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

Positives & Setbacks

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 Love you Dad x

Oli with his Pop Pops 16/6/13

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

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

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

One year on...

On the 10th May it was one year since Dad had a stroke and our lives changed forever, although we didn't know then to what extent.  We tried to treat the day as any other to keep the emotions at bay. Thank you to all those who got in touch to let us know you were thinking of us x.

Thank you also for the support we received following the article published on the 1st May in the Birmingham Mail.  The Stroke Association advised they too had 'lots of people getting in touch as a result of the article' and that it 'had a really big impact'.

So what can I tell you about Dad's progress through out the month of May? Well...it was rather a good month!  I am hesitant to write with such positivity knowing how quickly things can change, but telling you how it is and compared to the last 12 months - it's been...well, it's been 'OK'.

I am pleased to report that Dad's appetite has continued to increase and he is still enjoying his food.  Most days he eats three meals a day, which looking back to where he was only a couple of months ago is practically a 100% improvement.  He continues to eat between meals and sip cups of tea, the only downside is his sweet tooth as he enjoys biscuits, cakes and chocolate - but in moderation, this is good.  Dad still struggles a little with swallowing, usually if eating quickly and he does experience coughing fits when food becomes stuck in his throat, the nurses have come rushing a couple of times as he has started choking. The dietician has been back to review Dad's weight and eating habits and such is the improvement; she has reduced his nightly PEG feed to 600 ml.  A big step forward - especially as the food is feeding his brain and making him more engaged.

Another step forward is that we have finally got Dad's leg brace remoulded so that it fits him and he can wear it without causing him pain and distress.  It's only been five months since Dad first received it...but it finally fits and is now doing what it was designed for; supporting Dad's leg and foot and aiding his walking. 

A call from Dad's GP instructing the NHS to get us an appointment sooner than the June date they sent us is what it took to be seen by a private company who were brilliant.  I don't usually name names, but Dudley Surgical Appliances gave us a fantastic service.  They dealt with Dad in an excellent manner, engaging him and supporting his left leg and foot as new measurements were taken.  They told us they could understand why Dad had been shouting and swearing when trying to fit the brace, as it was too narrowly curved to fit the fatter part of his ankle - they too said they would have been shouting and swearing had we attempted to do it to them.  How frustrating that the brace was made incorrectly the first time round and we have been forcing Dad's foot in to it and causing him additional, unnecessary pain.

The day we went to collect the remould, there was no shouting, no bad language, just Dad telling us to be careful - and we were.  He was able to take steps as soon as he was wearing it...and since then we have been making sure Dad wears it daily and over the last week or so, he has walked several times each day.  Up until now, it has been the physiotherapist who has supported Dad when walking, so this is new to us and we are giving Dad the confidence to trust us as we have been assisting him.  At the moment Dad is walking only short distances with us; from his wheelchair and back to his chair and walking to the table to eat his evening meal.  The medication he started taking last month for the relief of neuropathic pain also appears to be making a big difference as we are able to touch and move Dad's foot without him shouting in pain.  Dad always needs support from someone on his left side when standing and walking and he does get tired (by his sixth walk of the day!), but he wants to do it, and asks 'shall I walk?' which is excellent positivity.  It's not the prettiest of walks but Dad is only just getting back in to the routine of doing it.

The way he gets in and out of my car now is fantastic - it's all down to practice, practice, practice.  Dad even put his own seat belt on without prompting this month and Mum's ended up telling him to 'slow down' as he starts swinging his legs out of the car before I've even assembled the wheelchair! Routine definitely helps.

We have discovered for ourselves that it still takes two to take Dad to the commode, no problems with getting Dad on to the commode, but afterwards when Dad needs cleaning, he still requires someone to stand at his left side for support whilst the other person cleans and pulls his pad, pants and trousers up.  Which goes to show that Mum would not be able to cope on her own looking after Dad.  But this is something we will continue to work on with Dad throughout his rehabilitation. 

Dad has been taking his medication without much trouble this month.  He usually asks what the tablet or medicine is for before taking them - which is only sensible for someone to ask who is suffering from short term memory loss.  Would you take a tablet from someone you didn't recognise if you didn't know what it was for?!  Once explained Dad takes it no messing.  Even the blood sugar tests and insulin injections Dad has accepted with little protest this month.  One of the nurses at the care home even reported to us that Dad had said to her 'thank you for looking after me' - I think she nearly fainted!

