On Wednesday we were informed that the nursing home we are interested in for the next phase of Dad's recovery were coming to carry out their assessment on Dad next week. Eventually it was confirmed that a PCT representative who sits on the weekly meetings at NG had instructed them to contact the care home.
From this information we guessed that the PCT had made their decision about Dad's funding needs. After waiting all day Tuesday and Wednesday and not receiving a call as I was told I would, I contacted the nurse at the PCT myself to get the information. She confirmed Dad had not been approved to receive funding. She said she'd marked Dad's cognitive score of 'severe' down to 'high' based on the clarification from NG that Dad is eating a substantial diet and his PEG feed is being reduced (this is surely down to Mum's perseverance with Dad's eating habits), and that he has not suffered from any 'altered states of consciousness'. The nurse confirmed Dad's behaviour score was also 'high'. We will have to continue to appeal, as there is surely no way that the £108 nursing contribution per week will cover the cost of Dad's future care needs....it would barely pay for one days care a week.
As well as speaking to the PCT, I also spent my morning speaking with Dad's social worker - who didn't tell me anything new, and Dad's physio. The positive the physio gave me was that after having two weeks off and coming back to assess Dad, he had not deteriated! She advised they were continuing to do stretches in bed with Dad and that he does them well, but he needs to focus more. She explained that when they go in to see Dad in the morning, more often than not he has his head under the sheets and he says he does not want to get up. His routine is to get up mid morning or before lunch - although this week he did get up at 9.30 one of the mornings. They are still trying with the 'stand turner' but due to the increase in tone in his left hip and knee when he stands - there is little contact with his left foot on the floor which prevents him from baring any weight on his left side. She explained the Stroke Community Rehab Physio would be coming out to assess Dad (they are the team who will continue Dad's physio when he is back home or in another nursing home that doesn't have their own physio) and also the Orthopedic Department from the hospital to reassess splints and braces for Dad.
The Stroke Community Rehabilitation Physio carried out her assessment with Dad's current physio. They worked together with Dad for an hour and explained to us after that Dad had been very responsive. The verdict was that Dad still has muscle in the top of his left arm and in his thumb which was positive. I have to say Dad's left thumb is noticeably much more flexible than his fingers on his left hand after their session. They have made the decision to take the 'gutter' off the left side of Dad's wheelchair as it is not suitable to rest Dad's arm in and it causes him more pain. They will write to follow up the Consultant's request for botox as they think this will assist with Dad's physio.
The man from the Orthopedic Dept also visited as discussed. He advised on what braces would be most suitable for Dad's needs and to help him make progress. He will order a new brace to support Dad's left ankle and foot - it should help in turning Dad's foot inwards so his foot is flatter to the floor and will allow him to weight bare. The brace is to be worn with sturdy trainers or shoes. He did say Dad's current ankle support 'had seen better days and had parts missing' and that it wasn't doing the job of supporting Dad's ankle and keeping his foot flat to the floor...great - he's only been wearing it 11+ weeks. Dad will also have a splint ordered for his left arm which should be 'comfortable to wear and help ease the pain'. With the botox as well - this all sounds very positive. However, sixteen weeks seems a long time to get to this stage....but what do I know...?
I played catch with Dad this week with a small soft rugby ball that a relative had kindly given him. I noticed that although he is quite strong on the right side of his body, he is unable to grip the ball to catch it - instead he bats the ball back with his palm or defends it. We have therefore been encouraging Dad to squeeze the ball to help improve his grip. He has also been complaining of pins and needles in the fingers of his right hand, so we hope this strengthening action might help.
Unfortunately we have been informed of two incidents this week where Dad has put his fist forward again towards the carers. This is happening when the carers are either getting Dad out of bed or putting him back in. Dad is still being transferred by the hoist which doesn't look at all comfortable, and we hear him shout out in pain when using it. On the first occasion Dad's 'jab' was blocked before it made contact with a carers face - and on the second, it caught a carers arm. We have also been informed that Dad has been using offensive and abusive language during the hoist transfers.
The only thing we can think that has changed this week to make Dad more frustrated is that he has been taken off anti-depressants at the request of the psychiatrist - remember he said Dad is 'emotional' not 'depressed'. But if not having the tablets is making Dad more emotional again i.e. becoming upset when he sings or sees visitors, then they are also making him become more frustrated - another emotion. I think we will have to speak to the nurses or Doctor to see about putting Dad back on them. Dad also broke down this week during one of the patients family party's when they sung 'Happy Birthday' - whether this brought back memories of family gatherings I don't know? Of course I asked Dad why he was upset but he didn't have an answer.
On a more positive note...it was good to hear Dad ask Ash, when we took her to visit him on Wednesday evening, 'So when do you go back to school then Ash...?' A question asked and in context - was that a fluke or were Dad's pathways in the brain connecting correctly at the time?
I know I put out a request last week asking for people to come and visit Dad who hadn't been to see him yet...but we didn't expect a donkey to turn up! Very random - but a donkey did visit the home on Friday and I got photos of Dad stroking him. It put a smile on Dad's face - although half an hour later Dad didn't remember seeing it. If Dad's short term memory doesn't come back it is going to be very difficult for us all to live with.
Another positive is how much Dad is enjoying his food. He continues to eat his lunch and dinner - still no breakfast though. He looks forward to the homemade soups and often says 'compliments to the chef - that was delicious' after he has eaten. Dad is totally off coffee and tea and will only take sips of his thickened squash if we insist, most of the time he tells us he is not thirsty. The SALT nurse also visited again this week - her aim was to get Dad to have drinks without the thickener. She tested Dad's muscles in his throat by getting him to sip normal water while she held her stethoscope to his throat. Unfortunately the water remained resting in Dad's throat, which could result in it going to Dad's lungs and causing an infection - ultimately pneumonia. She advised there is still plenty of time for Dad's throat muscles to start working again, although in some patients the muscles never come back. Dad's weight is monitored weekly and we were advised he is sustaining a healthy weight. Before Dad had his stroke he weighed 87kg (13 stone 7lbs), he now weighs 77kg (12 stone 1lbs).
Mum and I found it quite comforting and reassuring to speak to the wife of one of the other patients at NG this week. Her husband had a similar stroke to Dad (within five days of each other) and has been left with similar disabilities to the left side of his body. When discussing our experiences she confirmed she is going through the same - i.e. the fact that like Dad, her husband will liven up and perform in front of an audience or group of visitors and that he is also obsessed with going to the toilet and asks to go again even after he has just been, and that he has developed a sometimes childish sense of humour too. Tonight I have had a text from Mum to say Dad's been singing (again) while he was having his tea, and the ladies husband sitting at the next table, has been encouraging Dad and egging him on - oh eck!
She also confirmed that she too felt that she was receiving mixed messages and that it would be helpful if there was one point of contact who could co-ordinate the information and help plan the next steps giving support and advice...I'm aware this is something the Stroke Association are campaigning for from the NHS.
So we are not alone...there are many people going through the same journey as our family. I hope they are as lucky as we are in having as many supportive loving family and friends as Dad has. To the visitors that came for the first time last week or this week - thank you for acknowledging my request for your support - it is appreciated SO much. I'm not sure how much longer Dad will be at NG, but I know we have to make decisions - we will hopefully know more after tomorrows assessment.
Thanks for the read and thanks for the support...I hope the photos below make you smile.
Love you Dad x
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| Dad and the Donkey! |
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| Dad with his brother Frank (not to be confused with the donkey) ;-) |
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