I am currently reading 'Still Alice', by Lisa Genova on the advice of a friend and I have just spotted the new trailer for the movie adaption. Starring Julieanne Moore and Kristen Stewart, this is a movie about one woman's early onset dementia diagnosis. Alice Howland is a happily married woman with three grown children. She's a celebrated Harvard professor and starts to notice that forgetfulness is affecting her life. She then receives a devastating diagnosis: Early Onset Alzheimer's. Watch the first clip from the movie here:
This video above is exactly why I love Alzheimer's Australia - always thinking outside the square. Here, Alzheimer's Australia SA present a video shining a light on the LGBTI community. From their ‘People in Dementia and Health Care Services’ Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) Community Dementia Project comes this video showing the mother-daughter relationship between Mary and Thelma, as they share their emotional journey with#dementia- from diagnosis to managing day-to-day living. And guess what people, this is as real as it gets. Every word Mary says is the truth: you do not know what it's like until you are living it daily. That is why it is so grating when someone says, "they seem fine to me!" Daughter Mary has moved states in order to care for her mother. She has moved away from her longtime partner Lyn, and it's hard to be away from her, as she explains in the video.
Funded by the Commonwealth Department of Health and Ageing National Dementia Support Program for People with Special Needs, this training video was designed to teach health care workers as well as members of the general public about dementia in LGBTI communities.
To find out more about their LGBTI Dementia care services and training, call them on (08) 8372 2100.
Almost a million Australians will have dementia by the middle of the century. Can we hold back the coming 'dementia tsunami'? Says Professor Henry Brodaty, from the Centre for Healthy Brain and Ageing
“People who are overweight, have type 2 diabetes, high blood pressure are at increased risk... Current smoking is a risk. So these are all things we can do something about.”
Professor Henry Brodaty
Meanwhile, Associate Professor Michael Valenzuela, from the Brain & Mind Research Institute suggests cross-training your brain for a healthier life:
“Doing this type of training in a group fashion, in a supervised way, will make you sharper, a little bit more mentally alert and able to handle complex information.”
Associate Professor Michael Valenzuela
In an important show tonight, Tracy Bowden will explore the latest developments tonight on ABC TV's '7.30'.
You can follow 7.30 on Twitter here:@abc730 And you can follow Tracy Bowden on Twitter here: @tabowden
Professor Brodaty is such an authority on dementia in Australia - I included him and his philosophies in my book 'The Australian Ageing Generation Handbook'. Read more about that here.
One of the most honest, raw accounts of dementia is in this exceptional article, published on the Huffington Post site, and written by Dawn Vance. Titled 'Dementia - They Don't Tell You These Things'… it is searingly honest.
These two pars stopped me in my tracks, made me sit upright and nod my head furiously, and maybe even let out an expletive, along the lines of 'hell, yes!' Dawn writes: They don't tell you how to deal with the crushing realisation that she's never even going to be able to phone you again…
They don't tell you how to channel the anger you feel when you realise that your fellow 30-somethings' lives now revolve around marriage, mortgages and kids and yours revolves around a terminally ill, confused old lady who doesn't even know who you are. They've chosen their responsibilities; you'd give anything not to have yours. What would I add to this? They don't tell you how you'll feel when people you know ignore you because THEY'VE decided how they should react your loved one's death - it's like they're saying: 'Well, you were a carer and she seemed hard work, so now you are relieved, right? You certainly appear to be having fun. That means I don't need to call you or make any contact with you. Because you probably need space…' or some shitty version of this tripe. No, they won't tell you that. They won't tell you these things. They also won't tell the above mentioned shitty 'friends' these things. But they will find out, in time, just as you did… Read the rest of this fantastic piece here.
