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

                                 

200 days and a visit home

 I am pleased to say we have experienced some positive days since I last wrote.  Dad is continuing to make good progress in his recovery, although I reiterate it is slow, it is in the right direction.

The Physiotherapist has worked Dad hard during his last few sessions off physio which has resulted in him being able to walk with the support of her and a walking stick…with the wheelchair close behind.  It’s not a pretty walk, but it is a great achievement considering Dad has only been at JC twelve weeks, including his time in hospital after the fall and the confusion of the UTI.  Prior to JC, NG had left him in either his bed or wheelchair and basically given up on him.

At the moment, Dad requires the assistance from the Physiotherapist to place his left foot firmly on the floor – the Ankle, Foot, Orthotic (AFO) brace should help do this when it arrives, hopefully this side of Christmas.

Christmas already, where has the year gone!?  The best present this year would be to spend the day together as a family.  With this in mind, we have been preparing for Dad to be with us at home on Christmas Day.  Dad’s 200^th day of recovery was marked last Monday with a two hour visit back home with the Physiotherapist and Occupational Therapist (OT).  It felt so good to see Dad back in his home environment.  Once in the house, we asked Dad if he recognised it as he looked around – ‘Of course I recognise it’ he said ‘it’s home’.  A few emotional tears were shared between Mum and Dad whilst I, along with the Physio and OT tried to keep it together. 

Dad was able to walk with a walking stick and the support of his Physio, from one end of the living room to ‘his chair’.  This was the first time Dad had walked on carpet and he did very well, although he did air his frustrations.  Once sitting in his chair it was as though the last six months had been a terrible nightmare, it looked so right and so normal.  ‘Put the news on’ he suggested.  Both the Physio and OT commented that it was the first time they had seen Dad completely at ease – he did look relaxed and comfortable and it wasn't long before he was asleep.  Unfortunately, reality set in for us when Dad stated he needed the toilet. 

There were no tears shed when Dad came to leave after his short return home, but there was anger and a few choice words.  It was sad to see him leaving, but it was amazing to have had him back with us even for such a short time – it gave us the determination to get Dad back permanently where he belongs.  Adaptations are already being made to the house for Dad’s return.

In the last couple of weeks Dad has also visited the Guest Hospital and Corbett Hospital, both times for x-rays of his right shoulder following his fall.  Unfortunately, on both occasions they took x-rays of his left shoulder…yes, I know.  So we are still waiting for the correct x-ray to be taken.

We also accompanied Dad to Russells Hall Hospital for his six monthly check up this week.  Unfortunately, the night before, Dad had been given his first sleeping tablet to assist in getting him a good night’s sleep. The effects had not worked during the night, but took great effect during the morning!  Dad was in a deep sleep as we spent nearly 25 minutes with the Doctor. He advised us that Dad’s cognition and physical disabilities will improve as time goes on.  It is unlikely that Dad’s short term memory will improve which is common following a vascular stroke.  A routine for Dad should certainly help along with time and rehabilitation.

It’s hard when so many things have to be repeated to Dad as often as they do – but we will continue to do so until he is able to remember.  We tell him everyday that he had a stroke in May and that his brain was damaged which controls the left side of his body.  ‘Why can’t I walk?’ he shouts out in frustration, ‘I’m in a state’.  The down days Dad experiences are difficult to deal with, especially when he won’t smile, he shouts and swears – even at Mum, he shouts that ‘he’s had enough’.  We wait on tenterhooks as Dad is taken to use the toilet, the feeling of relief when it is a ‘quiet’ visit.  It is not pleasant to hear Dad demanding and shouting orders at the carers, in all honesty it turns our stomachs to hear him so angry…but this is the effects of the stroke.

Dad’s cognition seems to be improving, He has not lost his intelligence and his sense of humour still shines through on the good days.  He is using the correct name more often with family, although when he is tired they are not so accurate.  Dad’s emotions are still at the forefront, as well as the anger and frustration he becomes tearful quite easily.

Dad continues to have a blood sugar test each evening which consists of a small prick to the finger to draw blood, followed by the insulin injection to his stomach.  Some days he doesn't react and other days he lashes out at the nurse and is verbally abusive.  Again, this is down to the effects of the stroke.  These are all daily tasks that we will have to deal with when Dad comes home as we endeavour to carry out the nurse’s role as well as the carers – the majority of the responsibility falling to Mum.

