Dad's home!

Well we made it, Dad finally returned home where he belongs. How wonderful after 19 months of living apart, Mum and Dad are back together under the same roof.  The last week of November was certainly more challenging than most, which was to be expected…but returning home with a UTI was not part of the plan – I’ll fill you in later.

When I look back over the last 19 months, I can clearly recall the times where I have felt most vulnerable and emotional with a constant feeling of sickness in my stomach and those times were when there was any change. When Dad first had the stroke, when he moved to the step down at NG after five weeks in hospital, moving to JC the neurological care home last September and any subsequent time Dad spent in hospital.  Those feelings have come back with a vengeance over the last couple of weeks. Dad is at home now where he belongs, but the real hard work has started and my worry now is for Mum and how she is coping both mentally and physically.  Mum suffers with trigeminal neuralgia (TN) - a condition that causes recurring severe pains through the nerves in parts of the face. She has suffered from this for years and prefers to do it in silence.  The pain is often unbearable and stops Mum from being able to talk and eat but she grits her teeth, literally, and perseveres – she is a true warrior in every sense of the word.

Throughout the month we have received many texts and messages of support about Dad leaving the care home which have been encouraging for us all. Something I think I must clear up however is people’s understanding of a neurological care home and rehabilitation.  Although the home nursed people with brain injuries, the care was no different to that received in any other nursing or care home up and down the country.  The rehabilitation Dad received was for approximately half an hour to an hour each week, sometimes Dad couldn’t even sustain that. People seem to think that he had been receiving intensive physio sessions and therapy on a daily basis, but unfortunately this was not the case – apologies if I gave you that idea.  Much of the recovery Dad has made is from the daily visits and interaction from Mum and other members of family and friends engaging with him and trying to keep him in the real world.

It was an emotional day when we brought Dad home - I hardly slept the night before I was so excited, yet apprehensive at the same time. We found it emotional saying goodbye to the residents of JC especially those who had spent quality time with Mum and Dad during their time there.  Mum wrote goodbye and good luck messages to the residents families who over the last 15 months had built friendships with Mum.  Many of the visitors, like Mum herself, travel to the care home on a daily basis to be with their loved ones – almost like a vigil. There is an understanding between them of the heartache involved in seeing a loved one change so dramatically, both mentally and physically, from a brain injury. The families we met showed courage and dedication and are a true inspiration to us all - it is not only the victim’s life that changes in an instant forever, but also the lives of the loved ones around them - the impact on the family is immense. The reality is that these life changing events could happen to any one of us at any time, as my family found out.  We have seen first hand the tragic impact of the brain being starved of oxygen, the devastation caused by a road traffic accident and the destruction to life that Huntington’s disease and alcohol addiction slowly brings. It’s been an eye opening and emotional experience.

So how has it been with Dad returning home – it is great to have Dad home and back where he belongs, people advised it would be difficult, but the reality is that nothing could have prepared us for just how hard it would be.  With such a big change it is paramount that everything should run smoothly and be in place for the transition.  It is hard enough dealing with the change, so to still be chasing and battling for things to be in place after the event is extremely frustrating and adds to an already pressurised environment, as we have found.  Surely there were enough people involved to enable a smooth transition? We are still waiting for essential equipment to arrive that we were advised would be provided in advance of Dads return, including equipment to be used in the event of a fall, which is frustrating and surely not acceptable? An Occupational Therapist from the local authority came to assess Mum and Dads house and made it clear she was unimpressed that this had not already been arranged; she also made suggestions for other adaptations that may help.

Regards the carers…where shall I start - I guess positively would be good? The care package is for two carers to visit Dad four times a day, once in the morning to get Dad up, twice during the day to toilet him and finally at night to take him to bed.  Well…some of them have been really good showing lots of promise, they have visited several times and have built up an understanding of Dads needs and complexities and have learnt how to diffuse the situation when Dad becomes angry and frustrated…others, well, they leave a lot to be desired.  We have already raised concerns about the way one carer spoke to Dad shouting at him ‘If you carry on like that you’ll have no carers coming in to look after you’…yes because that is the way you speak to someone with brain damage. Twice in a week Dad’s glasses have been handed back broken to Mum by the carers – this has resulted in family members having to take them to the opticians to be fixed as Mum is unable to leave the house and Dad on his own.

A care plan was produced with help from the family who know Dad better than anyone, it is meant to be read by every carer that comes in to the house to look after him – but this isn’t the case.  If they don’t read it they don’t have an understanding of Dads needs and disabilities.  Time keeping is a massive issue – so many times Mum and Dad have waited nearly an hour for them to arrive after their allocated time – but we have been told by the care provider ‘give it time for things to settle, it’ll be better next week…’ Mum has resulted in toileting Dad herself several times a day as a consequence of his incontinence and poor time keeping by the carers.  We put a call in to the incontinence nurse to visit within days of Dads return, but following a call to chase we have been advised ‘the appointment will take a while’. In the meantime the pads don’t seem sufficient in holding the urine in place, Mum walked in to the lounge the other day to find it trickling down Dads leg and collecting in a puddle on the carpet…incorrect pads or incompetent carers, we’re not sure?
With the amount of water going through Dads PEG it is inevitable that it has to come out the other end…but there seems no end in sight to the dietician reducing the 1,800 ml of water going through.

The incontinence has a huge impact during the night.  We asked for night time records from the care home to understand how often Dad is changed through a night to give us an expectation of what Mum would be dealing with  – once a week on average according to the records, otherwise he sleeps through the night. We don’t think they were very accurate – as every night Mum checks on Dad and ends up having to change his pad and clothes on her own, not easy at all when Dad is lying in bed unable to help Mum and in the worst situations, she changes the bed sheets too. It isn't realistic that Mum can sustain this - I don't think anyone could, so to try to prevent it from happening we have asked the dietician to change the timings of the 1,800 ml of water going in to Dad, so it is not so near him going to bed.

The few nights that I have stayed over to help them both I have found it extremely tiring, checking on Dad through the night and helping Mum do the pad and clothes changes – how she does it on her own I do not know.

