Breaking Dad: being on the other side of the bed

The last few weeks have been rather challenging - as have for many - but for me the reality of having an elderly parent become acutely unwell during lifting of lockdown brought the reality of the COVID-19 pandemic crashing back.. Like so many others it has been something I had prepared many patients and relatives for but always with the notion that I would have a certain distance from the personal impact of it all. I have been lucky through the pandemic, I work in a private chemo unit so exposure to the risk was a lot less than many of my peers and I was somewhat protected in my own little work bubble, seeing the impact of it around me but not having much direct exposure either professionally or personally.

In the first few weeks of the pandemic, whilst everyone was still getting to grips with what it was all about ,we had patients test positive, consultants and staff. Systems were in place to escalate and contain but it was no more intrusive really than any other "process" we have in place. There was some disharmony in regards to PPE but again in comparison to more acute units ours was at a lower risk because we had the benefit of having tight screening early on.

So I bimbled around in my own bubble, getting used to different train journeys into London for work, packed trains were now like ghost trains. The walk through the previously pulsing streets on the way home at night, past deserted bars that would usually be heaving, the only sound you could hear being your own footsteps was rather eerie but kind of pleasant too. The bakery became incredibly busy as our local community relied upon us for their breads and baked goods, even becoming a major supplier for flour which seemed to disappear from the shelves of all local supermarkets!

Once lockdown started easing we decided to take a holiday to Cornwall - our annual retreat to our peaceful place. The holiday would be different this year as we couldn't stay at our usual campsite, that has become the haven where our children have grown up over the last 7 years, with the regular families that we meet every year saying we should get together before next time but never. We merely pick up with as if it were yesterday and make the same promises again. . We were excited to be going - we needed the break...

As is often the case the week I was due to go away I recieved a phone call from a member of my family informing me that my dad had been taken ill and paramedics had been called. I spoke to his neighbour, our lifeline with us all living so far away from dad and she handed him the phone whilst paramedics were there trying to peice together information and establish what was happening. Trouble breathing, severe pain, unwell, confused and disorientated ? appendix ? COVID. Either way a dramatic change of events for a man at 86years young with multiple health issues. Dad has lived alone since my mum died nearly 9 years ago and to be honest we have all been amazed at how well he has coped. For a man that barely cooked, did housework or god forbid did gardening, he has transformed into a very self contained unit, turning his hand at all the above and doing a jolly good job of it too. Or so we thought...

Speaking to a neighbour and friends we learn that dad had been going downhill for some time, stoical and not wanting anyone to know but getting more and more despondent with life - wanting to be with mum.

He was admitted to the local hospital - alone of course as restrictions still in place. The paramedics gave me the number to call to find out which ward he would be in but reaffirmed that only 1 person would be allowed to visit for 1 hour a day. Dilemmas of whether my brother should continue with his journey up so he could be there, then challenged with "what if it's COVID" he has been shielding and at risk himself ... all went out the window with the need to just be close for dad. Hospital teams were excellent on admission, helping me locate him quickly and updating me as they could, but this became more and more challenging. Trying to get the full picture from an incredibly busy team and no ability to speak to dad as he had gone in without his hearing aids and had no mobile phone! I visited on the Friday before we left for holiday and got a better picture of what was going on - still a few mixed messages but key ones were that he had an infection, was COVID negative (phew!) and seemed to be responding to the antibiotics.

Having not seen dad for a few months, I was quite shocked when I saw him. This man who has always been so strong, now looking weak, terrified and very tearful. Dressed in PPE and having to ensure I didn't touch him was horrid as all I wanted to do was to hold his hand, give him a hug a kiss and tell him he would be ok. But we managed the best we could and he was grateful to see me .As I left him very aware of how poorly he was but pretty certain he would make it back home. Dad explained the consultant had come round and discussed CPR but he was adamant he didn't want to be resuscitated if it came to it " I've done everything I want to do, there's no point anymore without mum" - It was incredibly hard to hear but was the right decision for him, however equally hard to explain to family members who still saw him as the dad, grandad etc of 20 years ago.

