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

A New Year of Hope.

Happy New Year to all the readers of 'My Dad's Stroke Recovery'. Thank you for coming back in 2013 to join us on our journey to see what the new year will bring for Dad in his recovery from a massive stroke.

We hope you were able to enjoy your Christmas and all have some special memories from the festive period.

Unfortunately Dad got an unwanted early Christmas present...another UTI. Well - we are actually waiting for confirmation of whether it is the original UTI that hasn't cleared.  Dad may be resistant to the antibiotics that have been prescribed, as he is now on his sixth course in three months. To clear the UTI once and for all, Dad may have to go back in to hospital to have an intravenous drip administered, I will keep you updated with any news.

The signs were there again ~ Dad became very mithery and when Mum uses that word to describe Dad I should realise what's coming.  His urine started to smell strongly again, and he became more aggressive and short tempered - shouting at us all.  These symptoms were showing for about a week before the nurses were able to confirm a UTI from testing Dad's urine.  By the time the antibiotics were prescribed the UTI was in full effect. We were a little disappointed as the Doctor had advised us that as Dad was taking one antibiotic a day, it would reduce the risk of further water infections reoccurring.  As with many men of a certain age, Dad was prescribed medication for an enlarged prostate prior to his stroke, we feel he should now be referred back to the Consultant to identify if there is any connection to the UTI. Research shows that many water infections can reoccur if they are deep in the prostate. It may well result in further hospital appointments but something clearly needs to be done to avoid Dad getting them, as they knock his progress back and the antibiotics make Dad so tired and drained. 

Christmas Eve I arrived early at JC and just in time to accompany Dad to the gym for some physio. He really let rip at his physiotherapist 'What am I doing here?' F this, F that, hitting the bed with his right fist and telling her it will be her head next...She is amazing the way she keeps her calm and remains patient.  The next minute the physiotherapist had Dad walking bare foot with the FES equipment attached.  Again seeing Dad walking bare foot highlights that it is impossible for him to control his left foot and toes to straighten them flat to the floor to weight bare. However, seeing the muscles react to the nerve stimulation is incredible - it allows Dad to lift his foot and place it to the floor, enabling a 'more natural' walk.

A new piece of equipment is being trialled in the new year by the physiotherapist ~ wireless FES equipment. Dad should be able to use the product during the trial period and I really hope it suits him as it would be life changing if it enables Dad to walk more independently. At the moment, any walking Dad does, is always with his physiotherapist - she makes it look easy. We have trouble just getting Dad to stand to transfer from wheelchair to chair and it still takes two of us to do it successfully. To finish the Christmas Eve physio session Dad walked across the gym and out to the lift wearing no equipment or aid - just a quad stick (walking stick with four prongs) for stability and his physiotherapist at his left side helping guide his foot to the floor.  Every step was such an effort of strength and determination - he did so well. An appointment has finally been confirmed for the fitting of Dad's new foot brace in January ~ six weeks later than planned...it would appear the order got waylaid.

Dad has experienced a few group sessions in the sensory room where the physiotherapist or occupational therapist carries out stretches on his legs and arms. The difference the stretches make is considerable to the tightness in Dad's joints. We also try and do them with Dad but his attention span doesn't always last that long.

I'm pleased to say Dad made it back to his son's house on Christmas Day where we were able to spend the day as a family. We collected Dad from JC mid morning and took him back at 7.30 on the night, he was very tired. We were successful in transferring Dad in and out of our cars on both journeys and he travelled well. We survived the toilet visits ~ by the fourth visit Mum and I had got a little better in supporting Dad and getting his pad back on. Unfortunately, the mobility shop had sold us the wrong commode as it was one designed for a woman rather than a man, but we coped with the aid of urine bottles. Dad opened his presents one handed with the help of his granddaughter. He ate some of his dinner and when I told him to eat some more, he told me to clear my plate first - that was me told. We kept reiterating it was Christmas Day to keep it in Dads short term memory. He enjoyed singing a few Neil Diamond classics and dozed on and off through the excitement of the day.  Christmas is a time for families and we do feel blessed to have been able to spend the day together in the comfort of our own home. Our thoughts go out to a close and dear friend whose Dad passed away on Christmas Day x.

Following a rather miserable Boxing Day,  maybe as a result of Dad being exhausted from the day before and from being out of his routine, we experienced some 'OK' days with Dad.       

