Bridging

On dementia and emotional support

For eight weeks in the autumn I left my desk in the middle of each Tuesday and went to my local hospice, where I was met by a woman called Michelle, a bereavement support volunteer. Michelle would greet me with a cheerful smile and stride with her long legs to a room overlooking railway tracks, with a small sofa, two chairs, a coffee table and a box of tissues. I sat on the sofa with my back to the window and I talked. Every now and then a train would rush noisily past and I’d have to raise my voice a little to be heard. 

I hesitated over taking up a place on this free service, made available to my siblings and me because the hospice had supported our mum’s care in the last week of her life. I was coping, I thought, I was journalling and doing my yoga and having a cry when I needed to. But I felt a growing need to speak to someone about the experience of being with my mum as she died. And honestly, this offer of emotional support, the first my family had received in the 12-year-long experience of our mum’s and dad’s dementia, felt too good to turn down.  

A couple of years ago a close friend of mine, the mother of one of my children’s friends, found a lump and was diagnosed with cancer. Still in her thirties, she faced major surgery and months of gruelling treatment. On the handful of days in each chemo cycle when she felt well enough to leave the house I’d see her in the school playground, wearing a headscarf or a woolly hat, and I’d be in awe of her resilience. I knew she’d taken up the counselling sessions offered by the cancer centre where she was treated, and on one of those afternoons she told me that her husband had also been offered counselling. I walked home with the kids that day feeling a glow of appreciation for how enlightened and caring it was of her cancer service to recognise the impact of my friend’s illness on her husband.  

And then I felt a familiar pang, a kind of lonely, baffled feeling. I thought about how my mum and dad were effectively dismissed from consultant care after their diagnoses. How counselling wasn’t mentioned to either of them. I remembered our increasingly desperate appointments with my mum’s GP to try and get effective anti-anxiety medication for her, and the day we moved Mum into her first care home, when she was terrified and lashed out at the staff and at me, grabbing handfuls of my hair, and how I felt when I got home that evening. I thought about the times I’d sat with my mum or dad in a care home lounge on a bad day – of which there’d been many – when they were full of repetitive, agitated frustration or completely unresponsive and I’d felt tears rising, and I’d not been able to stop them or just been too tired to try. And I remembered how on the few occasions when I let my feelings show and got up to leave with red eyes and a blotchy face, passing several members of staff on the way, not one of those essentially kind people ever asked me if I was OK, or put their hand on my arm, or said I know it’s hard. The unspoken message from every member of staff in the care homes and hospitals we interacted with was: don’t make a fuss, just get on with it.

Why do approaches to dementia – now the UK’s biggest killer, affecting more people at a younger age – lag behind? Have old-fashioned attitudes rooted in ageism contributed to shortfalls in knowledge and funding? Dementia has suffered from an image problem, mistakenly seen as a natural part of ageing (a recent survey found that 20% of respondents still think this, while only 60% knew that dementia causes death¹). People with dementia have been hidden from view, cared for behind closed doors by family members, or in care homes which are all too often cut off from their local communities. Most of us want to be capable, independent and on the ball, and the early symptoms – confusion, forgetfulness and a reduced ability to manage the tasks of daily life – are seen as embarrassing, as if people are failing in a myriad of little ways to be proper grown ups. ‘Senile’ has become an insult; physical frailty is mocked as dodderiness. Perhaps these attitudes stem from a deep fear of vulnerability, but even so they are damaging. 

It’s been good to see awareness and understanding of dementia slowly increasing in the last decade, with positive initiatives helping people to be upfront about their diagnosis. Dementia-friendly shops, cinema screenings and cafés, badges which declare a diagnosis have helped, as have the voices of people like the inspirational Wendy Mitchell, who did so much to break the silence around this neurodegenerative disease and showed that it doesn’t have to be a barrier to being active and engaged, out in the world. 

I understand that some people can live well with dementia and that not every day is bad even for those who can’t. I understand that dementia is a slow disease and that many people have it for many years. I understand compassion fatigue if you are caring for a unit full of people with dementia on every working day, and I also understand the get-on-with-it approach – when you’re facing an incurable illness that’s pretty much your best option. But a drawn-out experience can still be tough, and I really hope that alongside this growing awareness, even though the task might seem gargantuan because of the numbers, support for the million or so people in the UK living with a diagnosis, and their families and friends – people who might be feeling scared, heartbroken, confused or powerless – will also grow. 

In those hours with Michelle I did talk about my experience of Mum’s death, in a way I didn’t feel able to with anyone else, and I talked about other things too. Michelle was unfailingly focused, gentle and empathic. In our last session she handed me a stack of postcards with images from nature and invited me to look through them, and keep one if I wanted to. There was one postcard with a bridge over a stream which made me pause. I looked at it for a while and was surprised to find I was crying. The bridge seemed to symbolise Mum’s transition, her crossing from life into death, but as I looked at it I realised that I also had to make a transition. Into a different time, into a new version of myself, without my mum or dad, learning to accommodate loss. 

I keep the postcard on a shelf above my desk. It reminds me of Mum, and of my job of carrying on, and it reminds me of Michelle. Our sessions together were a bridge, too. In her kindness and her attention, she helped me make my crossing, helped me relate to and make sense of my experiences. Sometimes that’s just what we need. 

1. Dementia Attitudes Monitor compiled by Alzheimer’s Research UK, 2023.