Talking of Mum – an upsetting incident occurred this week.  A confused patient, new to JC, walked in to Dad’s room as Mum and some family members were sitting with Dad whilst he slept.  Mum explained to her that it wasn't her room and followed her out.  Mum being the helpful and kind person that she is, told the patient which direction her room was.  Mum was rewarded for her act of kindness with a full on smack around the head from said patient.  Mum was left extremely distraught and upset.  The care home was advised of the incident and thankfully the patient has now been moved to another area of the home.  Sometimes it’s a blessing that Dad doesn't have a short term memory. For information – Mum is OK now just a little shaken.

To end on a positive note; for those who keep up to date with this blog, you will know that we have been appealing against the PCT’s decision not to fund Dad for his ongoing health needs. 

The appeal meeting went ahead but was terminated when information not seen before came to light.  The Consultant’s report from August, clearly stating that Dad should be entitled to rehabilitation, had not been provided as evidence to the PCT Nurse when she carried out her assessment at NG back in August.  It transpires that the physiotherapist and OT at NG, as well as the social worker, had basically given up on Dad and this was reflected in their reports stating that there was little potential of any progress being made – this is the information the Nurse based her assessment on and put to the PCT Panel. The Chair of the meeting read the Consultant’s report and said ‘This changes everything’.  As she informed us that she was ‘sorry’ and that we had been ‘failed as a family’, I broke down. 

It has been confirmed this week that Dad will receive backdated continuing health care funding from the date he went in to private care and going forward, with another assessment in a couple of weeks.

As a result, we do feel let down by those that should have been supporting Dad and providing us with up to date information.  The last few months have been extremely difficult for us all with the added pressure of the appeal on us.  Thank goodness Dad now has a team around him that encourages, motivates and supports him - we can not thank the Physiotherapist and OT enough for believing in Dad.  Along with the love that surrounds him from his family and friends, Dad continues to make progress that amazes even the professionals.  I have shown the Doctor and the PCT Nurses the most recent footage of Dad walking, and they have watched in astonishment as they see a man that was written off without any potential take steps with a walking stick.

The bad days are hard for us all, but the good days help keep our spirits lifted – we know...one day at a time.

As always – thanks for believing and thanks for the read. 

Love you Dad x

Dad back in 'his chair' - 26-11-2012

At home together for the
first time in 200 days - 26-11-2012.

           

Working hard - 28-11-2012

My Dad - The Legend xxx

               

A step in the right direction

It has been over a couple of weeks since I last wrote an update – apologies if you have been waiting for some more news on Dad’s recovery, it’s been a busy couple of weeks.

Many of the issues at the home seem to have been resolved, although there are some ongoing.  Unfortunately the Director didn't turn up to our meeting that we had arranged with him at the end of October – we were so annoyed as both Len and I had taken time off work to attend.  We finally caught up with him later in the day and let him know how we felt.

He has recently confirmed that he will be refunding the money for the two weeks that Dad was in hospital – which we are very pleased about - although he wants us to sign a new contract before we get the money back...!

So anyway, more importantly – how’s Dad doing?  Well I am pleased to report that Dad has had a couple of positive weeks and some improvements have been made.  The UTI seems to have finally cleared from Dad’s system.  He is much calmer, is smiling and joking once again and the swearing and aggression is far less frequent than before.  Although there’s the occasional ‘f’ or ‘b’, overall Dad seems so much more like his old self - at last.

To keep us going, we popped out to the local McDonald's the other night to get some food and took it back to the home to eat whilst Dad was eating his tea.  Dad helped himself to Mum’s fries – he really seemed to enjoy them…so much so he took the carton of fries out of Mums hand only to realise he hadn't got a spare hand to eat them with. Dad has also been eating Jaffa Cakes, which is excellent as he needs to put weight on and we’d been trying to think of what other foods we could encourage him to eat.  

Unfortunately Dad’s drinking habits haven’t yet improved and he’s still not drinking enough orally, even though he is now drinking normal consistency fluids.  He seems to think the more he drinks the more likely he is to have to use the toilet – and he sees this as a big job.  We've tried to explain to Dad whether he drinks orally or through the PEG he still has to go to the toilet.

A solution has been found to stop Dad having to endure the weekly injections for blood tests due to him being on walfarin. A couple of new drugs have recently been approved by NICE and literally the day the walfarin clinic at Russells Hall Hospital was given the licence to use it, they contacted us to offer it to Dad.  After much research on the internet and speaking to the walfarin nurse and Doctor, we have agreed that this will be a suitable alternative to prevent Dad's blood clotting.  One tablet a day and an annual renal check is far better than Dad suffering his needle phobia on a weekly basis. 