On Friday, I had the pleasure of being interviewed by longtime radio announcer Tony Tardio, for the Rete Italia radio network, which broadcasts to 32 stations Australia-wide. You can listen to a repeat online by clicking here, on Sunday 9 November, from 10am. UPDATED: Here is the full interview with Tony Tardio It's a 20 minute chat with Tony about the experience of the Italo-Australian carer and what that means to them now, and the implications of ongoing care in the future. I talk about what it was like for me as a carer for my beloved mother, who died in August, and what people who are going to undertake the caring role should expect. I also explain what is in my book, 'The Australian Ageing Generation Handbook' and how it can help carers navigate who to call, what to do, services to access, and reading the stories of carers from all walks of life and what they have experienced or are still experiencing now. Some of these stories, in the chapter called 'My Life As A Carer' are so raw and honest they are completely confronting, but they offer such incredible insight. The life of a carer can be very lonely and upsetting and at times, quite distressing. These stories show that all of it is very 'normal' in the world of a carer, that everything is normal. My other favourite part of the book is the chapter on people working in the care industry - these are nurses, dementia nurses, carers, volunteers, chaplains, doctors, geriatricians… all of them. I interview them in my book and what they say about your family and loved ones will blow you away.
In Sydney, the radio frequency is 1575 on the AM dial.
Sorry. It can be a hard word to say. And yet, it's just five letters. It should roll off the tongue pretty easily. Some people, well they find it really hard to say… and, sadly, you will soon see they make it all about them. This will become all the more obvious when you lose someone you love. If it's someone you have been caring for, and they have been sick for a while and they are elderly, some people may even deem that condolences are not necessary. 'She lived a good life', they think. 'Her carer must be relieved', they think. 'Wow, looks like she's having a good time, if her social media photos are anything to go by', they think. 'She's coping well, she doesn't need me. She has lots of friends anyway, and she seems to be doing fine,' they think. When you do speak to them, they may say one of these things: "Sorry I haven't called you… I didn't know what to say." "Sorry you haven't heard from me. I feel so bad. I wonder what you think of me for not having called you." Both of the above are not about you. They are about them. And this will grate on you so much, especially when you are in that state of mind where you have a heightened sense of awareness of your emotions, which is amplified soon after the death of a loved one. The trick, I have found, is to just keep your cool. Deflect, and move on. You are in a delicate state of mind, anything can set you off, you are highly emotional. You are in mourning. An upcoming blog post of mine will definitely be titled: 'What mourning looks like'. Because I can tell you that mourning doesn't necessarily have to be 40 days of sadness and making yourself scarce, and not having a laugh at all. Or one year of wearing head to toe black, as the Italians do. For longer than a year, in the old days. No, mourning is whatever you want it to be, whatever you see fit for you. You will find that if you are a mother, especially a mother to young kids, mourning will be fast forwarded somewhat, like it or not. This is not a bad thing; it'll mean you are not moping around the house and making the whole home depressed, bringing the vibe right down, even though they are very much wiling to support you and love you, however you present to them. Kids are resilient, yes. However, kids absorb much sadness, and you will do well to pick yourself up by the bootstraps and 'fake it until you make it.' That is, smile and laugh with them, make them smile, and you will start smiling too. The deep, deep sadness will hit you anyway. I have found it hits me when I least expect it. At the grocery store. Talking to a stranger. Helping an elderly lady cross the road. All of these may leave you crying, no sobbing, at random. Okay… all these things actually happened to me. My grief is still deep, whatever people think, how ever well people think they know me. How ever much they see me smiling at school pick up, on a Facebook photo, or passing me on the street. Me: I have a gazillion Facebook friends and now that the sadness filter is dialled down several notches, and I am back to the real world a little more (two months after my mum has died), it is even more obvious that some people who are apparently my Facebook 'friends' have not even offered a word of comfort about my loss. These friends are about to be defriended. They have no place in my life if they can't even step up to say, "I am sorry I have nothing to say. But… sorry. This must be a shit time for you." That's the thing with death and mourning. You only really, truly understand it when it happens to you. Until then, it's just a concept. A thing that happens to other people. A thing that, deep down, you are terrified of, and fear coming into YOUR life. Life without having experienced any