Unfortunately Dad had a filling that came out of his mouth this month.  He said to Mum whilst he was eating 'I think my tooth's fallen out' sure enough it was a filling.  Dad is now waiting for a visit from the dentist to the care home in June.  I really don't know how that one will work out with Dad keeping his mouth open and not biting the dentist's fingers off...one to write about next month I expect.

As a family, we have had two meetings to attend in May to review Dad's health; one with his GP and one with the psychiatrist. They both supported us in the belief that Dad would benefit from further rehabilitation - but the decision lies with the PCT who have still not got back to us following our meeting in April. Another one I'm sure I will be writing about next month.

We have been able to take Dad home and back to Dan and Sue's for day visits on several occasions this month, making use of the two sunny bank holiday weekends we had at the start and end of May.  As a family it felt good to have Dad with us eating alfresco, watching the grandchildren playing in the garden and generally enjoying the sunshine.  Who'd have thought this would have been possible even a few months ago? Upon returning to the care home Dad doesn't remember where he's been that day - but in the moment he knows he's happy and that he's surrounded by love.

We took Dad out in the car to visit a friend who lives nearby, what a shock he had when we pulled up at the bottom of his drive and he saw Dad waving at him!  Sitting in the car, without sight of his wheelchair and disability and the way he was engaging and chatting in the moment, Dad seemed the best he'd been for a very long time.  He could almost have been mistaken for having nothing wrong with him.

The care home put on two events in May with singers performing - it's an excellent way to get all residents, staff and visitors involved as most of us respond to music...and as you know, Dad certainly does.  The carers tell us 'Give Al a name and he'll always find a song to sing'! The first event was for Eurovision where Dad knew the words to all the songs, carrying out all the actions with his right arm and conducting the singers as he sang!  The second was a celebration of the care home's first anniversary and again Dad thoroughly enjoyed joining in, becoming a little emotional at times.  It is all very overwhelming for Mum to see Dad, as he is now, enjoying himself in the music. Although before his stroke Dad loved his music, he would never have been one to take the lime light and sing out loud in public.  If any friends or family would like to see the next musical performance at the care home, I know Mum would welcome the support, so please get in touch to find out dates, as Dan and I can't always get time off work.

Dad's recollection of song lyrics is amazing and this also applies to poetry.  An 82 year old gentleman who visits his niece in the care home sometimes takes time out to sit with Dad to recite and read poetry with him.  Dad really enjoys it and the visitor is often left astounded when Dad joins in the recitals from memory - one of his favourites being A E Houseman.

During the month we have still experienced the occasional blip when Mum has arrived at the care home to find Dad soaking wet in his chair and in desperate need of changing, when the response to the 'nurse call' button for Dad to be changed has sometimes been excessive. And there have still been a few outbursts of bad language as a result of a lack of care around Dad's arm and leg.  He currently has an open wound on his left shin which is being monitored - I hope it will heal soon as it has already been over a week.  On the whole though, things have improved. Dad does seem a lot calmer and gentler - much more like my Dad of old.  We have found he is more questioning of things around him and has more to say for himself, although as stated he was never one for being loud or being centre of attention.  Dad even told us the other day that Charles Darwin was a scientist when we were pondering what in fact he was famous for!

I would like to believe that we are on the up and that Dad is going to make further positive progress.  I am so proud of his new determination and want for walking again and the love that he is pouring out in abundance to his family for 'loving and supporting me' he says.  I am, as I said at the start, mindful of how quickly things can change, but as many stroke survivors state, improvement after stroke is constant and can be made year on year, provided the risks of another stroke are reduced.

Thank you for reading, for the support that is still very much needed and appreciated and especially for believing.

Love you Dad x

Dad eating alfresco with his Family 26/5/13

Oli making his Pop-Pops laugh
at the care home!

'My hairband suits Pop-Pops doesn't it?'
asks Ruby!

Dad standing tall and walking proudly.

Dad relaxing in his own garden 2/6/2013

Dad makes the news...

April was yet another busy month for hospital appointments and progress in Dad's rehabilitation.

We've now got Dad's travelling down to a fine art through trial and error.  We know he travels much better if:

1. He sits in the front passenger seat of a car,
2. He doesn't take the anti sickness medication which knocks him out for the entire day,
3. We wrap him up warm to get in and out of the car, but keep the car cool inside so he doesn't over heat.

This has made our journeys and visits to appointments and home visits a much more pleasant experience - not just for Dad but for all of us.  Dad even put his hand up and thanked a driver for letting me out last week!

