To recap, Dad spent five weeks in hospital followed by a further twelve weeks in an NHS 'step down'. He has now moved in to 'Phase Three' of his recovery - a care home for adults with physical disabilities, acquired brain injuries and degenerative neurological disorders, which is currently being funded by ourselves. We are in the process of appealing the PCT's decision not to fund Dad and have been sent an appointment to meet with them in October to review their decision.
Having not updated the blog for a couple of weeks, there's probably quite a lot to keep you informed of with the ups and downs we are all experiencing on this journey of Dad's recovery. I will start by thanking the family and friends who visited Dad during the difficult two weeks when our support network was somewhat reduced due to summer holidays. I think it made a pleasant surprise for Dad to see and remember new faces - I know how much Mum appreciates and values the support, as do Dan and I. As always - I think the whole situation would be even more challenging without the constant love and support from those around us, and those that come regularly to see Dad and support us - as a family we are truly blessed.
Positives...well, we felt Dad had a real surge of progress over the last couple of weeks - he seemed to be engaging more and in the presence of visitors - more in the 'here and now'. He has been asking more questions in context and his comments have been relevant to the conversation - not ad hoc and off the wall, which is encouraging. Of course, this is usually after Mum has arrived at 2 pm and brought Dad back in to the real world. When Dad is left alone it allows his mind to wonder, telling us when we arrive that he has 'been to the seaside that morning' or he has 'seen his Mum and Dad' - both of who are no longer with us. Dad has also continued to serenade his fellow in-patients, including Hilda who I became particularly fond of in the room opposite Dad - her face lit up when Dad sang!
We've been doing activities with Dad to keep him interacted and stimulated. We put a small basketball net on the wall in Dad's room and took it in turn to 'shoot some hoops'! It was good to see Dad's competitive streak was still there and we had fun doing something different - although when Dad decided to 'throw' the ball he did do it rather hard!! Len and Dave also visited Dad after a round of golf last Saturday. It was good to hear Dad involved with the golf banter and hear his words of wisdom - which I miss as he would always make me feel better about a situation with his positivity. He told Len he 'shouldn't gloat about his victory and take it in his stride...let his game to the talking'. We took Dad outside and Dave got a couple of clubs and balls out for Dad to use. Dad was putting one handed - aiming for the leg of the bench opposite, which he successfully hit on several occasions. He was so focused - it was good to see that he was engrossed in the activity - and it certainly took his mind off 'needing the toilet' and his 'bum being numb'.
More positives...Dad's braces and splints have arrived - though it may have been a good idea to have instructed the carers on how to fit them and when they should be worn...but I won't go there, it'll only take away my positive vibe! Dad now has a support for his left arm to rest in which keeps his fingers out straight, this stays in place with velcro straps. He has a brace to support his ankle and keep his foot flat which is to be worn during the day with trainers and a chunky boot support to be worn at night, again to support Dads ankle and prevent his foot from turning - it doesn't look the comfiest thing to wear at night I have to say.
We got Dad some trainers to wear with his day time brace -velcro fastening for ease and speed of removing them - they are bobby dazzlers! They really seem to have spurred Dad on. After wearing slippers or no footwear at all for 17 weeks, the trainers must have felt like a massive support to Dad - he even told the carers when they were removing them after wearing them for the first time that 'the Doctor says I have to keep them on', his feet must have felt very light when they were removed. The braces and splint appear to be very encouraging in Dad's progress - perhaps it could have been done a little sooner though....?
After explaining to Dad earlier in the week about the plan to move him for the next phase of his recovery, he had a couple of emotional days. He couldn't remember everything that had been said due to his poor memory, but he knew a change was coming. This may have been playing on Dad's mind to make him emotional and start asking the carers if 'Wendy was ever going to come and visit again?'. One afternoon this week Mum walked in to see Dad calling one of the patients 'batman' and telling other patients they were all laundering his money and trying to take it away from him - we wondered if he had picked up from discussions around him the fact that the PCT won't fund Dad's care and that it's his savings that will be used? I don't know, but again this demonstrates when Dad is left on his own without one to one interaction, his mind wonders. Dad clearly picks up on conversations around him and gets a feel for them, but can't remember the details. It wasn't great to hear the staff were just standing there watching whilst Dad was having his 'outburst'.
And so to yesterday - the big day when Dad put NG behind him and moved to pastures new. There were tears shed - both Mum and Dad were emotional as were the carers! Dad had written a card to thank the staff for 'taking care of me'. Before leaving, it was a surprise to see the physio and an assistant take Dad to the toilet (yes THE toilet) to have a wee. Wonderful - absolutely fantastic, really really positive - but why do it an hour before Dad's due to leave the place....why not in the previous weeks?? Apparently they'd taken Dad to the toilet on Wednesday too! It seems a bit late in the day to me - but I am no expert. Before Dad left, they also took the cushion away that Dad was sitting on in his wheelchair. I offered to drop it back the next day, but they insisted they wanted it, and low and behold, without much persuasion or many attempts - they got Dad to stand out of his chair so they could take the cushion away! I must say it was brilliant to see Dad standing - he was able to eyeball me, in fact it was bloody amazing to see Dad standing in front of me, upright and tall - I wanted to give him a massive big hug, but I think I would have taken us both down flat on the floor! Dad complained after about 30 seconds that he felt his ankle was dropping off and needed to sit down.
