More ups and downs...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love you Dad x

Dad's back at the care home

In answer to the question that everyone's been asking - 'Is Alan out of hospital yet...?'....yes he is, Dad's back at the care home.

In answer to the next question - 'No, unfortunately he's not doing that great'.

So what's been going on.  I last wrote stating that after a couple of days on antibiotics Dad had started to show signs of improvement, but then worryingly started becoming aggressive again and not 'with it' at all.  We were right to raise our concerns with the nurses, as last Monday it was confirmed that Dad still had the UTI.  Dad began a course of stronger antibiotics last Monday, they finished on Saturday afternoon.  

We were informed on the Monday that the Consultant was going ahead with Dad's botox injections the next day.  Although the appointment was cancelled at very short notice, it went ahead on the Wednesday.

Mum took herself out in to the corridor whilst I stayed behind the curtains holding Dad's hand to give him reassurance and support. The Consultant, as well as three others from his team and a physio, gathered in the small space around Dad's bed and proceeded to inject the botox in to his left shoulder.  Those that have visited Dad may well have an appreciation of his fear of needles, having experienced his reaction to the small insulin needle that is injected daily in to his stomach.  Even prior to the stroke, if Dad needed a filling in a tooth, he would have it without the injection, such was his fear of needles.  So when he saw the length of the needle to be used to inject the botox he practically hit the roof...had I not have been holding his hand, he would probably have hit the Consultant and his team too. The language was again offensive and abusive - it wasn't an easy situation, but with the sounds of 'Bridge over troubled water' amoungst other calming songs playing on the iPhone...we got through it.  Five minutes later...Dad didn't remember anything about what we had all just experienced. 

The botox will not make Dad's arm work again, but it should ease the resistance and pain when we do the stretches in his left arm.  To date, the arm does seem to move with a little more ease, however Dad is still feeling the pain.  We were advised the botox will be at it's maximum potential after one month.  Dad has a further appointment on Monday 22nd October for the Consultant to consider botox to Dad's left leg - his physio is strongly pushing for it.

Later in the day we were advised Dad was deemed as 'medically fit' and both Mum and I were summoned, it felt like it, to meet with the discharge nurses.  It was held in the meeting room where five months ago the dreadful news was delivered to us that Dad would never walk again and would need help with every aspect of his life.  It was great to be back there again bringing back those memories...huh. Unfortunately the nurses we met had very little compassion and advised us that NG had confirmed they couldn't do anymore for Dad and he would therefore not be entitled to a place in 'step down'.  We were instructed that Dad had to go back to the care home 'today or tomorrow'.  We agreed Friday as we needed to have discussions with the care home before Dad went back.  We didn't find it helpful when the nurses criticised us for not raising our concerns with the care home before now.

On to Thursday, when we were informed by the PCT that they would be doing a reassessment of Dad that day for consideration of funding, following his return back to hospital.  Mum and Dad's sister sat through another emotional assessment where the severity of Dad's health was again scrutinised. The verdict - Dad had deteriorated.  Following on from this meeting, I picked up Mum who looked worn out and pale and took her to meet with staff at the care home, along with Dan to raise our concerns about Dad's care.  We needed to address how the fall had happened, what they had learned from it and what measures they were going to put in place to prevent it from happening again, along with a list of many other issues and concerns.  At the end of the two hour meeting - my poor Mum was mentally drained yet relieved.  We felt reassured about Dad returning there to continue his rehabilitation and that he would receive the right care.

And so on to Friday - after being told on the phone Dad was ready to be collected and transport was on it's way, I rushed Mum up to the hospital, only to spend the next four hours sitting around Dads bed waiting for it to arrive.  Dad moved back to the care home at 5.00 pm.  He looked pale, old, and completely exhausted by the time he got back there.

The physio turned up to try a session in the gym with Dad on Saturday afternoon.  First she had to get him motivated and out of bed.  Dad had been put back in to bed due to being so tired.  The gym session was nowhere near as successful as those photos that I'd posted on here previously.  As a result of the fall, Dad's confidence has gone, his left leg has been further damaged and he now has a tightness in the right side of his upper body.  Dad's language was awful, he was shouting and aggressive.  'No' he shouted when the physio encouraged Dad to stand 'I can't do it, I'm going to fall in to pieces' - and those are the words I can repeat.

Since Dad's been back at the care home he has been sleepy, uninterested and unengaging. He is still being aggressive, supposedly hitting several of the carers as they assist him, although there are times when he shows concern for their well being and kisses the hands of the female carers.  He does continue to shout and has a short temper.  Definitely not the Alan Skett we all know and love, not even Alan Skett post stroke.  It's hard.  The support from you all means the world to us, but spending time with Dad is hard. At the moment there are not that many rewarding moments - but in time I believe our commitment, love and persistence will pay off when he gets through this dark period.

We are still waiting for many of the reassurances from our meeting with the care home to be followed through. A week on we are still waiting for the chair they promised for Dad, he spends all day restricted to his wheelchair without any support for his upper back, neck and shoulders.  We are still waiting for the whiteboard to be put in Dad's room to help us communicate with him by leaving messages and information.  We have been advised we will not be getting our money back for the two weeks Dad spent in hospital...effectively money spent on an empty room as a result of Dad falling in their care.

Following discussions with the nurses at the care home about Dad's ongoing change in behaviour they agreed to monitor his urine. We have today been informed by the nurses that the UTI has still not gone.  More antibiotics then...even stronger ones maybe?  This might help to explain why Dad is still so different to who he was prior to moving to this care home when the UTI took effect.  Another clean sample is required to be sent to the laboratory for further tests.  We were informed that the local Doctor would be visiting on Tuesday to assess Dad's condition and to date still no visit has been made.  We also wanted the Doctor to review what could be done to help Dads sleeping pattern, currently the records show he is sleeping two to three hours a night.

And finally, the PCT contacted me today to inform me of their decision to agree to fund Dad at this care home for six weeks.  They will carry out a further assessment of Dad's health in four weeks time to assess any progress that has been made. Positive that we are getting help and support financially, but negative that Dad has clearly gone backwards in order to get some funding.  The PCT have concerns for Dad's behaviour, understandably, and his nutrition.  Since being back at the care home Dad has continued to eat very little breakfast - a few mouthfuls at best, on average a quarter of his lunchtime meals and with encouragement from his family, Mum most of the time, all of his evening meal.  Just the last few days Dad has even been feeding himself at meal times - we think he must be so hungry as he eats his evening meal very quickly.  Dads nutrients have also been increased again from 800ml to 1,000ml.

I hope this brings you up to date with all that has been going on with Dad's recovery.  I must add how surprised we were to hear about the fundraising event Dad's friends have organised to support him in his recovery.  A charity golf day is being held at the golf course where Dad is a member on Monday 22nd October.  If anybody would like to take part, please let me know and I will provide further information; amy.murray69@hotmail.co.uk.  It is humbling to know how highly thought of and well respected my Dad must be for this to take place - I am so proud to be his daughter.

As always - thank you for the read, the support, and the positive thoughts.  We will get Dad back on track...we just need to get rid of this horrible UTI.

Love you Dad x