The days for Mum are exhausting too – the washing machine is endlessly on as Dad can have up to three changes of clothes a day which all require cleaning, plus all the bed linen and towels on top and she now has to prepare and cook three meals a day. Sue, Mums and Dads daughter in law, has been a big help popping in meals to heat up and fetching shopping in for them – such is the convenience of living five minutes away.  On top of this, throughout the day Mum has to ensure Dad takes his tablets – 12 in total.  This is not easy either as Dad is so susceptible to choking if he does not swallow them correctly.

Disappointingly we were informed as Dad returned home that the PEG tube inserted in to his stomach has started to attach itself.  The tube has to be cleaned daily and pushed in and pulled out by an inch once a week to prevent the skin growing around it.  Unfortunately this means Dad will have to be readmitted back in to hospital to undergo a procedure to fit a new one.  Not great when we’ve only just got Dad home.

Oh yes - you did read correctly at the start of the blog…Dad returned home with a UTI. We picked up on it once we were home and early Saturday evening the smell was so strong and the urine so dark we phoned the NHS medical help number 111, to get an out of hours Doctor to prescribe antibiotics.  I spoke to three different people relaying the information before they confirmed a Doctor would be sent to see Dad.  To each of these people I explained that Dad was no longer at the care home and that as of yesterday, he was officially back at his original home address and provided the details.  I was gob smacked, though probably shouldn’t have been with our experiences to date, to receive a phone call a couple of hours later from ‘Prime Care’ advising that a Doctor had just arrived at JC (the care home) but Dad wasn’t there….what can you say?!  We then had to wait another four hours until 1am before he finally arrived at Mum and Dads house; fortunately he was able to prescribe antibiotics which Dad started immediately.  This took Dads daily tablet intake up to 18. For five days it seemed like Mum was constantly giving Dad tablets – well she pretty much was. Thankfully – the UTI has now cleared.

As a result of the UTI, we found we couldn’t leave Dad sitting in wet and smelly clothes, especially when it was at least another couple of hours before the carers were due back.  On one occasion Mum and I decided to take Dad to the toilet ourselves, as we have done many times before.  What an experience!  Just as I was pulling Dads trousers down a shot of diarrhoea landed on my hand and jumper…’Mum, look what Dads just done’ I said. We started laughing with that ‘black humour’ that takes over - as Dad started splattering diarrhoea shots all over the bathroom floor. We managed to sit Dad on to the toilet, his clothes and pad in a state.  Dad was chuckling away at the situation – toilet humour is the one thing guaranteed to make him smile these days, but then the smell hit me.  Retching I ran to the upstairs bathroom to wash it off me, leaving poor Mum to clean up the mess.  Bless Dad – he was very apologetic after the event, even though he was smiling when he said ‘sorry’.

Dad is making good use of the bathroom as you have read and the vertical lift we had installed is definitely money well spent. Dad uses it twice a day; it is an excellent solution to get Dad downstairs in the morning and back upstairs to bed at night. He has been likened to the Pope in his pope mobile as he slowly glides up and down from one floor to the other, sometimes giving us a smile as he goes.  The grandchildren think it’s the best thing ever - ‘Can I have a go in your spaceship Pop-pops?’ they ask on every visit!

We asked Oliver what he thought about his Pop-pops being home at last – ‘I don’t like it…’ he replied – ‘oh’ we said alarmed ‘what’s wrong?’…’nothing’ he said with a big smile on his face ‘I love it’! I think he’s been watching too much X-Factor!

People keep asking – does your Dad know he’s at home and has he settled?  Well we’re not sure.  We tell him often enough he is at home and how good it is to have him with us, he remembers his address – with prompting, but whether he recognises it and it feels familiar we can’t be sure.  He’s never used a lift to get upstairs before so that’s not familiar to him.  The angry spells still happen so the environment doesn’t make a difference but they are usually caused through frustration or mishandling and Dad continues to be tired.  Mum has been playing music to him and he sits at the table for his meals and to read (or look) at the paper.  We desperately need to get a routine in place to help both Mum and Dad but we appreciate it will take longer than planned – which is why we feel so strongly that everything should have been in place to come home to. I've tried to explain things how they are and to keep it real, life after stroke is immensely challenging. I hope with all my heart that life gets a little less complex next month for Mum and Dad.

It would help so much if there was one contact, one person to speak to, to deal with all the issues that keep arising...but we are left to leave messages with so many various departments and then wait and wait for them to return our calls. Very frustrating. And I know we are not alone as a friend in another part of the country is experiencing exactly the same frustrations whilst caring for her parents too.

Another friend said to me this week when I was off loading, it’s not about taking it day by day anymore, it’s hour by hour – and that is exactly how it feels.  I never know when I phone Mum whether she will be angry, emotional, frustrated or 'ok'. We will keep going as we always have done and we will continue to give Mum the support that she needs in her new role of full time 24/7 carer to her husband - she is already looking exhausted and feeling emotional. I was advised to seek help from numerous charities before Dad left the care home - 'I'm sure they'll be able to offer some support through the night' I was told...unfortunately this is not the case - every line of enquiry has resulted in a dead end. If anyone has any ideas or has learnt from similar experiences - please get in touch and let us know.

As the Christmas festivities come round again – we thank each and every one of you for your support over the last 12 months and for keeping in touch and reading this. You won't be surprised to hear that Mum doesn’t have the time this year to write the 150 plus Christmas cards she would usually send to family and friends – so please accept their love and best wishes via this blog and pass them on to those who don’t have access to the internet.

Wishing you all a special time this Christmas and if you too are caring for loved ones – our thoughts will be with you.

Here’s to a happy and festive Christmas time.

Love you Dad x

Dads last night at JC - 21/11/13

Crossing the threshold with Len 22/11/13

Pop-Pops in his 'spaceship'.

Dad on his raised chair with
his grandchildren.

A typical post stroke facial expression
 from Dad.

Nearly home...

Always a pleasure to see you back here to share the month's events - thank you.

