WITH CARERS NZ | ISSUE 40
just for you!
Help others, help yourself
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ORGANISE Room by room! HOARDING Is it a problem? WHEELCHAIRS Trends and features ASHES TO ASHES Modern options KIWI CARD Easy legal ID
books, learning, care to cook, gardening, useful things, reader stories, gifts + more!
Camp Mother’s favourite condiments
TIDY UP Simon’s seasonal garden advice
Our Home is Your Home When suppor t is required to continue living life to the full, Radius Care aims to make the transition into aged care as smooth as possible. New Zealand owned and operated, our Kiwi values ensure residents are important beyond their medical needs. I t â&#x20AC;&#x2122;s also about providing the best lifestyle possible, supporting their hobbies and interests, and making our home their home. If you have any questions or would like to know more, please feel free to visit any of our 22 facilities nationwide. Youâ&#x20AC;&#x2122;re always welcome.
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Leaders in Care
this issue features
41 Reader Gifts!
One entry, all draws
Complete and return our Helpingyou hands will easy entry form and be entered into every reader gift draw! One entry per person please. Just return your form to us and you’re in to win! I have chosen to not write this on the computer so you may be able to read it rather than my attempt to write with a hand and arm in a plaster cast! Family Care would be without doubt my most loved and anticipated magazine. I cared for my late husband for many years until his death and I actually cannot remember just how I came to see my first issue of the magazine. I am a busy person in my community and at home, but the minute I collect Family Care from the letterbox, my world stops. The kettle is put on and nothing but nothing stops me from sitting down and reading it from beginning to end. I guess it provides compulsory ‘time out’! I find all the articles interesting and beneficial, not only for me but for those I know who have various ailments and life-restricting disabilities. I go back over the articles more than once, cutting out some pieces for myself and to share (begrudgingly) with others who might need the information. I live from dollar to dollar financially on my superannuation and have not paid a subscription, but to my absolute delight Family Care has continued to arrive in the letterbox. I read your opening article regarding the never-ending costs involved and if I ‘absolutely had’ to receive Family Care by email I would make the sacrifice of my time out when it arrives to read it online. Thank you for an extremely valuable magazine in so many ways that are practical, interesting and helpful. I often say to myself when reading, ‘that makes so much sense, why didn’t I think of it?”. Keep up your wonderful publication, albeit with financial sacrifices for the many for whom it is a lifesaver. It’s also good to know others are similar to yourself. P JOLL, WHANGANUI
SEE OUR GIFT ENTRY FORM ON PAGE 8 www.carers.net.nz
Thank you Penny, we hope your arm has healed. Many of our readers like you would struggle to pay a subscription, we know. Since our last issue which described the challenge of continuing to print the magazine, we have received many paid subscriptions
One Entry for All Gift Draws!
19 20 24 26 36 38 41 42
Kiwi Access Card!
Dreams We Carry
Ashes To Ashes
Tips for every room Is it a problem? Promises
Trends and features Cremation advice
Your Say Feedback
Aids, equipment, fun stuff
Books, Music, Film
Watch, listen, read, learn
Gardening with Simon Outdoor ideas
Our latest campaign!
Marketplace Where it’s at
Remembrance Letting go
Saucy recipes from the Topp Twins!
Just complete and return this form and you will be entered into every draw from our latest issue! One entry per person please. We'd love to know more about what you like. Please tell us about yourself (tick any that apply)!
I am a family carer for another/others I am a 'self carer' managing my own health and disability needs I care for a child or young person with a disability I have (or assist someone who has) these conditions or health issues:
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17 FamilyCARE 3
Lumino Day 2019 Giving back to those who give so much.
MAY 20 19 SATUR DAY
LUMINO AND CARERS NZ TEAM UP ONCE AGAIN FOR FREE DENTAL Lumino The Dentists were thrilled to once again partner with Carers NZ for Lumino Day – a day where our clinicians give their time and skills to New Zealanders up and down the country, for free. Last year, over 450 patients received free treatment, in what has become the largest free dental event in the country. A team of 83 clinical staff and close to 150 support staff were on hand to treat or assist the unpaid carers at 32 participating practices. Since its beginning in 2013, Lumino Day has provided treatment to over 2500 patients to the value of $900,000. This year, our 6th year of Lumino Day and the 3rd partnering with Carers NZ, we geared up for another wonderful day of treating approximately 500 patients in our communities, with almost 40 practices taking part, from Kerikeri to Gore. GIVING BACK TO THOSE WHO GIVE SO MUCH Good oral health has a huge impact on our overall wellbeing, but at Lumino we understand that visiting the dentist can be low on the priority list for many New Zealanders, particularly for those people with major pressures on their time, such as family carers. Lumino Day is our way of giving back to our communities and saying thank you to family carers for the selfless work they do. Once again, we couldn’t think of a better organisation to partner with, or people to open our doors to. Lumino Day also has a significant effect on our staff, with many saying the day is a highlight of their year. The feedback we receive year after year, is that this day leaves an impact – it is a rewarding, positive and uplifting day for all involved. “The day is the one event per year where, as a business with over 1000 staff, we all get together and do something for a worthy cause,” says Lumino The Dentists Clinical Director Fred Calavassy. “Now feels like an appropriate time to show kindness to all New Zealanders, and as a business, collectively and as individuals, I know many of us feel the same sentiment, that we want to do our bit to help others in our communities,” he adds. “We all have the ability to change lives with our expertise and skills.”
Lumino Day this year welcomed hundreds of carers across New Zealand through our doors! Read stories about carers who attended appointments in the next issue of Family Care!
It’s that time of year when Continence NZ runs its annual campaign to encourage people to get help if they’re experiencing bowel or bladder incontinence. This is quite a taboo topic in New Zealand but one hundreds of thousands of us need to talk more about. I care about continence and Continence NZ because when I was caring for my partner years ago, we lived with the impacts of these issues every day. The endless washing. The interrupted sleep. Relationship tensions. Disposing of soiled items. Wondering who could help. We finally found products that worked for us - uridome sheaths and urine bags so we could sleep without toilet visits, urine bottles, washable chair pads, disposable briefs and pads. We lived in a rural area so all of this learning took time. With lots of accidents in between. In my small village I became known as the person to talk to about poos and wees. Some of the stories were heartbreaking. And I knew only too well that I was no expert. But there are experts out there. It seems fitting, given this year’s awareness campaign theme of having a ‘wee chat’, to talk about continence and point readers to Continence NZ’s free helpline, its website, your GP, and your DHB’s continence advisors if you need some confidential guidance. Don’t live with bowel or bladder continence issues without getting an assessment and medical advice. There are so many products to help these days, and you may learn that the problem can be well managed or even fixed with medication and treatment. I now have a lifelong fascination with continence - its causes, cures, and aids that can make all the difference. That’s why I’ve represented families for years now as a Trustee for Continence NZ. It’s an important cause that struggles to secure enough funding to keep its resources, helpline, and services free for the growing number of New Zealanders who need this help. Recently the Carers Alliance of 45 national not for profits made continence one of its top four priorities, commissioning research to find out how families and those they support manage continence at home. More than 400 people responded to our survey and shared intimate insights about how bowel and bladder incontinence affects their lives. Something we don’t often think about is how all of these disposable continence briefs, pads, wipes, the chemicals to wash reusable products, and the energy to wash and dry them, are impacting the environment. How are frontline disposal staff coping with the mountains of soiled continence products they are dealing with in our landfills? And don’t get me started on the fatbergs in our sewerage systems. As in other countries, wipes that don’t break down are causing hidden problems once they get thrown or flushed away. We’ll be bringing you ideas about how to choose, use, and properly dispose of continence products at home in a future issue of Family Care. Meanwhile, if you have a continence query, the truth is out there: phone the free continence NZ helpline at 0800 650 659 ... or visit www.continence.org.nz
Editor Laurie Hilsgen Contributors Simon Broad, Angelique Kasmara, Virginia Linton, Sarah Wale, Kirsti WhalenStickley Advertising + Inquiries email@example.com Phone 09 360 7221 Publisher Family Care NZ PO Box 47-385 Ponsonby, Auckland 1144 ISSN 1177-3340 Print 2230-4819 Digital Disclaimer Articles and opinions do not necessarily reflect the views of Carers NZ, Family Care, or advertisers. Winners of our giveaways will receive their gifts within 6-8 weeks of each draw. By entering a reader gift draw your details may be provided to the supplier of that gift. If you do not want your details to be provided, note this on your entry form. Copyright is owned by the creators of images and graphics used in Family Care; see individual credits below. Cover image Putthipong Wiriya-apa, shutterstock.com Copyright Family Care. All rights reserved.
You'll find our entry form for all reader gifts on page 8!
FAMILY CARE FRIENDS
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Send us your email address so we can notify you of gift draws, news, and provide a link to read Family Care online! Just complete our gift draw form on page 8 and include your email address or send your online details to firstname.lastname@example.org Carers NZ, Continence NZ, Flame Art, Montec Mobility, IHC, Metlifecare, Quinn Engineering, Radius Care, Remembrance Glass, Tableau Towbars 6 FamilyCARE
Many of the images and illustrations in this issue were sourced from www.shutterstock.com or as indicated: P3: Naruedom Yaempongsa, Claire Norman; P6: Naeblys; P7: Oleg Golovnev, Rook76, Elena Yakusheva, Nataliia K; P8: Bradie Paul; P9: Trong Nguyen; P12: Eric Isselee, Yana Radaeva, www.etsy.com, Steve Mann; P16-17: Studio Barcelona, KDShutterman, Claire Norman, Simon Broad, Olga Miltsova; P20-23: Pressmaster, Efetova Anna, Kosmos111, Onur Bahcivancilar www.unsplash.com, B Forenius; P21: Tommywang; P26-30: Kirsti Whalen-Stickley; P34: Freedom Chair; P38-41: Anze Furlan, Asharkyu, Remembrance Glass, Flame Art, DnG Photography, Naruedom Yaempongsa; P40-42: Topp Twins.
your say WE’D LOVE TO HEAR FROM YOU!
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Road trip tip
Recently I found an old issue of your magazine with advice about how to plan for road trips near and far if you have a disability. I often collect my friend for an afternoon outing, and with a bit of planning there isn’t much that fazes us. Something we have learned is that truly accessible public toilets are important to know about. We know where to find most in our 100 kilometre radius from home - the ones that are clean, spacious, have sturdy grab bars, and have been thoughtfully organised so loo visits are no trouble for wheelchair users. Sometimes we need to find a loo in a hurry and if there is a queue I wonder how many people know about Continence NZ’s free ‘Can’t Wait’ card. To save embarrassment just show the card to the first person in line so they know you or a companion have a medical condition and need urgent access to the toilet. You can request a card online at www.continence.org.nz or phone 0800 650 659. SCOTTIE AND IAN, HAMILTON
Photo Synthesis I knew I would have lots of downtime after my recent knee surgery. You can only watch so much television! How would I spend the weeks of recovery, even with physio and plenty of short walks each day? The answer was staring me in the face: a shelf full of bulging old photo albums, many with broken spines, and boxes of old photos that I had been wanting to sort through for years. I planned ahead, purchasing lovely new photo boxes and albums, and a photo scanner and printer with plenty of photo paper. All of this was waiting for me when I returned home, and before long the hours were flying by as I first sorted everything into tidy piles of film slides, similar sized photos, framed photos, digital images, and so on. I then further sorted my piles into logical order: photos of long ago events and relatives, those from more recent times, photos of each of our four children and their families, photos of my wife and I when we were young (precious as she
passed away 15 years ago; how I loved reliving happy times from throughout our marriage looking through those piles of photos). I had unearthed our old slide projector and display screen and reviewed box after box of slides, discarding bad ones and those that were no longer of interest. This took a whole afternoon. It was quite nostalgic to see so many friends and family members from the past in these slides. I carefully numbered each one and in a book noted who the slides depicted, where the images had been taken, and any other details I could remember. Photos I stored upright in lovely, sturdy photo boxes I found at The Warehouse. On the back of each photo I affixed a mailing label, noting people, places, incidents, events, and any special memories. I transferred all digital photos from my phone, camera, and memory sticks onto a single storage device, printing special ones for myself and my children along the way so we could look at them often. There are lots of photo
display and storage options these days. The main thing is to choose a method and get stuck in! Although time-consuming, finally sorting out the family photos was satisfying and enjoyable. Now I can take pleasure in viewing my treasure trove of family memories instead of looking at the untidy shelf that always made me feel guilty!
