Positives & Setbacks

So here we are again...another month has gone by. If you've logged on or clicked the link to read this update - thank you. It's reassuring to see how many views the blog has each month, people are obviously interested to read about the progress Dad is making. 

Well, I said last month I'd probably regret being so positive as I know it can all change so quickly...and at the start of June it did when Mum and Dad fell together whilst Mum was transferring Dad from wheelchair to chair. She had to shout for help as they fell in what she describes as 'slow motion' to the floor. Help came and Dad had to be hoisted off the floor. No damage was done to either, although Mum was upset by the episode and her confidence in transferring Dad was knocked. 

We have raised concerns that Dad is transferred in different ways by various care staff, either pulling his right arm to get him up or pulling him up by his pants. When there isn't consistency - how is Dad meant to improve and gain confidence at transferring? We will continue to do it the way we have been taught by the physiotherapist getting Dad to push up with his right arm, stand tall and step across whilst supporting his left side. We do it repetitively, what more can we do? 

A disappointment this month came when Mum found an open sore on Dad's left big toe. He was complaining his foot was hurting and when Mum looked she found it was raw and weeping. This then stopped Dad from walking for three quarters of the month. It's been very frustrating after we felt Dad had progressed so well last month. He has had days where he has not worn any footwear or socks on his left foot to let the air get to the sore to enable it to dry out. We have all had to be extra careful not to knock Dad's left foot whilst it's been so exposed. As a result of this, it has prompted us to get Dad some special wide fitting shoes without seams to allow his orthotic brace to fit in the shoe more comfortably. We have also bought diabetic seamless socks which also do not rub on his toes. Let's see if these help Dad. 

Only in the last week has Dad been able to do any walking again since his toe has now started to heal. The physiotherapist has instructed staff at the home to do short daily walks with Dad from his chair to the dining table, but to date we haven't received any feed back that this is happening, and Dad has no memory to tell us anything that happens (or doesn't) when we are not there, so it is left to us as a family to make sure Dad's legs are stretched and he gets to practice walking. It is not easy. Some days Dad is positive and cooperative, other days he will take two steps and shout he can't do anymore. It is frustrating, heartbreaking - a rollercoaster of emotions...but we will not give up. If we had and we hadn't challenged the incorrect information the social worker gave us last year, just think where Dad would be now... 

Ok, so how about some positives to lift the mood. Well...following the reduction of the nutrients last month that Dad has fed through his PEG tube at night, the decision has been made to stop the feed completely as he is now said to be taking enough food orally to sustain a normal diet. It has only been a week but it is excellent news, I'm sure you'd agree? Dad now has water through the PEG tube during the night and morning, as there is still a risk he could dehydrate and further water infections could reoccur. The aim is to reduce the amount of water over time until Dad is no longer dependent on it. We are encouraging him to drink more when we are with him, he does drink full cups of tea now - although they have usually gone cold by the time he finishes them. We only hope that when we are not there, Dad has the same encouragement from the care home staff. Not having the water bottle and tube connected to Dad during the afternoon has certainly given us one less thing to think about when transferring him which is a positive. 

The diabetic nurse has also been monitoring Dad this month. Another piece of good news is that he has been taken off the insulin injection. As regular readers will know - Dad and injections do not see eye to eye, so it is excellent that he no longer has to go through the daily trauma. His blood sugars will continue to be monitored daily at alternative times...so unfortunately for now, he will still have to endure 'the finger prick', but his blood sugar readings are good and that is positive. 

Dad has been experiencing a lot of itching on his back and at the top of his bottom over the last few weeks and he seems to be continually scratching. Whether this is as a result of his medications I do not know, but we have raised it as a concern. Better to have Dad scratching than not eating, but we'd rather it wasn't happening at all. 

As mentioned in last months blog, an appointment was made for the dentist to come and see Dad. Dad cooperated quite well and the dentist was able to check his mouth. He commented that he had treated patients with vascular dementia previously and he thought Dad was doing very well considering. Dad did come across as coherent and 'normal' - until he started threatening to punch the dentist if he hurt him...the dental nurse looked on with her mouth wide open! 