The physiotherapist is working wonders with Dad.  His walking with the pulpit, a tall frame on wheels, has improved considerably.  He has also been taking steps without the frame holding on to the edge of the raised bed with the physiotherapist on his left side for reassurance.  She believes that in time Dad will be able to walk up stairs!  She even got Dad to walk up the first step of the practice stairs in the gym this week – although a little shaky, he did very well - photo below.  Dad is getting stronger and more determined by the day.  We can now see, the only thing holding Dad back physically are his cognitive issues.  The fact his short term memory is so poor, means that unfortunately he can’t remember what he has done five minutes after doing it.  I show him photos and videos of the exercises he has done in the gym and he doesn't even recognise himself.

The physiotherapist and occupational therapist (OT) visited Mum and Dad’s house this week.  It was encouraging to hear that they feel Dad will be able to get up the stairs to his bedroom, either in a stair lift or walking, although walking may be some months away.  They explained to us how once a patient comes back to their home environment, they feel reassured and safe and recovery can improve more quickly.  In the next couple of weeks Dad will be coming home for a short two hour visit.  The physiotherapist and OT will assess how Dad reacts in his home environment.  We did show Dad a picture of his house on Google maps recently, but unfortunately he did not recognise it.  However, when he is in the surroundings of his own home, this may help trigger some memories.  The next step will be to have Dad back for an overnight stay and the aim then to get Dad back home early in the New Year.

Dad went for his cast fitting at hospital yesterday, although the journey wore him out before he got there, he did very well when the orthotist was plastering his leg and moving it up and down - a few weeks ago, Dad wouldn't have let anybody get near it.  He will attend another appointment in 3-4 weeks to have the new splint fitted.  This should aid Dad when he places his left foot on the floor helping it to be flat rather than arched.

It has been lovely to see some of Dad's friends visiting him again over the last couple of weeks.  His face lights up as he recognises a familiar face - although you shouldn't expect him to remember your name.  He still gets frustrated when he hears more than one conversation  at once, or if he can't keep up with the pace of the conversation - 'I can't keep it up with it I can't' he says and he has been known to snap at us to shut up too.

He has been speaking very well, although there is still lots of confusion, and he does try his best to contribute when the conversation is directed at him. Dad still has a huge chunk of his memory missing, but it is clear he feels safe when he his with Mum.  He asks 'Where's Wendy gone' if she has popped to the toilet, or gone to make a drink.  He also gets very emotional when Mum arrives and sometimes when we say goodbye - asking 'When will I see you again - will you make sure you come back?'

We appreciate it's a long road to recovery and that although we may have several positive days with Dad, a 'not so good' day often follows, but we have learnt to take each day as it comes.

Over the last couple of weeks we have received many texts and phone calls off family and friends asking for information on Dad's health and so we hope the photos below keep your thoughts positive.  If you are thinking of visiting we would advise avoiding meal times, so not between 12.30 pm and 1.30 pm or between 5 pm and 6 pm.  Also, Dad has been put on a new routine where he has a sleep in the afternoon between 2 pm and 3 pm, so he's likely to be asleep - probably best to give Mum a call or drop her a text to let her know your plans; let me know if you need her number.

As always - thanks for the support and your time in reading this, we'll get there, however long it takes.

UPDATE 19/11/12: It has been confirmed that Dad has another UTI.  All the signs were there again; Dad's urine has been smelling very strongly again, he has been complaining about the pain around his kidneys and feeling nauseous and the extra confusion set in yet again on Saturday evening.  It was as though someone had flicked a switch - Dad started shouting and became very angry in the matter of seconds, he shouted 'I'm so confused, why am I so confused?"  The nurse addressed our concerns immediately and the Doctor again faxed a prescription for antibiotics to the Midnight Chemist which we fetched straight away.  I really hope this one is not as extreme as the last UTI.

Love you Dad x

Dad standing whilst practicing his ball
 to hand co-ordination.

Dad taking steps without a frame.

Mum & Dad x

Attempting walking up and down
one stair.

   

More ups and downs...

It's taken a while to find the time to write the next installment to keep family and friends updated with Dad's recovery.  If we are not physically with Dad, then our thoughts are with him as we 'fight' on his behalf to ensure he continues to get the best care and chance of recovery that he can.  