The first week he was in hospital was tricky with the limited visiting restrictions and trying to prep my non medical brother on what to ask and how to navigate through to get the answers we needed whilst I was many hundreds of miles away. I spoke to the ward sister and doctor daily, sometimes more and they were always kind and helpful but it was frustrating at the lack of continuity or anyone seeming to coordinate his care. The ward was busy and no ability to give dad the 1:to he could have done with. In my mind, they were treating his symptoms but not the holistic approach that I was used to or expecting, which made me angry - as a daughter not a nurse. I was told he had a pleural effusion (fluid on lung) - that's the priority, they said. We've changed the antibiotics but his CRP is going up ( ok so what are the blood cultures showing - no one knew...wait we will repeat them...) " We are waiting for respiratory team to come and see him", they said, every day again and again and still no respiratory review. He came in with urine retention ( "not unusual with an infection" they said ). Are you thinking sepsis, I said ( No he hasn't got a temperature - really I said! ) . He was severely constipated ( we don't know why, they said ) My prompting that he was having investigations for prostate fell on deaf ears for the relevance. One nurse would say he has pain another would say he's been very comfortable. One even told me he has been up for breakfast until I queried it and she apologised, it had been a busy night and she got the wrong patient!! As I tried not to get frustrated but peice together the story and work out in my own head what should be prioritised I tried to update the teams with information I felt they should know. They were unaware of his lymphoma diagnosis of many years, his investigations for prostate cancer still unresolved, and we were equally unaware of his chronic kidney disease that had been ongoing for a while without our knowledge. Meanwhile CRP still rising, no respiratory or microbiology review ( is it me- am I going mad - have I been spoilt in the places I have worked before ...??! ) " What's his lactate" I asked one doctor - the answer was that they don't do that there?!! HAVE THEY HEARD OF SEPSIS SIX!!! Finally after a few days I was told " your father is very unwell". COVID -ve thankfully but still no real answer as to what was really going on. My brother continuing his daily visits armed with my questions of the day, doing a phenomenal job at keeping dad's spirits up when all he wanted to do was to give up.

A few days came eventually, of dad seeming to improve. This allowed me to relax as we explored the beautiful beaches of Cornwall, soaking up the sun and swimming away the stresses in those gorgeous, but freezing, waters. Then a few days later, sitting on a isolated beach, kids playing, finally starting to unwind and enjoy our holiday the phone beeped. How it beeped I do not know as the signal is neigh on non existed but beep it did. I start walking up to higher ground and a text message comes through from my brother " call me urgently" , another pinged instantly with same from sister in law and I raced up the cliff steps trying to find a good signal area. It's incredible when adrenalin is kicked in how remarkably spritely you can be as usually that climb floors me ! At the top I was told " we have all been called in and told if you can make it back you should ". As nieces and nephews and other family members raced hundreds of miles to be with him I spoke to his teams to try to work out what was going on. "Your dad had an acute event" What the hell does that mean!!! Possible bleeding overnight, both lungs now filled with fluid, an abscess on one of them, not responding to antibiotics, oxygen levels dropping, now they talk of Sepsis! He needed to be in HDU but the assessment was harsh - he was DNACPR, the bays on HDU were full with COVID patients, he needed a drain but could not do it until in HDU due to the skill mix of staff and if he did go to respiratory the family would not be able to visit. During this acute episode they moved him to a side room and lifted all visiting restrictions ( I knew what that meant ).

A day went past, still with the promise of him being transferred and dad somehow holding on. Respiratory teams not visiting to assess and dad continuing to deteriorate. I decided not to make the journey back as could do more by being stroppy nurse on the end of the phone, rather than wasting 8 hrs of stroppy phone time on travel back!!! I got completely the need to balance ALL prioritised patients on the units, but now not as a nurse but a daughter it was different. I got hold of the site manager who was wonderful - she knew dad by name and gave me full explanation of the rationale that they had all been using but just hadn't been able to adequately communicate to us - it completely made sense. PALS gave a gentle nudge and after 2 days dad was on HDU, chest drain in and feeling ill but much improvement.

The thing that has struck me the whole way through dad's admission was - what if I hadn't been a nurse... what if I hadn't been able to advocate for him... ?