The outcome was bad news - Dad has an acute infection in his gums. The dentist advised that Dad would need some teeth removing due to decay and a new denture made. Disappointing as Dad regularly visited the dentist prior to his stroke and his teeth were 'ok'. Since Dad left hospital last June, we have always made sure Dad brushed his teeth with us so we knew he was cleaning them at least once a day. A new regime has been set up and an appointment has been made at the dental clinic in July for the work to be carried out under sedation over several visits. As a result of the dentist's visit, Dad had to refrain from wearing his denture for a week - it's only for his front tooth, but for a week Dad looked like a pirate and did a pretty good impression of one too...'ooo arrr'! 

We were fortunate to spend Fathers Day together as a family at Dan and Sue's house. Dad had a good day with his family and the grandchildren helped him open his cards and presents. The bouquet of fruit we brought him went down well and he enjoyed eating it, as did we all! 

Mum and Dad also celebrated 43 years of marriage on the 13th of the month. Dad was surprised to learn they had been married for so long, thinking he was celebrating their 5th wedding anniversary. We had arranged for flowers to be delivered to Dad at the care home so he could be prompted to give them to Mum when she arrived along with a card he had written. 'Still looking well' was the message he wrote to Mum in her card. The care home made them a cake too which was a lovely gesture and they shared it with other residents. 

There are good and bad days throughout each month and we cling to the hope a good day gives us when Dad has engaged, laughed with us and remained calm. We have to pick ourselves up and deal with the emotional scars after a bad day when Dad has been tired, argumentative and vocal. There are some days when you just can not reason with Dad - when we are 'useless' 'don't know what we're doing' or 'a stupid cow', all things hard to hear from a loving dad and husband.  

We experienced one of these difficult days when we took Dad to a recent appointment. He did not want to leave the care home and venture out in the cold and wet and he told me so as he shouted at me on the car park 'Take me back inside, get me back in there, I'm not going anywhere'. He was so angry. I managed to get him in to the car, but he was clearly not happy shouting at me that he was 'going to be sick' and demanding me to get him something to be sick in 'NOW'.

When we got there, Mum went to check us in as we were running late, whilst I spent nearly twenty minutes trying to coax Dad to transfer in to his wheelchair. On the third attempt of swinging his legs round, we were successful - but only after I'd endured Dad shouting at me full blast to 'Stop it. Stop it - you're hurting me'. Passers by stopped and stared but they did not approach me. Whether they really thought I was hurting this man who was shouting as he was getting out of the car, or whether they thought I might need some help I don't know - but they just stood and stared and only moved on when Dad was sitting in his wheelchair shouting at me to 'come on' and 'hurry up I'm getting wet'.  

We all have our own coping mechanisms to deal with this endless draining experience and it really is not easy. For me thank goodness for my husband who gives me the strength and comfort to be there standing strong for my family, my work colleagues for allowing me to regularly off load and for netball to enable me to get rid of my frustrations constructively! 

It's been another month of highs and lows as you've read and we will be clinging to the positives going forward. Again we have not received any information from the PCT following their meeting with us in April, so as a family we will remain committed to working with Dad to rehabilitate him as best we can in JC. 

To you reading this now, those who visit Dad at JC and those who keep in touch with us...thank you so much for taking the time out of your busy lives to catch up. 

 Love you Dad x

Oli with his Pop Pops 16/6/13

Dad with the grandchildren 
(note the missing tooth..."Ooo-arrrr''!)

Fathers Day 2013 - Dad did enjoy the fruit
even though he doesn't look too impressed!

Enjoying a bit of sunshine and wearing
 his new shoes - Mum and Dad 26/6/13

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

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!!

A Highly Complex Case

And on to March we go...a month when we start asking the question  'Is the NHS letting us down?' Appointments cancelled left, right and centre, delays for all the 'urgent' care requirements that Dad needs...anybody that deals with the NHS regularly will know the frustration we are feeling.

The pain that Dad is experiencing again in both his left arm and leg seems unbearable.  Even when nobody is touching him he will shout out in pain - and ask for the pain to be taken away.  This takes us back to several months ago, before Dad had the botox injections in his arm.  Clearly he needs the injections more regularly than six months - but when appointments get cancelled and then delayed, six months becomes seven and so on...why should Dad have to be in this unnecessary pain?

