My Dad's Stroke Recovery: 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