Mary’s story: 5 years on

30/06/2025

No-one in my Mum’s care home contracted Covid but I believe her death was hastened by the measures put in place to ‘protect’ her. What is more important, length of life or quality of life? 

Ann and her mother Mary

My mother worked as a Sister on a busy orthopaedic ward in St James’s Hospital, Leeds in the 1950s. I too am a qualified nurse and midwife with a degree in Psychology. I write this from the perspective of a nurse and a daughter and someone who understands the connection between psychological and physical health.  

In June 2019, my mother decided to move into the care home where two of her sisters had lived for four years. Her mobility was decreasing, and she was becoming forgetful at times. When she entered the home she was classed as a residential resident and was one of the fittest people living there, both physically and mentally. She chose a beautiful corner room on the third floor with windows overlooking the garden and an ensuite toilet. We had a phone installed and my sister, brother and I spoke to her most evenings. She had regular visits from the family, including her great grandson who she adored. 

The average life expectancy of someone moving into a care home is two years.  This extends to four years if they have chosen to move in themselves (as in my mother’s case.)  She lived in the home for just over a year, 6 months of this time was during the time of Covid.    

Mum was diagnosed with mild Alzheimer’s Disease shortly after entering the home but after an initial adjustment period she began to settle, taking part in activities both within and outside the home. She attended a tea dance in the village, played games, read poetry and helped the other residents where she could. She fought to be allowed to use the lift on her own and could walk with a stick. She was a feisty, largely independent, 84-year-old. 

Towards the end of February 2020, Covid measures began. Mum was asked if she would move out of her room temporarily so that an isolation area could be created within the home should it be needed. Four other residents on my mother’s floor had already agreed to do this. As an ex-nurse and always happy to do things for ‘the greater good’, mum readily agreed. She moved into a smaller room on the ground floor. This had no telephone connection and no toilet.  The family were particularly worried about the lack of a telephone but were told it was impossible for an engineer to enter the home to install one. We bought a mobile phone, but mum couldn’t operate it. She lost her regular, private contact with us and us with her. Instead we would have short calls on the home’s phone, with mum using a phone in the corridor or treatment room.  

The move to another room quickly had a negative effect on her mental health. She was frequently unable to find things in the new room which confused her. She had a couple of bad falls on her way to the toilet - access to which now necessitated her negotiating a heavy door and crossing the corridor. Mum’s mobility became steadily worse, and her physical health deteriorated. She kept telling us her shoes didn’t fit, and we kept posting her larger sizes. It was impossible for us to know what was happening.  

We discovered she had extremely long toenails just before she died due to the chiropodist not being allowed to visit the home. This would be one of the reasons her shoes didn’t fit and why she had difficulty walking.  

She was referred by her G.P. for a scan due to increased pain in her lower back – this showed she had spinal stenosis. Following the scan she was isolated within the home for 14 days and in the ‘’isolation wing’ – which happened to be her old room.  However, her room was completely unrecognisable as she wasn’t allowed to have her own belongings in there. There were large plastic bins in front of the wardrobe – for disposing of plastic aprons and gloves and none of her own bedding, family pictures, books or familiar furniture. Most of her clothes had remained in the other room too and she was supplied with wooden cutlery!  I asked what she was supposed to do all day in this isolation and managed to get the staff to agree for her to have one or two familiar items returned to her room.  

She thought she was in a mental hospital and once said: “I don’t know why I’m being punished. I was only trying to help people.” It was too much change. She couldn’t understand the isolation and her mental health deteriorated further. 

Towards the end of the 14 days she contracted a urine infection and was admitted briefly to hospital for intravenous antibiotics. A further two weeks of isolation followed on her return to the home. She didn’t want to return, but I encouraged her to do so and reassured her we would do our best to be with her. We weren’t allowed. I literally begged and pleaded with the home’s nurse to look after her. This was one of the most upsetting moments. I was reduced to begging - it was all I had left. I’d let mum down. It felt the most unnatural thing in the world. I’d always assumed that when she needed me, I’d be there. The feeling was so deep and primal, like being a child taken away from their parent. Almost five years later this still makes me cry.  

Dying and not dying! 

A few days later the home asked us to visit because mum was very ill. During the next few days, she saw several family members. Unsurprisingly to us, she started to improve, sadly this meant the visits had to stop because she was no longer considered to be dying. Dying was the only criteria that allowed us to visit.  

The following days were a blur. If mum was considered to be very ill I could visit, but if she picked up, as she tended to do each time, then I wasn’t allowed to see her. Some members of staff were more lenient than others – which I was grateful for, but it was a complete roller coaster of emotions. This was the worst time of the whole process.  

The last conversation I had with her she said, “Sometimes you just have to accept that you’ve done as much as you can, we’ve been very lucky to have this time to see each other. Lots of people haven’t had that.”  

