My Dad's Stroke Recovery: Dad's home!

Well we made it, Dad finally returned home where he belongs. How wonderful after 19 months of living apart, Mum and Dad are back together under the same roof. The last week of November was certainly more challenging than most, which was to be expected…but returning home with a UTI was not part of the plan – I’ll fill you in later.

When I look back over the last 19 months, I can clearly recall the times where I have felt most vulnerable and emotional with a constant feeling of sickness in my stomach and those times were when there was any change. When Dad first had the stroke, when he moved to the step down at NG after five weeks in hospital, moving to JC the neurological care home last September and any subsequent time Dad spent in hospital. Those feelings have come back with a vengeance over the last couple of weeks. Dad is at home now where he belongs, but the real hard work has started and my worry now is for Mum and how she is coping both mentally and physically. Mum suffers with trigeminal neuralgia (TN) - a condition that causes recurring severe pains through the nerves in parts of the face. She has suffered from this for years and prefers to do it in silence. The pain is often unbearable and stops Mum from being able to talk and eat but she grits her teeth, literally, and perseveres – she is a true warrior in every sense of the word.

Throughout the month we have received many texts and messages of support about Dad leaving the care home which have been encouraging for us all. Something I think I must clear up however is people’s understanding of a neurological care home and rehabilitation. Although the home nursed people with brain injuries, the care was no different to that received in any other nursing or care home up and down the country. The rehabilitation Dad received was for approximately half an hour to an hour each week, sometimes Dad couldn’t even sustain that. People seem to think that he had been receiving intensive physio sessions and therapy on a daily basis, but unfortunately this was not the case – apologies if I gave you that idea. Much of the recovery Dad has made is from the daily visits and interaction from Mum and other members of family and friends engaging with him and trying to keep him in the real world.

It was an emotional day when we brought Dad home - I hardly slept the night before I was so excited, yet apprehensive at the same time. We found it emotional saying goodbye to the residents of JC especially those who had spent quality time with Mum and Dad during their time there. Mum wrote goodbye and good luck messages to the residents families who over the last 15 months had built friendships with Mum. Many of the visitors, like Mum herself, travel to the care home on a daily basis to be with their loved ones – almost like a vigil. There is an understanding between them of the heartache involved in seeing a loved one change so dramatically, both mentally and physically, from a brain injury. The families we met showed courage and dedication and are a true inspiration to us all - it is not only the victim’s life that changes in an instant forever, but also the lives of the loved ones around them - the impact on the family is immense. The reality is that these life changing events could happen to any one of us at any time, as my family found out. We have seen first hand the tragic impact of the brain being starved of oxygen, the devastation caused by a road traffic accident and the destruction to life that Huntington’s disease and alcohol addiction slowly brings. It’s been an eye opening and emotional experience.

So how has it been with Dad returning home – it is great to have Dad home and back where he belongs, people advised it would be difficult, but the reality is that nothing could have prepared us for just how hard it would be. With such a big change it is paramount that everything should run smoothly and be in place for the transition. It is hard enough dealing with the change, so to still be chasing and battling for things to be in place after the event is extremely frustrating and adds to an already pressurised environment, as we have found. Surely there were enough people involved to enable a smooth transition? We are still waiting for essential equipment to arrive that we were advised would be provided in advance of Dads return, including equipment to be used in the event of a fall, which is frustrating and surely not acceptable? An Occupational Therapist from the local authority came to assess Mum and Dads house and made it clear she was unimpressed that this had not already been arranged; she also made suggestions for other adaptations that may help.

Regards the carers…where shall I start - I guess positively would be good? The care package is for two carers to visit Dad four times a day, once in the morning to get Dad up, twice during the day to toilet him and finally at night to take him to bed. Well…some of them have been really good showing lots of promise, they have visited several times and have built up an understanding of Dads needs and complexities and have learnt how to diffuse the situation when Dad becomes angry and frustrated…others, well, they leave a lot to be desired. We have already raised concerns about the way one carer spoke to Dad shouting at him ‘If you carry on like that you’ll have no carers coming in to look after you’…yes because that is the way you speak to someone with brain damage. Twice in a week Dad’s glasses have been handed back broken to Mum by the carers – this has resulted in family members having to take them to the opticians to be fixed as Mum is unable to leave the house and Dad on his own.