The first appointment of the month was to see the Vascular Consultant.  She confirmed Dad has a healthy left leg with strong pulses and suggested there were no vascular concerns, which was excellent news.  She advised that the pain appeared to be neurological.

A disappointing visit  to a Consultant followed the same week for Dad's botox appointment.  Knowing full well how Dad reacted to the injections in October, the appointment had been rearranged to attend on an open ward on the Acute Stroke Unit. Dad was calm, co-operative and engaged...until the Consultant began to inject the needles in to his arm. He shouted and cursed at the Consultant very loudly.  Not great for anyone to hear - but in an Acute Stroke Unit surrounded by critically ill people - it wasn't good, goodness knows why the appointment was there and not in the clinic we had attended three weeks before. The Consultant only administered one injection in to Dad's bicep and one in to his shoulder.  Very disappointing, as last time Dad had two injections in each and it made a significant difference - the pain eased, his arm could be stretched out to enable Dad to wash under his arm pit improving his hygiene and it made it easier for dressing Dad.  Sadly with only one injection in each muscle, these goals have not been achieved this time.  We were hoping for Dad to have injections in to his hamstring to aid his walking rehabilitation too - but the Consultant would not entertain doing it.  I pleaded with him to reconsider:

'No, it is too painful' he said.  

'When?' I asked 'When is it too painful?' 

'When the injections are administered.' 

'But Dad lives in the moment' I tried to reason 'Dad doesn't even remember cursing or having the injections.'

I asked Dad if he remembered having the injections and his response was 'No - what injections?'

It is so frustrating, knowing that the botox injections could have such a big impact on the quality to Dad's life, but not being able to get them.  What hope do we have when the Consultant won't support us??  If anyone reading knows of any private botox consultants in the West Midlands region, please get in touch, I have already tried to do some research.  But then you ask - why should we have to pay privately when Dad has worked all his life, paid his taxes and his national insurance...grrrrr. Dad is now wearing his left arm splint again with the aim to keep it straight and prevent his arm and hand from bending and clubbing. 

Following the vascular appointment, Dad has been prescribed 'Gabapentin' a medicine to ease the pain caused by the damage to his nerves, something that the Physiotherapist has been suggesting for quite some time. I can not imagine the pain he experiences, as the slightest knock to his left leg or arm can set Dad off in to a complete frenzy -  'Don't tell me not to shout you can't feel this pain.' he shouts at us. But he always apologises after for shouting.  

Dad's physical rehabilitation had been put on hold whilst he waited to see both the Vascular and Botox Consultant, so with these out of the way, he has been making attempts at walking again across the room and back.  The pain from the tightness of the splint does cause him to shout out in pain, but we have been told we have to wait another three weeks for an appointment to get his splint re-moulded - as I said in last months blog, it feels as though we are continuously held up by all this waiting.  

Good news this month is that twice Dad has taken some steps with me and Mum. After asking to go to the toilet, Dad has asked if he can walk.  Come on then let's have a go, I've said passing him his quad stick.  With me supporting his left side and helping him place his left foot and Mum by his right side or behind with the wheelchair, Dad has been able to attempt to walk with us - only a few steps, but this is a massive achievement.  It's hard work - but if we could keep this up it will be really good progress.

Later in the month came a visit to the Urology Department - this time for Dad to have a camera inserted in to his bladder.  After the injections episode - I can't say I was looking forward to this one.  The two nurses who dealt with Dad were brilliant and so understanding.  Once on the bed, they kept Dad dignified and covered.  'Oi get off - your hands are cold' Dad shouted 'Yes' said the second nurse 'But she's ever so good at making pastry!'....Dad laughed.  Thankfully there were no 'F's' and 'B's' at this appointment, but when the camera was inserted he did look at me and shout 'Ay she's got my b****cks - tell her she's squeezing my b****cks.' Oh dear.

A discussion with the Doctor followed - a lovely old school caring Doctor.  He confirmed that the reports proved all the UTI's Dad had suffered were in deed strong infections.  He also gave us some positive news that Dad had got a healthy bladder but with some debris lurking. After ruling out Dad catheterising himself or the nurses doing it for him, he suggested Dad be put on one antibiotic a day to keep the UTI's at bay.  I explained Dad had been on this very medication since January - not according to the medical notes he advised.   So it transpires that since the start of April, through miscommunication, Dad had not been on medication to prevent the risk of a UTI reoccurring - this has now been rectified.