With regards to Dad's physical improvements there is not much to report on this month as we are waiting for appointments.  Having waited an excessive amount of time for a bespoke orthotic brace to be approved and finally made for Dad and then waited weeks for it to arrive, we are now waiting for an appointment to remould it to fit him correctly, but first we have to wait  for Dad to be seen by a Vascular Consultant.  Waiting waiting waiting....with no urgency and so time drags on and Dad is unable to practice the physical activities he should be doing like walking.  We have noticed that his transfers are not as good as they were a couple of months ago - his arm and leg are so tight. 

A reality was brought to our attention half way through the month during an unplanned conversation with the Doctor who sees Dad at the care home.  We were advising her that 'Our building works start Monday for the downstairs wet room at Mum and Dads'...'Who told you Alan was coming home?' was her response....'Errr, that's always been the goal we were working towards?'

It appears Dad is thought of as a 'highly complex case' as there's always something different  to deal with each week and his mental capacity is not good.  'There's lots going on behind the scenes' we were told....Really....because I feel like I've got front row tickets and I certainly haven't got a clue what's going on behind the scenes?  And so our hopes of having Dad return home were dashed.  Tears sprang to our faces, as Dad asked what was going on and why were we upset?

Dementia after a stroke is not something I feel is written about enough. I have read many stories about successful recoveries after a stroke which gives hope to so many people, but there are not many case stories that tell you the harsh reality of dementia brought on by stroke.  The most searched words on the internet that links to this blog is 'Miracle recovery after a stroke' - and that is what we have all been hoping for.

A positive this month - yes I'm sure there's some somewhere!  Well it was Dad's 69th birthday at the start of the month.  We were able to bring him back to Dan and Sue's house where he opened his presents with the help of his grandchildren and he blew his candles out as we sang 'happy birthday' to him.  A really nice gesture was when two of the more independent service users at the care home, made a birthday cake and card for Dad and sang 'happy birthday' to him - again he got to blow more candles out.

On Good Friday, the care home arranged for singers to go in to the care home and sing songs from musicals along with many others.  Dad thoroughly enjoyed it, joining in knowing all the words. It made for an emotional afternoon for Mum and a family friend who was there offering much needed support, as Dad became overwhelmed with emotion listening to the words and sobbed.  At the end he wanted to applaud them, but this was difficult having only the use of one hand, 'Come on' he said 'Let's applaud them they were fantastic'....and a couple of minutes later he wanted to applaud them again as he could not remember having done it the first time.

Easter Sunday we took Dad back to his own house for the day.  It felt like 'old times' a typical Sunday with the football and golf on TV, Dad asleep on the settee and Mum in the kitchen!  Though it was far from normal when we had to change Dad three times during the day.  

Dad is still not eating and says he is full up. He takes few sips of a cup of tea and otherwise does not drink, relying on the PEG tube to feed him water and nutrients.  He has encountered yet another UTI this month as well as a chest infection and has received yet more antibiotics.  His aggression was not as bad as that experienced during previous UTI's and we put this down to the anti depressants suppressing his emotions. He has had days where his blood pressure has varied from very high to extremely low within the space of a few hours and he has therefore been monitored closely during these days.

It's still so hard to think it's nearly a year since we lost the Alan we all knew and loved.  My beautiful, intelligent, loving and quick witted Dad.  He is a shell of the man he used to be, such is the harsh reality of the disabilities that stroke causes and dementia.  It's hard to rely on others to provide the care that Dad needs. Of course there are always going to be issues with levels of care, but most of the staff are good to Dad...and pleasant to his visitors.  The PCT have been in touch again - they will be meeting with us in April to review Dad's health and funding.

As the phone calls stop and the texts and messages of support filter off, it does sometimes get lonely.  Thank goodness for our loyal family and friends who have been by our side every step of the way offering the support that they do.  Don't get me wrong - I count my blessings and know I could be in a situation a lot worse - but we're dealing with this the best we can, and I assure you, there are enough trials and tribulations through the month to make it more difficult than it needs to be.

