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