One of the many worries we have had whilst Dad has been rehabilitating after his stroke, is how will people react if Dad has one of his shouting episodes when we are out in public? If you recall, I've already had one experience where people just stopped and stared when Dad was shouting at me whilst transferring him out of the car. You imagine if you were enjoying a family meal in a restaurant or out shopping and you heard somebody suddenly start shouting and swearing and becoming abusive - how would you react? I imagine you would be quite offended, disgusted even - especially if you were with young children hearing such bad language.  This is a challenge that we have to confront, as the alternative is that Dad spends the rest of his life behind closed doors, only venturing out for hospital appointments. Admittedly the shouting only occurs if Dad feels pain, particularly in his arm, or if there is too much noise - it is certainly more frequent if he is suffering with a UTI too.  

Well at the start of the month, Mum bit the bullet and took Dad to the local pub along with another resident and an activity coordinator from the care home. It was a quiet afternoon so noise was minimal in the pub, Dad ordered himself a coffee - not his usual tipple, but times have changed - and he ate all of his food, without any shouting or upset. Mum reported a pleasant afternoon! This is certainly something we need to start doing more of once Dad returns home, although similar to taking a baby out, there's a bit of thought planning to do before hand and lots of things to pack to cater for every eventuality.

Those of you who are Corrie fans will be familiar with Nick Tilsley's portrayal of brain damage following his car accident in the programme. A week after Dad had his stroke, we were told that the damage to Dad's brain was on a parr with a head injury as a result of a road traffic accident. The anger and frustration that Nick portrays is a glimpse to what we are experiencing with Dad, but unfortunately Dad is not acting.

During the month Dad developed a rather aggressive cough. He seemed to be endlessly choking - it was so loud, so often and it made his face go red...it was really concerning for us -  nurses and staff even came on several occasions to see what was happening, hearing it from two corridors away. But for all our efforts of raising it with the care home, it took two weeks before the Doctor saw Dad on her round and diagnosed bronchitis and a course of antibiotics which helped to clear it up with immediate effect. You might wonder why we allowed it to go on for so long without Dad being seen by a Doctor, but after more than a year  of keeping on top of Dad's care you do feel you might be over reacting, especially when the nurses are more qualified than you to know whether to call the Doctor as an emergency. Believe me, Mum was there every day raising our concerns - and rightly so now knowing it was bronchitis that could have led to pneumonia. I believe it was lack of communication between the care home and the surgery that let us down, we were informed the regular Doctor had been on leave for three weeks - contingency springs to mind?

We arranged privately for a second opinion on Dad's medicine, spasticity and mobility before he leaves the care home. The neuro physiotherapist was recommended by the care home's physio and the social worker. He identified straight away that Dad's pain relief is not being managed sufficiently. 'There is no way Alan should be experiencing this much pain' he told us and explained the pain may also be heightened as a result of damage caused by the stroke to the thalamus in the brain, which has a role in feeling pain. He made a recommendation to increase Dad's pain relief medication, which has been put forward in a report. We are currently waiting for the Doctor to review and action. There may be potential side effects including drowsiness, so we were advised it would be better to manage these whilst Dad is in 24 hour care, and as there are less than three weeks to go, we hope this is done soon.

A full assessment was carried out on the left side of Dad's body - 'You hurt me and I'll hurt you' Dad threatened the physio with a clenched right fist. He responded to Dad very professionally and was able to get Dad to stand and walk with his support. He stretched Dad's left arm, not very far before Dad started shouting that he was hurting him. 'He should not be in this much pain' he told us. We were also advised that Dad had good range in his leg and his hamstrings were not too tight, as had previously been suggested. His focus was on Dad's left knee, explaining that this was the reason why Dad could not place his foot to the floor. He felt Dad's knee and diagnosed arthritis and irritation of the knee. Understandable considering Dad had a right knee replacement six years ago, his left knee must be suffering from the same wear and tear of years of sport.

We now have plans to meet with a stroke consultant who works privately in partnership with the neuro physiotherapist to try to get a pathway in place to treat Dad's knee and shoulder simultaneously. We are hopeful, but not naive to know that you 'get what you pay for'.

A second opinion has also been provided on Dad's hand and arm splint and taking the advice, we have now purchased a saebostretch for Dad's left hand to aid with his recovery once he is home. The splint has been mentioned several times during Dad's rehabilitation, but the NHS have been reluctant to provide one. Therefore, we have now invested some of the money that was raised for Dad last year at the charity golf day to aid in his rehabilitation as planned - so thank you if you supported that day.

We have continued to do all that we can to engage with Dad to help his brain continue to reconnect. Music as you know is amazing therapy for Dad - we have been informed he has been on the karaoke machine a few times this month and we had a lovely evening playing hymns and church songs to him as a different genre of music. Hearing him sing so enthusiastically to 'This little light of mine...' put a smile on all of our faces. Dad has also been working through a maths workbook that Mum has taken for him  - admittedly it is for ages 3-4, but it keeps his brain active. Who knows we might be on age 5-6 before you know it.

A lovely moment to share with you this month - back in the day we put a white board in Dad's room at the care home so we could communicate with him when we weren't there. 'Had a great day with you today Dad', 'Wendy and Dan will pick you up tomorrow at 12pm' even Oli and Ruby write messages and draw smiley faces for their Pop-Pops. We like to think the care staff point the messages out to Dad - we know he won't remember the message, but in the moment it is a reminder that he has a family that loves him. Following a toilet visit I had assisted Dad with, we were on our way back out of the room when I showed him the white board so he read the message which ended 'Love Wendy'. He asked me for a pen, so I wheeled Dad close to the board and he wrote 'I do. Alan xxx'.

A further meeting with the social worker went ahead this month to discuss in more detail the arrangements for care when Dad is home. Dad sat with us for the meeting. The social worker speaks slowly as a result of the stroke he suffered 14 years ago, but because he does, Dad seems to be able to keep up with what he is saying. Dad totally engaged with him, I feel there's almost an element of sympathy that Dad has for him, not realising that he is in fact in a worse situation than the social worker. It is probably well documented how I felt about the social worker when he did not support our quest for further rehabilitation for Dad last year, but to see the way he spoke to Dad and how he made him laugh and smile on several occasions throughout the meeting, it made me realise that he obviously does have a very good understanding of what life after stroke really means. Again he referred to the Doctors diagnosis last year - 'look at him now' he said 'who would have thought it'.