SAM WHITE, E-MAIL
Share your stories and advice with other readers! We’ll send a surprise gift for every letter we publish. Email your letters to firstname.lastname@example.org
One Entry for All Gift Draws!
Just complete and return this form and you will be entered into every draw from our latest issue! One entry per person please. We'd love to know more about what you like. Please tell us about yourself (tick any that apply)!
I am a family carer for another/others I am a 'self carer' managing my own health and disability needs I care for a child or young person with a disability I have (or assist someone who has) these conditions or health issues: _______________________________________________________ _______________________________________________________ _______________________________________________________ I work in health and disability I work for a community organisation I share my magazine with others (if so, how many
others see your copy of Family Care: _________ )
I would most like to win these reader gifts: 1. _____________________________________________________ 2. _____________________________________________________ 3. _____________________________________________________
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Kia ora for my latest Family Care magazine. I love your recipes as they are usually very easy to make. Also, your reader stories are wonderful as it makes us feel we are not alone. Our mother had a stroke and this has impacted our lives immensely. From going from a life of working five days for Work and Income looking after clients over 65 years and also as a part-time periodic detention officer on Saturdays, to someone who now has to rely on others, has been challenging. Mum struggled to cope with the complete loss of her way of life and basically hid away in our home for many months. As a whānau we also had to cope with reduced income with only one wage, my brother’s, to keep our household running. I myself am classed as an ‘invalid’ after I went into a diabetic coma with low blood sugar. I am now unable to work or drive so I relate to what Mum is going through. But I have found my rhythm in life and now happily do study. This gives me purpose and contact with others on the same journey. I was awarded a scholarship to become a photographer and have found my niche in life! I am brain damaged and have no short-term memory which means I have no concept of time and forget most things. My visual acuity is still fine though, so I now take photographs throughout my day and this ability has improved in leaps and bounds. I now photograph all aspects of life and focus my attention on capturing what really matters in life - people. I urge others to also find their love and passion if, as in our family, they find themselves dealing with circumstances beyond their control. Find something that enthuses you, then pursue it at all costs - it will help you to live once more. Ngā mihi nui for your magazine. BRADIE PAUL, OPOTIKI
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It’s important to get advice if bowel or bladder continence is a concern
Several years ago I became quite housebound after needing to go to the bathroom more frequently. Sometimes I didn’t make it - I would be caught short, with leaks visible for all the world to see if I was out in public. The worst instance happened at Pak’N’Save when I started to wee and couldn’t stop. Down the fruit and vege aisle I went, unable to control the urine which trailed behind me. I abandoned my cart and left the store. I couldn’t face the manager and heaven knows who cleaned up after me. After that I stayed home where, if I had an accident, at least it was only me who knew. Someone told me about some padded briefs I could buy at the supermarket (of all places!) so I tried these and they worked well. But I was too embarrassed to talk to my GP and thought, well, maybe this is just what happens as you get older. At a Stroke Club meeting we
• • • • • • • •
heard about the free Continence Helpline. You can speak to a qualified continence advisor who can help you understand what might be causing your continence problem, and what medical assistance might be available. You might even qualify for free briefs from your DHB. This is what happened for me. With good advice I now feel I can manage my challenges with bladder control. I still cringe when I think of the ‘Pak’N’Save incident’ but I’ve made up for it by continuing to shop at my local supermarket, leaving behind my money but nothing else these days! When I think
• • • • •
of how many months I avoided going out and how isolating and depressing this was, I only wish I had heard about the Continence Helpline sooner. Don’t wait if this sounds like you - the free number is 0800 650 659 and there is also an excellent informative website at www.continence.org.nz I now live a normal life. I know I can ask for advice if I need it, and am very thankful to live in a country with a public health service that provides free assistance and products.
• • • • • • • •
Jeepers, don’t put up with it! You deserve to live a full life doing the things that you enjoy. If a bladder issue is stopping you, then get it sorted. And keep on pushing until it is sorted. But don’t wait twenty something years. Don’t miss out on life. Click here to watch Emma's full story
A quarter of New Zealanders are impacted by some form of incontinence. It’s time to talk about it. Our Continence Nurse Specialist is now available to take your calls from 9am to 5pm, Mondays and Tuesdays. Please give her a call with any continence questions or concerns you may have. You can also email any questions about continence to firstname.lastname@example.org This is a free and confidential service and is available for all ages.
Call us on 0800 650 659 Continence NZ is proudly supported by:
Aids, equipment, services, and fun stuff to help you at home or out and about!
COOL CONTINENCE UNDIES
Do you cross your legs when you sneeze? Confitex washable absorbent underwear combines unique threelayer leakproof and odour resistant textile technology with discreet, fashionable designs in high-quality fabrics. It looks, feels, machine washes and tumble dries just like regular underwear and requires no pads or liners – so there’s no fumbling around with tricky packaging or adhesive strips. This patented textile is breathable, hypoallergenic and plastic-free, restoring confidence so you can get on with life. Order online at www.confitex.co.nz or call free 0508 003 507.
WE HAVE 5 CONFITEX ABSORBENT UNDERWEAR TO GIVE AWAY, WORTH $49.95 EACH
YEAR ROUND SIP OF SUMMER
Kombucha is an effervescent fermentation of sweetened tea, but not all Kombucha is created equal. Taste the difference with René’s Kombucha! Crafted by one of the first genuine Kiwi brewers and brewing commercially for over 5 years, René’s Kombucha now has organic certification. René’s Kombucha contains live cultures provided by a symbiotic colony of friendly bacteria and beneficial yeast, brewed with organic Tulsi (Sacred Basil) and organic green tea. Available in a range of exciting flavours - Red Berry, Pomegranate, Lemon & Ginger, Guarana & Açai and Turmeric & Ginseng with Cayenne (from RRP $5.20). Learn more at www.reneskombucha.com
If you find walking difficult then the Freedom Chair is for you. It’s great for indoors, outdoors, and when you want to travel. The Freedom Chair is one of the lightest and most versatile alternatives to a mobility scooter and it’s your best choice for all round convenience and performance. Driving the Freedom Chair is easy and fun so when it’s time to go anywhere, there’s no better travel companion. Call Paul on 0800 466 626 or email email@example.com or visit www.freedom-chair.nz
THE ENTRY FORM FOR FAMILY CARE GIVEAWAYS IS ON PAGE 8! www.carers.net.nz
LITT WAY LE S LOVETO YOU RSEL F
LIVE IN THE MOMENT You’ll never get this moment back. Make the most of it.
Organise the little things so you can enjoy the big things. FUN
There’s nothing more relaxing than a favourite activity. Make time for friends, sport, the book club, and games that require a bit of concentration!
Care for your skin with a simple daily routine. Our bodies endure so much - be organised about your routine, leaving time morning and night no matter what. You deserve it!
Unravel old jumpers to create useful new things: a colourful rug, a knitted toy, a whimsical tea cosy, fancy turkish slippers, or maybe some fun finger puppets. We like this Gin o Clock crocheted cardigan, which is fairly easy to make and a great first garment pattern. You can download the pattern for about $12 at www.etsy.com (search Gin o Clock to find the pattern).
IF YOU WANT SOMETHING YOU’VE NEVER HAD, YOU MUST BE WILLING TO DO SOMETHING YOU’VE NEVER DONE. THOMAS JEFFERSON
CHOOSE FROM THOUSANDS OF WELLBEING ‘APPS’ WHICH YOU CAN USE ON ANY MOBILE DEVICE. HERE ARE SOME TO CONSIDER! THE KITE PROGRAM
Download in the App Store or Google Play This app takes you through 14 mini self-development topics: sleep, stress management, relationships, guilt, and more. You’ll receive a beautiful note each day with a simple, practical activity to do at your own pace. Cost: free 7 day trial then once only purchase fee. www.thekiteprogram.com
COUCH TO 5K
This running app takes you from couch potato to comfortable runner in 30 minutes a day, three times a week for 8 weeks. US$16.99 in app stores. www.fitness22.com
Help if you care for a friend or family member Carers NZ produces many free resources. You can find them at www.carers.net.nz or phone 0800 777 797 to order copies for yourself, or bulk copies for carers in your network. Many carers feel isolated and aren’t sure what help is out there for them. Our resources are designed specially for all carers including those supporting an older person, older carers, and young carers aged under 24.
THE TAPPING SOLUTION
Learn the Emotional Freedom Technique (EFT) based on the combined principles of ancient Chinese acupressure and modern psychology. The basic tapping technique requires you to focus on a negative emotion - a fear, a worry, a bad memory, an unresolved problem, or anything that’s bothering you. While maintaining your mental focus on this issue, you use your fingertips to tap 5-7 times on 9 specific meridian points of the body. Tapping in this way while verbally or mentally addressing these endpoints addresses the root cause of distress and sends a calming signal from the body to the brain, allowing you to feel relaxed and in control. Tap anywhere, anytime you feel stressed. US$6.99 in app stores. www.thetappingsolutionapp.com
Contact Carers NZ if you need advice, have a question, or to request any of our resources. 0800 777 797 firstname.lastname@example.org www.carers.net.nz facebook.com/CarersNZ facebook.com/YoungCarersNZ www.carers.net.nz
books, music, film
CINEMABILITY: THE ART OF INCLUSION This 97-minute documentary tackles the history of how disabilities have been portrayed in American cinema. It sifts sifts through everything from silent films to modern-day blockbusters. Among those who contribute to the conversation are Ben Affleck, William H. Macy, Marlee Matlin, RJ Mitte, Jamie Foxx, Geena Davis and Helen Hunt. Jenni Gold, the only director member of the Directors Guild of America who uses a wheelchair, was inspired to make CinemAbility to offer historical context. In the press releases for the film, she says, “growing up as a wheelchair user I found many of the representations of people with disabilities on screen to be confusing. The person in the wheelchair was always syrupy sweet or angry and bitter.” Her feature is an enlightening and engaging look at how the film and TV industries deal with ‘otherness’. Initially released on the festival circuit, CinemAbility can be viewed on iTunes and other video-ondemand platforms. View the trailer at http://www.goldpictures.com/ films/cinemability/
LONELY PLANET KIDS CARDBOARD BOX CREATIONS
“I realised that 90%of films and TV shows don’t really have anybody who is disabled at all, not even in the background,” Jenni says. “That means we don’t exist in the society of that film or that TV show. If you don’t exist, how do you get a seat at the table?”
Welcome to a world of crafting, creativity…and cardboard! Lonely Planet’s Cardboard Box Creations will take you around the globe as you build 20 travel-themed objects, icons and famous landmarks. Including step-by-step instructions and a starter kit of cardboard sheets with cut-out template guides, you’ll soon become a master cardboard crafter! No longer destined for the recycling bin, turn your spare scraps into amazing things, from a hot air balloon and space rocket to a Chinese dragon and Tiki totem pole! Check out more books and activities online at www.lonelyplanet.com/kids YOUR OWN COPY!