kind of grief can be pretty selfish. And why wouldn't it be? Life is about your next adventure, your next holiday, happiness and fun and shiny new things and experiences. Life is not about that boring, depressing stuff: crying, mourning, feeling old, closing chapters, picking up the pieces. And when your life has not been tainted by death, you don't want to be around it. It's almost like you might think it's contagious, like it might detract from your own happiness. Or you may be one of those rare gems: a truly, to-the-core empathic person who has not experienced death first hand, but is well versed in reaching out, because that is what you have grown up around, or what your parents taught you. It doesn't matter that everyone you love is still near you and with you and you can enjoy them everyday, and pick up the phone for a chat or advice, or pop around and see them. You still get grief. The thought of losing parents is something you are tuned in to, and you can relate to people who have already lost someone. This may be partly because you are a decent human. And partly because it scares you senseless that one day you will have to say goodbye forever to your mother and father. And so, you reach out to your friend in mourning, not knowing what you'll say, but you know it makes you feel better after you've seen them, just being there for them. And you KNOW they will be by YOUR side when your life goes to shit one day. Because it will. I say that I am fortunate - yes I am. Although, at age 42, I have now lost both my parents and it had cut me deep, my dear mother taught me to have genuine empathy, and taught me how to care for others (it's how and why I cared for her so well until her death, I know it). And my dad taught me to step up, no matter how hard or how busy you are. When someone needs you, you go running. It's that simple. It's not about you; it's about them. Sorry. It's not hard, people. What are your experiences on this? Feel free to share.
It's Carers Week this week in Australia (Oct 12 - 18), and these are just a few reasons why I believe carers are the most important people on the planet:
- Australia's population currently stands at 22 million*. In 2012, there were 2.7 million people in Australia who were providing informal care to an older person or someone with a disability or long-term health condition, according to the Australian Bureau of Statistics (ABS). (*Australia's population now at 23 million; taken from 'The Australian Ageing Generation Handbook', by Josie Gagliano).
- Dr Paul Jelfs from the ABS says the Survey of Disability, Ageing and Carers ('SDAC'; 2012) captures important information about caring in our community:
"Carers not only make a huge contribution to the lives of the people that they care for, but they are also essential in supporting the formal care system on Australia" "Being a carer can be a substantial commitment, with 40 per cent of carers reporting that they spent 40 hours or more per week providing care." - "Alzheimer's Australia's market research suggests that some 1.2 million Australians are providing support and care for someone with dementia. This can be anything from a bit of shopping to 24/7 care." - Ita Buttrose, foreword from 'The Australian Ageing Generation Handbook', by Josie Gagliano.
"I feel blessed that we were able to share this with her. We got the chance to nurture her as she had nurtured us. We all grew so very much, my sons learned tolerance, patience, compassion and true love for their nan, in good health and bad. As for my husband, I gained a new respect for him, and deeper love as I watched him tenderly care for my mum." - Rosemary, an interview taken the chapter 'My Life As A Carer', from 'The Australian Ageing Generation Handbook', by Josie Gagliano. I could go on and on and on. Carers are the lifeblood of our society, people! The impact they have on making your life easier is immense. Have a think about it. If you are a caring for a parent, you are likely taking on the bulk of the role to make life easier for other siblings. That's not why you are doing it; of course. But a by-product of your sacrifices means that everyone in the family gets to enjoy your parent. Carers quietly put their life 'on hold', give up job opportunities, or take infinite sick days, or take annual leave to care for a parent out of hospital and requiring rehab when they get home. If that person is you, happy Carers Week! You deserve all the fanfare in the world, you deserve to be acknowledged, heck… you even deserve a little break! If you are supporting someone who is a carer - the carer's husband or wife, sibling or friend - know that the carer you love is very, very special. Don't ever forget it. So, here's to you, dear carers! My favourite part of my book 'The Australian Ageing Generation Handbook' is the chapter on carers. I interviewed so many beautiful people, and each story was more emotional than the next. It showed true resilience, grit, heartbreak, honesty; there are deeply upsetting stories, and deeply inspiring stories. And deeply moving stories, and what I hope is that whoever picks it up in a bookstore and has a flick through stops right at THIS chapter and says, "Oh my… this is ME. This is my story!" If you like, you can buy the book (in-store or online of as e-book) by going to this link.