To everyone who supported and sponsored Helen and Katie to motivate them on their half marathon challenge raising money for the Stroke Association, thank you so much. It was an amazing and emotional day and they both completed the Bupa Great Birmingham Run in under three hours - fantastic, we were all very proud of them. Back at the care home, we told Dad what they had done on his behalf and he welled up calling them both 'Champs'. I'm not sure on the totals raised yet, but I will let you know.

Well next month I hope to be sharing with you the news that Dad is back home. The vertical lift is in place and the building works, including wet room and ramps at the front and back of the house, are complete with just the snagging issues to finish. We now need to make sure all the equipment is delivered and put in place, such as the bed with rails, air mattress, shower chair - the list of jobs is substantive and time is running out, but at least the 'big jobs' are completed and the house no longer resembles a building site. There has been so much upheaval at Mum and Dad's house lately and there has been a lot of hard work put in to making it all happen. Hopefully a bit of normality will now return - well until Dad returns, as there's nothing normal about wiping your Dads bottom and seeing your Mum struggle to transfer your Dad on her own from a chair to wheelchair and worrying about their safety.

I am well aware that we are not the only family to experience difficult times and that life sometimes does deal you a tough card - but by staying positive and believing and having your support, it certainly helps us. As always - thank you for the visits, for the read and for sharing our journey, until next month.

Love you Dad x

Walking with Dad at the start of the month.

Dad peddled one mile in 10 minutes
using both legs 12/10/13.

A Saturday night watching 'Strictly' - Dad's getting good
at remembering the judges names with a bit of prompting!

Dan, Oli and Ruby join Mum and Dad
 for tea 18/10/13.

Comparing our leg supports...and Dad tells
me I'm the brave one !!!

So proud of them - Helen and Katie with
their well deserved medals 20/10/13.

You're beautiful

Great to see you back here again, hope you’ve been keeping well? Our family have all been suffering with colds this month – it started at the care home and spread like wild fire with patients, staff and visitors all passing it around, inevitable at this time of the year.  Poor Dad got through a box of tissues in one day with the constant dripping of his nose.  I know I felt rubbish when I had it, so he must have felt really miserable.

So how was September? Well we started the month on a high when we received the news that Dad would get 12 weeks of social funding to stay at JC whilst the works at Mum and Dad’s house are completed. Fantastic!  I could hear the sheer relief in Len’s, Mum’s and Dan’s voices when I phoned them one by one that morning to give them the news - I admit I shed a few tears of joy in the middle of the office as I too was so relieved at the unexpected, but very welcome, news.

Unfortunately for Mum, when she has been at home, she’s been living in the middle of a building site.  The plan is to have the wet room completed in October and we are still waiting for the lift work to be started with a lead time of six weeks. Ramps have been built at the front and back of the house to enable Dad to be pushed in and out in his wheelchair.  There are many more adaptations and changes to be carried out around the home and we are trying our best to work through these and get them done – all very difficult when Mum spends half of her life at JC.

One Saturday during the middle of the month we brought Dad home for the day.  We had been saying for the week prior that he had started becoming aggressive again and the swear words were being reeled off more regularly. Flagging up the possibility of yet another UTI - we were advised ‘it’s all part of the stroke’. Dad was pretty harsh with us when we were changing him at home, accusing us of not being careful enough – as a family, we couldn’t be any more understanding and responsive to his extensive care needs.  During one pad change it became apparent that he most definitely did have an infection as the pad, having only been changed 30 minutes earlier, was covered in a discharge.  I kept the pad and took it back to the care home for the nurses to witness.  A urine sample had to be taken and sent for testing - three days later a UTI was confirmed and antibiotics were prescribed.  Thankfully this time it was treated by oral antibiotics and another admission to hospital was avoided.  However, we have not yet had confirmation that the infection has cleared.

After a four week wait the day finally arrived to take Dad to his appointment at the Assisted Living Centre (ALC) to trial the vertical lift.  Ha…but guess what?!  We received a call on the morning from the ALC advising that the Occupational Therapist (OT) who would carry out the assessment had phoned in sick and that we would have to re-book.  Thankfully during Mum’s response of pure anger and frustration at being let down yet again, she had a bright idea and asked if the care home’s OT could accompany us with the visit.  Dad trialled the lift and, as we thought, there were no issues and he was able to transfer from one floor to another smoothly and safely.  We’ve now been given the green light for the vertical lift to be installed in our home – result! Shame we had to wait so long for what was a 60 second trial.

Following an email to PALS where I raised our concerns about the late November appointment for Dad's spasticity review, we received a positive response from them notifying us that it had been agreed to be brought forward to September.  Once again, it was left to the family to be proactive to get the appointment moved forward by two months.

Dad had another classic sneezing moment as we pushed him in to the room to face the Consultant. I saw the sneeze coming and put my hand to his nose to shield the spray…but alas, some of Dad’s snot escaped shooting across the room and landing in a thick gloop on the Consultant’s trousers!  Typically nobody could get a tissue quickly enough.  As the Consultant returned to the room with a wet patch on his trousers and brushing down his jacket, Dad apologised and we continued with the appointment.

We were in there for well over an hour with the Consultant and his team as they assessed Dad’s left arm and leg.  The positive outcome was that Dad received two injections of botox in to his left bicep which will aid the stretches we do with his arm and benefit his hygiene routine allowing him to wash with more ease under his armpit.

Of course if you’re a regular reader, you will have an inkling of how this appointment went…On went the music for distraction, we held Dad’s right hand to keep him calm and reassure him and to prevent him from punching the Consultant who Dad was letting rip at for causing him pain - ‘You f*cking b*stard you’re f*cking hurting me’ he shouted with a face full of rage.  The nurse in attendance antagonised the situation by telling Dad that this was ‘no way to speak to a Doctor’. Yes she was probably right, but there is no reasoning with Dad when he’s like this and in a few minutes we knew he would calm down, move on and not recall any of it– but she kept on. ‘Show the Doctor some respect’ she said. ‘The b*st*rds not f*cking hurting you is he, he’s f*cking hurting me, so f*ck off’ was pretty much Dad’s response…and how did she react? She laughed in his face.  ‘Don’t laugh at my Dad’ I could feel my heckles rising, ‘he’s got dementia from a stroke’…and so we had a little confrontation of our own whilst Dad continued shouting.

