Pauline lives in Trafford with her husband and supports her 90-year-old mum who lives in Burnley. Pauline works part-time as a researcher at the University of Sheffield, she visits her mum at least weekly, picking her up on a Sunday and bringing her home for a Sunday dinner.
Pauline recently completed an Empowered Conversations course with Barbara and Judith. She is one of 3 sisters, she’s the youngest and although she doesn’t live locally, she is mum’s main caregiver. Pauline’s dad died 3 years ago from Vascular Dementia, her mum looked after him at home throughout lock down. Pauline’s mum was diagnosed with Alzheimer’s in May.
Can you tell us how you came to be on the Empowered Conversations course?
Rebecca from the Alzheimer’s Society sent me information about the course. I was feeling on my own, the memory clinic diagnosed mum and then booted her out. I felt alone. The online course helped me, I’ve got a bad back, this course meant I could be at home and comfortable.
What were you finding challenging about being a carer of someone with a dementia diagnosis?
I was getting irritated with mum, I want her to be safe but have a short fuse, so I was getting angry with mum about staying safe. I was frustrated. When I went on the course I was running on empty, I was working hard, we had building work at home, and I had my own health issues.
The course helped me to pause, to be patient, to understand that mum is really trying and it’s not easy for her. The course helped me to hand control back to mum, she wants to do things that she’s always done so I need to let her do it. Understanding that her brain is not functioning in the same way and it’s a struggle for her to explain things clearly or remember things was so helpful. I feel like I have more patience and compassion.
What has the EC course changed for you and your mum?
I valued the tips, techniques and understanding around communication, building my understanding about dementia and the different types of memory.
The emphasis on self-care was like a bell ringing for me. I would normally feel guilty about doing something for me. The course made me stop and think if I could get more support. My sister is now supporting mum a bit more around attending medical appointments which has helped me so much.
I didn’t tell mum I went on the course. I feel that I am a bit softer with mum now and that’s enabled mum to be more expressive with me. I’m calmer so she’s calmer.
She came last Sunday, I was peeling apples and she was sat on a chair behind me. I was making Eves Pudding which she used to make for us when we were kids, she didn’t remember this and I didn’t make a big deal about it. Before I would have been upset about this, now I just let it go.
Mum was able to talk about her feelings of grief for her husband, this hasn’t happened before. I’m more in listening/trying to understand mode, and less in doing mode with mum now. It’s made it easier for her to share with me.
What advice would you give to other people who are caring for a person living with dementia/struggling for a diagnosis?
Remember who they are. They are still them! Don’t correct them and tell them they are wrong. Let it wash over you and be with them in whatever reality they are in. It’s hard, you want them to be in your reality. Accept that you can still have a connection even though they might be changing.
There was a tiny little thing from one of the Alison Wray films on the course about getting a person’s attention. Quite often my mum is zoned out, it’s not about her dementia, it’s something she’s always done. I now say – ‘hey mum listen to this’, it’s so much easier to engage mum with a conversation and I’m using it all of the time. She’s not been interested in joining a group, but she was in a choir when she was younger. I used the technique about going to a Singing with the Brain group and amazingly she said yes and told me that she used to be in a choir when she was younger and loved it.
I’m taking her to the first group next week, I’m not sure if she will like it but I won’t be disappointed if she doesn’t, the fact that she is trying is really good.
In three words can you describe the changes EC has supported.
Better listener, more patient!
Can I just say that the facilitators, Barbara and Judith were brilliant. I could see their skill; it was in a low key way. If a comment was made that took us away from the subject, they handled it brilliantly and always made sure they came back to it without taking any extra time and still covering everything.
They asked searching and challenging questions. It was both challenging and supportive. It was a small group; others were further on with dementia. At first, I felt a bit of a fraud, but I brought the experience with my dad into discussions. It helped me process stuff about my dad. The group was supportive, lovely, respectful and non-judgemental. If somebody was sad and got upset, that was ok. We felt safe. I revealed a lot more than I thought I would, being honest about the difficult bits, things that I don’t like about myself. It normalised the difficult parts.