'Caring for the Ageing Generation' - my interview this morning on Radio Adelaide, with Angus Randall and his show 'Breakfast On Radio Adelaide' - broadcast on 101.5FM. Here is Angus:
The site's podcast reads: "Every 68 seconds, someone develops Alzheimer’s disease. A new publication ‘The Australian Ageing Generation Handbook’ aims to help sufferers and families deal with all aspects of Alzheimer’s and dementia. Angus Randall talked about the book with author Josie Gagliano. Produced by Ella Brown and Jennie Lenman." You can listen to the whole clip here on their site. Or, you can listen to it here. I really enjoy doing radio interviews, and I will talk about this topic anywhere, anytime, and for as long as possible. I honestly have so much to say about this topic, I could be on radio for hours. If anything, the time limit is a hindrance! I am grateful to expert radio hosts who reign me in a little so I take a breath in between their questions… I have so much to say! I did this interview just before drop-off for a school holiday activity for my kids - tennis day camp - and if my beloved mum was still alive, I'd have been heading off to her place for the day to care for her after that. It's a juggle anyone caring for a loved one, and particularly people from the 'Sandwich Generation', will understand. I continue to salute you. You can listen to Radio Adelaide online anytime here.
World Alzheimer's Day 2014: here's what should know right now. - Alzheimer's is a type of dementia, not the other way around (see the list below). - Dementia is a terminal disease. People eventually die from dementia. - There is NO cure for dementia. - In Australia, dementia is the third biggest cause of death, after heart disease and stroke (cancer does not even make the top 3… dementia comes before it). - It's called 'the long goodbye' as the period of time between diagnosis to death can be a lengthy one… often years. - Dementia is not just about losing things, or forgetting where you put your keys. This can a sign of dementia, yes. However, dementia is debilitating and in the advanced stages, it affects the mind, the body, and can lead to involuntary weight loss, can affect the ability to swallow, and more. Dementia is a degenerative disease. - The kinds of dementia include: Alzheimer's disease, vascular dementia, dementia with Lewy bodies, mixed dementia, Parkinson's disease, frontotemperal dementia, Creutzfeldt-Jakob disease, Normal pressure hydrocephalus, Huntington's Disease, Wernicke-Korsakoff Syndrome. - Again, it's important to understand: dementia is fatal.
- Dementia is NOT a normal part of ageing. Not all who are elderly are diagnosed with dementia. - Each week there are 1600 new cases of dementia is Australia.
- By 2029, Australia will be in need of more than 150,000 paid and unpaid carers for people with dementia. - If you think dementia is someone else's problem, think again. Most of us will be affected by dementia - be it as someone receiving a diagnosis or as someone caring for someone with dementia - in our lifetime. What are some things you know about dementia that you have learned along the way? Share! Here is an infographic with various stats and facts and more:
An intriguing and important new device for people with dementia was shown on Australian TV last week - and it's an invention by two Australian brothers. Peter Apostolopoulos and Paul Apostolis were profiled on Australia's Today show on September 14, 2014.
They're from new Australian company mCareWatch, founded by Peter and Paul, and they have developed the SOS Mobile Watch, which looks like a watch and tells the time just like an ordinary watch, but is also a monitoring and SOS alarm system with an emergency/medical alert call button, phone and GPS tracking device. The watch is linked to the Optus mobile digital network and connects its wearer with up to three carers via their smartphone. Wearers hit the SOS button and the watch automatically calls the connected carers.
Options include $399 outright or $39 per month plus $69 set up charges, and includes the watch, charger, emergency calls, SMS and data charges.