Adrienne Frater led an active, normal lifestyle. Slowly this changed. Walking up hills or stairs became a struggle and she knew something was very wrong. Finding help was not straightforward. The dizzy spells and shortness of breath continued. After many misdiagnoses Adrienne was finally diagnosed with Hypertrophic Obstructive Cardiomyopathy (HOCM). “What is that?” she asked as she had never heard of the condition and initially had trouble finding information. Journalist Paul Holmes was perhaps our most well known Hypertrophic Obstructive Cardiomyopathy (HOCM) sufferer who sadly passed away in 2013. Take Heart is an honest, unsentimental account of Adrienne’s diagnosis, treatment, and medical adventures with Hypertrophic Obstructive Cardiomyopathy. Available at booksellers or online, RRP $30. 1 OF 4 COPIES!
SEE OUR GIVEAWAY ENTRY FORM ON PAGE 8 14 FamilyCARE
RECOMMENDED THE CASKETEERS
Locally produced documentary series The Casketeers is a revelation - poignant, frank, and hilarious. Kaiora Tipene, one of the funeral directors for Māori funeral business Tipene Funerals, says in an interview with The Guardian that her initial resistance to being filmed changed when she realised it was a chance to break down misconceptions and taboos. We’re glad she said yes. Picked up by Netflix, it’s a fantastic insight into the warmer, funnier side of death. Funded by Te Māngai Pāho – an indigenous funding body tasked with promoting Māori language and culture - Te Reo Māori is used frequently throughout by the funeral directors, Kaiora and her husband Francis, with subtitles provided. You’ll find the series on TVNZ On Demand, or Netflix for subscribers.
101 SMALL WAYS TO CHANGE THE WORLD ($22.99)
It’s hard to believe that you could change the world, but it’s true! New from Lonely Planet Kids, 101 Small Ways to Change the World by Aubre Andrus is a practical, fun and creative book to inspire you at home, school and in your local community and beyond! Packed with loads of awesome ways to help out family, friends, yourself and the planet – and show how you’re never too young to make a big difference. The book includes random acts of kindness, craft projects, energy-saving ideas and much more! Available at bookstores and online. Find more books and activities at www.lonelyplanet.com/kids YOUR OWN COPY!
COMPREHENSIVE EPILEPSY GUIDE
The author of Epilepsy First Aid, Krystle Crimmins, says her motivation to write the book comes from firsthand experience, as she herself lives with epilepsy. “More often than not, people who have never witnessed a seizure before have no idea what to do, so they just walk out instead of helping,” she says. “It may be that they won’t even recognise what they’re seeing, because it doesn’t fit with how they expect a seizure to present.” Rather than shy away from the unknown, she would like New Zealanders to be empowered with the skills to practically assist. “There’s also a common misconception that there are just two types of seizures,” she says. “The book gives an up to date overview of the eight common seizure types, their signs and symptoms and how to approach each one.” She hopes her book will raise awareness of how people living with epilepsy do lead full, productive lives. To her dismay, she has found that full disclosure of the condition has proved detrimental for getting hired for jobs where it shouldn’t have been an issue, she says. She would welcome more open discussion during interviews but “often the conversation just shuts down”. She eventually found an understanding employer, but is aware that this isn’t often the case for many people living with epilepsy. With the support of medical specialists and Epilepsy New Zealand, Epilepsy First Aid is available now. Learn more at www.epilepsyfirstaid.com 1 COPY TO BE WON! www.carers.net.nz
GARDENING Foxton Style! Garden advice from Simon Broad Being organised comes naturally to some, but since my stroke 10 years ago I have had to learn to be more organised in my house, glasshouse, and gardens for safety reasons. Even when I am making pickles, chutneys, relishes, or jams, or trying my hand at some baking, all the ingredients are lined up on the kitchen windowsill in the order I intend to use them. This makes it so much easier for me when making the above. When I have finished with one particular ingredient I put it onto the tray of my walker. That way I know I won’t forget, and double up on one particular ingredient. So if the phone rings or I get a visitor I can go back to the task at hand and not have to worry whether I had put the mustard or whatever in. Some may say this is over the top, but it works for me. Plus it saves a helluva lot of
walking. My cupboards and pantry are set up for easy access, so I suppose that is classed as organising as well. I have had people comment just how organised I am, but I look at it as a safety thing. I have to think of my health and wellbeing, as living on my own the closest help is Mike and Jackie, or Kay and Perry who are both my main contacts for my medical alarm. And they all have my brother Adrian’s phone number as he is the closest family member just in case he is needed. So I do have that aspect of my life organised. I put my knife and fork next to my table mat in the morning to be organised, and my sisters when visiting comment or deliberately move them to wind me up. And not a word muttered!
I have an old walking frame as my ‘tractor’ around the gardens, and spend up to 10 minutes loading it up before I start any gardening. It is good for me to be organised, as I will be fair tuckered out if I leave something in the garage and have to go back a few times. I am a firm believer in using a string line whenever I am planting anything, seedlings or seeds. That way I don’t forever have to 16 FamilyCARE
“ALL GARDENERS LIVE IN BEAUTIFUL PLACES, BECAUSE THEY MAKE THEM SO.” stand back and see if I’m putting them in straight. Much nicer to see a perfect row of carrots or garlic poking up through the soil instead of a dog’s hind leg type scenario.
All my tools are in their right place. Gardening tools are the handiest, as they obviously get used the most. I only have the basic tools and must admit I don’t look after them as good as I should. Sometimes when I take Sasha down to Mike and Jackie’s, leaning up against the side of their garage are the tools Mike has been using in his garden, all nicely polished with linseed oil or similar. But in saying that my tools are exactly where I want them and easily within arm’s reach. One thing that irks me is, ex boarders would do some work out in the gardens and just leave the tools where they were being used. And who had to pick them up? Yep you
got it....me! Not good organisation skills on their behalf, but at least one of them was generally a great help.
Whenever I grow a tomato plant which is a bit different to the run of the mill variety, such as Amish Paste, or Ox Heart, I like to wait until one of them is nearly over ripe and pick it to keep the seeds for next year. And I always save the seeds of one of the Grosse Lisse, because although not that unusual, I have trouble finding seed for them in a garden centre. Once I decide which seeds I am going to save I get the roll of paper towels out, rip a couple of sheets off and write on it the variety. I then wash the seeds and carefully place them onto the paper towels and gingerly place them in the hot water cupboard to dry off. Once they are dry I then fold the paper up and put it into a prewritten envelope, and into my seed cupboard in the garage which is next to the worm farm and compost bin. The seed cupboard is organised in such a way that I can look to the left for tomatoes, and to the centre for brassicas, etc. So a very well organised seed cupboard.
You may enjoy making these cupcakes, recipe courtesy of Jackie. I make them myself on a regular basis to share, and Jackie reciprocates whenever she makes some. I asked Mike and Jackie if they would pick me up an icing thingee when they went to the Levin Warehouse, but haven’t been ‘brave’ yet enough to ice the cupcakes. I would love some icing tips from other readers!
Cream butter, vanilla essence and sugar. Add eggs one at a time, beating after each one. Sift flour and baking powder. Fold into mixture. Add sultanas. Stir in milk. Spoon into tins or paper cases. Sprinkle with sugar and bake at 190 degrees until cakes spring back. Ice if you wish.
Cakes to Share 125g butter 1 tsp vanilla essence ½ cup caster sugar 2 eggs 1 cup flour 2 tsp baking powder ½ cup sultanas or choc chips ¼ cup milk
I AM A FIRM BELIEVER IN USING A STRING LINE WHENEVER I AM PLANTING ANYTHING, BE IT SEEDLINGS OR SEEDS. THAT WAY I DON’T FOREVER HAVE TO STAND BACK AND SEE IF I’M PUTTING THEM IN STRAIGHT.
CONTACT SIMON Get in touch for advice, or just to say hello. Simon Broad, 06 363 8855, 027 769 0674 or email email@example.com www.carers.net.nz
IHC Family Whanau Liaisons
“Connecting with your community”
The IHC Family-Whānau Liaison programme is a pilot programme running in Northland, Manawatū/ Horowhenua and Christchurch.
Supporting families of young people and children with intellectual disabilities to access funding and service support.
Visit our website: ihc.org.nz/ihc-family-whanau-liaisons With thanks to the IHC Foundation 18 FamilyCARE
Official ID! The Kiwi Access Card is here. A rebranding of the +18 Card issued by Hospitality NZ, it’s been upgraded with inclusivity in mind. Like the +18 Card, it provides an official form of ID, but has dropped the youth-only implications. The move was taken to recognise everyone from all walks of life, who often get shut out of the most basic transactions, such as opening a bank account, simply because they can’t afford and/or are unable to obtain a drivers licence or passport. Consultation with agencies such as the Department of Internal Affairs, Ministry of Social Development, Office for Disability Issues and NZ Post, led to the redesign. “The card has been created with everyone in mind, and we hope that it will give everyone in New Zealand the freedom they need to get the most out of life,” says Hospitality New Zealand CEO Vicki Lee. As a secure and reliable way of proving your age and identity, it has been updated to ensure compliance with the latest enhanced security features. www.carers.net.nz
The Kiwi Access Card, valid for 10 years, is suitable for anyone who needs an acceptable form of ID.
For example, the new card includes embossing, micro text, and also braille. The name was changed from the +18 Card to make it suitable for everyone who needs an acceptable form of ID. However, judging by social media pages, there’s still some confusion regarding its purpose. Many had no idea that proof of identity could be a problem for anyone who looks over 25. Some queried the cost of the cards. The fee is $55, which is indeed a steep amount for many New Zealanders. However, it is valid for 10 years, and for those with an existing 18+ Card – please don’t rush out to replace it. They’re valid for 10 years from the time of purchase, so get your money’s worth! Andrea Lamont commented on the Blind Foundation’s Facebook page, “as a parent I am so happy these are finally here”. “The cost is minimum compared to passport renewal. I no longer have to be my son’s agent or guarantor.” “He can now get a hire purchase as he was unable to before. He can also do his
own business such as banking when I am unavailable.” Since the application process includes extra options to apply for those who do not hold a valid passport or drivers licence, the card is an accessible option to get hold of a secure, reliable and nationally accepted evidence of age and identity card. Like the 18+ Card, applicants must be 18 years or older to apply for a Kiwi Access Card. Proof of age is required as part of the application process. The card is also available to people who are not NZ nationals, but need a secure and reliable proof of age and identity while in the country. You can use your current +18 Card to apply for a Kiwi Access Card. If you don’t have any form of photo ID, then you will require an identifier statement from someone who can vouch for your identity. They won’t have to accompany you to the Post Shop for your application, but will need to have valid ID themselves. FamilyCARE 19
Ideas to help you wrangle your stuff. By Sarah Wale
We’d all like to be able to simply focus on the things that matter, with the nuts and bolts magically taken care of by a team of elves. Unfortunately, few of us are afforded this luxury, and when you’re living with an illness, or are a carer, it’s easy to get overwhelmed by the sheer mountain of stuff there is to get through. We’ve put together a few tips and ideas for getting sorted, to smooth the way forward.
Ready to organise?