This had been a good visit but at the end of it I was told by a nursing sister that I had to leave in half an hour as Mum was much better and would be moving either back to her room downstairs or to another room. Neither room had a toilet and this was important to her. I asked if I could see the new room so I could help Mum decide, but this wasn’t allowed. I asked if we would be able to visit her in her new room and was told no. We would be able to see her when she was well enough to come to the door downstairs and talk through the glass.  

My Mum looked ashen and confused – a light went out. She gave up in that moment I think. It was all too much for a confused 84-year-old. We had half an hour together where I tried to prepare her for moving from her room again and the fact that we wouldn’t be able to visit. I told her it was the rules and that we all loved her and would continue to do all we could to visit her.  

I asked to see the nursing sister in the garden. She spoke to me with her mask on. I told her my mother would probably die now as I felt she’d given up – it had all been too much and there was no hope in sight that it would change. I was angry and upset, but I also felt sorry for this nurse who was doing her best to follow the rules and to think of everyone in the home not just my mother. I understood how difficult it was for the staff.  

September 2020 

Three days later the home rang and asked us all to visit as my mother was dying.  

The relief I felt at being able to be with her, holding her hand, combing her hair, offering sips of water, reassuring her constantly that she was safe. Every few minutes she would open her eyes, looking frightened and lost. Each time I told her everything was alright. Showed her photographs, read to her, connecting and loving her at this time when she most needed it. This is humanity, this is what we are supposed to do. It’s as natural as helping a woman in labour. We’re humans, we connect with each other and help each other when help is needed.  

For the next three days either my sister, brother or I were able to be with her, and we were all there when she died - amazingly and against the rules! We felt sad but incredibly relieved she was no longer suffering the physical and mental torment. We feel very fortunate to have been with mum during this time. Many were not so lucky – as my mother so rightly said.  

I’m convinced mum decided to die. She stopped eating. She’d had enough and there wasn’t enough hope things would improve. If someone had told her she could have visitors again and hold her great grandson I think she would have battled on, but there was little hope offered, and her quality of life was too reduced. Whilst she had physical problems, the mental strain was too much for her in the end. I think it was a shock to the staff that mum died when she did, being one of the healthiest and most able people in the home just a couple of months earlier. 

What went wrong? 

Boris Johnson, Matt Hancock and Helen Whately did not listen and were not responding to letters or concerns or information from people who were directly involved and who could see what was happening and how wrong it was. ‘Following the science’ was the mantra but much good science was ignored. (Vitamin D tablets would have saved many lives, particularly amongst the ethnic communities who experienced higher death rates than their white counterparts.)  

Covid trumped everything. It didn’t matter what other harm we were doing to people, physically or psychologically – everything was deemed to be permitted in the name of fighting Covid or reducing the strain on the NHS. With any treatment it is important to assess the risks of the treatment itself and take this into account. This did not happen in the case of Covid and we are going to see the repercussions of this for years.  

The measures to protect caused more harm than the virus itself for many people. All social activities stopped, no trips, cooking, singing, visitors, painful covid tests – which if you are confused would feel like assault, unable to understand staff due to mask wearing, no hairdressers, restricted access to medical staff, chiropody and physiotherapy to name a few. Then there is the psychological torture of isolation within the home or only seeing loved ones through glass. This is like solitary confinement – especially when you have nothing familiar around you.  

Staff in homes had an impossible job. While I remain very angry about what happened and hold the homes responsible for much of the lack of care, I do appreciate that staff had a difficult and almost impossible job to do. The rules for care homes were interpreted differently by each home and often by different members of staff. There was no clarity from central government. Guidelines were often confusing. 

What should be learned? 

NEVER isolate older people in this way again. It’s horrifying we did this with all the research we have to show the harm isolation does. To think we did this to elderly, confused people at the end of their lives is shocking and desperately sad. Things happened in care homes which under normal circumstances would have seen people prosecuted and the home closed. It’s important that family members, or a representative, can continue to visit and support the elderly or vulnerable person.   

Ask the opinion of residents – or their close family members. We need to ask residents of care homes what they feel about a situation and what they would like to happen.  They were never asked. It was presumed they preferred to be isolated and alive, rather than run the risk of contracting Covid.  The ones I spoke to, including my mother and auntie would have preferred to take their chance. They were in their 80s – they accepted one day they would die of something. They would have preferred to see their families rather than spend the last years of their life lonely and confused believing they were being punished for doing something wrong. We denied care home residents their human rights by not asking them if they wanted to continue to be protected in this way.  

This is a shortened version of a long sequence of events – many not covered here. It’s a true story, and compared to what many patients and relatives suffered, it’s mild. People went through unspeakable suffering, and they will carry the guilt of not being able to care for their loved ones at the end of their lives for ever. There has been very little acknowledgement of the grief people experienced during Covid. I feel there needs to be some recognition that so many people suffered, not just from Covid, but from the measures taken to ‘prevent’ Covid. We were devastated and it’s important we learn from the experience to prevent it ever happening in this way again.