We, Dad, Mum and his sister, watched the Morecambe and Wise Christmas special on my new Christmas present - how Dad laughed! And it was so good to see. Len bought me a 'tablet' to aid interaction with Dad and already it seems to be working. Laughter is an excellent tonic and it really helps in lifting Dad's spirits. We've done a few word searches and played a couple of games of hangman ~ Dad's attention doesn't always last too long but it's good to get the brain working.

One for the golfers - Len, having played the best round of golf he's ever played, was keen to tell Dad how he'd got on - 'Arrr' said Dad smiling 'so you were 14 under par' - he totally got it!

Along with the OK days and the 'good moments', we have the bad days too. They include Dad being verbal, angry and confused. He punched one of the nurses again - she was taking her time with the blood sugar prick and injections and Dad let rip. He has also been verbally abusive to a new nurse who was putting his medication through his PEG at the time.  We truly hope we can get this UTI cleared once and for all, as it will not only benefit Dad and of course relieve the stress we are under as a family, but it will also be of benefit to the carers and nurses who deal with Dad on a daily basis. It is far easier and a much more enjoyable experience to deal with a singing, joking Dad than an aggressive, miserable and angry Dad.

  

Family and friends continue to visit Dad and it is appreciated so much - people are certainly showing their true colours. We know how rewarding it is to spend time with Dad on a good day compared to the upset that can be caused by a distressing visit. But take each day as it comes and don't let a bad day put you off coming back!

How soon Dad makes it back home where he belongs, we don't know...but let's hope it'll be soon ~ and that Mum gets the full support she needs, as it will be Mum who will see the biggest impact on her life as she becomes Dad's full time carer.

Who knows what's around that corner...it's important to keep living and loving each day and to remain positive ~ that's what I'll be aiming for in 2013...along with getting my fitness levels back after neglecting them these last few months! Looking back on the latter half of 2012 it is clear to see how far Dad has progressed and we must not forget the incredible steps he has already achieved in his recovery.  Let us all hope he will make further progress in the year ahead...keep believing.

Thank you for coming back in 2013 and thank you, as always, for the read.

Love You Dad x

Christmas & New Year Wishes from Al.

                             

                             Christmas Day Dinner 2012

Morecambe & Wise making Dad laugh.

                     

Dad has some help opening his presents 

  

Just an ordinary man...

Into the last month of the year and it’s not been a bad one for Dad...a few dramas but good, slow progress continues to be made.

Let’s get the drama out of the way first.  Following on from Mum’s smack to the head by a ‘service user’ (patient to you and me) last month, Dad’s now been attacked by a different service user – twice.  On both occasions Dad was sitting in the dining area.  

In the first attack, the service user had been complaining about his dessert, Dad innocently asked ‘What’s he moaning about now’ and that’s when the service user wheeled himself over to Dad and punched him in the back - a carer tried to intervene.  We were advised that the service user would be eating his meals downstairs in future to prevent any further incident occurring.  So we were shocked to walk in to JC last Sunday to hear that Dad had been attacked again by the same person during his lunch. Dad was upset when Mum and Dan arrived half an hour after the attack happened, so it was still in Dad's short term memory – saying ‘They don’t like me here, they keep pushing me around’ – distressing for us all.  It transpires that Dad had been tapping his spoon on the table – not happy with the noise, the said service user wheeled himself behind Dad again, punched him in the neck twice and picked up a dinner knife to attack Dad with...thankfully a carer managed to prevent him following through with it.

As you can imagine we were absolutely distraught, especially as we had been advised that measures had been put in place after the first attack to prevent it from happening again.  The police were called, but Dan explained that we were not going to press charges – Dad is not in a position to give a statement and go to court.  The next day after speaking to the managers we were advised that the service user had been moved to a suite on the first floor (!) and he would only be able to go on to the ground floor where Dad is based, with supervision.  Another complaint therefore followed later this week when the unsupervised service user freely wheeled himself past Mum and Dad who were sitting alone in the quiet lounge, and proceeded to tell Mum he had been banned from the floor.  Not easy is it...?

