A duck out of water: Mum, dementia and care home life
Helen Johns shares her experiences and thoughts on how to improve care home life
April 2023
In 2012 I was quite contented with life. I was due to get married to my long-term partner and happily running a small education consultancy. My world (and that of my two sisters) changed when our mum was diagnosed with dementia and urgently needed 24-hour care. We found ourselves looking for a care home in a crisis situation, but thankfully found one that offered a secure but homely environment. We had high hopes that her anxieties would be soothed by the presence of care staff on hand day and night, that her medical needs would be met and most of all that she would spend her days in the company of those of a similar age and frailty. However, care home life didn’t turn out quite as we expected.
For almost 7 years we struggled to get the care that Mum needed. Carers were kind and polite, but their priority (and that of management) seemed to be around getting things done rather than how residents spent their day. The communal lounge was either a dull soulless room where no one spoke or, worse still, dominated by one person who shouted at everyone else. Poor Mum was terrified so chose to stay in her room. This isolation made the symptoms of Mum’s dementia worse and very quickly she would become distressed.
As I observed Mum’s trauma, I was horrified that she could be more bored, lonely, confused and frightened than when she lived independently. I regularly asked for help from the care team, but we continued with the Lonely Lounge or the Scary Lounge.
Other difficulties relating to her care, meant that I was frequently raising issues with carers, senior staff and managers to try to fix things – but the same things came up repeatedly. It was exhausting and I’m sure I was seen as a difficult relative.
Meanwhile, I made a decision to learn as much as I could about dementia care and discovered how meaningful activity could help Mum and others. This progressed so much that, eventually I changed my career and started working with activity coordinators locally and nationally. I also worked on various projects with my local Healthwatch and became an Expert by Experience supporting CQC inspections.
However, the Snakes and Ladders experience of Mum’s time in that care home continued. We eventually made the decision to move her to a care home that ran very differently in September 2019. Covid struck in March 2020 and after months of separation we lost Mum in April 2021.
For almost 9 years Mum and I navigated care home life together. It was far from easy, and it changed us both. I’ve now written it down in a memoir. It was difficult to write, but I wrote it to convey how Mum felt, why she felt it and how that drove me on. I want to empower others who find themselves in my situation. The book tells the story from a resident’s (and relative’s) perspective and considers ways that we can come together with care teams to help residents thrive.
Since writing the book, people have asked me what I think needs to change about care home life. There are many things I could point to, (staffing levels, training, funding etc.) but there are two things that I feel would have made the biggest difference to our story and, I know now, to other residents’ experiences.
Care home teams need to have a greater focus on:
How a person living in their home spends their day: Rather than spending all their time ‘doing tasks’ around residents, we should empower staff to ‘being with’ people. One way is through embedding meaningful activity as an essential part of care.
Relatives/Friends Involvement: If we accept that everyone (including a care home resident) has a right to family life, then ‘the system’ needs to make that possible. Care home teams need to actively demonstrate that they are working together with relatives as true care partners rather than having them relegated to ‘just visitors’. One way is through ensuring that each person has the legal right to a Care Supporter – as defined in ‘Gloria’s Law’.
I know there are many other things that we could add to this list and the problems in the sector can seem overwhelming. Hard working care teams need our support and relatives often want to feel more involved. Together we can significantly alter the culture of care to provide a better way for all of us.
Helen Johns, author of ‘A Duck Out of Water: Mum, dementia and care home life’