There have again been many issues over the last few weeks. Every week I seem to have a list of issues and concerns that need addressing by the care home - the manager has informed us that 'they (the care home) need to rebuild our confidence in them'.  This week it has been left to me, a member of Dad's family, to identify that his mattress is not fit for purpose.  The mattress had a huge saturated wet patch in the middle; this was clearly soaking Dad through the sheet and his pyjamas and creating a high risk of contracting bedsores. Turns out the mattress had other stains, evidence it was not a one off the night I was there and had been supplied incorrectly. The fact it never seemed to be an issue to be raised by anyone as a concern over the past three weeks, beggars belief. Dad is now sleeping on a new 'waterproof' mattress.  Other issues include waiting times for Dad to be taken to the toilet in excess of one hour, Dad's splint being put on his 'good' foot and his night time brace soaking wet for three days with no explanation as to why or any attempt made to dry it. At the end of the day - all we want is the best care for my Dad...we thought we would get it at this new state of the art care home. There are some staff who really do seem to try their best to help us.  We have a meeting with the Director tomorrow to raise our concerns once again.

A particularly distressing visit occurred a couple of Saturday's ago.   It involved me giving an emotional plea to the nurses to 'do something' to address Dad's behaviour and aggression. Traces of the existing UTI were still showing in Dad's urine.The 'f' word had found it's way in to Dad's vocabulary and he was using it for every other word.  A late night phone call to the out of hours Doctor resulted in me travelling to a chemist open till midnight to a get an emergency prescription to help clear the UTI.  

We have now received confirmation from tests done at the lab that the UTI has cleared - excellent news.  But the aggression and anger remains - Dad has even grabbed on to the curtains during one of these episodes and pulled the curtain rail down, he has also spat and physically hit out at the carers.  I have done numerous hours of research on the effects to a person suffering from damage to the frontal lobe of the brain.  This area of the brain is considered as our emotional control centre, home to our personality and memory.  Dad was an enthusiastic, passionate man, full of positivity and wisdom - the reality is that Dad is no longer this person and we have to accept the person he has become.  I will love him no less and I don't expect anyone else to either.  Dad still shows us signs of his caring side, but he is so confused by all that has gone on and does not remember the things we tell him that he says and does - 'But I'm a quiet person aren't I?', 'I would never swear or hit out sweetheart', 'It must be frustration or a defence mechanism.' he says.

I spent some one on one time with Dad yesterday evening.  He was rather sleepy, so I played music to him to which he engaged between spells of sleeping.  We listened and sang songs from musicals, some modern music and hymns - we both had tears at times, it was a special 'Father, Daughter' moment.  Words to songs seem to take on new meanings.  Dad stroked my hair and said 'Thank you'...I asked 'What for?'  'For being with me when there are many other people to be with.' Dad also asked the question 'Why me?' - 'I know' I said 'We've all asked that question Dad'....but who can control life?  It was upsetting after spending five hours with Dad, that when I walked in to his room after he had been put in to bed for the night (singing for a change without any aggression or swearing) he greeted me as though I had just arrived and said he did not remember sitting with me all evening.  I showed Dad the whiteboard we use to communicate with him, the date is on there and names of staff and visitors for that day - 'I've never seen that before' he said...we show him every day.

Another episode over the last few weeks was when an experienced nurse from the local hospital came to take Dad's bloods.  Due to Dad being in an angry mood, he started shouting and swearing at her, she was not alone with Dad - other carers and the nurse from the care home were there, but it resulted in her leaving in tears without the blood sample and putting in a complaint to her manager who promptly followed it up with a call to the care home stating they would not treat this patient in future!  Surely if you go in to the medical profession you should have learnt and gained an understanding of the effects caused to a stroke survivor and especially one suffering from a UTI?  By not taking Dad's weekly blood sample, it was unable to be tested to identify whether Dad should be taking walfarin - this is life saving medicine that she is potentially stopping Dad from taking.  Fortunately a nurse from the local surgery visited another patient in the care home the next day and Dad happily let her take blood samples.

Through all the difficult times we are experiencing, we have to cling on to the positives that keep us going. Dad had a visit from the nutritional nurse a couple of weeks ago who tested his swallowing ability.  I am so pleased to say she has signed Dad off the thickner and he can now drink liquids of normal consistency. He must still be careful when sipping to prevent choking, but it is a positive step in Dad's recovery.  The aim now however, is to encourage Dad to drink more to reduce dependency on the PEG.  Without the PEG feeding water in to his stomach throughout the day, Dad would dehydrate.  He has tried a sip of coffee and tea but still did not like the taste.

