Doctor battles for access to dying mother
Angela McIntyre, retired emergency doctor, speaking at our event in Parliament on 9 March 2022, ‘Guaranteeing the right to maintain contact’
My dear 93 year old Mum died last August after a long and debilitating illness which left her bedbound, unable to move and dependent on carers for all of her needs. Due to government guidance implemented by the care home I was not allowed to see my Mum for 13 months and then for a total of 10 hours until the last five days of her life when she could no longer eat, drink, speak or recognise who I was.
When Covid struck in 2020 I was visiting my twin sister in Australia. I visited Mum on 12 February and returned four weeks later to find Mum’s care home, her home for the last six years closed to all visitors, ahead of the first lockdown. I was hopeful for a short visit as my Mum’s room on the first floor was easily accessible by the fire exit stairs and as a doctor familiar with PPE. My email request was unanswered so I drove over to drop off some presents for Mum (a round trip of three hours) and asked to see her – I was told in no uncertain terms that I would not be allowed in.
The home remained closed until August when visits were permitted for one nominated visitor weekly for 15 minutes in a downstairs room. Realising that this would be difficult for Mum as she hated being hoisted, I asked if it would be possible for my sister (the nominated visitor) to visit in her room and queried the 15 minute time limit. I received this response ‘if your mother becomes distressed by the hoist and does not wish to be assisted to the visitors room, the visit will not take place. Whilst government guidelines and local policies have been used to risk assess visits all visits remain at my discretion. Please note I am not guided by other homes’ risks assessments.’ I voiced my concerns that this was discriminatory to disabled residents like my Mum but was informed that it was not, because other residents were in a similar position! A further email stated that ‘visiting in her room would only be permitted when it was deemed that she was dying.’
My sister visited Mum five times, before the home closed again. Both found the experience very distressing. I skyped Mum after one visit when she had been returned to her bed. Her only memory was that she had been ‘thrown down the stairs’.
Angela speaking at our event in Parliament in March 2022 © PA Wire, Stefan Rousseau
I was lucky that I was able to have Skype calls with Mum – the success of each booked call was dependent on the facilitating carer who sat next to Mum to hold the ipad and help her engage. 30 different carers, all wearing masks and mostly strangers had to listen to all my conversations and interactions with my Mum including our singing! It’s a long way to Tipperary was a particular favourite.
In September we dropped off some presents for Mum. I was met by a carer I knew well. She was standing at the bottom of the fire exit stairs which led up to Mum’s room. I saw the stairs and collapsed in floods of tears. The carer tried to console me but I am afraid I just lost it and swore angrily about the attitude of the Manager. Four days later I was reported to the police who fortunately were very kind and understanding. A very unpleasant letter from the care home owner followed demanding a written apology, threatening to report me to the GMC and legal action for having written in my weekly blog that Mum had chronic fungal infections of her nails! I became very anxious and stressed at the hopelessness of my situation. I really missed my Mum.
One evening when I rang, the carer answering the phone happened to be in Mum’s room. When Mum heard it was me phoning she asked ‘why doesn’t she come and see me anymore?’ I burst into tears. My request for a visit at Christmas was ignored even though other homes allowed two visitors at Christmas as per the guidelines. From January all my Skype calls were limited to 15 minutes. The first time our call was terminated both Mum and I burst into tears.
The home closed again after Christmas – all of the residents were vaccinated on New Year’s Eve but in late February most of the residents and the staff tested positive for Covid. I was informed that very few of them had any symptoms and that they all made a good recovery.
I was eventually allowed to see my Mum only because my sister who had found her visits too distressing asked if I could be the nominated visitor. She did not see my Mum again. From 16 March I was allowed 30 minute weekly visits. Following a negative lateral flow test I was escorted up to Mum’s room via the fire exit staircase. A knock on the door would signal the end of the visit. Sometimes it took over 15 minutes for Mum to wake up and engage. On one occasion I could not wake her up and her breathing was so shallow with 20 second pauses that I thought she was dying. The carer still escorted me out of her room in floods of tears. On another, after a very distressing visit as Mum had sobbed and cried in pain I was reported to the Manager for pulling my mask down to kiss her goodbye – I received an email telling me how disappointed she was that I had endangered the safety of all of her staff and the other residents! By this time both Mum and I were doubly vaccinated and tested and most of the residents and staff had had Covid. All my subsequent visits were to be monitored closely!
Mum’s condition deteriorated and on 1 August a compassionate carer let me spend a few hours with her. My husband rang the following day and was told that I could visit for as long as I liked providing I booked first. I stayed by Mum’s side for the last 30 hours of her life. Following a distressing night she died peacefully on the afternoon of 5 August.
I felt emotionally drained, sad and angry that so many people have had to endure separation and isolation as a result of draconian guidelines with little scientific basis. I believe that every resident should be allowed to have an essential visitor. This should be enshrined in law and not left to the whim of a care home manager. The precious time that I and many have lost with our loved ones can never be recovered.
Some care homes have done wonderful work allowing families to be reunited – sadly for me and Mum, this care home was not one of them.
Angela McIntyre
Retired emergency doctor and speaker at ‘Guaranteeing the right to maintain contact‘, Parliament, 9 March 2022