Thanks for the read and thanks for caring.

Love you Dad x

An early March walk before the snow
came and settled.

8/3/13: A physio 'putting' session to get
Dad to practice standing. He's still got it!

Happy 69th Birthday Pop-Pops!

Mum and Dad - Good Friday 2013.

   

A month of two halves

February was a month of two halves. It started well and we felt Dad was on the up...only for things to deteriorate towards the latter half of the month. At the start of February Dad was taking steps wearing his leg brace during his physio sessions and he was eating and sleeping fairly well...but not anymore. So what's happened to change things...? Well these are the events of Dad's stroke recovery during the last month:

On the first day of February Dad went for an eye appointment with the Diabetic Optician. It wasn't a great visit due to the lack of compassion and understanding about Dad's condition from the optician himself. This is obviously what we will be up against when we take Dad out in to the community.  The good news is Dad's eyes are free from any diabetes.

The next appointment in February was to see the Prostate Consultant. Dad certainly made an entrance when we arrived in the quiet, small, crammed waiting area. We pushed his wheelchair in to the room only for Dad to let out a humongous sneeze that resulted in snot shooting three feet through the air, across the room and landing on the carpet in front of everyone! Dad, oblivious to what or where he was, let out another three loud sneezes whilst I moved with lightening speed to wipe the snot off the floor with a tissue...all eyes bearing down on me. The outcome from the appointment was for Dad to attend an ultrasound scan of his prostate in March and to go on yet another course of antibiotics, this time four times a day for two weeks, to try and clear up any infection lying deep in Dads prostate.  

Dad's third appointment in February was to have his internal medicines reviewed by the Stroke Consultant and to have further botox injections administered - his arm is currently very tight due to the high level of muscle tone. We were extremely disappointed to receive a call on the morning from the hospital stating the Consultant was trying to get a flight back from Dubai and we would therefore have to rearrange. That was a week ago and we are still waiting for a new date.

I received a call back from the Mental Health Consultant following a letter I wrote to him asking him to review Dad's medical history. I explained that Dad had taken anti depressants back at NG and that we felt they had had a positive effect on his emotions. Following his review, the Consultant agreed to prescribe Dad anti depressants again and will review Dad in two to three months time. Three weeks on, we have already noticed a positive improvement in Dad's emotions. He laughs more, isn't as tearful and sings once again without becoming upset straight away. Unfortunately they do not stop Dad from shouting, swearing and spitting at staff when they are dealing with him.

The Mental Health Consultant also advised me that with vascular dementia there will be periods of improvement before a sudden dip is taken.  I located a useful fact sheet about vascular dementia on the Stroke Association's website (click on the word vascular dementia and you can download it for further information).

The loss of Dad's eating habits seem to have coincided with him taking the four times a day course of antibiotics and starting the anti depressant medication. At the start of the month Dad weighed 76.9 kgs, he even ate a McDonalds for lunch with Mum and myself whilst we spent a full day at the home with him, following the prostate appointment. He's certainly lost his appetite since, having gone days without eating a thing. The Nutritional Nurse visited with the intention to reduce Dad's nutritional PEG intake during the night - but when she understood Dad wasn't eating and reviewed his weight loss she advised against it.

Dad's physio sessions have not been as successful this month. At the start of February Dad was standing tall when he took steps with the physiotherapist and our hopes were raised for his physical progress. Although he still shouted whilst walking, when asked 'why?' he shouted, Dad said it was because he felt 'vulnerable'. As the month went by, Dad started shouting in pain and wouldn't let anyone touch his foot to put his leg brace on. When the physiotherapist managed to look at Dad's bare foot, she found his big toe to be red and swollen with pressure sores on either side of his foot. The Doctor was asked to review the condition but advised there was nothing fundamentally wrong. We, Dad's family, asked for a second opinion as his foot is almost purple and looks infected. Last week his foot was reviewed again by an alternative Doctor who stated that although there was no ulcer or infection, which was good news, Dad has bad circulation. He has requested a Doppler Test to check the circulation in Dad's leg. 

As Dad has not been able to wear his brace, an appointment has been made with the Orthotist to have his brace amended so it is not so tight and to ease the pain.