A care plan was produced with help from the family who know Dad better than anyone, it is meant to be read by every carer that comes in to the house to look after him – but this isn’t the case. If they don’t read it they don’t have an understanding of Dads needs and disabilities. Time keeping is a massive issue – so many times Mum and Dad have waited nearly an hour for them to arrive after their allocated time – but we have been told by the care provider ‘give it time for things to settle, it’ll be better next week…’ Mum has resulted in toileting Dad herself several times a day as a consequence of his incontinence and poor time keeping by the carers. We put a call in to the incontinence nurse to visit within days of Dads return, but following a call to chase we have been advised ‘the appointment will take a while’. In the meantime the pads don’t seem sufficient in holding the urine in place, Mum walked in to the lounge the other day to find it trickling down Dads leg and collecting in a puddle on the carpet…incorrect pads or incompetent carers, we’re not sure?
With the amount of water going through Dads PEG it is inevitable that it has to come out the other end…but there seems no end in sight to the dietician reducing the 1,800 ml of water going through.

The incontinence has a huge impact during the night. We asked for night time records from the care home to understand how often Dad is changed through a night to give us an expectation of what Mum would be dealing with – once a week on average according to the records, otherwise he sleeps through the night. We don’t think they were very accurate – as every night Mum checks on Dad and ends up having to change his pad and clothes on her own, not easy at all when Dad is lying in bed unable to help Mum and in the worst situations, she changes the bed sheets too. It isn't realistic that Mum can sustain this - I don't think anyone could, so to try to prevent it from happening we have asked the dietician to change the timings of the 1,800 ml of water going in to Dad, so it is not so near him going to bed.

The few nights that I have stayed over to help them both I have found it extremely tiring, checking on Dad through the night and helping Mum do the pad and clothes changes – how she does it on her own I do not know.

The days for Mum are exhausting too – the washing machine is endlessly on as Dad can have up to three changes of clothes a day which all require cleaning, plus all the bed linen and towels on top and she now has to prepare and cook three meals a day. Sue, Mums and Dads daughter in law, has been a big help popping in meals to heat up and fetching shopping in for them – such is the convenience of living five minutes away. On top of this, throughout the day Mum has to ensure Dad takes his tablets – 12 in total. This is not easy either as Dad is so susceptible to choking if he does not swallow them correctly.

Disappointingly we were informed as Dad returned home that the PEG tube inserted in to his stomach has started to attach itself. The tube has to be cleaned daily and pushed in and pulled out by an inch once a week to prevent the skin growing around it. Unfortunately this means Dad will have to be readmitted back in to hospital to undergo a procedure to fit a new one. Not great when we’ve only just got Dad home.

Oh yes - you did read correctly at the start of the blog…Dad returned home with a UTI. We picked up on it once we were home and early Saturday evening the smell was so strong and the urine so dark we phoned the NHS medical help number 111, to get an out of hours Doctor to prescribe antibiotics. I spoke to three different people relaying the information before they confirmed a Doctor would be sent to see Dad. To each of these people I explained that Dad was no longer at the care home and that as of yesterday, he was officially back at his original home address and provided the details. I was gob smacked, though probably shouldn’t have been with our experiences to date, to receive a phone call a couple of hours later from ‘Prime Care’ advising that a Doctor had just arrived at JC (the care home) but Dad wasn’t there….what can you say?! We then had to wait another four hours until 1am before he finally arrived at Mum and Dads house; fortunately he was able to prescribe antibiotics which Dad started immediately. This took Dads daily tablet intake up to 18. For five days it seemed like Mum was constantly giving Dad tablets – well she pretty much was. Thankfully – the UTI has now cleared.