Be mindful though, that at some point any kind of device could be difficult for someone with advanced dementia to even operate. My recently deceased mother had a back to base alarm; she wore a pendant around her neck, and there was a phone nearby which, when activated by the button on the pendant, would enable someone to come on speaker phone and ask if she was okay. It did the trick for a while, but became pretty much obsolete when she was no longer capable of working out what to do with it. It was kinda heartbreaking, yes. I decided at that point to send the whole device back). This Australian device is a sensational new product to help those in need, and their carers. Watch the entire segment here from the Today show. And find out all you need to know about the mCareWatch by visiting their website here. Here are some intro videos to get you familiar: <iframe width="560" height="315" src="//www.youtube.com/embed/Ix3CJR8eOEk?list=UU0WXey3T9GWw_jHgjJBhKAg" frameborder="0" allowfullscreen></iframe> <iframe width="560" height="315" src="//www.youtube.com/embed/0mPO5kugCbI?list=UU0WXey3T9GWw_jHgjJBhKAg" frameborder="0" allowfullscreen></iframe> <iframe width="560" height="315" src="//www.youtube.com/embed/M2XhWk02MJ4?list=UU0WXey3T9GWw_jHgjJBhKAg" frameborder="0" allowfullscreen></iframe>
Someone asked me today how I was doing. It was at my kids' school 'Harmony Day' and the sun was shining. I recalled that at the 'Harmony Day' last year I used the brand new wheelchair to bring mum, all rugged up, to see my kids - all dressed up and parading their outfits with the rest of the school. My mum in law came too. I was such a big, big project, but I was determined. Mum enjoyed the day; I looked at last year's photos this morning and she was much chubbier, healthier in the face. Certainly a little more alert and appreciative to be there than she was to be anywhere in the past few months. It cut me up. BUT: she was there. This year she was not. And so, when a fellow mum asked me how I was today I said: "You know, if you had an operation and you were missing a limb, the pain would be unbearable, right? It would actually physically ache. That's how I feel." Those left behind feel that pain; those who die know nothing of it. This is what struck me when I read this, below. The new chapters we simply MUST begin when someone we adore dies. And what they can teach us, even when they are no longer here. This below is a piece - the final one, in so many ways - by UK blogger Charlotte Kitley. She wrote regularly for 'The Huffington Post' UK. Below is the intro and an excerpt:
Charlotte has blogged on The Huffington Post UK since 2013 and sadly passed away on Tuesday 16 September from bowel cancer. She wrote one final post that she wished to share with all of her readers. We are honoured to offer it to you here.
As you read this, I will no longer be here. Rich will be trying to put one foot in front of the other, to get by, a day at a time, knowing I will no longer awake next to him. He will see me in the luxury of a dream, but in the harsh morning sun, the bed will be empty. He will get two cups from the cupboard, but realise there is only one coffee to make. Lucy will need someone to reach for her hairband box, but there won't be anyone to plait her hair. Danny will have lost one of his Lego policeman, but no one will know exactly which one it is or where to look. You will look for the latest update on the blog. There won't be one, this is the final chapter. And so I leave a gaping, unjust, cruel and pointless hole, not just in Halliford Road, but in all the homes, thoughts and memories of other loved ones, friends and families. For that I am sorry. I would love to still be with you, laughing, eating my weird and latest miracle food, chatting rubbish 'Charleyisms'. I have so much life I still want to live, but know I won't have that. I want to be there for my friends as they move with their lives, see my children grow up and become old and grumpy with Rich. All these things are to be denied of me. But, they are not to be denied of you. So, in my absence, please, please, enjoy life. Take it by both hands, grab it, shake it and believe in every second of it. Adore your children. You have literally no idea how blessed you are to shout at them in the morning to hurry up and clean their teeth. Embrace your loved one and if they cannot embrace you back, find someone who will. Everyone deserves to love and be loved in return. Don't settle for less. Find a job you enjoy, but don't become a slave to it. You will not have 'I wish I'd worked more' on your headstone. Dance, laugh and eat with your friends. True, honest, strong friendships are an utter blessing and a choice we get to make, rather than have to share a loyalty with because there happens to be link through blood. Choose wisely then treasure them with all the love you can muster. Surround yourself with beautiful things. Life has a lot of grey and sadness - look for that rainbow and frame it. There is beauty in everything, sometimes you just have to look a little harder to see it.