A new exercise machine has arrived in the gym - a  MOTOmed. It is a machine used for cycling whilst sitting in a normal chair or wheelchair. The machine is powered electrically but allows the person who is cycling to take over momentum. Dad has been able to use it for seven minutes at a time. This should help Dad's circulation in his left foot.

During the month, a lady from Dudley Stroke Association came to visit Dad for his six month review since leaving hospital. She last saw Dad at NG and was surprised to see him sitting in a comfy chair and answering her questions with a logical response. She advised Mum that it was only down to the love and support from Dad's family as to why he has got to where he is now and that although dementia will be a struggle to cope with, we should never give up.  She took on Mum's feed back about the lack of understanding from the optician and she advised she will write to him offering him training on dealing with stroke survivors suffering from dementia. She laughed with Dad as he told her that her shoes were old fashioned! Dad also sang Sweet Caroline to her assistant named Caroline as she said goodbye.

During February we brought Dad back to Dan and Sue's each Sunday. Before Dad started going downhill, the visits were fairly successful - less so the latter two Sundays. Dad was eating and enjoying watching the football and commented 'This is a nice warm house' when he arrived. We moved on after the first couple of weeks from using the downstairs toilet to using the commode in the front room.  We realised that three adults, a wheelchair and a toilet and basin in a small bathroom was proving too difficult to maneuver in. Having more space definitely helps - although Dad still gets confused and hits out in moments of frustration. During one change with Mum and myself, Dad hit out at Mum almost pushing her over. As you may be able to appreciate, it upset Mum. As soon as Dad saw her upset he apologised saying 'Sorry Wendy, please don't cry. It upsets me to see you cry Wendy'...an emotional experience to say the least...but we got through it.

I was extremely happy to be able to see Dad on my birthday and for him to wish me a 'Happy Birthday' and give me a birthday kiss.  One to treasure - as is the note he wrote to me in my card. The severity of Dad's short term memory was demonstrated when I told him five times within a short space of time that it was both Len's and my birthday...each time he greeted the news as though it was the first time he'd been made aware of it.

Twenty six weeks Dad has been at JC and it is certainly a lot busier than when Dad first arrived there. I won't go in to the detail of the goings on...I'll keep that record of accounts to my private diary of Dads recovery - perhaps to be revealed another day! Needless to say 50 minutes is by far too long a time to wait for Dad to be taken to the toilet, soiled pads should not be left in the middle of Dad's bathroom floor...and if Dad is given one more meal consisting of watery cauliflower cheese or cheese and dry potato mash I think I will scream...

So - February as a whole wasn't  a great month for Dad or Mum for that matter who visits every day. Perhaps now Dad has finished the course of antibiotics he will start to feel less nauseous and rebuild his appetite - we certainly hope so.

I am keeping my hopes on the Orthotist being able to amend Dads brace so it is more comfortable for him to wear so that he will improve again with his walking.

As always...thanks for reading and believing and for never allowing the hope to be taken away from our thoughts.

Stay Strong. Love you Dad x

Dad walking tall at the start of the month

Another physio session in the gym

A birthday kiss from My Dad x

Tomorrow's a new day

So in a blink of an eye that was January.

Dad has had good times and bad times...and as always we have had to take each day as it comes.

Such was the case when we were informed that Dad has post stroke Vascular Dementia.  I had asked the Doctor to reconsider putting Dad back on anti depressants. From my research, it is not uncommon for stroke survivors to take anti depressants as they come to terms with their new life, and we felt this may help lift Dad mentally. We were advised to wait for a mental health assessment to be carried out first.  

The assessment was carried out this week. The Doctor advised us that Dad was aggressive to both him and the carers when he arrived, but once he'd explained to Dad that he was a professional and took him to the quiet lounge to speak to him, he said Dad changed and became much calmer. When the Doctor asked Dad how he felt, he replied 'OK' and told him he was happy. The Doctor concluded from the hour he spent with Dad, that he is not depressed and therefore does not require anti depressants.  