And so on to the move. Dad travelled sitting in his wheelchair and not a stretcher which was excellent, but the motions of the mini bus ride made him feel sick. Luckily Mum was on hand with a spare plastic laundry bag...unfortunately it had holes in the bottom of it. Dad arrived at the care home looking quite pale and confused as to what was going on. This is a change - a change in the right direction we hope, but it will take some getting used to...in particular the other patients. Although at the moment there are only ten patients, the majority have severe brain damage. Having not been used to being around people suffering from brain damage, it was a new experience and a little bit traumatising for us all. Some of the patients scream out loudly unexpectedly and start making loud, sometimes piercing noises - apparently this is when they are happy or excitable...however, I'm not sure Dad saw it this way. Whilst sitting with Dad helping him eat his dinner in the dining room, the lady at the table opposite kept staring at him. Dad said 'What's she looking at me for? She wants my food she does?' When she started making loud piercing noises, it made us jump out of our skin and admittedly we did feel a little uncomfortable, I think the whole situation overwhelmed Mum - and Dad even asked 'How am I meant to sleep tonight with all this going on?' and 'They're all bloody mad round here - I can't stay here'. I tried to explain to Dad that he couldn't walk so he had come to learn to walk again and that similarly the lady couldn't speak and she had come to learn how to talk and communicate again.
One more anecdote before I end this blog...upon Dad arriving in sick soiled clothes, the carers promptly came to the room to change him in to fresh ones. Once in the room, we thought the carers were taking an incredibly long time to change Dad compared to the timings we had become used to, but obviously were not familiar with their way of doing things so thought maybe they take longer...a lot longer? After about 15-20 minutes, one of the carers came out and it was then we mentioned that Dad is transferred from chair to bed and vice versa using a hoist. They had asked Dad if he could walk and Dad had said 'yes!' He told them 'I walk everywhere'. They had then spent 15 minutes waiting for Dad to stand himself up and walk to the bed - he actually had made it on to the bed (?) but was unable to to swing his legs round to lie back due to his left side paralysis. You have to laugh...if you don't you'd cry...and probably never stop. The fact they had got Dad to transfer from the chair to the bed is progress within Dad's first few hours here, as NG couldn't do it in 12 weeks...!?! It is frustrating that mixed messages have occurred yet again in the transfer from one place to another - including the information passed on from NG not being up to date. But it will take time and we all have to get used to the new environment - Dad needs a routine and the carers, who on first impression are coming across as friendly and 'caring', need to get used to Dad.
So Dad's journey continues...and we will continue with the ups and downs - hopefully I shall have many more ups to report than downs. I will again give a plea to all to continue visiting Dad - he needs interaction with the real world more than ever. Although the physio is very encouraging (telling me yesterday she will come in over this weekend to assess Dad) and his mobility and motor functions will hopefully improve, it can't be at the consequence of Dad's mental and cognitive behaviour suffering due to not having daily conversations and interaction with family and friends. Visiting times are no longer restricted and visitors are welcome any time of the day or night. However, we have told Mum that it is no longer sustainable to visit Dad every day and she needs to take some time off herself. I know if she could, she would have a bed next to Dad's and be with him every minute of the day - but it is taking it's toll and she is tired. The thought of Mum having to get two buses back home during the dark evenings is not a good one.
Our aim now is to get Dad through these next few months with the ultimate goals to get Dad 'moving' and to get him home.
As always - thank you for your support and for your time in reading this rather long update...I'll endeavor to get some photos on here soon - perhaps of Dad standing in his bobby dazzlers, that would be a good one :-)
I know it's a really tough time... but I love you Dad x
Update: 9/9/2012 Dad is settling in to the new home quite well, although he is still alarmed by the piercing screams and noises that come from one of the other patients. Dad has been using the commode when possible and has even had a shower today (we only know of Dad having had one shower in the twelve weeks he was at NG as they gave him bed baths). True to her word, the physio came to see Dad today to carry out a further assessment on him. She encouraged both Mum and I to be part of the session. Dad was able to stand three times leaning on the walking bars for support, and transfer from wheelchair to bed and vice versa by pushing himself up and sliding across - all captured on my mobile, it took a lot of effort, but Dad achieved it. The physios aim is to move Dad on from being transferred by the hoist - and she will be back to work with Dad again tomorrow. Dad demonstrated yet again today why he deserves the title of being a 'legend' by working hard and showing his determination. So proud.
Love you Dad x
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| 9/9/12 Oli & Ruby with their Pop Pops |
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| 9/9/12 Dad's first physio session at JC |
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