Shortly after, Dad had forgotten about the painful injections the Consultant had administered and continued with his singing, serenading the nurse with James Blunt’s ‘You’re beautiful…you’re beautiful’….mmmm not the song I would have chosen on this occasion but hey ho, we got through it.

Dad’s leg was discussed in detail, though I am none the wiser what was agreed as a future plan to aid Dad’s mobility.  The consensus was that his hamstrings were ‘not that tight’ and therefore did not require botox.  They requested to see Dad take some steps which was pretty difficult in the crammed consultation room with six people squeezed in to it. Dad didn't do the best walk, but they could see that he is unable to place his full left foot to the floor which results in him walking on his toes.  I was able to show them some footage on my phone of Dad being supported doing a better, longer walk. A phone call was going to take place with the physiotherapist at the care home to discuss the next steps (excuse the pun).  As I say, we are still waiting to hear of any decision going forward.

Also that week, we took Dad for an appointment with an orthotist to review equipment that could assist his hand, wrist and arm.  We took with us the two splints Dad had been given over the last 15 months that he has worn on and off, now and again, without any consistency.  ‘Why hasn't Alan been wearing this splint?’ – the orthotist referred to the one given to Dad last November. Well…either staff at the care home have not bothered to put it on Dad or more recently we have been advised that Dad is better off without a splint on his left arm.  ‘No – this is the splint that Alan needs to be wearing and he should be wearing it several times a day and should have been using it since November last year’ we were informed.  It is frustrating to know this and even more frustrating after feeding it back to the care home, that we still arrive to visit Dad to find him without the said splint on.  Admittedly it is a little awkward to put on and Dad can be quick to tell you that you’re hurting him – but if you work with him, and explain what you’re doing, there shouldn't be any problems.  The splint is never going to get Dad’s arm or hand functioning again, but it will prevent his arm from clubbing (coming permanently in to his body) and his hand from becoming a claw (fingers permanently clenched).  From the botox injections and wearing the splint, we can already see an improvement to the straightness of Dad’s arm and hand.

Unfortunately I do not have much to report on the physio side as I’m not sure what Dad’s been up to. He has been for a couple of sessions during the month on the cycling machine but we just wish he could do this more often to help keep movement in his left leg, as his tolerance levels for us stretching  his left arm and leg are pretty short at the moment. When Dad sits for 99% of the day – his leg stays in that 90 degree position and it becomes harder and more painful to stretch it out, this in turn restricts him from elongating his leg allowing him to place his foot flat to walk.

Dad has played a couple of games of bingo at the care home with Mum – apparently he’s very quick at putting the counters over the ‘correct’ numbers – which is good, and he’s also very quick at calling out the bingo nicknames to the numbers! Perhaps we’ll be taking a trip to Mecca very soon!

Well I think that captures the key events on Dad’s progress this month. Please don’t forget that Dad’s nieces Helen and Katie will be running the Birmingham Half Marathon on Sunday 20th October in honour of the legend that is ‘Alan Skett’ and to raise money to support research by the Stroke Association.  Again I attach the link to their Just Giving Page and hope you will help motivate them by donating to this cause that has become so close to our hearts:

http://www.justgiving.com/KatieAndHelenBirminghamHalfMarathon

Other carers from around the world have been getting in touch with me through my blog and offering their support and advice on caring for loved ones.  Some have asked that I help raise awareness of their campaigns; therefore I attach a link to information about mesothelioma which is a preventable deadly cancer caused by exposure to asbestos:

http://www.mesothelioma.com/heather/awareness/

I always end by thanking our loved ones for their support and every month I mean it.  The same few people have been with us right from the start, whether it’s helping Mum get home at night, visiting Dad for an hour even though he ends up sleeping throughout the visit, or lending me an ear while I rant and offload the frustrations of the day or week – we value what you do.  As the number of texts dwindle and the visits become less and less we have to continue to stay strong and do everything we can for Dad to have the best quality of life that we can give him. 

Thank you to those that are still with us on this journey that rocked my world…and if you’re reading this – thank you too.  Please share this link to spread our story and help with the fight to prevent strokes – I wouldn't want any other family to go through what we are going through right now.

Love You Dad x

Mum, Dad and me 16/9/13

Put your arm round Len Dad - show him some love!

Enjoying the September sunshine.
Dad with his brother and sister-in-law.

The hand splint that Dad will now wear daily.

                                       

Plans to get Dad home...

Good to see you back here again - grab yourself a cuppa and even a biscuit, I’ve got a lot to share with you this month.

So August started pretty much as July ended, with Dad still in hospital receiving intravenous medication to clear the recurring UTI. To knock us down a little further when we were already at a low point seeing Dad back in hospital, we received a letter from the PCT – or Clinical Committee Group (CCG) as they have now rebranded themselves.

The letter advised us that ‘Mr Skett no longer met the criteria for Continuing Healthcare’ and that they ‘have therefore requested Social Services involvement in your Father’s care’, leaving us with more work to do if we are to appeal their decision.  No indication of an end date to the funding was provided in the letter, we had to find that out for ourselves.  We have since heard verbally from other sources it ended on Thursday 29^th August.

So the CCG requested Social Services to get involved…well they didn't do it very well, as I, along with others involved with Dad’s care, tried for the whole month to get a social worker allocated. So much for a smooth transition from Health funding to Social funding, neither social worker from either department got in touch with us (and haven’t for over a year for that matter). 

Eventually I was informed the previous social worker from last year had been allocated, so I contacted him to arrange to meet - which we did on the 29^th.  Following the meeting, we are now waiting to hear from yet another ‘decision panel’ as to whether Dad gets funding from social services for the transition period of approximately 12 weeks before Dad returns home permanently. I will let you know the outcome next month.