The Doctor went on to confirm to me in a telephone conversation that Dad has Vascular Dementia (VaD) as a result of the stroke - this is the first time anyone has stated this to us and it felt like yet another knock back. Research of what VaD is describes Dad's symptoms:

• Memory loss
• Confusion
• Mood swings and personality changes
• Language problems
• Difficulty paying attention or following a conversation
• Impaired motor skills
• Difficulty planning and organizing tasks
• Visual orientation problems
• Difficulty with calculations, making decisions, solving problems
• Depression-like behavior
• Patients with VaD often deteriorate in a step-wise manner, with symptoms becoming greater with each new stroke. Sometimes, however, dementia can come on abruptly as the result of a single stroke, depending on the location and size of damaged brain area.
• Patients with VaD may become more dependent upon family members or caregivers for assistance with activities of daily living due to physical and behavioral changes.

So it's a bit of a reality check for us all to understand exactly we are dealing with going forward and we now have a 'term' to use rather than describe all of the changes in Dad.  Unfortunately, as many of you will know, there is no current cure for dementia and no way up.

Regards Dad's frustration and behaviour changes that have continued more than ever through out the month of January, the Doctor suggested that the care home monitor Dad to try to understand what the triggers are in making him angry. As a family, we spend a lot of time with Dad so we have been able to identify some trigger points ourselves. We know too many voices at once and too much noise can effect Dad and when too many people are standing over him - that's why we try and crouch down when we speak to Dad to explain things. Dad's anger can come on in an instant - as though a switch has been flicked. We were advised that frustration will be the cause of much of the anger.

It's not a nice experience to be on the receiving end of it either. But I try to tell myself, its just in the moment, as a few minutes later, when Dad is calmer, he doesn't recall shouting and swearing - and certainly wouldn't believe he'd directed it at any of us. Some days Dad will have his injections without so much as a murmur ...other days he squeezes our hands so tightly, curling his tongue with anger, or kicks at the nurses whilst swearing. There doesn't seem to be any consistency to his behaviour.

We are informed from Dad's written 'behaviour records' that some mornings he gets up happy and even sings, but these days becoming rare as he lashes out swearing aggressively at the care staff.  Some of the reports make very difficult reading for us, spitting food, punching staff and the quotes of the language he uses are extreme.

This new information makes us question whether Dad has needed to be be on all of the antibiotics if his behaviour stems from VaD and not a UTI? Dad's urine remains infected.  A sample of urine sent to the hospital again this month to check for growths confirmed there was 'something' still there. Another course of antibiotics and and a higher dosage to Dad's daily antibiotic was therefore prescribed. Following our request for an appointment, Dad is seeing the Prostate Consultant this month, so we hope that some new information might come to light as to why Dad has this reoccurring UTI - if at all it is one??

We have been working hard with Dad to encourage his eating and to help him put on weight. He was 76.9 kg when he was weighed last weekend which is positive, as he was 77 kg back in August at NG before his two set backs to hospital.  

Dad's eating habits vary - although he consistently doesn't ever eat any breakfast. This is likely to be as a result of being full up from the nutritional feed that is being fed in to Dad though his PEG tube during the night. In September, the nutritional nurse had decreased the volume as she felt his oral intake of food could warrant it, but after coming out of hospital it was increased again. Unfortunately, following a visit this month and reviewing Dad's records, her decision was to keep Dad at the higher rate.

A friend has been bringing some soups in for Dad to eat. Dad has been enjoying them saying 'it's delicious'. I took him a broccoli and stilton soup but it didn't have the same effect....'Urgh' he said 'this tastes metallic'! Pea and ham it is then!

Following on from the jaffa cakes that Dad has been enjoying, we found he is quite partial to a cream cake. He enjoys a cup of tea and a cake in the afternoon with Mum and his visitors - although we must monitor how many he has as he is a diabetic. It is lovely to see Dad sipping a cup of tea - something we all take for granted, but it has taken Dad eight months to get back to doing and enjoying it. Dad takes the smallest of sips, so it is an achievement  when he drinks even half a cup. We have also been taking Dad soft fruit - he enjoys eating bananas and mango.  We still have days where Dad refuses to eat anything at all, no matter how much we try and encourage Dad to eat - those are worrying days, but as we say; one day at a time. 

