We See You – Angelie

Dementia will affect one in two of us in our lifetimes. Caring for a loved one with dementia is often tough and exhausting. People don’t realise how all-consuming it can be. Few are aware of what help is available. Many dementia carers struggle to cope and nine in ten reach crisis point.

Angelie shares how she felt after her mum’s diagnosis of Alzheimer’s dementia, which has now progressed to Lewy body dementia, and what she has found useful about our support.

“I first came across Dementia Carers Count when I saw a poster at a memory clinic.”

“I found it really helpful to work my way through Dementia Carers Count resources.

Information was broken down into smaller chunks so that it was possible to focus on the specific issues impacting us at the time and as/when I needed to. I could also learn about issues likely to impact us in the future.

Feeling informed and focusing on the near-term situation helped to reduce the fear factor. The information was practical and implementable.

From the beginning, I felt that any sessions I joined were safe, honest forums. It made a big difference that those leading the forums had real experience of dementia, so while they provided factual information, it didn’t feel theoretical. It was often supported by examples from their own experiences, which made it all the more valuable.”

“I wasn’t at a crisis point, but last year I was offered a few counselling sessions which I found useful.

Mum’s Lewy body dementia was progressing quite fast, the amount of care she needed was changing and family dynamics had broken down.

I was at a point where I felt isolated, was keeping many plates spinning and feeling angry that minimal responsibilities were taken on by others.

My counselling sessions gave me the space to honestly express the situation without having to keep a façade in place that everything was ok.

Just that small thing helped me get in a better frame of mind and feel heard.”  

“When the peer support sessions started, I signed up and have found them a valuable support network.

The groups are small enough that everyone who wants to talk has the opportunity. I have found the DCC staff, as well as the other carers on the calls, hugely supportive.

Even though we were all essentially a group of strangers who have only ever met on Zoom, I found it so helpful to talk with people who understood, as they were going through similar experiences themselves.

There was common ground and no theoretical empathy. I didn’t need to be careful about how I worded things because everyone understood.

I’ve also been part of a practical peer support group which has been helpful. As mum’s dementia progresses, just when I think I’m ok and know what I’m doing there is something new to learn and get my head around. So it’s great to have somewhere to ask questions and hear the experiences from others on specific topics.”

“I can’t speak highly enough of Dementia Carers Count. I can’t leave mum on her own and I want her to be at home for as long as is possible, but it can be very isolating, lonely and at times overwhelming to be a primary carer.”

Dementia carers do so much, but are often hidden from public view or taken for granted. 9 in 10 say they are reaching crisis point.

We’re making dementia carers like Angelie visible through our We See You campaign.