Dad has continued with his physio and has had a couple of productive sessions in the gym.  The physiotherapist really is excellent the way she gets Dad to respond to her.  His standing has improved considerably.  He uses the shoulder of the physiotherapist or carer to pull himself up by resting his good hand on their shoulder or uses a rail - this helps in particular when transferring from his wheelchair to the toilet or when being dried after a shower.  Dad also seems comfortable in transferring seated from wheelchair to bed, doing it by himself with verbal encouragement from the physio or carer. This should put him in good stead for when we start practicing transfers from wheelchair to car.  Dad has also been taking some steps with a large frame on wheels with support from the physiotherapist and two others.  I have filmed this on my phone but am unfortunately unable to download it. I wish you could all see it as I'm sure it would all make you feel as proud as I do.  Dad is able to channel is frustration in the gym positively in to the determination to beat his disability - 'You b.....d' he shouts 'I'm going to beat you I am'. I truly believe he will.

The physio has also started using a circulation booster on Dad's left hand.  The booster uses electrical muscle stimulation applied through small pads placed on Dad's arm to stimulate thousands of nerve endings.  The result is that Dad's fingers contract and release to loosen the tightness.  The physio is then able to stretch Dad's arm more easily.  I will endeavor to get some photos on here of Dad working hard in the gym.

Which leads me on to last week's visit to see the Consultant who deals with spasticity and botox.  I admit to dreading this appointment due to Dad's recent outbursts of anger and the behaviour he displayed when he had the botox injections whilst in hospital.  Dad was completely the opposite - he was drowsy, sleepy and totally unengaged, nothing could stir him. He looked white on arrival at the hospital and his blood pressure reading was very low.  The Orthotist was impressed with the range in Dad's arm, hand, leg and foot and was very pleased to hear Dad had been taking some steps.  The decision was made not to inject in to Dad's leg on this occasion as it could have a detrimental effect on Dad's muscles and hinder his walking.  Instead Dad will have a mould taken of his foot and leg which will allow for a new brace to be made specifically for him.  The brace should provide additional support to aid Dad's standing and walking; it should be ready in about six weeks time.  Dad will also have a new arm support  in the next couple of weeks.

The Consultant also reviewed Dad's medication as he was concerned about Dad's drowsiness. He has taken Dad off one medication with immediate effect and will wean him off the muscle relief medication over the next two weeks as it is no longer serving a purpose and can make people tired and drowsy.

I asked the Consultant about Dad's behaviour, as he had witnessed it when the botox injections were last administered.  He advised that it could well be an effect of the UTI and that although Dad's urine is now clean of any infection, the effects may take a long time to get out of the system, alternatively it may be the effects of the stroke. No one has the answer. As I mentioned from my previous research, I have a feeling that this may be Dad's personality post stroke - I guess we have to all stay positive and hope that the aggression may fade in time.

It's nearly six months since Dad had the stroke (six months, can you believe it?) and we mustn't forget just how far he has come.  Three to four years we were given as a time for recovery, so I think he is doing really well.  Regards coming to visit Dad - maybe a change of face would do Dad good and lift his spirits.  From reading this, I hope you have an understanding of how Dad is and it helps to manage your expectations should you choose to visit him. I would strongly ask you to contact Mum to arrange the best time to visit, as Dad struggles with hearing more than one conversation at once - several visitors at one time would not be effective.  Dad is being put on a new routine whereby he will be put back in to bed for an afternoon sleep and it would not be worthwhile visiting during this time.  

I appreciate this has been a lengthy update and hope I have managed to capture your attention without too much drifting off.  I certainly appreciate the time you have taken to read about the continuation of my Dad's stroke recovery.

Dad's Charity Day: I can not write this update without mentioning the successful Golf Charity Day organised by some very special friends of Dad's. Over 70 golfers and helpers turned out to play on a drizzly wet Monday to support Dad, joined by numerous people who brought raffle prizes, bought raffle tickets and made donations.  I snuck in just in time to see the presentations.  To say it was a little overwhelming to see the support shown for my Dad is an understatement.  I am extremely proud to be Alan Skett's daughter - as proud as Mum is to be his wife and Dan his son.  The phenomenal figure raised will help to buy specialist equipment to aid Dad's recovery, we will of course keep you informed of how the donation is used. Thank you from the bottom of our hearts to each and everyone of you involved in this day. 

The love and support shown to Dad from family and friends is testament to the loving, kind and loyal person we all knew my  Dad to be.  I've said it before, but it is so true - and I told Dad this only last night, if he was able to get better on love and kind wishes alone, he'd have been back out on that golf course with his friends a long time ago.  To all Dad's regular visitors and the people who keep in contact with us - we couldn't have got through the last six months without you. 

As always - thank you for your support and thank you for your time.

Love you Dad x