The Carers Week bunting and celebrations in June 2020 were muted as the world reeled from Covid 19. Our lockdown lives were short on fun. We all have a story to share and here’s mine. I’ve written about my own experiences as an unpaid carer before and in early February 2020 we knew there was ‘summat afoot.’ Before the pandemic took hold it was a case of ‘Keep Calm and Carry On’. My Mums care home had already restricted numbers to one visitor only. I was concerned but not unduly worried. This changed quickly and in March 2020, our concerns increased to anxiety as the media ramped up their reporting as cases increased exponentially. The scandal of some care home residents being discharged from hospital to care homes without testing, became apparent. Medical and care staff were exhausted, emotionally wrung out; some without enough resources or PPE
22nd March 2020 – I was permitted to ‘view’ Mum through the window at her care home. Mum had lost her ability to recognise family members over the years ‘due to Alzheimer’s disease. She was also very deaf, refusing to tolerate hearing aids as her dementia worsened. My brief visit consisted of knocking on the door and waving my arms to attract her attention. It was a non starter but I was able to see she was visibly well (whilst crossing my fingers). The visiting ban that came next came with what seemed to be an information blackout from the care home on a ‘need to know basis’. Soon after, Mum’s care home was in chaos as the infections came thick and fast. It was confusing, worrying and we were helpless.
Our family story is not unique and one of thousands of similar stories. We lost so much in 12 months. Last year I shared a blog, Lockdown in Mapperley a New Hope ending my reflections with a thanks to care home staff for putting their lives on the line and taking care of Mum. In 2021 I can’t speak about Mum in the present tense. ‘Wee Sadie’ is no more. She left us quite surprisingly (for a creaking gate) on November 29th 2020, aged 94 after almost 15 years with a dementia diagnosis. It feels important to preserve the memories whilst they are still clear of how it felt living so near, and yet so far from Mum and the effects of the pandemic at that time. The feelings described in words stir up memories, both happy and sad and remind me that Covid will feature in our lives for many years to come. We are learning to live with it.
23rd March 2020
I was greeted with a carpet of spring flowers in the early morning sun at Duncan MacMillan House in Nottingham. A beautiful and serene day with a multitude of parking spaces to choose from! I quickly grabbed my office equipment. From here onward, my working week changed radically. Walking through the taped off area and piled up chairs of Cafe Art I was struck by the silence, the place was deserted. No hissing of the espresso machine or breakfast queues at Options Café. Later that day, the Prime Minister addressed the nation. Quote: ‘From this evening I must give the British people a very simple instruction – you must stay at home’. You should not be meeting family members who do not live in your home‘.
So it began. The same routine. Work from home using MS Teams (which swiftly became the ‘new normal’), finish work, get our permitted hour of exercise and repeat! Thankfully, ‘my work family’ were supportive. I was able to work flexibly to take the time I needed to arrange calls with the care home and to drop off treats for Mum and speak to staff on the doorstep.
The Three C’s – Covid, Confusion & Caring
I noticed the care home staff were tight lipped and guarded but when pressed, some admitted to being ‘kept in the dark’. We had to drag out nuggets of information if we wanted to know anything. Mum was a cheery soul generally but there was little or no activities to occupy residents who were soon confined to their rooms as Covid did its worst. No details of Covid testing schedules were shared with us. I found out that Mum had been tested purely by chance. Communication technology was non existent other than by calling the office landline. At this point there was no vaccine or treatments. A member of care staff told me she had to buy extra masks as they were rationed and PPE was in short supply. This was dismissed by the owner of the home as untrue. The home had over 40 residents at this point.
I missed being close to Mum. No hugs or touch, no face to face contact from loved ones to anyone in care homes for months on end. It was worse for my siblings who were not living locally. As the rules eased and the weather warmed up, socially distanced garden visits were thankfully arranged but it was a far cry from pre-Covid visits. Over time I discovered that seven residents I knew had died. Seven beautiful souls who didn’t get the goodbyes and funeral they or their families and friends wanted. There were more residents lost to Covid but I didn’t know them all by name. This was a painful and traumatic time for relatives, residents and staff nursing and caring under extremely difficult conditions.
One resident who lost her life to Covid was a wonderful woman, supported magnificently by her husband who used to visit twice a day every day for years. When she died he was heartbroken and didn’t recover from the shock of such a difficult and sudden goodbye. A few months later he died himself. I called him after he lost his wife and it was clear that his reason for living had gone despite having a loving family to support him. The loss and collective grief of the pandemic is immeasurable. The impact on our NHS is enormous. Staff are exhausted and traumatised and it’s not over yet as our waiting lists rise steeply for postponed appointments, therapies, surgeries and the ominous rise of more variants emerging.