As a result of the UTI, we found we couldn’t leave Dad sitting in wet and smelly clothes, especially when it was at least another couple of hours before the carers were due back. On one occasion Mum and I decided to take Dad to the toilet ourselves, as we have done many times before. What an experience! Just as I was pulling Dads trousers down a shot of diarrhoea landed on my hand and jumper…’Mum, look what Dads just done’ I said. We started laughing with that ‘black humour’ that takes over - as Dad started splattering diarrhoea shots all over the bathroom floor. We managed to sit Dad on to the toilet, his clothes and pad in a state. Dad was chuckling away at the situation – toilet humour is the one thing guaranteed to make him smile these days, but then the smell hit me. Retching I ran to the upstairs bathroom to wash it off me, leaving poor Mum to clean up the mess. Bless Dad – he was very apologetic after the event, even though he was smiling when he said ‘sorry’.

Dad is making good use of the bathroom as you have read and the vertical lift we had installed is definitely money well spent. Dad uses it twice a day; it is an excellent solution to get Dad downstairs in the morning and back upstairs to bed at night. He has been likened to the Pope in his pope mobile as he slowly glides up and down from one floor to the other, sometimes giving us a smile as he goes. The grandchildren think it’s the best thing ever - ‘Can I have a go in your spaceship Pop-pops?’ they ask on every visit!

We asked Oliver what he thought about his Pop-pops being home at last – ‘I don’t like it…’ he replied – ‘oh’ we said alarmed ‘what’s wrong?’…’nothing’ he said with a big smile on his face ‘I love it’! I think he’s been watching too much X-Factor!

People keep asking – does your Dad know he’s at home and has he settled? Well we’re not sure. We tell him often enough he is at home and how good it is to have him with us, he remembers his address – with prompting, but whether he recognises it and it feels familiar we can’t be sure. He’s never used a lift to get upstairs before so that’s not familiar to him. The angry spells still happen so the environment doesn’t make a difference but they are usually caused through frustration or mishandling and Dad continues to be tired. Mum has been playing music to him and he sits at the table for his meals and to read (or look) at the paper. We desperately need to get a routine in place to help both Mum and Dad but we appreciate it will take longer than planned – which is why we feel so strongly that everything should have been in place to come home to. I've tried to explain things how they are and to keep it real, life after stroke is immensely challenging. I hope with all my heart that life gets a little less complex next month for Mum and Dad.

It would help so much if there was one contact, one person to speak to, to deal with all the issues that keep arising...but we are left to leave messages with so many various departments and then wait and wait for them to return our calls. Very frustrating. And I know we are not alone as a friend in another part of the country is experiencing exactly the same frustrations whilst caring for her parents too.

Another friend said to me this week when I was off loading, it’s not about taking it day by day anymore, it’s hour by hour – and that is exactly how it feels. I never know when I phone Mum whether she will be angry, emotional, frustrated or 'ok'. We will keep going as we always have done and we will continue to give Mum the support that she needs in her new role of full time 24/7 carer to her husband - she is already looking exhausted and feeling emotional. I was advised to seek help from numerous charities before Dad left the care home - 'I'm sure they'll be able to offer some support through the night' I was told...unfortunately this is not the case - every line of enquiry has resulted in a dead end. If anyone has any ideas or has learnt from similar experiences - please get in touch and let us know.

As the Christmas festivities come round again – we thank each and every one of you for your support over the last 12 months and for keeping in touch and reading this. You won't be surprised to hear that Mum doesn’t have the time this year to write the 150 plus Christmas cards she would usually send to family and friends – so please accept their love and best wishes via this blog and pass them on to those who don’t have access to the internet.

Wishing you all a special time this Christmas and if you too are caring for loved ones – our thoughts will be with you.

Here’s to a happy and festive Christmas time.

Love you Dad x