Yes you did read that correctly ‘before Dad returns home permanently’!  We are now making plans with immediate effect to get Dad home where he belongs.  The works to build a downstairs wet room have started – if you recall, works were due to start in March but were stopped when we listened to the GP’s opinion that ‘Dad shouldn't go home’. It is frustrating, as had we stuck to our original plan, the wet room would have been built by now and in place for Dad’s return.

A lift company also visited us in August providing a quote to install a vertical lift in Mum and Dad’s home to aid Dad getting upstairs.  We were advised in March that a stair lift was not an appropriate method for a stroke patient to use as there were a high number of health and safety risks.  Therefore, the vertical lift is our chosen solution taking Dad from the living room up to his bedroom and vice versa.

The lift will minimise disruption to Mum and Dad’s home allowing Dad to keep some normality and dignity by keeping his bedroom upstairs and keeping the downstairs as familiar as possible.  Their living room and dining room is one through room, therefore having the bed downstairs would result in a complete lack of privacy for Dad.

We were informed any home construction works requested through the Local Authority has a waiting list of approximately two years, so the quickest and most effective option has been to do it ourselves.

Unfortunately we have not yet been able to order the lift which takes six weeks to install, as we have to wait for Dad to trial it first.  It was frustrating to hear that Dudley Social Services have an assessment centre with a vertical lift right at the top of the road he currently resides in at the care home; an appointment has been made to attend mid September. Had anybody informed us this facility was there we could have trialled it weeks or even months ago and we could have been in a position where the lift was now well on it’s way to completion.

So that’s the background to getting Dad home.  We are not naive as a family to think that it will be easy, our lives have been turned around following Dad’s stroke and new challenges will present themselves when Dad returns home and Mum becomes his full time carer.  I’m sure we'll all need your support more than ever.

So what about your Dad’s health? I hear you ask.  Well, Dad left hospital and returned back to the care home on the 6^th August.  As soon as he left in his normal clothes and was safely in my car he appeared to be so much better, but from my recent experiences, I think hospital has that effect. I’m pleased to say Dad’s doing ‘alright’ - we know he’s never going to be the same man he was before the stroke.  There have been moments of the old Alan Skett shining through this month, a bit of quick wit here and there and the ole chinks of his intelligence still amazes us, but there have also been moments when we see the new man that the stroke has created, the confused, frustrated and vulnerable man.  I write each month and explain there are good days...and there are not so good days.

A side to Dad we have experienced since he has returned from hospital is a ‘touchy, feely’ side and not necessarily in a good way.  Dad has taken to wanting cuddles and affection.  He has become tactile stroking legs and backs and even looking down the front of female’s tops – please take note ladies when visiting and dress appropriately!  There have been a couple of reports put on his behaviour chart from care staff, but we are hoping the frequency of episodes has reduced as the month has ended.  I’m not sure if it’s to do with me playing numerous ‘love songs’ to Dad this month…?  You know how he enjoys his music, well following a chat with friends about the ‘power of love’, it prompted me to play Celine Dion’s version of the said song, which led to many more ballads.  Dad certainly enjoyed singing to them ‘Listen to the words’ he told me, ‘Listen to the emotion in her voice’…Perhaps it’s triggered a connection in the brain with thoughts of love...??

One evening Mum, Dad’s brother and sister-in-law and myself were sitting with Dad at the table after his evening meal, listening to music I was playing for him (love songs again I think), when Dad started making innuendos with a banana.  Sometimes you do have to laugh, so whilst Mum and my Aunty tried to stifle their giggles, I sternly told Dad that he was being very inappropriate and uncouth (one of his words) – his response ‘Well it makes them laugh down at the Scouts’ – ‘Yes Dad’ I said…’but you're 69 not 14’ – ‘Oh!’ he said.  I hasten to add; I've eased off playing the love songs and am now sticking to more upbeat songs!

There are days when Dad is more tired than others, and occasions when all the conversations going on at once get too much for him that he shouts at everyone to ‘shut up’ or switches off from it all and closes his eyes.  But there are also the days when he is more engaging and interactive ‘more relaxed’ Dad tells me. Over the Bank Holiday weekend I gave up the invitation to two family celebrations with Len to spend time with Mum and Dad in their own home.  On each day I collected Dad at 12 pm – mind you, even that wasn't straight forward.  On Saturday he was just eating his breakfast when I arrived and on the Sunday he was still in bed due to insufficient staffing levels – the reason I was given ‘three carers hadn’t turned up to work’.  At least by the Monday he was ready and raring to go when I got there at 12 pm.

Each day spent in his own surroundings Dad improved a little bit more, which made it all worthwhile and gives us hope for Dad’s permanent return home.  He appeared quiet and subdued on the Saturday but enjoyed a day of sport on the TV. Sunday he was a little more engaging and by Monday he was at his best joining in conversations and laughing with us.  Now whether Dad had had enough of mine and Mum’s company and appreciated a bit of male companionship from Len I don’t know, but it was good to see Dad laughing with us!

It was good to be eating at the table together like we always used to as a family – it felt normal.  Mum and I were with Dad for one of his lunchtime meals at the care home between appointments, when his lunch arrived. He was presented with a full roast and we both thought ‘he’ll never eat all that’ – sure enough he ate and enjoyed every last bit, even using a spoon to get the last of the gravy off the plate.  ‘Delicious’ he said!  It’s good to see he still has his appetite.

Whilst Dad was at home with us it highlighted how often he asks to use the toilet.  One of the days, we put Dad on the commode nine times in seven hours which is due to the high volume of water feeding in to his stomach through the PEG.  Although realistically the toileting couldn't be sustained on a daily basis, it’s evidence that he will need the maximum package of care provided by social services, which is two carers four times a day.  Mum and I have both received PEG training now as it will be our responsibility to administer the water and care of Dad’s PEG and pump machine when he is at home and we will be responsible for the hygiene and cleanliness of the PEG around Dad’s stomach.