‘Containment’ is the aim and you need boxes and drawers, large and small and made of any material you like, though transparent ones are helpful when you need to see what you’ve got. You don’t have to spend a lot; shops like KMart, Spotlight and The Warehouse sell stylish storage solutions at reasonable prices. Those wonderful ‘budget’ shops and catalogues, full of everything you didn’t know you couldn’t live without, all at silly 20 FamilyCARE
prices, will give you lots of ideas for tidying up your space. Look out for multi-pocketed back-ofthe-door hangers, which hold a multitude of small, easily lost items. They’re getting hard to find nowadays but are easy to make. You can also disguise or hide untidy shelves by fitting a curtain or roller blind. Kitchen The second drawer down, the one under the cutlery drawer, is typically full of utensils you use every day, which all have prongs or hooks that cause them to snag on everything else in the drawer. Then there are the tubes of glue, paper cupcake cups and birthday cake candles, all needing to be kept tidy but accessible. Solutions? Shallow, lidless boxes in three sizes, arranged vertically and horizontally to fit the drawer, will contain everything where you need it. You can organise them to suit yourself and will be amazed how easy it is to find even the smallest item. Many appliances have a spool to wind
the cord round or a recess to fold it into; if so, use them! If not, wind cords into a skein or coil and secure with a stout elastic band (the sort you get on asparagus is perfect). If you have a cupboard to store them, put the most used appliances at the front and make sure they always stay there, even if you have to move them to put away the thing you used last which only comes out once a year. Accessories cannot be kept tidy so at least keep them corralled in a suitable box, with or without a lid and preferably in the same cupboard. If you don’t have room in your kitchen cupboards, little used items could be stored elsewhere, like the laundry room. If all else fails, those used daily can live on the bench, but make a space for them near an electrical outlet and don’t let other ‘stuff’ crowd them out. Food may not be clutter but it can take up a lot of room. It isn’t practical to arrange your pantry with tall things at the back but you could consider getting mini step-shelves designed to make the things www.carers.net.nz
at the back more visible. Transferring bulk goods like flour, rice, pasta etc. into clear, sealed containers can make them easier to find and even save spills. Stacking smaller containers saves space, just don’t put the most used items at the bottom - and don’t forget to label. Herbs and spices never fit neatly into those purpose-built spice racks or carousels. Keep them in their original boxes in a drawer (lidded boxes for the more pungent spices). Household chemicals like washing up liquid, surface cleaners and grease cutters should, of course, be kept out of the reach of children. This applies doubly to dishwasher powder, liquid, or tablets, which are dangerous if even the smallest amount is ingested. Care must be taken to ensure the little ones don’t get anywhere near these. Lounge/Dining Room Newspapers and magazines require judicious culling. Every few weeks, go through papers and periodicals and get rid of those which are of no further interest. Mark on the others why you’ve kept them and then put them in a magazine file. Books are never clutter, but they do take up space, so if you’ve no further use for them, give them away. Otherwise, there is no such thing as too much shelving. If you have tall books, it’s OK to lay them flat and it also looks more interesting than rows of vertical volumes. Shelves don’t have to be in the lounge, they can go in hallways, bedrooms, even cloakrooms. Photos, ornaments and knicknacks can be sentimental and bring joy, but too many become clutter. If you need to clear some space, consider displaying curios in a display cupboard in the hallway or on a landing. You can even show them off on shelves going up the stairs. Bedrooms Clothes, shoes, makeup and bling are the areas we have to consider here. Presumably you have your clothes hung or folded in wardrobes and drawers or on shelves; this is the most efficient way of storing them. Hinged wardrobe doors provide some sneaky extra space: hang those multipocketed fabric or plastic hangers on the inside and use them to store scarves, accessories, and maybe those party shoes and slippers which get kicked to the back of the wardrobe floor. www.carers.net.nz
If you have lots of big, bold necklaces, hang them on a coat hanger in your wardrobe, where they’re easy to find and won’t tangle up. Rather than a jewel case or box for good jewellery, use fishing tackle boxes to keep earrings together in their own little compartments, rings the same and, again, pendants and chains. Shoes can be kept in their boxes, stacked on the wardrobe shelf; just cut off the ends so you can see what’s in the box and slide them out without having to take down the whole pile. Tackle boxes with partitions are great for makeup, too, so you can find the right nail polish or lipstick without rummaging. You can keep them in a drawer to clear space on your dressing table. If you want them on display, you can also get some attractive racks especially for these items. Undies and socks are hard to keep tidy but if you fold or roll them, tucking them into drawers in rows rather than just piling them in, they will take up less space and be easier to find. You might even find you have room for undies and socks in the same drawer, freeing another for something else. Seasonal storage involves putting away last season’s clothes and only having currently needed garments to hand. Under-bed lidded boxes are great for this, keeping out moths and dust while being easy to move. Alternatively, heavyweight plastic vacuum bags, which allow you to compress clothes and bedding to a quarter of their thickness, are ideal space savers. They can be stored anywhere
(even in the garage) as they are moisture, dust and moth proof and sturdy enough to be unlikely to tear. If you only have a smallish bedroom, or not much hanging space, a great way to keep jeans and other pants tidy and to hand is to use freestanding towel racks. You can get two or three pairs on each rail and see instantly which ones you want. These are not expensive and take up hardly any floor space; tidying with these is as easy as chucking your clothes over the back of a chair! Bathroom There’s not a lot to say about bathrooms as they are all different and we all keep different stuff in them. Medicines, pills and potions must be kept away from children; you might want to keep them in a sealed box as double security. Everyday first aid items should be easily accessible, however, in a lidded box and on a high shelf, preferably in the kitchen, where they’re most likely to be needed anyway. Towels and flannels can either live in a cupboard under the washbasin or stacked on shelves if there isn’t any closed storage in your bathroom. Odds and ends like seldom-used lotions and potions, hairgrips, spare combs, sun cream, insect repellent and so on can live in a cupboard or on shelves in boxes, but if these are not available they can be relegated to a multi-pocketed hanger on the back of the door if you want to keep the vanity unit free of clutter. FamilyCARE 21
Study, Family, or Craft Rooms These can be hard to keep tidy, especially if yours house multiple activities. Office papers and files can be kept in clearly identified drawers and an old fashioned filing cabinet is still the best solution for these. See our ideas on the next pages for keeping your paperwork sorted. A shelf or cupboard will keep spare printer paper, cartridges and other stationery tidy, perhaps with some of those invaluable shallow trays for storing chargers, battery packs and other items which otherwise take over space. Sewing and hobby materials can be stored in boxes and drawers, with the odd fishing fly box added to the mix. They are also useful for threads, elastic and tape, ribbons and trims, and scissors and other useful tools. This all takes up a very small footprint and keeps everything to hand. Gift wrap has a life of its own and you can buy special cases to keep it tidy. On the other hand a pair of tights (or stockings) works really well and you can have Christmas in one leg and Birthday wrap in the other. Don’t roll it too tightly and then you can drop spools of ribbon or packs of gift labels inside to keep everything together. Keep a roll of sticky tape and a small pair of scissors with them so you are ready to wrap. Laundry and Utility Rooms Shelves with cubed partitions are good in these spaces as they keep things like the iron, boxes of washing powder and other commonly used items nicely separated but visible. A tall cupboard, if you have room, is useful for mops, brooms, the ironing board, and the vacuum. If you don’t have room for a cupboard, these hang quite happily on hooks on the wall. If the cupboard has a shelf, use it to store dusters, furniture polish, and similar items. This leaves floor space for stackable storage boxes for things that need to be accessible but are impossible to keep tidy, such as vacuum cleaner accessories. Garage Very much the same rules apply as for the laundry/utility room but in this case, ensure storage boxes are sturdy and moisture proof, especially if you want to archive important papers or books in them. Tools can be hung on a pegboard or kept tidy in a toolbox (just make sure children can’t get at them). 22 FamilyCARE
Keep as much as you can off the floor; with luck, you might discover that you have room for the car after all!
Very few of us enjoy filing and organising our paperwork. When we’re in the middle of a tidying blitz, it’s often the thing that gets pushed aside to a later date. Shoved into drawers or heaped into piles, paper can quickly pile up, stifling productivity and flow. And it’s too easy to skip important steps, such as having backups of important documents in case of a natural disaster or theft. Below are ideas to help you keep on top of your paper mountains! Find Your Documents First of all, set aside time to concentrate on just paperwork and nothing else. Because you’ll need all the energy you can muster! Before you can organise all of your documents, you must locate them first. This can be challenging in itself. It’s frustrating when you’re looking for something that you know has been tucked into a safe spot, but can’t remember where that spot actually is. Turning the house upside down looking for this stuff can eat up hours. Delegate a space Whether it’s the floor or a tabletop, set aside a space to display your documents
for sorting. Then, instead of looking for specific items, scoop up every scrap of paperwork from your house and car and any other likely places. Include anything from documents you’ve already stashed away to clearing out your letterbox. When searching, don’t dismiss any location as too absurd. Try checking inside board games, the glovebox, and between the pages of books. Trash or keep: how long do you need to keep paperwork? Sort your paperwork into three piles. Pile 1: Action! Current and outstanding bills, invitations, appointments, etc. Pile 2: Trash! Junk mail, old shopping lists, paperwork you no longer need or want. Pile 3: File! Everything else. Paperwork to file can be split into two groups - lifetime and fixed-term paperwork. Lifetime paperwork includes items such as certificates (birth, marriage, divorce, degree, death), Wills, Powers of Attorney, investment and share certificates, pension paperwork, passports, house records (deeds, mortgage, rental agreements), and medical and health insurance documents. www.carers.net.nz
Storing paperwork long-term 1 Year Utility bills. When renewing or changing a supplier, your current policy can be a useful reference. Bank statements (non-business). Check your statements regularly to review direct debits/standing orders, identify any unusual behaviour, and note any unnecessary fees or subscriptions. 7 Years Keep bank and investment paperwork for tax purposes and if investments are still current. Check expiry dates regularly, discarding any paperwork that is no longer needed (after seven years you can trash bank statements and receipts, for example). Legal documents Insurance documents - keep for the period of coverage Contract of employment - keep for the term of your current employment Proof of purchase (receipts, warranties etc) When discarding paperwork, shred documents that include your name, address, important numbers (bank accounts, credit card details, IRD correspondence etc) Storage central Go for a straightforward filing system. The essential thing is to keep everything in one place. Whether it’s a shelf in your home office or a filing cabinet under your desk, this will help maintain order and you’ll be more likely to use and maintain it.
Fixed-term paperwork encompasses documents to be kept for a limited amount of time. See our suggestions for keeping this paperwork sorted (above).
Scan or photograph all your important documents before filing them. If you’re unsure how essential an item is, imagine how crucial it would be (or not) in a crisis. Scanbot or CamScanner are apps that can be used via a smartphone, which allow you to enhance, annotate, and crop documents and send them to your computer or a cloud storage system. If you don’t have access to these or a smartphone, just remember that the www.carers.net.nz
Options A small 2-drawer filing cabinet with clearly labelled files A letter tray to sit on top A security box or safe Your most important documents will tend to fall into six categories. Sort them accordingly, and create a file for each. 1. Home and Property Records. Mortgage, rental agreements, home improvement projects and receipts, appliance manuals, warranties, home insurance policies. 2. Auto Records. Titles, maintenance records, insurance policies, payment statements. 3. Health Records. Insurance policies, doctor bills, prescription lists, life
important thing is to get a clear image. All these scans and photographs should be stored safely so you have a backup should anything happen to the original. It will be much easier to get back on track in the event of an emergency. Anything you really don’t want to lose can then be placed in a safe or other secure storage solution.
Minimise your paperwork by reducing it at the source. Consider switching to online billing for credit cards, cell services, utilities, and bank statements. These digital files can be stored in folders on your computer or uploaded to cloud services like Dropbox or Google Drive. Such services are safe to use. Systems
insurance policies. 4. Financial Records. Bank statements, tax returns, tax deduction records, investment records, loan records, credit card statements, IRD information. 5. Electronics Records. Mobile contracts and manuals, sales receipts and warranties for computers, laptops, and iPads; internet plans and bills; wireless router sales receipts and manuals. 6. Personal Records. Birth certificates, marriage certificate, divorce certificate, custody papers, immunisation records, passports, wills, funeral plan, and burial site information.
store multiple copies of data, all in different places—and feature user-specific encryption. If you want to use cloud storage but are concerned about security, you can set up two-step verification. This will require you to enter both your password and a code sent to an additional device (like your phone) to achieve access to documents stored electronically.
