Nikki Gerard, Dementia, United States discussed on How Do We Fix It?
Mother was an along the last age latte literally last week of her life. We started there wasn't a lot to say so my sisters and I would sit around her bed and we would sing songs and at one point she loved the old funny swing songs from the Nineteen Forties and thirties and stuff and at one point we launched into the Chattanooga Nougat you chew and she started off and she remembered all the word. It's just I know I know it is. It's his like a miracle. I Dont Cross his one daunte. Karzai went to which I had such a good time. I went that and I was partnered with this tiny woman. I'm from Jamaica who was at quite advanced dementia. She was very withdrawn. we'd couldn't speak but why 'cause she don't we took to the if your music struck up and kill dont door her life and she was whizzing around and the wonderful thing about that apart from seeing her too so fool that I was like music was flowing through her and she was alive in that moment and also she was my teacher so I wasn't looking after so her she was looking off to me. It was fantastic democratic space in which we will be starting with my father. It was poetry he'd loved poetry the and new poems by heart and he used to say to us when we were children and in fact the last time my for children so him the LAS visited him. We'd you all that and me and sure to my four children we stood around his bad and we started reciting John Masefield St Fever which which is apparently 'cause I must go down to the seas again. The lonely sea in the sky and all I ask is a tall ship and the stars to stay at her by on he he joined in and he couldn't say anything he couldn't say a word by that time but he could recite this poem we would just leaning towards him and we were all all crying and laughing and saying this poem altogether and it was this he looked gone. He looked like like he was no longer there. He seemed like he was no longer that and yet these words that we should have worn groove in him over all the years of his long life. They were still still that I can groove of memory was still there so so the the sole was not exactly exact we're talking talking about dementia with journalist and author Nikki Gerard This is. How do we fix it. I'm Richard. Davis and I'm Jim. Nikki is society in denial about dementia is sending the wrong messages well. I absolutely think so. I think that one of the things that society especially conducive developed rich societies sot is like the United States or like the UK we so value being young being healthy being vigorous corus being successful being purposeful being tournament and in dementia all these things gradually unravel raffled gradually fall away what what about these people who are old who a frail who have no autonomy. You have no purpose who are us. How mercy at the mercy of strangers was about them. Do they not have value and I think it's really profound question. We need to ask ourselves ourselves if we're not old what getting that part of the reason we're in denial by two is because we're so scared about art it is the disease is illness that will most get off as a society now and because we say scared if it on because as gatsby coming our way because it feels us not just with fear but to kind of squeamishness. I think an even kind of discuss it is much easier to turn away. It is much easier to treat people with dementia CIA as if they weren't fully human anymore the same way that we walk past homeless people and date meet there is or what prostitutes and look at them and technolog- I just that's what we're in this together. That's what we do in spades with people with cement were a show about solutions and not every episode wraps up with a nice list of policy prescriptions with your experience you've had now. Do you have advice for someone who is is living with her love. Someone who is in the early stages of this progression what what you know is. Is there anything you wish. You'd done differently with your father. Yes yes and one of the reasons I write. This book is because I wish I'd known at the beginning of his journey any which I knew by the end would have done it better and so one of the first very quite small but very powerful things I'd say that comes a point when someone has dementia when you can't bring them back into the world that leaving you have to accompany them in that I will oh say thing that we often do of correcting people with dementia of reminding them that guessing things wrong of saying no. It's not Monday Saturday today. No it's not nine in the morning. It's midnight which must be so scary and humiliating so that's a small thing but he's very useful to me that too. That's the first first thing the next thing I would say is ought everyday creativity doing things with them. People who have dementia stay the same person is not like you cross the line with the diagnosis into different worlds so they still need respect. They need patients. They need time. They need glove. They need honoring and they need to be kept in the flow of life not pushed out of it. I think that one of the things that I've learned want is to recognize when people have to mention just a bit more vigilant I was the other doused supermarket and there's nobody standing by citrus fruits and she she was clearly confused and ten years ago out of raced pasta in my busy life. I wouldn't have had time. I would have been that not seeing seeing I just went and talk when we chatted and she she talked about how she eat lots of oranges when they were in Spain her husband he was dead man how she didn't know this was going to buy oranges or lemons till quite befuddled when you saw her. What did you say to her first. How did you engage with. I just went back and I said Oh it's hard. It's hard to choose isn't it. I find it hard to achieve. Do you know what you're going to be buying and then we just had this really nice conversation and antique beat ended up by deciding to buy both because she couldn't a mind who have dementia. We all need to be a bit Kinda towards each other recognize people found abilities recognized. Iran vulnerabilities hold out our hands to each other speaking of our own vulnerabilities. Are there things that people who fear that they might be starting to lose their memory or or or are in early stages of dementia dementia that they should do that. Perhaps many people aren't aware of it is clear that those people who who find the onus least psychologically painful are those people who accept it who say it out loud who get an early diagnosis who don't don't hide away with it who refused to feel ashamed of because often why feel ashamed it's an illness. It's an illness like any other illness illness of the brain you talk about several different things that societies are doing for instance dementia villages in the Netherlands Denmark and then dementia training in hospitals. Can we just talk about a few practical things that perhaps APPS can be done. I mean the first practical thing I'd say which is not going to happen here. At anytime. Soon is just money only presents the whole it is so badly resourced based research into it Catholic. No cure said catch should be so much better in help for the carris because one of the things that we haven't talked about is the life of the cat on the life of the care is often overlooked. I mean it's an honest ernest which effects people around the past new has it and then we need to be more aware of that but there are these wonderful endeavors gang around on all over the world. I mean in the US rest in the UK all over the world dementia villages. They weren't really well. We'll say they exactly what they say. which which is that everyone who lives there is someone who has dementia or someone who's carrying for that dementia? The world becomes both can diff. Jeff sealed-off net sidewire. He becomes the whole world said nobody's contradicts them. Everything's geared toward them. Everything is safe for them. They feel it time. That of the villages are kind of made so that they reflect the time that the people would that the older people with their felt comfortable with is not the modern world. It's world that they were at home in I mean I don't know that I'd love to be in that kind of world but it certainly does work some people and then there are that they're the kind of small things going on for instance. There are quite a few residential home that based on the site of nurseries said their little kids and people and they spend time together and that seems great. There are students whose whose accommodation is is in an old person's home person with dementia home so they can be their companion in on the rent is paid and that works really well. I heard of this tastic project recently wear a residential home where people with not very advanced dementia with cooking food for his people. I might just taught me like that was like genius because a that doing something and they're doing it for a purpose so it's not just that they are being taken care of. They're taking care of the people who am I think that sense of losing value and losing purpose when you have the diagnosis of dementia is profoundly distressing. People were diagnosed it or not separated from the life they once led that the same person you don't cross over some invisible line and she ate given a diagnosis assist you the same person you should be allowed to live in the same life and being that life for as long as possible. Nikki Gerard author of the wonderful new book the last ocean journey through memory and forgetting. Thanks so much for joining us on. How do we fix it as being Mike like session. Thank you very much for asking me. Nikki.