This month, amazingly, Dad's appetite has come back out of nowhere. I can't tell you how good it is to see him eating again and actually enjoying his food - fish, broccoli, sausages, chips and crisps, chocolate biscuits, fruit - it is such a relief. The dietitian came out to visit Dad and was very impressed with his eating. She checked his swallowing of bread and butter, something he hasn't eaten for nearly a year since he had his stroke, and dry biscuits.  Dad was able to swallow them well and she gave her approval for Dad to have these incorporated in to his diet.

And so - for the first time since Dad has been at JC he has eaten breakfast!! Several members of staff were excited to tell Mum when she arrived that day how they had stood looking on in amazement as Dad happily ate his egg sandwichs for breakfast! 

Because he is eating again, we have also found Dad has become more engaging....and thinking all these things through, the light bulb suddenly clicked on in my brain...Dad's appetite coming back coincided exactly with the same time that the antibiotic was stopped.  Surely the medication 'nitrofurantion' didn't suit him, as he is now eating, he is more alert and engaging and, although still very protective over the left side of his body - woe betide if you accidently hit it, he is less angry and aggressive.  Dad has been put on to a new daily antibiotic so we will continue to monitor his appetite and engagement to see if he starts to change again.

Hopefully you will have all rushed out to buy your copy's of the Birmingham Mail on 1st May to see Dad making the headlines...well the health pages?  To coincide with Stroke Awareness month and the new publications 'Feeling Overwhelmed - the Emotional Impact of Stroke' and 'You're not alone', I was interviewed to discuss the emotional difficulties in dealing with a loved one who has suffered from a stroke.  The point is that it is not just the physical side that a stroke effects, but also the mental side - the side that people can't see, and the emotional impact this has on the family and the stroke survivor themself.  The online link is attached below for those that didn't get chance to read it:

Dad's Article in the Birmingham Mail

I understand a couple of Dad's friends have been disappointed by a lack of engagement from him when visiting this month. Dad gets up on a normal day anytime between 9.30 am and 11.30 am so a visit after then is probably best. Restricted meal times are between 1.00 pm and 2.00 pm and 5.00 pm and 6.00 pm.  If in doubt give Mum a call to plan a visit.  But it's always a good idea to tell Dad who you are and how he knows you - and don't expect him to remember throughout your visit, so be prepared to keep reminding him!

Just one thing to add this month - we met with the PCT again.  They had come out to review Dad and to collate evidence to make a decision as to whether they will continue funding him.  It was explained to us that the only reason Dad was being funded was to rehabilitate?  This confuses me as to why we have had to have four Continuing Health Care Assessments carried out when rehabilitation is not even a care domain that is assessed as a criteria for funding?  The PCT will be requesting the 'professional's opinions' as to whether Dad has anymore potential, but the bottom line is they believe Dad has plateaued.  We strongly don't believe this as Dad has started eating and engaging again this month and he has taken steps without his physiotherapist being there.  It's frustrating why no attempts were made to question why Dad's appetite had gone in an instant for the last three months - but perhaps as Dad has been put in to a box labelled 'Vascular Dementia',  the finger of blame can always be pointed to that? A meeting with Dad's GP at the care home follows for us in May.

Anyway - let's end on a positive...Dad is allowing the care staff to shower him now, something that had rarely happened over the last few months and he continues to enjoy his singing.  As mentioned in the article, a fellow resident at JC plays his guitar and Dad happily sings along - providing the songs are not too emotional, because the tears do still come. Mum has been able to take Dad out on a few walks in the sun, just the two of them.  (I shouldn't mention that she's managed to do her back in from pushing Dad in the wheelchair though...).  Dad remains interested in all sports and has been watching the snooker with interest - advising when there's been a good shot or telling us to 'watch this one'. Dad's also enjoyed watching Dad's Army - it's been good to see him laughing!

We know everyone has such busy lives to live, so to all our wonderful family and friends who take time out to visit Dad, thank you so much for the support you give us - it is appreciated by us all and we value you giving up your precious time. And to those that keep in touch, also a big thank you. 

Thanks for reading the update and for remaining interested in Dad's progress.  

Love you Dad x

Dad enjoying the chocolates that Malthouse
kindly sent to Mum and Dad.

Ruby giving her Pop Pops a
well deserved cuddle.

Dad laughing at Dad's Army - good to see!!

A Highly Complex Case

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for the read and thanks for caring.

Love you Dad x

An early March walk before the snow
came and settled.

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

Happy 69th Birthday Pop-Pops!

Mum and Dad - Good Friday 2013.