Now that your important papers are organised, it’ll be much easier to keep them in line! And you’ll know exactly where to file new ones. When filing a new item, do a quick check for any documents that may have expired so these can be deleted. FamilyCARE 23
Too much stuff? When does clutter become a ‘hoard’? By Virginia Linton With photos of folded socks all over Instagram and op shops suddenly swamped with donated goods, it feels like everyone’s got the Marie Kondo bug. Her methods on tidying up certainly work in terms of achieving a more functional life. However, for those with serious issues around hoarding, these methods cannot be applied so readily, and indeed, may cause great distress. When does the accumulation of clutter tip over into a disorder? The World Health Organisation (WHO) classified hoarding as a mental health disorder in 2018. It is defined as compulsively acquiring possessions on an ongoing basis, and experiencing anxiety and mental anguish when they are thrown away. Acquisition is the first half of it. People pick something up because it’s free, or it triggers a fond memory, or it might come in useful one day, or they could fix it or use it for a project. This may involve the hoarding of animals. 24 FamilyCARE
With this accumulation comes a resistance to parting with these belongings. Whether it’s because of perceived potential or sentimental significance, these items tend to have one thing in common - they haven’t been acquired to be useful right now. Another indicator includes hanging onto broken or discarded household items and rubbish. This accumulation may have led, or is leading towards, a deterioration in the living environment, to the point where it is unsanitary or dangerous - for example, blocking fire exits. This applies also if the clutter is causing distress or affecting the person, and their relationships with friends and family. “I didn’t even consider myself a hoarder until family members got angry about it and my girlfriend listed it as yet another reason for leaving,” says Glenn, 42. Most of the time he still regards himself as merely resourceful. Most of the stuff in his house comes from sifting through
skips, or discarded items dumped on the side of the road. On the rare occasions he wants to downsize, there’s the overwhelming task of sorting through the mess. He also has ADHD, so tends to be easily distracted and has a hard time focusing
ur Write Down Yo ey Stress Journ understand
rnal to Keep a stress jou tify will help you iden any triggers. This ns that amplify and avoid situatio t realistic view abou stress. Maintain a at eve and about wh what you can achi sis, e on a regular ba the people you se ily, s, friends and fam such as colleague e too. are able to achiev
Finding the keys
We all know what it’s like to run around in the morning frantically searching for keys — it’s another stressor on top of a long list you can do without. Simple things like making a single place for all of the important things in your life — keys, wallets and glasses — all do their bit for a smoother ride.
and concentrating. Incidentally, these traits are also listed as symptoms of hoarding disorder. One thing particularly stands out in the Squalor and Hoarding Guidelines put out by the Taranaki District Health Board (TDHB) for assisting frontline workers in assessment and intervention. It really does take a village. Specialist forensic cleaning is required when there are concerns about exposure to human waste, body excretions, or a risk of infection. Pest control fumigation is often required. The TDHB lists more than 10 other agencies which may need to get involved, from mental health services to the NZ Police, from Oranga Tamariki to Housing New Zealand. The Fire Service and the RSPCA are also often called in. Many of these services are available through a referral, but even so, costs can be prohibitive. Not counting the emotional and physical labour that families go through. According to a Yale study, discarding items for those with hoarding tendencies can trigger pain in regions of the brain associated with physical pain. Its triggers are diverse, and usually sit alongside other conditions such as depression, trauma, ADHD, PTSD, and dementia. Understanding more about what’s going on under the surface is the key to progressing forward. Which is difficult when all we can see are mountains of junk piling up around someone we care about, but it’s important to make a connection with the person, not their stuff. It can be helpful to learn about the implications of their disorder, how it is impacting on them, and avoid imposing our own standards of living onto them. www.carers.net.nz
DO YOU KNOW A HOARDER? KEY INDICATORS: 1 Keeping or collecting items that may 6 Struggling to manage everyday tasks, have little or no monetary value or useful purpose
2 Keeping or collecting items the person intends to reuse or repair
3 Finding it hard to categorise or organise items
4 Having poor relationships with
family or friends 5 Having difficulties making decisions
such as cooking, cleaning and paying bills
7 Becoming extremely attached to items, and refusing to let anyone touch or borrow them 8 Anxiety and fear-based thoughts
about possessions such as “I might need it again someday”
If you know of someone who may have a hoarding disorder and are seeking support for them, contact your GP. Gathering information about their current circumstances will assist in getting the right referral.
Things to consider • • • • • • •
Length of time they have been living in unclean conditions Type of accommodation, eg homeowner, Housing New Zealand Who they are in regular contact with Potential health and safety issues, eg rodents, blocked safety exits, risk of infection, mould History of their character, habits, past medical and mental health history Any language or communication barriers History of substance abuse,
aggression or criminal behaviour If they live alone or with others, or with a pet Whether the premises are covered by an existing Council Cleansing Order
Sort through your stuff!
Learn Marie Kondo’s techniques for sorting through your clothes and household items, room by room. Her bestselling book is available online, at bookstores, or at the library. WE HAVE
3 COPIES TO GIVE AWAY! Entry form, p8. FamilyCARE 25
The dreams we carry
the dreams we keep
Honour your promises to others, but donâ&#x20AC;&#x2122;t forget your own, says Kirsti Whalen-Stickley.
My mother died with very few secrets. I thought I knew everything she had to confess as I had cared for her. I knew the twist of her bones as I had studied her x-rays like a doctor. I knew her marrow. I knew the sound of her heart (I heard it, I felt it) and I knew her wishes. I fought for her wishes. I fought for them as I gave her morphine and as the doctors withdrew treatment we both knew she didnâ&#x20AC;&#x2122;t want anymore. I held her hand as she died. I told her she could go. I told her because I knew that she was waiting. She had been waiting so long for me to say goodbye. 26 FamilyCARE
feature fast moving men, and you’ve got a frail and frightened Kirsti thinking she made a terrible mistake. But I had to remind myself that we’ve done hikes before I feared and regretted, until I looked back and witnessed the mountains I had overcome. I think some trekkers love the physical act of walking: lost in the woods, lost in their thoughts, straining their body to its limit and feeling the rush. I feel this in moments, but for me the thrill of hiking is knowing that I can do something I doubted I could complete. Knowing that I am more than what I believe myself to me. The evidence is in the hills, and it can’t be taken from me. I can believe so little of myself, but I can’t deny the paths that I have travelled by foot, under my own steam.
AS WE BEGAN TO CLIMB, I BECAME BREATHLESS. MY HEART RACED, A PRODUCT OF THE ALTITUDE AND THE EXERTION AND FEAR. I HAVE NEVER WALKED SO HIGH. Acts and secrets
She had started saying goodbye long before I did. She did it in acts. Birthday cards for years without her. Journals in which she told me that I was someone; that I could be someone. And in a request, which she only told my father. A secret she kept from me. I think maybe it was too painful to speak together. To imagine a world in which I was a woman, and free, and without her. To imagine the steps I would take into fearsome places, without my backstop waiting to rescue me, to help me, to tell me I could. So she told my dad, who told me. The request: that there were two things she wanted me to see in my life. One was the Taj Mahal. This, she said, was a symbol of eternal love. The other was Machu Picchu. She had dreamed of travelling there, but she never did. And so she handed me her dream, and asked that I would live it for her. To walk the steps her legs were too weary for.
When my husband and I first started planning this extraordinary adventure, eight months travelling the Americas and the world, my Mum’s request sat deep in my heart, and deep in the trip’s center. I knew that in coming all the way to Peru we would simply have to see Machu Picchu. www.carers.net.nz
We chose to trek there, and because the Inca Trail books out more than a year in advance, we chose a challenging nine day option that would lead us to the ruins of Choquequirao and over a range of mountain passes, before reaching the place itself: Machu Picchu. I spent the first three days of the trek regretting everything. For many years now I have struggled with knee pain on long hikes. Apparently it’s a common condition that affects women more than men: a lack of glute strength (reasons unknown) combined with a slightly wide hip-set means that my knees don’t work quite the way they should. I’ve seen many physios and done endless exercises to try and fix the problem – and I think one day I will – but it wasn’t enough to ensure a painless hike this time. And the first day of our trip: vertical downhill. For hours.
I love hiking more than almost anything, but I’m not especially good at it. It’s not just my knees but my mind. I find it very hard to be lost in the moment of the climb, and instead catastrophise about the hills awaiting me, and the impossibility of my success. Combine this intellectual tick-tick of disaster with high altitude, sore legs, blisters and a team of staunch mules and
And there are only two options with hiking: you do it, or you don’t. You fail, or you succeed. And maybe you succeed by using a mule at times, and maybe you walk more slowly than you expected; maybe the hike takes four days instead of two, maybe you stumble, maybe you fall. But if you finish, no one can take that away from you. Completing a hike is one of the most certain things I have ever felt. On the fifth day of our trek, we walked for hours across farmland dipped in the honey light of the dawn. We stood aside for troops of mules kicking the dust into clouds, for crinkled men with sun-ripened skin leading those same mules beneath the open skies. We rounded a corner to see the impossible, craggy heights of snowy mountains, standing over us as ancestors. We ate cookies at their feet, and the condors began to circle: three creatures with wingspans as wide as always, soaring even higher than the hills. As we began to climb, I became breathless. My heart raced, a product of the altitude and the exertion, and, I think, of fear. I have never walked so high. I have never felt the power leave my legs like a plug pulled from the bath, sucking away desperately, to nowhere. I’ve climbed mountains, but never like this, with the air thin as a cotton sheet in winter, and glaciers carving down towards me. I walked as far as I could. Then I rode a stocky little mule until I could walk again. We ascended and ascended, the sun FamilyCARE 27
rich against our arms but the air cut-cold. We climbed until we were within the clouds, their bodies eddying around us, racing and lifting and moving like so many ghosts at the mercy of the wind.
No going back
And suddenly, we reached the top. From a distance, I was the ice, the snow. From the ground I would be nothing, just a small speck against a great and extraordinary thing. Invisibly inside the sky, where people look up to marvel. Where I had looked up in disbelief. Two days prior, our guide had told us about a client he once took on the Inca Trail. She came with her sister, who was fit and active and could walk long distances in quick time. But this woman was bigger, and hadn’t trained for the walk. On the first day, which should have been
I HAVE FORGIVEN MYSELF FOR STUMBLING, FOR RUNNING OUT OF BREATH. I HAVE ALLOWED MYSELF TO BE SLOW, AS LONG AS I MOVE FORWARD. brief, she arrived hours after all the others – hours, in fact, after dinner and dark. Before our guide had the chance to seek her out for a conversation, she approached him and asked to talk. “I know,” she said, “that you’re going to tell me I have to go back. But I can’t.” “My sister and I grew up without knowing the other existed. My father had another, secret family, who we didn’t find out about until he died.” “That was when I met my sister. And going to Machu Picchu was her dream. And she asked me to come with her.” “If you send me back, she will come with
me. There’s no way that she won’t, no matter what I say.” “So I can’t go back.” She walked all the way, arriving to the campsite after nine each night and setting off around 4 each morning, hours earlier than the rest of the group. When she and her sister arrived at the Sungate, the famed and magical entrance to Machu Picchu, they held each other and they cried. “That was when I understood about dreams,” our guide told us. “I don’t turn people back anymore.”