‘Queasy Cam’ Home Video
As Summer became Autumn, the care home purchased an iPad when garden visits became impractical. Skype has it’s limitations however! Without a tablet stand or tripod, it felt a bit like ‘queasy cam home video‘, i.e. disorientating for the resident and a balancing act for the carer! Mum usually fell asleep when we called so there wasn’t much conversation plus she couldn’t make the cognitive connection between a tablet screen and a real person. My sister booked virtual visits but sometimes there was no answer due to miscommunication or an issue with the iPad. Frustrating? Yes, but yet I felt so sorry for the staff. They presented brave and happy faces to reassure us. I’m glad Mum was oblivious to it all.
As time went on, staff became increasingly unhappy, mainly due to the lack of clarity day to day. Weeks turned into months and residents still had no activities. We were grateful for the goodwill of the activity co-ordinator who took it upon herself to do a bit of grooming and hairdressing for those most in need but there was no chiropody for over six months. Can you imagine not cutting your toes nails for six months? Some staff left their posts and some were dismissed but we didn’t find out why until a chance meeting with the owner reinforced that something was askew. He expressed his unprompted opinion about how staff were letting him down and thinking of themselves and self isolating when they should be working (like he was).
The Three C’s – Covid, Concern & Closure
As September turned into October, the second wave of Covid hit hard at the end of 2020. Again, visits were cancelled but we were not expecting the next body blow. A letter arrived informing us that the care home contract with the health service provider had been suspended after the Care Quality Commission(CQC) found serious areas of concern. The alarm bells were clanging as it hit home just how serious this was when twice weekly Zoom meetings were set up with staff representatives, relatives, the local authority regulators and the CQC. Even more concerning was that we had been informed that the owner was barred from the care home. What came next was a total shock. The CQC gave the home 90 days notice after a second unannounced inspection. We couldn’t believe it as closure is usually a last resort and should only be pursued in the best interests of service users and their families. I spoke to the local authority and was told it wasn’t fixable which was difficult to process. Everything felt surreal as we couldn’t see Mum in person through this awful time.
A Grim Read, Local Press and Virtual Visits
Relatives were warned that the CQC report was going to be a grim read but we found out the details in the local press before we caught site of the report. We didn’t recognise what was being said about the home. Police involvement was acknowledged. Mum had been well cared for, or had she? We just didn’t know. We were alarmed and worried but we were reassured that staff were being supervised and re-trained to care for the residents by an independent management team from the local authority until new homes were found. I visited the home with goodies for Mum and three staff members popped out to see me. We stood on the doorstep together and wept. We needed a hug but hugs in 2020 were banned. (I wasn’t in their bubble). They were about to lose their jobs and despite everything our family still hung onto the knowledge that Mum had appeared well cared for but as a family we were dismayed. The search for a new home began.
Moving Mum during a pandemic filled us with dread. Two years previously, we moved Mum from another care home, again, due to concerns which was also eventually closed down by the CQC. Why was this happening again? We felt so conflicted as Mum was settled and had thrived. She was popular, undemanding and seemed content. She was one of the lucky ones. Over time we came to understand that other residents had not received compassion, respect or good care. Shockingly, some residents had been locked in their rooms or physically restrained by staff due to poor training. Many other issues were reported which are still painful to think about. Eventually the providers registration was cancelled.
After numerous phone calls, form filling, a couple of virtual care home visits and one Covid socially distanced visit, we found a vacancy. The new home wasn’t able to meet Mum in person, that was the role of the placement officer from the local authority. We relied on photos and WhatsApp videos to help them to make their decision. So much paperwork, endless questions and phone calls but at last, a date was set to move Mum on December 1st 2021 with 14 days of self isolation for Mum to follow. Leading up to the move was stressful and some things were beyond our control so I was grateful for the understanding and compassion from my work team.
We were on a count down for move day but prior to this I received late night calls from the home to let me know that paramedics and the NEMS (Nottingham Emergency Medical Service) on call doctor had been called. Mum was unwell and distressed. After a long chat we made the difficult decision not to admit Mum to hospital. There wasn’t enough night staff to get the prescription issued so I offered to go to the emergency pharmacy. I discovered the prescription contained medication for patients on ‘end of life’ care. On this basis, I asked if I could see Mum for a couple of minutes and they kindly agreed. Mum was tiny in her big bed, visibly frail and by this time sleeping. What shocked me was by this time hardly any residents were left living in the home only people who had a more challenging diagnosis and harder to place in a new home. Surprisingly, the next day Mum rallied but it didn’t last and out of the blue, the home called and asked if I wanted to visit as they were concerned about a change in Mum. To cut a long story short my siblings made the long journey to Nottingham and we spent a few precious hours together, never really expecting it was for the last time.