Having not done any walking whilst in hospital, I was keen for Dad to keep acquainted with his ability to walk.  One evening, I supported Dad as he walked out of the quiet lounge, along two corridors, before walking across the big lounge to his ‘comfy chair’ - no mean feat I tell you!  Mum was right behind with the wheelchair which Dad made use of a couple of times to rest, but when asked if he wanted to continue walking it was very encouraging to hear that he did.  It was a pleasant surprise for the nurses as he walked passed the window of the nurses’ station and they could see his head and shoulders going by – a little cheer went up.  Usually they don’t see Dad as he is pushed by in his wheelchair.

However, it was disappointing to go in the next day and see Dad sitting without his splint or shoes on.  We were informed Dad had another open red sore on his big toe as a result of the fantastic walking he had done with me the night before.  We've bought Dad seamless shoes and seamless socks, but still his toe rubs against his shoe due to the foot drop he is experiencing.  A big help for this would be botox in his foot or hamstring muscles.  Unfortunately we have just received an appointment with the Consultant to review Dad’s spasticity and it is not until the end of November.  Extremely disappointing and frustrating when at the appointment in April, the Consultant reassured me he would review Dad in three month’s time.  It should have been in July not November.  A conversation and a bit of support from the Patient Advice and Liaison Service (PALS) may be required.

As I mentioned earlier, the social worker met with us at the end of the month.  He hadn’t seen Dad since he was back at NG over a year ago.  He was quite amazed at Dad’s progress and told him as much ‘I am not patronising you Alan, but I never would have thought you would be doing as well as you are now after the last time I saw you at NG’.  Mmmmm and isn't that because the NHS team had written Dad off for any further rehabilitation??  Anyway – it was encouraging to hear and especially as he himself is in his 14^th year of recovery after a stroke. 

He asked about Dad’s anger and told us it was difficult to shake off a reputation once you’d got one. ‘Oh’ I was surprised – ‘so you’re saying Dad’s got the reputation of being an angry stroke survivor then’?  It appears he has – but maybe it has more to do with the recurring UTIs he has experienced over the last year that leads to the anger and confusion.  This might be the reason why the Consultant we saw in August documented in his report ‘this pleasant gentleman’.  Yes Dad can still get angry, but only if his left side is hurt or he is not listened to when he is experiencing pain.  I have witnessed him go from happy Dad to angry shouting Dad in 0.3 seconds and witnessed him throw his slipper across the floor, but on the positive side, he reverts back to being calm just as quickly.  The social worker advised Dad about thinking before he acted – advice he says he still needs to refer to 14 years on.  Although Dad listened and agreed, as with everything else, it was forgotten about pretty much straight away.

Each month I end my blog thanking people for their support, that sentiment is especially true in the case of my ‘new friend from America’.  Jessica got in contact outside of the blog so we could share experiences ‘Know that you are not alone’ she wrote ‘although this has been a trial for your family, your blog has been a blessing to mine’.  Those words touched me and reinforced that this is a worthwhile experience – knowing that I am helping to comfort others going through a similar experience.  Jessica has shared her updates with me about her Dad’s stroke recovery and I have laughed and cried at some of the moments she has shared that are all too similar to the life I currently find myself leading.  It meant a lot for someone to understand and empathise with the rollercoaster of emotions that caring for a stroke survivor brings.

This demonstrates that all around the world families are suffering from the effects of stroke.  Awareness and research must be supported – which brings me to my final point and I hope you are still with me and that your hot drink has not gone cold! 

Two of Dad’s nieces – Katie and Helen will be running the BUPA Great Birmingham Run on the 20^th October to help raise money for Stroke Awareness and Research.  Celebrity supporters of the Stroke Association who all have first hand experiences of stroke in their lives include Karen Brady, Adrian Chiles, Dame Vera Lynn and Jools Oliver to name but a few.  It affects so many people from all walks of life – so please help us to raise money for the prevention and treatments of stroke.  The research will aid survivors to make the best recovery they can to improve their quality of life so that no other family has to go through the experiences that we have faced and the challenges we have yet to face.  Please support us by donating on their Just Giving Page:

http://www.justgiving.com/KatieAndHelenBirminghamHalfMarathon

I will be so proud of them doing this for my Dad, their Uncle, and I will certainly be cheering them on as they cross the finishing line after their 13^th mile.

Thank you all so much for your time and for your support and for the strength you give my family and me to keep going.

Love you Dad x

Update 4-9-13: We've just heard Dad's been successful in getting social funding for the next 12 weeks at JC. Fantastic news, the pressures off and we can get everything in place for Dad to come home xxx

Singing to his golfing friends! 14-8-2013

Regular visitors - Dad with his brother
and sister-in-law. 19-8-2013

In the comfort of his own home. 24-8-2013

Dinner with Mum and Dad at home. 25-8-2013

Trainspotting!  We take Dad outside to get some
 fresh air as often as possible. 31/8/2013

Here we go again...hospital round four.

It saddens me to tell you that as I write this month's blog, Dad has been readmitted back in to hospital as from Monday evening.  We have been advised that he will be staying in hospital until at least Tuesday next week.

A lot of the goings on I was planning to tell you about have therefore been excluded, otherwise this entry would go on forever!

So here we go...Dad has yet another water infection. Mum and I spotted the signs around the start of the month and Dad promptly started a course of antibiotics. A sample was tested last week after he finished the course and the infection was still there. The only way to get rid of the unwanted infection was for antibiotics to be administered through an intravenous method in hospital - which is where Dad is now...but more about that later.

The month started quite positively when we took Dad for his 12 month review with the Stroke Consultant - two months late due to the May appointment being cancelled by the NHS. Anyway...Dad was quite alert on the day. We made sure we allowed ourselves plenty of time to prepare Dad for the visit and we kept reminding him where we were going and who to see. Dad was very engaged and showed a definite respect for the Consultant, listening to what he had to say and responding quite well to the simple questions he was asked.