I realised that I’ve never really considered my dreams in too much depth. There have been things I’ve wanted to do, sure, and things I have wanted to achieve. But I couldn’t say what my dream was. I dreamed of going to India, to see the Taj Mahal. I dreamed of fulfilling this wish my Mum carried, for me to see Machu Picchu. I had dreamed her dreams for so long I think maybe I lost sight of my own. And then there’s this other thing that I’ve never been quite able to articulate. I have never believed in my survival. Though I tested negative for the gene that gave Mum her cancer, and have every logical reason to believe that I will live a long and happy life, I still don’t think it’s true. I fear standard medical tests because I am certain that they will finally reveal the www.carers.net.nz
truth: that I am not going to live. I’ve had my health scares and challenges, but none have threatened my life in the way I am certain one will. Perhaps, in the same way we learn the love we’re shown, we expect the life we live closest to.
It’s hard to imagine greatness when you’re sure your life is limited. It’s hard to believe in a future you have no faith in. It’s hard to look into a distance you can’t see. It makes it really hard to dream. I realised that the only dream I’ve ever allowed myself is survival. To live. To live longer than my Mum did. To live and to have dreams of my own, and to achieve them.
When I reached the summit of that mountain, I felt more alive than I ever had. I looked at the trail I had walked, a snaking impossibility zigzagging through
the earth, and I felt proud. I thanked my legs for carrying me. I looked at the ice above me, and I felt the awe reserved for the hardest things. I looked at the man beside me, and I felt at home. And I gave myself a new dream. I told myself that I could climb mountains. That I could witness amazing things in the world, and be strong enough to see them. I could be someone who kayaked across lakes and walked to summits and clung to rock faces. I could have faith in the body that I was always so sure would betray me. I could think the best of it, instead of the worst. The best part was, the dream was already coming true. While one voice told me that I could be someone who could climb mountains, another spoke more loudly: you just did. I made it to Machu Picchu. I stood amid the ruins of endless years, I learned about the architecture and marvelled at the civilisation’s prowess.
I watched the light break through the hills and I let her go to them. I asked them to hold her. I asked these ancestors to find the path that travels to wherever she is, whatever strange vibration echoes the beat her heart used to carry.
I HAVE CARRIED DREAMS OVER PASSES THOUSANDS OF METRES HIGH, AND FOUND MY OWN. THEY’RE NOT AS HEAVY. www.carers.net.nz
Because those were not my mountains. They held the dreams of other people. The women who hugged and cried amid their peaks. The man who reached Machu Picchu on foot at 85 years old, and realised that this was his last trip, the one he had to take. My mother, who died before she could finish living. And I loved her there, and in that moment. I looked at the hills, and I gave her all the love I could. But this was her dream. It wasn’t mine.
Beauty and pain
I have found it too easy to let my life be hemmed by its losses. A year and a half ago, on my mother’s birthday no less, I discovered that the baby I was carrying was ectopic, and had to be removed. This was less than three months after my beloved grandmother’s death and, like when Mum died, I felt ripped apart. Not just by the surgery, which was sudden and painful and heartbreaking and necessary, if I wanted to live. But by the realisation that could you can heal and be torn again; you can believe in motherhood even without a mother, and it can be taken from you. You can hope that your body is better than you believe, but it can still fail you. You can want something more than you have words for, and it can still be taken away. Travelling here, on this adventure, was in some small part because of that loss too. I was far too afraid to try for another baby, and I needed time. I needed a different fear: zika virus, perhaps, or malaria, or deep vein thrombosis on a flight, or just timing, just bad timing, to make me wait. I needed time to prove to myself that the tiny life I held within me was real, even if it was just a bunch of cells. Even if it was nothing, it was something to me, because I wanted it. It’s not a foetus when you want it. When you want it, it’s a baby. But now, I am travelling, with the man I love. I am seeing a world I barely knew existed, one crackling with energy and colour and light. A world in which I see wild horses running across open plains. A world where monkeys leap from tree 30 FamilyCARE
IT’S HARD TO IMAGINE GREATNESS WHEN YOU’RE SURE LIFE IS LIMITED, TO BELIEVE IN A FUTURE YOU HAVE NO FAITH IN, TO LOOK INTO A DISTANCE YOU CAN’T SEE. to tree above me, and anacondas sleep coiled in hushed grass. I drank wine on a balcony overlooking Quito’s ancient plaza. I watched the sunrise over the Andes.
We have found a new kind of love together, deeper than I ever knew. I have spent every second by his side and seen him as more than I ever did: more silly, more gentle, more kind. And I have climbed mountains. I have forgiven myself for stumbling, for running out of breath. I have allowed myself to be slow, as long as I move forward. I rode a mule when my faulty knees couldn’t climb anymore, without allowing this to feel like giving up. Instead, it was surrender. I have carried dreams over passes thousands of metres high, and found my own. They’re not as heavy. These dreams I’ve found for myself have almost no weight. They are not for my Mum, or for my baby. They are not defined by something which has gone. They are not penance, they are not a sentence. They are just me, believing that I can be extraordinary. And, too, that Marcus and I can be extraordinary together, not because of those who have gone, but because we believe in each other, and we believe in ourselves, and we keep walking forward. And even if I found out I was not going to survive, even if my mother’s fate was my own, I would keep walking forward into
the arms of whatever awaits. Because my dreams don’t lie in some distant place. It is simply knowing that one step in front of the other will carry you to the top. So you keep walking. Or rolling. Or travelling. You keep climbing until you are the peak of the mountain: you stand on top of the highest thing knowing you will climb again, higher still. Kirsti is a former young carer and a founding member of the Young Carers NZ Advisory Board. She and Marcus now live in Wellington, where Kirsti works as the National Educator for Autism NZ. She continues to assist YCNZ in her spare time, helping to build a support network for children and young people in caring roles for loved ones. If you’re a young carer, or supporting children and young people up to the age of 25 who are caring for friends or family members, request our free resources! Email firstname.lastname@example.org or freephone 0800 777 797 to order single copies of our infosheets and booklets, or we can provide bulk copies for schools, churches, community organisations, and other networks that work with young carers.
for the future
Yukiko Kuboshima’s vision for the future is one in which NZ’s increasing ageing population can step forward into a world that welcomes them in. Which is why the Victoria University PhD architecture student has chosen to focus on housing solutions for the elderly. “Failure to create housing that supports a high quality of life can lead to isolation and feelings of being a burden,” Yukiko says, adding that acting now may prove to be cost-effective in the long term. “There is also an economic cost from the high level of care needed if a person cannot remain independent. As the ageing population is expected to grow rapidly, the impact on society will be immense.” Her initial research meant spending many hours with 30 residents requiring care in 13 elderly housing complexes, ranging from retirement villages to public and private sector rental housing complexes in the Wellington region. “Having myself put in their living environments helped me with understanding their needs.” “For example, through the observation of their difficulties in walking over a level difference with a walker frame or trolley, I could understand the significance of avoiding any tiny level difference on the floor. One post-stroke patient with severe hemiplegia could not go out of his unit manoeuvring his trolley, because he could not go over a one-centimetre level difference – if he had tried, he would have lost his balance and had a fall. So, he stored his mobility scooter inside his bedsit
“Larger homes are harder for elderly people to maintain,” says Yukiko. unit, which took up a lot of space.” Her findings for post-stroke patients indicates that being in their own homes is the best option for best care, however, “staying in a full size home is expensive, because these homes require extensive renovation to make them suitable for the elderly,” Yukiko says. “Larger homes are also harder for elderly people to maintain, leading to a loss of control over their environment. But residential care is also not an option for many – it can reduce quality of life due to lack of privacy and autonomy and comes at a high price for the Government.”
Ideally bathrooms should have enough space for two people, the elderly person and a caregiver. www.carers.net.nz
Housing is changing to help older people ‘age in place’. By Angelique Kasmara
Bathrooms are particularly important, she says. “A common bathroom model for the elderly is the wide, flat ‘wet room’ style,” she says. “Ideally, bathrooms should have enough space for two people—the elderly resident and their caregiver— should provide as much privacy as possible, and should contain water flow for safety and to keep personal items dry. Unfortunately, few current ‘wet room’ style bathrooms meet these needs.” Yukiko will continue looking into specific architectural solutions to cultural and social housing needs for the elderly as part of her PhD research. And she wants to focus on housing design to support those with additional needs, such as care needed around dementia. Her work is closely aligned with ongoing research by the Victoria University of Wellington Therapeutic and Rehabilitative Built Environments research group. “I look forward to working with the researchers here to solve these problems.” Yukiko Kuboshima is a PhD student at Victoria University’s School of Architecture. She recently won a Wellington International Student Excellence Award for her extensive work on architectural improvements to support quality of life for the elderly and others in care. FamilyCARE 31
WE ARE CALLING FOR A BETTER RESPITE AND PAID FAMILY CARE SYSTEM WITH OUR
of those caring for loved ones
Unpaid carers in New Zealand are twice as likely to be female, devoting an amazing average of 30 hours a week to caregiving on top of any paid work and other family commitments.
The choice to care for someone who is unwell, elderly, or has a disability s or injury means many women suffer financially as a result; they earn 10% less than Kiwis without family caring responsibilities and wcountry w.she-cares.org can’t easily save for their own retirement – while saving w the billions of dollars. To show them we value their contributions to family life, society, and the economy, we are rallying for a better respite and funded care system during 2018-19 with our She Cares campaign.
FIND OUT MORE AT OUR WWW.SHE-CARES.ORG
Join our network - it’s free! By connecting with Carers NZ, we can keep you informed about issues important to all family carers. Contact us on 0800 777 797 or email email@example.com
Recognising and supporting New Zealand women in caring roles.
Unpaid carers in New Zealand are twice as likely to be female. The average carer devotes 30 hours a week to caregiving on top of her other work and family responsibilities. This generally comes at great personal cost. Supporting a family member or friend who is unwell, elderly, or has a disability or injury means many women experience financial hardship, earning 10% less than Kiwis without caring responsibilities. This means they can’t easily save for their own retirement – while saving the country billions of dollars. “Two thirds of New Zealand’s 420,000 family carers are women. It’s a role women have always had but today’s women are juggling a lot. They work, they care, and without support they face health risks themselves,” says Carers NZ CEO Laurie Hilsgen. Carers NZ is campaigning for a better respite and funded care system, working with the Carers Alliance of 45 national notfor-profits to lobby on a policy level. Throughout the She Cares awareness campaign, we have reached out to women to remind them of the need for self-care, sending out free infopacks, wellbeing treats, and organising events such as Lumino Day, which provides free dental checks to carers. We connected with individuals all over New Zealand during the She Cares campaign, which continues through 2019. Carers NZ is grateful to the women who shared their stories to help others understand what it’s like to be a woman who cares. While everyone’s story is unique, there are some common themes: a profound sense of isolation, lack of a safety net, and difficulties in being able to access meaningful respite. Frustrations dealing with government agencies and services. And it’s evident that many women carers have no time for any self-care. It’s also hard for women in caring
situations to work and earn. Many we spoke to this year have compromised their careers, goals and dreams, or changed their career trajectory altogether to accommodate caring. But the amount of gratitude and love coming through for their families and whānau is inspiring and humbling. Through the rest of this year we’ll continue raising awareness for women carers. Do keep coming back to our She Cares website as we will keep adding stories and updates: https://she-cares.org “Kaiti is fully dependent on me. She is with me when I vacuum, with me when I do dinner prep, with me when I hang the washing and with me when I shower and go to the toilet. I spend hours doing physio and working on communication (with her). Some days I may only get three hours’ sleep.” – Morag Housiaux “Having Jeannette has opened my heart, and so my family and I are able to see the positives in everything.” – Meletelini Logan “Being a carer for a loved one is the loneliest of journeys. I have often wished I could adequately explain to my bosses, my friends, what I was going through with the grief and loss ... this isolation can be devastating, and solutions need to be tackled through policy change.” – Ngaire Booth “When you just want to give your child the most optimal outcomes possible, getting yourself together to actively support them towards independence feels like a natural progression.” – Maree Kirk on working towards a doctorate focusing on wellbeing for children with a disability
TWO THIRDS OF NEW ZEALAND’S 420,000 FAMILY CARERS ARE WOMEN. IT’S A ROLE WOMEN HAVE ALWAYS HAD BUT TODAY’S WOMEN ARE JUGGLING A LOT. www.carers.net.nz
I have been a solo parent for 17 years to three kids. The other two have left home and it’s just Jess and I at home now. I became a volunteer firefighter two years ago, with the operational support of the Warkworth Brigade. I joined because I wanted to give back to the community that has been so wonderful to us both, and also to give myself an outlet away from my caring role, which can be completely consuming. It’s nice to do something for me, although the fire community has completely embraced Jess as well and I can work around her needs which will always come first and which they are totally supportive of. Jess has just turned 22. She has Down Syndrome and also a complex heart condition which has seen her have four open heart surgeries and a mitral valve replacement. This has left her needing warfarin medication for life. I test her blood levels at home and self-manage the medications. She is also partially deaf, so things can be very challenging for her in the medical sense, but we have a pretty good life. No day is a typical day for Jess. Each day brings its own challenges depending on how well she is. Some days, even weeks, can be very routine, and then others are led by blood levels and meds. Any illness such as a simple cold can change the dynamic of our days and weeks until blood levels become stable again. Jess attends an adult education program three days a week from 9am - 2.30pm. Generally life is good, special and precious, and we embrace every moment. FamilyCARE 33
LET A WOMAN WHO CARES KNOW
“IT’S NOT ALL UP TO YOU” PLEASE JOIN CARERS NZ FOR OUR
We are sending free infopacks to women carers during our campaign. To order a pack, please contact us on 0800 777 797 or email firstname.lastname@example.org
of those caring for loved ones
You can order bulk packs for carers in your network, They contain resources every carer should know about, plus some s fun surprises!
