Linzi lives in Poynton and supports her mum who lives in Salford and has been diagnosed with mixed dementia. Linzi has attended Empowered Conversations and Moving Beyond Words courses over the last 6 months.
Can you tell us a bit about your family life?
Mum has been diagnosed with the ‘d’ word, we can’t use the ‘d’ word, mum can deal with losing her memory, but the ‘d’ word is a downwards spiral. She’s very coherent but her short-term memory is gone which is dangerous because she doesn’t remember if she’s taken her tablets, had her lunch or a drink.
How did you find out about Empowered Conversations?
It was either through Andy (Dementia Support Service) who called me to see how I was doing or through Critchley Café. At first, I was hesitant to take mum to Critchley Cafe, I thought it would be full of knitters, but it is the most amazing place, there’s so much to look at, it feels familiar, and mum loves the almond slice and custard!
What’s the most challenging aspect of supporting your mum?
Not being there, not physically being there. Mum came here for a couple of weeks; it was a lot less stressful. I knew she was happy, fed, she’d had a drink, slept, had her medication. Distance is hard. Spending time with mum is important to me.
What has the courses changed for you and your mum?
One course embellishes the other, it makes the understanding deeper. The initial part of understanding dementia more was really important.
I phone mum every day and start the connection by singing good morning, good morning! It gives me an idea of how mum is by how she responds. Introducing this has been fabulous. Making lighter moments has been brilliant. Mum might not remember a fact or where she’s been but there is a residue from what she has done that I can see in her demeanour.
The courses have helped me to let go. When you are in a close relationship you are always on a path to try and make them better. It’s a pivotal point when you learn to accept mum and the condition, be grateful for what you’ve got and let go of being in control and trying to put things right. It’s stressful for a close relative to feel like they must find the answer. Getting to the point where you are living with it and not trying to overcome it is very calming.
It’s easy to lose the now for the sake of making tomorrow better. It’s how they feel ot what you do that matters and it’s not what you do, but who you are that is important.
What did you get out of the course?
I’m a coach, communication is what I do. I can remember thinking I can’t learn anything from this course. But it’s so different when it’s your family. It’s completely different, the courses are more about understanding than how to speak or what to say.
Intrinsic motivation was a key learning point for me from Moving Beyond Words, to understand that people with dementia can lose internal motivation was empowering. I’m now less demanding of her abilities. She would give it you if she could, but she hasn’t got it. That was massive!
The courses are extremely valuable. It took a weight of my shoulders doing both courses. Being in a room with others in the same boat, which are different but with threads that tie you together. You appreciate each other and can be vulnerable within a circle that is non-judgmental.
It was a privilege to be given this opportunity, to have it on offer from Age UK. Helping with the emotional rollercoaster is such a benefit. Both courses are fabulous! Understand, let go, walk with, rather than control was a huge learning point for me.
Has your relationship changed with your mum since finishing the courses?
I’m mum’s main caregiver, she feels it, if I’m calm about things, then she’s calm about it – it’s a ripple effect.
My acceptance. A lower energy state. If you can be in a calm space, you are giving this to the person. Self-care is a massive part of this, the ability to step away and look after yourself is so important, for you and for the person you are caring for.
In three words came you describe how the courses made you feel?
Held, understood, connection
Holding on to the relationship as opposed to having a fight with the illness. It’s not about dementia, it’s about the person.