More about the beautiful Charlotte from her 'The Huffington Post' bio:
I'm 35, a slummy mummy of two gorgeous kiddies aged 3 and 5, owner of a disobedient black Labrador and wife of a very understanding and patient husband. I (allegedly) listen to too much Take That, can whip up a mean cup cake and am a hopeless, though wildly enthusiastic, dancer.
In 2012, life took an unexpected twist and, rather inconveniently, I was diagnosed with stage 4 bowel cancer. Following my diagnosis, I’ve had a few operations, 25 rounds of radiotherapy and more than 30 rounds of chemotherapy. Although medically I now fall into the ‘control not cure’ group of cancer patients, I’m determined to live as normal and full life as possible.
And so I have been getting busy living; learning new and random skills such as balloon modelling, fishing, chocolate making and soon, learning to fly a helicopter. I’ve enjoyed precious moments including teaching my son to ski and watching my daughter meet her heroine, Belle from Beauty and the Beast.
I am regularly getting into trouble with my doctors for doing too much. This year I’ve been skiing, snorkelling, cycling, hiking, kayaking, sailing, swimming with dolphins and completing a 5km charity walk the day after being unhooked from my chemo machine (I needed an extra-long lie down that day!). Whatever I get up to, there is always a smile on my face and a disaster usually lurking around the corner. But, with laughter and love, we’ve got through most things – even my colostomy bag exploding in the middle of WH Smiths (yes, really!) before boarding a flight didn’t dampen my spirits.
Life is for living and I’m loving mine (well, would rather not be spending quite so much time in hospital!). I’m here to inspire others who have been ‘written off’ and encourage them that you should never give up on living your life. You can read about my adventures at www.lifeasasemicolon.com
Until now, this site has catered pretty much to the carer looking after someone with dementia.
But after asking the Facebook 'likers' of this page The Sandwich Generation - Carers who also strive to care for themselves - what they'd like to see more of, I got some interesting feedback I want to take on board immediately. What about people who are carers for a loved one who has had a stroke, Sherry asked me. She has a very good point. A page that is a caregiver's space is much more inclusive and can evolve into Gosh, I can only imagine the huge task at hand for helping to rehabilitate a loved one, and the stress and sadness (and hope!) involved in getting them back to being more mobile, speaking more, and Indeed, I watch my cousins care for the mother who has had a stroke, and while she is making and has made exceptional progress, it is very hard on all involved - emotionally, physically, mentally, and in sacrificing time and work and so much more. However, just as caring for someone with dementia can be exceptionally rewarding, so can caring for someone who has had a stroke. Each victory, however seemingly small, is massive. Huge. Uplifting. Encouraging. When I thought of a video depicting stroke, I thought of this one. It has now gone viral, and shows a woman takes video selfie while having a stroke.
Extra info on video/post-script: This video showed 49 year old Stacey Yepes, who suddenly felt the left side of her body go numb. Her face felt frozen. Then, the phone rang. She answered, but slurred her words. Five minutes later, the symptoms subsided and Stacey felt normal again. Shaken by the experience, she went to her local emergency room at the hospital to get it checked out.
Tests were 'clear'. She was told that the episode was most likely a result of stress. Stacey was not convinced.
Even as Stacey was leaving the hospital that day, she felt that strange numbing sensation return. It passed quickly. She went home and went to work the next day.
Two days after her initial episode, while driving home from work, Stacey suddenly felt the left side of her body going numb again.
She pulled over as the symptoms returned, this time - stronger.
Then, she had the forethought to get out her smartphone and film herself, so she could later show a doctor what she was experiencing
Yet again, the symptoms passed and Stacey felt normal. She had now experienced three of these events and was increasingly concerned.
