've been told readers can leave comments, so please if you are reading this, drop me a comment, ask me a question and let me feel the love!  

Back to Dad - the news back in May wasn't good from the Consultants - we were told Dad had had a 'massive' stroke and that we should be prepared that he will never walk again and he would need help with every aspect of his life.  Devastating considering my Dad is/was such a healthy man - playing golf four times a week (or more), working one day a week, he had a low cholesterol and low blood pressure.  But it turns out that Dad has an irregular heartbeat that may have caused the clot to go to his brain and cause the stroke....thus leaving him with disabilities - potentially for the rest of his life.  Truly life changing for us all x.

After five weeks in Hospital, Dad was transferred to NG on Thursday  14th June - a rehabilitation home where he is now.  We were told he would have six weeks of rehabilitation there - we are now in week four. 

And so this is where the intro ends and I guess the diary takes off....