On to the important news - Dad’s progress over the last couple of weeks.  We've been able to take Dad out in his wheelchair for a couple of walks around the block; this is the Black Country so there are lots of hills!  It’s hard work pushing Dad up hill, and just as bad trying to prevent the wheelchair from freewheeling going downhill.  It’s about a half hour walk, and Dad’s really enjoyed being out – ‘Feel that bitter chill in the air’ he says, ‘Oh that’s nice the warmth of the sun on my face’.  He always shows concern for who’s pushing – asking if we are OK.  We've sat and watched Football Focus on a Saturday morning together too, Dad telling the Nurse ‘I’m watching Football Focus’ when she asked what he was watching!  He asked about the Joey Barton story that was being covered and laughed when I explained about his French accent.  That was a good day.

We didn't want Dad to miss out on his grandson’s sixth birthday so we all went to see Dad on Oliver’s birthday and enjoyed a McDonald's round the table!  Dad was able to give Oliver his birthday present in person.  It was special to be together as a family and see Dad smiling and laughing.

Dad has now experienced about 35 sessions of physio since he has been at JC.  We told Dad how we look back on his first session and how proud we were that he was able to stand up. Now 14 weeks on, we tell him he is amazing that he is able to walk a good few metres with support and a walking stick.  ‘You’re a legend Dad and we are so proud of you’ I tell him – ‘I’m not a legend’ he responds ‘I’m just an ordinary man’.   It’s been lovely over the last couple of weeks that several of Dad’s family and friends have been able to witness him hard at work in the gym.  It must be so encouraging for them to see Dad progressing physically with their own eyes.  It is heartening and motivating for him to have people supporting him - we can see how hard he works and how much effort he puts in.  

The FES – Functional Electrical Stimulation – device has been helping Dad wonders with both his hand and foot movement. This should help retrain the brain to understand what it should be doing to move Dad’s limbs.  The device is hand held (see picture) and pads with wires attached to the device are stuck to Dad’s leg or arm.  The electrical pulses stimulate the muscles which lift the foot, or open the hand, doing the job of the nerve. All good progress.

Dad had a second home visit arranged for this week – typical it was pouring with rain, just as it was on the first visit, but we coped.  Instead of using the ramp to push him into the house, Dad’s physiotherapist got him to walk up the step and into the house himself.  Once inside, he paused sitting on the wheelchair, before finding the strength to continue walking to his chair – his reward, a comfy sit down on his throne.  I call it his throne – as his chair has been raised on lifters, which makes it rather high. It suited Dad though, and we can always make it lower as Dad improves.

Once again Dad was so relieved to be back.  He asked if the toilet was upstairs – well remembered Dad.  He looked at ease and nodded off straight away.  But not for long – the physiotherapist wanted Dad to practice walking in the house.  She got him to walk to the other end of the room, to his new NHS commode, and back again – with a rest on the commode in between.  I have to say it was the best walking I have seen Dad do since he had his stroke.  His leg without the FES device and new brace (we’re still waiting for it) was still shaking and he needed support from the physiotherapist, but he was able to place it really well – it shows the FES stimulator is working.  Mum had cooked Dad his dinner, and he told her it was good to be eating her food again.  When asked back at JC later that day if he’d enjoyed Wendy’s cooking – he joked ‘Well, I’m still alive’!

Once again we experienced some emotions when it was time for Dad to go back to JC.  He got angry and started swearing – even deliberately clonking me round the head when we were trying to get his coat on.  But he’ll be back soon.  Hopefully we shall have him home for Christmas Day, and soon after for an overnight stay – although we need to get the NHS bed delivered first.

Dad appreciates all that everyone is doing for him and we appreciate all the support too.  Yesterday after a really positive day, Dad broke down at the table and started sobbing out of the blue.  I gave him a big hug and asked why he was crying, he finally said ‘Because some people are on their own and they don’t have families to love and support them like I do’.  That was a moment.

It’s been a tough year for our family – a year where I've finally had to grow up or certainly ‘man up’, but we are aware we are not alone and that there are many families going through difficult periods all the time. We thank each and every one of you for reading this blog, for keeping in touch and showing your support and for all those who were involved with the Charity Day at Halesowen Golf Club in October.

We  wish you and your families a very special and enjoyable time this Christmas.  I will be counting my blessings and thinking how lucky I am to have both my Mum and Dad with me again for Christmas...if all goes to plan...!  Wishing you all love, laughter and good health for the New Year.  As always – thank you for reading, for hoping and believing...

Love you Dad x

Dad with his grandchildren 1-12-12

Oliver's 6th Birthday 7-12-12

Walking at home 14-12-12

Dad on his 'throne' 14-12-12