She went to another hospital for a second opinion. The symptoms she described and the video was enough for staff to suspect a minor stroke.
Because Stacey's episodes had been short and had passed each time, she had most likely experienced a transient ischemic attack (TIA) or what's known as a "mini-stroke."
TIAs are caused by blood clots and the only difference between a TIA and a full blown stroke is that the TIA is usually temporary. However, they are no less serious as TIAs are considered a warning that a more serious stroke could happen.
Stacey's assessment showed she had suffered a small stroke due to a small blockage in one of the arteries supplying her brain.
Further tests confirmed that this was caused by atherosclerosis – or the build-up of plaque in the artery supplying the area of her brain injured in her stroke.
Stacey was relieved to have confirmed the cause of her symptoms, yet she thought she had been leading a pretty healthy lifestyle, and was surprised to have suffered a stroke at such a young age. However, this is very much possible.
Although she experienced three separate events, Stacey is fortunate they only affected a small area of her brain and she wasn't left paralysed or with impaired speech. Had she dismissed those initial symptoms, the outcome could have been much worse.
Do you care for someone who has had a stroke? What's the experience like for you? And for them?
It was such a huge pleasure to be on radio with longtime radio host Dwayne Jeffries, on his renowned radio program 'Open House', on Australian radio station Hope 103.2.
Dwayne has more than 25 years’ broadcasting experience in commercial radio across Australia and around the world.
Dwayne started out as an announcer and music director in regional New South Wales (Australia), before becoming the director of programming at major radio networks in Australia and Europe. He hosted the breakfast show on 2GOFM on the Central Coast, before taking up the role of Program Director at Hope 103.2, Sydney’s Christian community radio station.
Through Open House, Dwayne is keen to explore and share stories of life, faith and culture. Dwayne is a married father of two and is passionate about communicating hope and contributing to the world his daughters will grow up in. With every interview, he aims to extract experiences and ideas that will spark a conversation and inspire others to action.
Says Dwayne: "For the last 8 years, each Open House host has been given the awesome opportunity to explore life’s full spectrum of emotions and experiences. I’ve found that no matter how much you may think you know where an interview is heading, there is always an unexpected turn. I can’t wait to kick off another season of sharing life, faith and culture with Australia in this one of a kind radio show."
This man is such a pro - he allowed me the space to open up about all that has happened on my journey with my mother, starting from my early childhood days. He expertly guided me into painting a picture for the listener, whether they are carers, were carers, or have not been down that path at all. He then helped guide the chat to what happened in the past few years. Dwayne is compassionate and genuine and you can see he enjoys helping spread a message that will help others going through something similar.
I will admit that yes… there were tears shed during the interview. It was pretty hard not to; mum had only passed away two weeks after my chat with Dwayne. There were so many things that were pretty raw - and still are. Nobody can really understand the pain you feel when you are grieving. This is something I am still exploring. One thing I do know is that there is no 'right' way to grieve. 'Carer's guilt' exists when you are caring for someone… and after they die, too. Feeling bad about smiling or getting out and about a little serves nobody, least of all you. They are no prizes for martyrdom! Simply live your life and ease yourself gently back in. And retreat back when you need to. Often, and as many times as you like.
A word of advice: don't be surprised if people react differently to your grief. Often people who have not gone through grief - or have not lost someone in their immediate family - do not know how to react. Some people will distance themselves and some will be drawn to you, helping you in your hour of need, whether they have been through the experience of losing a loved one or not. In time, those who have distanced themselves will truly get it. The circle of life is what it is for us all at some point. You can hear the entire interview here - you can simply listen to it or download it now.
I absolutely love the radio station 103.2. It has proved to be a source of great comfort over the years when I needed some gentle, spiritual music and soothing words. Check it out on your FM dial. You can also listen live anytime on the link here. They also broadcast (Australia's) Nine News 6pm bulletin. Such a great radio station. Give it a go!