It was a surprising visit in some ways. Mum loved ice cream but little did we know it was going to be her last meal. Two big bowls later she settled down for the night! We felt reassured enough to go home for a cuppa. As my siblings were about to head home we were called to say that Sadie, our Mum had gone out like a light after 94 years. My brother was convinced that Mum would take us by surprise and how right he was! We just couldn’t take it in so off we went, back to the home to sit, reflect and spend some precious time with Mum to say our final goodbyes. The day we lost Mum was 30th November 2020, my last day of full time work before I retired from the NHS. Mum was thoughtful, she gave me a fortnight off before I returned to my role on a part time contract!
Sadness & Reflection
My first day of retirement was spent sorting out Mums possessions. It was also the day we expected to move Mum to her new home. What a lot of phone calls we made on that day! Due to Covid, the care home packed everything up for me as I wasn’t able to go inside the home and my siblings were not permitted to stay overnight so it felt surreal to look at what was left of Mums possessions on my own. From a large home to a small flat, from a car load to a large plastic box. I sat on the floor surrounded by a pile of name tags that had to be removed from her clothes before packing them off to charity. That was a difficult day however, I can now see that Mum was very lucky to have escaped without a Covid infection. She was a positive strong woman as her 94 years demonstrated.
Mum’s funeral was small but we made it as special as we could. It took a month before we were able to finally say goodbye for good. We managed to get a Scots piper to play outside. ‘Wee Sadie’ was from Scotland and she loved those piper laments. The live stream made it accessible for family and friends who were not permitted to travel. Covid has taken so much away from those special moments and milestones. No wake, or meeting friends or family other than for a few minutes. The funeral directors were magnificent and eased any worries we had, but I have to be honest, it could only be described as a conveyer belt of funerals; one in and one out.
In the aftermath of the first wave of infections, the analysis of what went wrong in care homes is being laid bare. The decisions were not the right ones. Yes, we were dealing with something we’d never experienced in our lifetime but the science was compelling. The old phrase ‘ignore at your peril’ came true and complacency won. Care home residents routinely require intensive patterns of physical care. Woeful supplies of PPE and the late mandatory wearing of masks cost us dearly and human lessons need to be learnt as we move through year two of this dreadful virus and beyond.
As Carers Week 2021 take place, I’m remembering what it felt like to be a carer. I feel relief, sadness and longing mixed with memories of when Mum was at her best. She cared for my Dad as he was nearing the end of his life. This she did with good grace, acceptance and love whilst shielding me and my siblings as much as she could. Six months on there’s still things to do, everything takes so much longer due to Covid which prolongs closure. Hindsight is a wonderful thing but looking back I can say that what we needed and didn’t always get was honesty and real communication, where you don’t sugar coat the truth. In addition to this, dementia needs vital research and proper funding. Around 850,000 people with dementia are living in the UK, this is projected to rise to 1.6 million by 2040. Who will look after you if there’s no improvements by then?
I don’t have any advice to share from my experiences as everyone is different but there’s a lot of practical help and professional advice out there if you think this may happen to you in the future. I’ve learnt to my own costs to be mindful of the signs that you may be vulnerable yourself. By this I mean physical, emotional and mental wellbeing. My own health has been affected but after Mum died it took a few weeks for me to realise that it could be linked to the accumulated stress over the years spent in that caring role. We did our best and that’s all we can say. Unpaid carers feel a lot of guilt for all the difficult decisions they wished they didn’t have to make and this is a normal part of the role. There’s no manual! Supportive families, friends and colleagues makes a difference as long as you share how you feel and try to ask for help when you most need it.
I felt lucky that my work family was part of that caring journey and even more so now that the Trust recognises our staff who also have a caring role. Several of my colleagues in caring roles share similarities with me. I’ve always been given understanding and empathy at work and for that I give my heartfelt thanks. If you are an employee of our Trust who needs support, don’t hesitate to speak to your line manager, it’s worth it.
In Carers Week 2020 I wrote a blog about the importance of being recognised as an unpaid carer in Coffee, Chat & Carers