Caring for someone with Alzheimer's disease

What is it like to live with Alzheimer’s? Chris Bane speaks about his personal experience of looking after his mother, who has had Alzheimer’s for a few years now…

Chris Bane - I was living abroad when she was first diagnosed in 2016 at 67 years old, and I couldn't quite believe that mom had Alzheimer's. I thought 67, this is not a condition at that time that that affects someone so young. Mom herself doesn't think she's got Alzheimer's. She didn't at the time. She said, I seem to remember that's a disease for old biddies.

Chris Smith - What did you notice about your mum that first raised the red flag? That something might be up?

Chris Bane - One specific moment, actually, where we were visiting my brother who lived abroad, and she went upstairs to go and get something out of her bedroom and got lost. Couldn't find her way back downstairs. Mum, she did have a tendency to repeat herself, but that was a kind of light bulb moment of it's more than just, you know, repeating herself.

Chris Smith - And she still doesn't have insight into the fact that she has this condition because other people who have Alzheimer's, Terry Pratchett was quite frank and said, I've got this. And he knew he had that obviously he was much more vocal about it when it was early on in his diagnosis. Is she coming to realise that there's something wrong now or does she just forget?

Chris Bane - As she is right now? I honestly don't know what's going on inside her head. I'd love to know what she's thinking. She was a nurse all her life, so I'd imagine that she had some prior knowledge about Alzheimer's, and maybe, you know, in my thoughts, I'm thinking she didn't want to accept that because she knew that accepting it was actually quite a scary proposition because there was nothing you could do. I don't think there was any period in time where she's actually accepted it.

Chris Smith - How is she now? What sort of function does she have and what's your role in looking after her?

Chris Bane - I work full-time, so I also have a full-time live-in carer with mom now. She's lost all of her vocabulary essentially. I'm the only person who she remembers the name of, which I hold onto a lot. So, and that's those points, those little contacts where I'll give her a hug or stroke her, and she'll look at me and smile. I can still make her smile and that's the only quality of life she's still got. And that's the thing that's keeping me from putting her in a more formal care setting in a home, because we still have that connection. It's been difficult watching that because obviously mom was such a vibrant person and such a great mom.

Chris Smith - There are two sides to this equation, aren't there? In the sense that you've got the person who has the condition and in some cases they don't have much insight into what's happening. And then you've got the people who are trying to care for the person they care about and that obviously takes a huge toll emotionally, but also financially. So how are you coping with those sorts of challenges?

Chris Bane - I first started caring for mom in 2021 and started thinking about formal care. The average life expectancy, as I understand it for a person with Alzheimer's is 11 years, but it could be up to 20 years. And when you look at the basic care costs at that time, they've risen significantly in the last three years. We were looking at having to spend essentially a million pounds on care, which was such a frightening number.

Chris Smith - Is there a good support network out there to help people like you who are trying to remember to be a son, but also having to be a carer so that you can get some help, get some advice, and also get some time to decompress.

Chris Bane - The local GP has been great. Social prescribers have been really good and they understand mom's needs. Dementia UK, Alzheimer's Society, Alzheimer's Research, Age UK, they all have good information on their websites. There are local events, dementia choirs that happen. So there are but there's not enough. I've often equated sort of the experience of dementia to it's a disease or a condition that very much certainly from my experience, remains at home. If you were to get a diagnosis of a different disease, cancer, you would have that support. You'd say, okay, this is your treatment plan. You can do this, you can do that. With the dementia diagnosis, it's just literally one line on the GPS letter, I certify that Shirley Bain was diagnosed with Alzheimer's. That's it. They're very limited things that could be offered and it feels like it just stays at home behind the front door.