“NOT EVERY PERSON WHO USES A DISABILITY PARK IS OLD! HAVING HAD THREE HORRIBLE EXPERIENCES WITH THIS, IT DOES SHAKE YOUR CONFIDENCE ABOUT GOING OUT AND BEING A PART OF THE WORLD WE LIVE IN.”
“My daughter Kaitlyn’s (Kaiti) name means ‘pure’,” says Morag. “She is pure joy, pure heart, pure in her expressiveness, pure mischief – our wild child.” “She loves music, lights, trees, horses, flowers, and adores her family, especially her big sister and grandparents.” “Kaiti reminds us to look for the beauty in our lives, the things that are always present around us but that we are often too busy to notice.” When Kaitlyn was about four months old, Morag and her husband Mike noticed that she was not reaching her milestones. Kaitlyn was unable to roll, seemed absent in terms of awareness of other people, was sensitive to light, noise, and wind and struggled with feeding. They embarked on a series of genetic tests, a process that took nearly a year. The testing, as well as an MRI scan, confirmed that Kaitlyn has congenital muscular dystrophy. Morag decided to give up her career to look after Kaitlyn full-time. Kaitlyn is non-verbal and requires support to walk. She communicates through PODD (Pragmatic Organisation Dynamic Display) and uses a Rifton Activity Chair. Her condition primarily affects Kaitlyn’s brain and eyes. She is only one of five in the world who have this particular strand of MD. “Kaiti is fully dependent on me,” says Morag. “She is with me when I vacuum, with me when I can do dinner prep, with me when I hang the washing and with me when I shower and go to the toilet.” “I spend hours doing physio and working on communication (with her). Some days I may only get three hours’ sleep.” Morag also works part-time at not for profit Women of Worth as its Lead Facilitator / Programme Developer. Her older child, Abi, is at school. “Abi has seen and experienced things that as a Mum, I would never have wished on her,” says Morag. For example, she’s witnessed Kaiti’s seizures, and at school, she has been teased about and blamed for her sister’s condition. But she has also gained so much through having Kaiti as her sibling, such as more compassion and empathy, the ability to see the good in others and to help those who are less fortunate. “Abi is a beautiful, caring, smart, compassionate, big hearted kid who has so much natural talent and sassiness that www.carers.net.nz
her future is filled with amazingness,” says Morag. “She is a natural leader and a confident kid who knows who she is and what she wants.” The family has had discouraging experiences when it comes to navigating government support systems like needs assessment and accessing financial assistance. “Why are we subjected to the third degree to get the support we need? Thinking outside the box, we don’t need help with Kaiti but I would welcome support with housework and other tasks. Not every person is alike of course, but this is one area that really needs reform and change.” “And there are the misconceptions she’s had to face from other people, such as not every person who uses a disability park is old! Having had three horrible experiences with this, it does shake your confidence
I have learned so much. I have learned to trust my judgement to do what is right for us as a whānau. I have learned what it means to be prepared . I have learned to celebrate and look for the joy in small things.
about going out and being a part of the world we live in,” she says. However, she tries to live each day to the fullest. “Of course I love my whānau, we’re always looking for the special moments that happen organically!” She stays connected with the Muscular Dystrophy Association, Wellington Early Intervention Trust, Riding for the Disabled for support and, when she can, pursues her interests, whether it’s gardening, walking, spending time with friends or going for a walk on the beach. “This road of being a whānau of a special needs child is tough, at times it is cruel and takes our breath away.” “It is the most rewarding yet unappreciated job.” “It is 24/7 and is constant and is done due to an unrelenting love for our girl.” “My hope is that we as whānau would be recognised for the job we do and paid so we do not have to work part-time and can meet the essential needs of our family.” “It is tough enough and without the moral and financial support of our tribe and me working part-time and my husband working overtime, we would not survive.” “To all those families who are in a similar position – kia kaha, may you know you are loved, and may you feel the joy and love that is found in caring for your loved one.”
I am learning to be kind to myself and to allow myself kindness and love. I have learned the importance of family and a village and ensuring that relationships as much as possible continue to develop.
I have learned that my best is good enough.
Technology is driving new wheelchair features and designs. By Angelique Kasmara The wheelchair has undergone many iterations over its earliest recorded use, some 2000 years ago, but the basic model – that of a chair on wheels - has remained constant. However, recent technological advances, coupled with growing trends in the accessibility industry, suggest that our traditional idea of the wheelchair and its core functions are undergoing a massive shakeup.
Apps and metrics
This surge of interest has been attributed to the world’s rising ageing population, fuelling demand in the wheelchair and powerchair market. A dizzying array of designs are already here with more emerging globally. There are chairs which will stair climb, to athleticsoptimised wheelchairs and offroading vehicles. Wheelchair designs can be optimised for remote conditions, mountain biking and even skiing. One current trend in the global accessibility industry is the focus on apps which can be paired with fitness-tracking devices designed specifically for wheelchair users. New and established brands are recognising that tracking the fitness of a wheelchair user requires distinct algorithms. There are also apps that make it easier for wheelchair users to get around by marking the accessibility of buildings, businesses and other spaces. Wheelchair mobility metrics gadgets and devices monitor the user for poor posture. Smart tech allows hands-free interaction with under development, it is being tested in Kenya and India. iOS and Android devices, computers, and home systems. Amongst this array of new products, what of commonly used models used by the majority of people? In partnership with UK Smart technology based innovation non-profit Nesta, Toyota learned that this reliable Several models even offer audible messages that notify the user of but clunky technology prevents more than a third of wheelchair operational errors, giving them time to steer away from hazards. users from working, and a ComRes/British Polling Council Some have built-in anti-sway systems, which keep the chair survey also suggests that 90% of wheelchair users say that they straight when tackling side slopes. experience some form of physical pain during their work day. More smart technology can monitor the health of your wheelchair, Toyota’s response has been to plunge $4 million into its and allow remote driving and locking. Foundation’s Mobility Unlimited, to give designers a chance to Others have diagnostic capabilities to make repairs and shake up the traditional paradigm. maintenance a lot simpler. The potential for future designs is endless. Access and universal design Stationary wheelchair trainer platforms that could enable The Foundation plans to fund wheelchair alternatives, requiring wheelchair users to exercise, treadmill style, are in development. design teams to co-design with people with lower limb paralysis. EPFL’s CNBI project has recently developed a wheelchair that is The best prototype will be awarded $1 million in seed money controlled by brain impulses. and announced during the Tokyo 2020 Olympic Games. Of course, the prices and cost of shipping on some of these As impressive as these new developments are, there is also the cutting-edge designs is prohibitive, putting them well out of range core principle of access to consider. The basis of this is grounded of the average wheelchair user. in universal design, that all people regardless of disability are The technology of 3D printing could provide solutions when entitled to equal access to all parts of society. it comes to producing affordable designs and doing away with The Transport and Industrial Relations Committee initiated an transportation costs. inquiry into the future of New Zealand’s mobility in 2015. They heard from a disabled persons’ advocacy group that transport Global investment and mobility are important for disabled people to access A variation on the wheelchair is the Leveraged Freedom Chair employment, education, and economic opportunities, and to aid (LFC), designed by the MIT Mobility Lab in Massachusetts, USA. health, social participation, and inclusion. It is designed to be low cost, constructed with local materials, for Suggestions included involving service users when considering users in developing countries. Modifications include hand-controlled accessibility in transport planning. levers which enable users to travel over unpaved terrain. Currently This may come through increased, and safer, mobility car parks, 36 FamilyCARE
kerbs with ramps, adequate lighting, and appropriate signage. Also raised in discussions was the recommendation that sufficient funding become available for the purchase and modification of vehicles for people with a disability. When it comes to selecting a wheelchair, it makes a lot of sense to support individuals with the purchase of a reliable model which meets their specific needs and provides them with comfort and satisfaction.
FREEDOM CHAIR TRAVELS
Paul Monk loves his job. When asked about his role as managing director of Montec Mobility, he laughs. “It’s just me!” he says. When testing out several wheelchairs for a friend with a disability, he came across the Freedom Chair, and was immediately sold on its versatility and compactness. He’s since become its sole distributor in New Zealand. Paul says the Freedom Chair has the edge on others through its freedom of movement. It’s a piece of equipment that gets you places. “I received great feedback from a recent client who took her chair along on a recent trip to the UK,” he says. “She said it was very responsive, easy to pack up, and fantastic to get around in.” He does add that it’s not the best chair for sitting in over long periods of time, as you can’t raise it or tilt it to adjust for your comfort levels. However, it is a very comfortable chair to get around on. The Freedom Chair is currently available through ACC, and Paul hopes it will become more widely available through other channels. He trains every service user himself, a job which takes him up and down the whole of New Zealand. It means that he’s clocked up many hours on the road, but the joy he gets out of being able to meet every potential client in person is worth it. “I really do get so much out of meeting people and training them how to use the chair. It can take up to 20 minutes, depending on the individual.” “For example, I’ll demonstrate how you can modify your reaction speed to one which fits you, which is something you can’t really rush.” “Meeting people is the best aspect of the job. I’ve met people with neuromuscular diseases, such as MS, those who are recovering from a stroke or have been in car accidents trying to regain their life.” “It’s fantastic to have the opportunity to hear their stories and help them in this way.” To learn more about Paul and Freedom Chairs, visit www.freedom-chair.nz. You can phone him on 0800 466 626 or email email@example.com
help foR CarerS!