I was so very fortunate to be asked to come onto the Tony Delroy 'Nightlife' show on radio ABC 702 in line with Dementia Awareness Month in the context of being a carer and chatting about my book 'The Australian Ageing Generation Handbook'.
I was in the very excellent company of Graeme Samuel, National President of Alzheimer's Australia andDr Zoe Terpening, Clinical Neuropsychologist and Neuropsychology Research Fellow in the Ageing Brain Clinic at the Brain & Mind Research Institute. When my book publisher asked me to come onto the show I was nervous about how I would manage it… considering my mum had passed away two weeks ago. I was very grateful when Tony's producer Susan called me several hours before - we spoke about what we were going to chat about on the show with Tony, and from the very outset, I shared with Susan that my mother had just passed away. Susan was concerned for my welfare, and my ability to be able to speak about something so fresh. We talked for quite a while and I am so thankful to Susan - she basically 'took the edge off' my raw, fresh grief. I went along to the show at ABC Sydney Ultimo studios confident I would share my experiences and speak eloquently enough that I would not break down (not there was anything wrong with that at all!) The chat with Susan, and later, the fantastic chat with Tony, proved hugely cathartic. I do truly hope many carers of all ages and stages get something from the radio interview. I am very grateful. You can download the entire podcast right here.
Tony, 61, has estimated he has asked more than 120,000 quiz questions since launching Nightlife on the ABC 20 (twenty!) years ago.
The show airs on the ABC’s local radio network (702 on the AM dial, and 774 in Melbourne) and has a national audience of 900,000. And some of these listeners have been with him for the whole two decades. Pretty fantastic for a radio show that runs from 10pm to 2am each weeknight.
In line with Dementia Awareness Month, and Alzheimer’s Australia has launched this video, with the focus on being 'dementia friendly.' Here is the most poignant line which resonated the most with me. "Dementia is fatal. And if more people realised that perhaps there wouldn't be as many jokes about it," says Graeme, who has early onset dementia.
Here is the accompanying YouTube description for the video:
Find out what you can do to help create a dementia-friendly Australia. Visit: www.dementiafriendly.org.au
THE UNSPOKEN IMPACT OF DEMENTIA Many Australians mistakenly think the symptoms of dementia are a normal part of ageing.
Dementia is caused by diseases that damage the brain. It is not a normal part of ageing. And it can happen to anybody.
Glenda, Keith and Graeme are Aussies in their 50s and 60s living with dementia in Australia. Here they share their experiences of living with dementia, the stigma that they’ve experienced as a result of their diagnosis, and their views on the small things people can do to help create a dementia-friendly nation.
SMALL ACTIONS COUNT Alzheimer’s Australia has a vision to create a dementia-friendly nation, a place where people living with dementia are supported to live a high quality of life with meaning, purpose and value.
To do that, we need to end dementia stigma. A crucial first step is for people to become dementia-aware and understand what it is like to live with dementia.
SOME BASIC FACTS ABOUT DEMENTIA Many Australians know very little about what dementia is or how it develops.
Dementia describes a collection of symptoms that are caused by disorders affecting the brain. It is not one specific disease – there are many types of dementia (including Alzheimer’s disease).
Dementia affects thinking, behaviour and the ability to perform everyday tasks. Brain function is affected enough to interfere with the person’s normal social or working life.
Dementia can happen to anybody, but it is more common after the age of 65 years. People in their 40s and 50s can also have dementia. Most people with dementia are older, but it is important to remember that not all older people get dementia. It is not a normal part of ageing.
KEY STATISTICS • There are more than 332,000 Australians living with dementia
• This number is expected to increase by one third to 400,000 in less than ten years
• Each week, there are more than 1,700 new cases of dementia in Australia; approx. one person every 6 minutes. This is expected to grow to 7,400 new cases each week by 2050
• Many people with dementia and their family and carers experience loneliness and social isolation after their diagnosis
• If diagnosed with dementia, 60% of Australians say they would experience feelings of shame
• People living with dementia often struggle to engage in their local communities because of limited community understanding of dementia