Once again the Consultant, who we saw in August last year, referred to Dad as a miracle and was extremely impressed with the progress he has made. He informed us that 50% of people who suffer a bilateral stroke, such as the one Dad endured, die within the first week...the other 50% die in the first month. This proves how fit and healthy Dad was and still is according to all the tests and observations that were carried out on his organs. 'If only Alan had come to see me two years earlier I could have lasered the clots out of his heart and he could have been back at work within three hours like Tony Blair'. A lesson to us all...if you think you don't feel right, go and see your GP as the consequences of not being checked could prove fatal as we have found out.

As we know, Dads frontal lobe which controls memory and behaviour in the brain, was damaged by the blood clots. We were told that it is unlikely new connections in the brain will be made, but that we should never give up hope. The other parts of the brain that were damaged are finding new pathways and connections which is why Dad is able to process information and respond appropriately, follow simple instructions and can read, speak and write. Obviously he can't do any of these things as well as he could before the stroke and the fact he can't retain any information makes it even more difficult. The Consultant informed us that positivity creates new brain cells and negativity kills them.  He said that the worst thing to happen would be for Dad to get in to a state of depression after the positive progress he has made...another lesson for us all - 'positivity'.

We were praised as a family for the daily input and efforts we have invested in to Dads rehabilitation, which gives us the determination to keep going and the belief that Dad will continue to benefit from it.

During the 45 minute appointment, the Consultant also checked Dads left arm sending us for an x-ray straight after as he believes Dad is suffering from a frozen shoulder. His left shoulder is very tight and the muscle tone painful, I was surprised how far Dad actually allowed him to stretch his arm - such was the respect he showed the Consultant. We are still waiting for the results of the x-ray. Following the appointment, he contacted the consultant who administers the botox injections to recommend further botox be considered. Dads GP also wrote to the botox consultant chasing the three month review that should have been at the start of the month and I have been phoning his secretary regularly...but still we have not heard.

The appointment ended with Dad reciting some A E Housman to the Consultant and saying to Mum 'Wend - put him on the Christmas card list'. The Consultant was most impressed that Dad knew that at Christmas you send cards! He wrote in his report that Dad had been 'very pleasant'.

Also at the start of the month Mum celebrated her birthday - Dad wrote in her card 'Happy Birthday Sweetheart' a name he has always called her! The day coincided with a musical event at the care home. I went along this time to support Mum and I've got to say it was quite emotional seeing Dad interact with the music and come alive. He sang with such emotion and intensity it was good to see him so happy. I lent him my hand so he could clap in time to the music - his right hand against mine.

Dad attended his dental appointment at hospital this month. It proved more successful than we thought it would be. The dentist and nurses were very good at putting Dad at ease. After tidying up the filling that had come away, the dentist decided he didn't want to put Dad through the trauma of being sedated whilst work that wasn't a necessity was carried out. What a relief!

So back to Dad being in hospital...its been pretty stressful for us all but especially for Mum. After 17 hours of waiting in the Emergency Assessment Unit Dad finally made it onto a ward at midday on Tuesday. Mum and Dads brother were with him till the early hours and I took over Tuesday morning. 

Disappointingly there were no beds available on the stroke rehabilitation ward, so Dad has been placed on a ward for the elderly. No handover was given, which is why I ensured I was with Dad to explain and advise the nurses about Dads condition. But straight away the first nurse that came to see him started bending his left leg...well you can imagine the reaction from Dad - or maybe you can't if you haven't seen Dad post stroke - but he certainly let rip at her about the pain and for not being careful!

Unfortunately it is Mum that has been with Dad on the three or four occasions when the Doctors have tried to insert the cannula. Dad has sworn so loudly effing and blinding at the top of his lungs and spitting at the Doctor.  He doesn't understand what is going on - even though we explain slowly, Dad can not retain the information.  After trying to insert the cannula in both hands on different occasions, the decision was made to anesthetise Dad's foot and insert it in to his ankle.  Again it was Mum who witnessed the nurses receiving a few right hooks from Dad when they were changing him - as the swearing and shouting started and three more nurses ran in behind the curtains to help, Mum stood there alone mortified.  Dad has no recollection of the shouting or abuse - yet we, especially Mum, are left distressed by it all. 

Whether there is added confusion caused to Dad by the UTI or whether this is how he is due to the brain damage from the stroke, I don't have the answer - but this reaction might be why the botox consultant no longer wants to help... This is a completely different side to the 'very pleasant Mr Skett' the Stroke Consultant referred to in his report at the start of the month!  

Although Mum has borne the brunt of Dad's anger, I rather unfairly have experienced some calmer visits this week.  To prevent Dad from going backwards in his rehabilitation, we have arranged with the ward to attend at meal times to ensure Dad continues to eat as well as he has been recently. With Dad having laid in bed for 48 hours, we had concerns that his leg would begin to seize up, so I have attempted to do his leg stretches and transfer him in to his wheelchair to take him for some fresh air. A pleasant surprise was to bump in to the Sister that looked after Dad for five weeks when he had his stroke in May last year. I explained to Dad who she was and he gave her a big welcoming smile as he asked her how she was as though he remembered her and she gave him a big hug and a kiss! Of course, a few moments later Dad had no memory of seeing her.

Before Dad went back in to hospital, reports were being written about discharging Dad back home. That is still our goal, as how can we let my Dad spend the rest of his life in a care home, especially as apart from the damage the stroke has caused, his body appears to be so fit and healthy? There are so many things that will need to be done and put in place beforehand and we will start to work through this list shortly - although we have been informed that all we need to get Dad home is a bed downstairs!!

As I've said before, if things go well, it is Mum that will become Dads full time carer and the biggest impact will be on her. I think after this last hospital episode she is exhausted and probably having doubts about coping with Dad at home. But we will be there to support her as I'm sure you will too in any way that you can.

As always, thanks for the read - to my supporters on Facebook that sent messages in my time of need...they meant the world thank you. Let's see if we can have a month of positivity in August?! Around the same place, same time - I'll see you next month.

Love you Dad x

Mum and Dad on Mum's Birthday 5/7/13

Mum and Dad enjoying the weather 10/7/13

In Dan & Sue's garden - Dad chilling with the Ladies 21/7/13

Getting Dad out of his hospital bed 31/7/13