Incredibly Dad made a good recovery, thanks to remaining COVID negative throughout and his sheer downright stubbornness. The next stage was discharge planning...let the fun begin. Dad called literally the next day after being transferred back to elderly care from the respiratory ward, to say he was trying to get hold of my brother to come and pick him up - as being discharged. Stroppy nurse back into action - lack of hearing aids causing slight communication breakdown yet again - the ward round had stated " start discharge planning " and so my brother on his planned visit then had to deal with a very grumpy dad who didn't understand why he couldn't come home straight away. He didn't like being with "all these old buggers!"

Having ran a reablement and early supportive discharge service for a few years at Addenbrookes Hospital and also working in home care for many years I knew how the process worked. A delicate game of chess for everything to line up - medically fit, care package agreed, not medically fit but care package able to start, ready for discharge Jon care package and COVID result needed, medically fit for discharge, now book hospital transport home, all whilst ensuring COVID tests was done within 48hrs or the process starts from the beginning again. Finally all the pieces slotted into place and I decided although not much in place at home - if we didn't get him back now we may lose the care package and staying in for longer would be more detrimental to dad than not. Home he came.

As the ambulance pulled up outside the driver was extremely pleased to see me, as they had been driving around the estate for the last 10minutes as dad was unable to recognise his house. He had only been in hospital 2 1/2 weeks but completely disorientated. Wheeled off the ambulance was a man I barely recognised, thin, frightened, tearful and in his blooming hospital PJ's ( argggh - please at least get people in their own clothes to go home!! my bug bare. ). Settled him into his favourite chair and the tears came - relief but sheer exhaustion - he never thought he would see his home again. Over the next few days services kicked in - reablement team of 4 visits a day - wonderful. A local Occupational Therapist popped in as she was in the neighbourhood and got things in moving and so "breaking dad" was no longer the theme - he was now heading for "Rocky's return"!

Prior to dad's admission we had all just let him get on with him - he was adamant he was coping and we chose to believe him. Lessons learnt and a change on dad's part to accept that he now needs more support. Big discussions in the family about where the best place for that support was, but dad vehemently strong in his wish to stay in his own home. So we now gently pursued and coerced him to accept more help - building a team of carers and support people to enable him to have his wish. Mindful that his capacity was and still is fluctuating and easy to mould to what we wanted him to do, we had to be extremely careful to ensure we were advocating his wishes and not ours. Even bigger discussions about further hurdles in his acceptance of his independence changing with leading him to give up his car - brave decisions but hard none the less. Stairlifts arranged - we thought of getting one when mum was ill but there wasn't enough time.. Mobility scooter now an integral part of his support team. Lifeline alarm in place for when we had to eventually make the move to leave him alone at night without us staying over.

Time will tell if it is successful and if so for how long but for now it's his new normal and one we must respect, trying to ensure it continues for as long as it can. It's been hard being on " the other side" of the bed. Lots of emotions flood in to take over from my usual professionalism. As much as I try to detach and treat the coordination of his care as I would any patient - he's. my dad at the end of the day...

Advocating for someone so close is a challenge though, our relationship hasn't always been great and there are difficult challenges with my siblings that I hoped I would never have to put to one side and ignore but shelve them I had to in order to get the best for dad. As all the family dynamics kicked in, fighting against my being the "little sister" to have a voice whilst advocating to fulfil dad's need to maintain his position as the head of the family was a tricky balance. Time for all of us to help him realise that now is time to trust his children to do their best for him.

My reflection has been, that when I was working in discharge planning I thought I always bringing people home for the right reasons - they were medically fit and the hospital needed the bed for more needy patient's... Medically fit but not physically fit some, but services could kick in to continue the care at home... Medically fit but not always emotionally fit, moving to an environment with strangers coming in to you are regular intervals is not the same as having strangers on hand at the touch of a button 24/7. I believed the patient was always dead centre and that we tried to liaise with family or support network needs when planning discharges, however, now I wonder were all the discharges the right ones for both family and client or were we just doing the best we could to fulfil service needs? The patient is never in isolation - there are so many different elements that build to ensure a successful discharge but it is apparent to me that this is near on impossible to get right even if there is not an advocate and solid family members all working as part of the team.