April 20, 2020
Visits to a loved one living in a care home are vital, so what happens when lockdown makes that impossible? Lisa Burke, whose 80-year-old mum Celia has Alzheimer’s, shares her experience. Lisa is our Head of Champions, helping to grow our Nourish community
'The week before Mum’s care home officially closed for family visits, I made the heartbreaking decision not to go in to see her. I just couldn’t risk unwittingly spreading coronavirus to her, the other residents, or the staff. Her carers are angels but Mum’s condition means she often gets scared, and when I’m there I can give her a cuddle and comfort. It was so hard knowing I wouldn’t be there to hold her hand when she called out for me.'
'Mum was widowed at age 49, when I was 16, and has always been a huge part of family life. I have two sisters who live close to me in Northampton, and a brother who lives in the US. Mum would come on holiday with us every year and we have many happy memories of our annual trips to Norfolk or further afield. Mum had such a full and active life. She played darts and skittles, went to the gym, and had lots of friends.'
Eight years ago, my sister and I began to notice that Mum would had started to forget things. And when Mum went to visit my brother Stephen in America on a two-week holiday, he validated our thoughts. I took mum to the GP but it took a long time before her condition was recognised. We tried to carried on as usual but in 2016, on a big trip to Norfolk with all the children, grandchildren and great grandchildren, the confusion and memory issues became more apparent and we knew we had to make the difficult decision for Mum to go into a care home.'
It was on this family holiday that Lisa first realised her mum had memory issues
'I remember the instant I realised my mum would be diagnosed with dementia. She was being given a test for Alzheimer’s and was asked to draw a clock, but she just couldn’t do it. The connection in her brain wasn’t there. She continued to live alone at home, with my sisters and I looking out for her, but her condition gradually worsened. I’d have a phone call from the neighbours, saying Mum was at the bus stop at 6am. She would leave the back door open or the gas on, or make her way into town and then not be able to find her way home. We’d care for her and take it in turn to have Mum for dinner so she didn’t need to cook but in 2016 it became apparent that she couldn’t live independently any more.'
'The decision was made that Mum would need to move into a care home. I’m hugely proud that my siblings and I took that journey together; we talked a lot, planned for it and chose an outstanding home together. I’d wanted Mum to live with me and my husband Georgie, but came to realise that we just wouldn’t be able to give her the care she needs. I still find that difficult, although it helps that until now I’ve been able to see her so often.'
'Towards the end of 2019, Mum’s Alzheimer’s really took hold. She had to move from the home’s residential wing to the memory floor, where she could be given specialist care. It was a dreadful moment as I wondered, where does she go from here? Anyone who has a loved one living with dementia or Alzheimer’s will know that change can be difficult for them. As well as moving room, Mum had been prescribed a different medication that had a terrible effect and stripped away her dignity. Her behaviour was challenging, she became incontinent and she virtually stopped eating; the only thing she would take were shot glasses of the Nourish Drinks I’d bring in for her. Before Christmas, I really felt we wouldn’t have her for much longer. Thankfully, she improved so much once her medication was changed and began to settle, with a familiar routine of visits from me, my daughter and my sister. Then the lockdown happened.'
'I have great confidence in the care home’s protocols around Covid-19. They have sufficient protective equipment for the staff and I am blessed that these wonderful people care for Mum as if she was one of their own. The temptation is to keep calling the home to check on how Mum is but I’m mindful that the residents are priority and, even as family, we need to put our needs aside so the staff can focus on caring for our loved ones. What’s really special is that the staff organise Facetime calls twice a week between residents and their family members. On our last call, Mum told me the image on the screen ‘was a lovely picture’ of me, before making me promise I would come in and see her. Until then, I’d convinced myself she didn’t know if I’d been or not. I put down the phone and cried.'
'I’m shocked that those who work in care homes aren’t considered frontline staff as NHS workers are.When I realised that wasn’t the case, it floored me. I thought, ‘How are they coping, looking after their families and doing their shopping? Why can’t the Government recognise their worth?’ I’m blessed that my mum is in the right place for her and is being looked after so well. If there’s one positive result to come out of this terrible experience, I hope it’s that care workers get the recognition they deserve.'
Lisa and her mum dancing at a party at her care home,
before Celia's Alzheimer's progressed