We took Dad out for a couple of walks in his wheelchair this month - before the snow came. His Christmas mittens and blanket were put to good use as we wrapped him up warm to get some fresh air. It seemed to lift his mood, and again he showed concern for whoever was pushing him and smiled as he saw Oliver's excitement at seeing a train speeding under the bridge we were on.  It is always a pleasure for Dad to see his grandchildren, although he does become emotional when he first sees them. Dad enjoys playing ball (using a soft ball!) and drawing and colouring with them too.

We had been informed by the activity coordinator earlier in the month that Dad would be having a game of golf on the Wii, but to date we have heard nothing more. To keep Dad stimulated and engaged,  Mum set up his golf game that returns the golf ball back after putting it. She has done this a couple of times for Dad and he has enjoyed it....until his attention span runs out and he picks up the golf ball and throws it at the wall. Dad, has a habit of throwing things, which can obviously be dangerous, including cutlery, his alarm clock and paper towels.

So how is Dad progressing physically? Well, he continues to work with his physiotherapist. She has been able to get Dad to walk short distances in the main corridors of the care home to get him used to a more realistic environment. Other visitors and staff have applauded Dad at seeing him walk, aided with her support. They are used to seeing Dad in his wheelchair, so it is a massive achievement to see him taking some steps.  Dad, frustrated and proud, doesn't always appreciate the praise and shouts at them to 'F-Off'.

Dad's new AFO brace finally arrived six weeks late.  He has been wearing it for short periods of time to get used to it. It is amazing to see Dad take steps without the physiotherapist having to guide and place his left foot!  Dad can take about ten steps very slowly and 'doddery' and still needs his physiotherapist to stand beside him and support his left arm as there is a high risk he could fall backwards as his balance isn't good. As you have read, Dad is unable to form a short term memory - if he could I know there would be nothing stopping him from walking again - he would be determined and he would remember what he had done from one day to the next. As it is, each time Dad walks it is like relearning from scratch. Although he calls himself a 'cripple' and is very down on himself, we are so proud of him. Based on the physical progress he has made to date, I am sure he will continue to improve, all be it slowly.

We brought Dad out of the care home for another home visit last weekend and brought him back to Dan's. Again he travelled well with us sitting in the front of the car - unlike when he is transported to appointments in his wheelchair by the care home's vehicle when he ends up being sick. Dad seemed relaxed and comfortable in home surroundings. He enjoyed watching the football on TV and having a cup of tea. It was obviously a much more comfortable environment to be together - not just for Dad, but for his grandchildren too. The only downside was the visit to the toilet that Mum and I helped with. Dad let rip at us shouting loudly. It wasn't a great experience, but we got through it, Mum was left emotionally upset but we did it.

From my research, there is nothing that explains to you what an emotionally draining experience it is dealing with a family member who has suffered a massive stroke and who has 'vascular dementia'.  Nowhere does it tell you how you will feel - that sometimes there will be tears and sometimes there will be anger.  That there will be feelings of guilt, helplessness, anxiousness and fear - and more often than not all at the same time! This experience could so easily tear families apart, but I am so proud of how we have all pulled together to bring us even closer and make us stronger. I am so proud of my Mum, the way she finds the courage to fight when Dad's having a bad day, how she holds his hand and encourages him, I know it makes Dad feel better just having Mum by his side. 

There is so much more that I could tell you about this last month, but I won't go on.  You have an understanding of what we are dealing with as a Family.  If you want to come and visit Dad - you know where he is and you know what to expect, of course we understand for many people it is a difficult experience to see how much Dad has changed.  But we still share loving moments with Dad - and those are the moments we cling on too. Everyday is different and that is what we tell ourselves after a bad day - 'tomorrow's a new day'. 

Thank you for all the support we have received from friends and family this month - especially when travelling has been made so much more difficult by the snow, it has been a difficult month in more ways than one! 

Love you Dad x

Dad and Oli before a walk 12-1-13

Dad concentrating whilst wearing his
new AFO brace 26-1-13

                                                                                               

Who would know Dad wasn't his old self??
31-1-13

Dad, Mum & Ruby at home 27-1-13