Do you support a friend or family member who is ill, has disabilities, or a chronic condition? Carers NZ offers useful information, and advice about available help around the country! We are a national not for profit that works with many other community, government, and charitable organisations to support those in caring situations. Carers NZ assists carers directly via its 0800 and email services, and acts as Secretariat for the New Zealand Carers Alliance of 45+ national not for profits who are working in unity to give carers public visibility and a voice in decision-making that affects them. Phone our National Resource Centre to request a free carer infopack or for a referral to a carer support network in your area. It's free to join our network (just call our 0800 helpline) or email firstname.lastname@example.org You'll receive regular e-newsletters, email and posted updates, and we'll keep you informed about important news all carers should know about. We'll also let you know about learning and social events you might like to attend in your area, or online! You might also like to check out our web space that's just for carers. Visit the site regularly to see new articles, blog posts, and helpful information to support you in your role!
email@example.com Facebook www.facebook.com/carersnz Twitter #carersnz Pinterest CarersAir Phone Carers NZ's National Resource Centre Monday to Friday during business hours: 0800 777 797 FamilyCARE 37
Ashes to ashes
More people are choosing to be cremated when they die, with many creative options for ‘cremains’. By Sarah Wale Cremation instead of burial is increasingly popular as land becomes scarcer and burial plots more expensive. If you move from place to place and want to keep your loved one with you, this can be the best choice. Having decided on cremation, you will find that it offers a much greater range of options for the final resting place of your loved one. Here are some suggestions and practicalities you might like to consider.
How and where can I scatter or bury ashes?
There are very few rules surrounding the disposal of ashes in New Zealand but you must consider cultural sensitivities and check on local bylaws, which might prohibit this in certain places. Do not release them onto ground which is used to grow food or into a river which is irrigating land where food is grown. Don’t scatter them on private land without the permission of the owner. 38 FamilyCARE
Authorities in New Zealand are very relaxed about the release of ashes onto public parks but ask you not to strew them on flower gardens, particularly roses, as they can be harmful to the plants if large quantities build up; this is why many cemeteries have now closed their rose gardens. Wilderness reserves, sports fields and other places that may have a special meaning for you or the deceased are also popular. All they ask is that you are discreet and ensure that members of the public are not
upset or inconvenienced by your activities. Disposal on water is popular and this can be done either by scattering the ashes or floating them in a biodegradable container, perhaps placing them in the downstream reaches of a river to be carried out to sea. Plastic should never be used for this. If you wish to scatter the ashes out at sea or on a remote spot inland, but are unable
ONE OPTION IS TO HAVE A SMALL AMOUNT OF ASH MADE INTO A BEAUTIFUL PIECE OF GLASSWARE OR SILVER KEEPSAKE JEWELLERY. www.carers.net.nz
Remembrance Spheres to do so for reasons of inaccessibility, this can be arranged for you by specialist companies who will take your loved one by boat or air and dispose of them carefully over the chosen spot.
What sort of urn?
You will normally receive the ashes in a canister or box, usually made of plastic or biodegradable cardboard. If you bury the ashes in a cemetery plot, or scatter them in a favourite place, you may use the container provided, or purchase a simple scatter tube which ensures the ashes don’t all blow away at once. If you wish to keep the ashes at home, a wood box or a metal or china jar may appeal. There are many varieties available to suit every taste or pocket, generally from around $100 to $500. You will find your local funeral director very helpful or, for a wider selection, you can buy them online and transfer the ashes from the original container yourself. Some families wish to share the ashes between them and there are many ways this can be accomplished. Most providers of urns offer miniature boxes or vases, often called a ‘keepsake’, so that each person can have a share of the ashes to hold dear. Alternatively, you could each make your own container. If you don’t feel comfortable dividing up the ashes, take turns keeping them for a period before passing them on to the next friend or family member. The person’s ashes could also be kept and then interred with their spouse later, either co-mingling the ashes or, if the longer-lived spouse wishes to be buried, putting the ashes in the coffin with them.
Other options include having a small amount of the ash made into a beautiful piece of glassware such as a paperweight, stained glass lampshade, or a necklace pendant, ring or other jewellery item. Silver lockets or rings with a pinch of ash inside are also popular and another nice way to share, with members of the family each receiving one. Glass or silver keepsakes cost from around $20 up to $300. If your funeral director can’t help you with this (though most can) you will www.carers.net.nz
“Practice, practice, and more practice makes perfect!” says glass artist Peter Viesnik, of the Remembrance Spheres he creates painstakingly by hand in his Grey Lynn, Auckland studio. He originated the glass spheres as a unique way to keep the memory of a loved one close. Families bring their ashes to Peter, who then encloses them within layers of glass to create their distinct spiral shape within the sphere. He has created up to 2,500 of these for bereaved families. “There can be some very poignant moments. Recently a middle-aged couple brought in the ashes of their son, and watched me making a sphere and touch stones,” he says. The idea to create the spheres was sparked after he was once asked for advice from an ex-student about how to incorporate ashes into a pair of earrings. After giving some tips about the process, Peter started researching ways to do this himself within his own glass practice, at first experimenting with non-human ashes until he came up with a design he was satisfied with. Orders starting coming in when funeral directors placed Peter’s creations in their display cabinets. Making the spheres is a delicate procedure. He starts by carefully sifting the ashes to remove larger particles. Laying on the centre colour is the first step, then a layer of molten clear glass is gathered from the furnace and the ashes are picked up together with the coloured dichroic glass. Further layers of clear molten glass are added to build up the size and to give the spheres dimensional depth. The ash layer is twisted to form a spiral. Finally, Peter engraves names, dates, and messages into the finished product.
Another Remembrance Glass product - Touch Stones - undergo a slightly different process, and are made using the ash with selected colour chips. When asked how he came to become a glassblower, Peter says that after a former career as a restaurateur, he wanted to do something creative. After searching around, he had an epiphany when visiting a glass blowing studio. “I really like the plasticity and the effects of colour you can get in glass,” he says. He’s now one of New Zealand’s best known glass artists. The Remembrance Spheres are relatively new in his practice of nearly 40 years. He started making them around eight years ago, adding Touch Stones to his repertoire later. Peter sometimes gets special requests, such as whether he can mix the ashes of parents, or grandparents, or use the ashes of a beloved pet to create a sphere or Touch Stone. “Mostly dogs, but I did get a request for a floppy-eared rabbit once. People are very grateful and appreciative which makes my providing this service worthwhile.”
find information online and in magazine advertisements. If the ashes are those of a small child, it is possible to buy a soft toy – or maybe use a favourite item belonging to the child – and have a box filled with their ashes inserted into the body of the toy. Some more unusual, and costly, ways to use the ashes are to have some incorporated into the ink for a tattoo or mixed into paint for a very personal portrait of the deceased. Divers might like to have their ashes made into a reef rock and have it placed on the seabed to form a new habitat for ocean life. Go online to check out other imaginative ideas – there are specialists who can help with almost anything you can dream up.
You have a wonderful opportunity to celebrate the life of the person to whom you are bidding farewell exactly as they would have chosen for themselves.
Acknowledgements: We thank Paul at Geards Funeral Home, Kaitaia, and Ruth at Harbour City Funeral Home, Wellington, for assisting with this article.
someone who will listen, because they’ll call in a clearly distressed state,” she says. She understands this, and waits until they are ready to talk about what they require. She says that for a lot of people, the act of scattering ashes can be difficult. Being able to keep some of them within a memorial bead is a tangible way of having a part of your loved one to always hold onto. “And when you hold the beads or wear them, they warm up to body temperature.”
One of her most poignant experiences was working with the ashes of a young woman, a student whose artworks showed a great deal of promise. “Her mother showed me some of her pictures, and I recreated one of these works into a bead, and placed some of her ashes within the scene,” says Emily. “It is an honour for me to be able to help people in their grieving process.”
Keeping loved ones close Nelson-based glass artist Emily Lake incorporates cremated remains into wearable glass beads. She’s been flameworking glass into sculptures, jewellery and pendants since 1978, but steered her practice towards its current direction after her husband died 13 years ago. “I never made memorial beads for myself, because my husband’s ashes had already been scattered by then,” she says. However, her experience of loss did guide her to reflect on what she could do to help ease the pain of separation from a loved one. With the encouragement of fellow glass artist Peter Viesnik, she began to explore this within her art. Before long, she was receiving requests through funeral homes, her website, and veterinarian centres as well. “Quite a few people want to get memorial beads made from the ashes of their beloved pets,” says Emily. She once made a hollow, heartshaped bead which enclosed parrot feathers from a family’s pet parrot. Another time, she created beads enclosing the ashes from a pet rat. She is meticulous about creating her bespoke items that honour the legacy of a loved one. “Often in the first instance, the person on the other end of the phone just needs
Learn more about Emily and Flame Art at her website, www.flameart.co.nz
on the bench
where you said you were dying By Laurie Hilsgen We lost each other. We lived in different places. Things were happening. I thought you were mad about something because I stopped hearing from you. But my own rope was fraying and the ends kept coming apart. Work. Care for my partner, who’d had a stroke. Work. Care for my partner. Repeat. Repeat. Repeat. Repeat. Repeat. I didn’t know you were dealing with your own troubles. Years passed. “This is silly,” I thought, re-reading one of your old letters. My partner had died. My life had changed again. I had a baby. I missed you. I missed how you cooked like Julia Child, with vats of butter and cream. I never bought butter or cream, but when you visited I transformed into Arthur Ziffel, the pig from Green Acres. I Ziffelled every mouthful you put in front of me. What the heck. I missed how you sizzled things until the kitchen was smoky, and your passion for saffron, old recipes, and pizza dough. You inspired me to buy a sausage maker, which I never ever used. As if I would, without you. We rekindled things on Facebook. Then we had coffee at a groovy place in Ponsonby. You only went to groovy places, and from then on I would trail in your wake to one after another. With you, I could be groovy, too. I learned about your hard times. I told you about mine. It was like we’d never lost each other. www.carers.net.nz
When I drive past the bench where you told me you had cancer and things didn’t look good, my reactions take me by surprise. Sometimes I cry. Sometimes I laugh. Sometimes I remember how unselfconscious you were, compared to Minnesotan me. How you would sunbathe naked and the old perve a few doors down would poke his head through his flax bush for a better view. Not that you cared. One of my very favourite photos is of you, posing nude in the garden as the startling backdrop in an otherwise unremarkable landscape of fully clothed friends. You grew up in Chicago, near paint and chemical manufacturers. Your oncologist said your rare cancer might have been triggered there, breathing in the toxins. Decades later we sat on the bench in the sunshine and talked about what came next. Surgery. Chemo. Radio. Drugs. All the things you hated but would endure because you wanted to live. An ironic full circle. Most weekends I would pick you up for a walk, a trawl through the gentrifying fashion and art shops of Karangahape Road, a creamy pasta at Prego, a cake at Vaniye in Parnell. Once we visited the nearby rose gardens with their voluptuous displays. It was hard not to think about how, beneath the scented bushes, were the ashes of countless Aucklanders, so many that poisons from their cremations were killing the plants. Spreading ashes in the rose gardens and other public places has now been banned. Another ironic full circle.
But we didn’t talk about that. By then you were using a walking frame, and food was something you feasted on only with your eyes. Your bones could no longer support your slight weight. They were breaking, and you described the imagery of the spreading cancer in your scans as “beautiful, like the night skies”. Our last visit was after dark. I was shocked when you said “I was abused as a child from the age of seven, and when I told my mother she acted like she hadn’t heard”. Your words were slurred from the drugs but I had no doubt they were true. You were shedding. I could see I would lose you again. Not yet though. Not yet. And then you died. Just like that. Instead of a funeral we were asked to visit to say goodbye. In accordance with your Buddhist beliefs you were at home, surrounded by aromatic candles, incense, and bowls of grain to sustain your journey to the afterlife. Children screeched and crashed their toy trucks in the lounge. But we were alone. Your favourite earrings glittered in your ears. Your blue eyes were open. They were looking beyond. Beyond the small room where you’d nourished others as a counsellor. Beyond the hills and the waters of Aotearoa, New Zealand. Beyond being lost to anyone, into infinity. Beautiful, like the night skies. FamilyCARE 41
Camp Mother’s Saucy Tips Here is a book you’ll delve into again and again, filled with recipes featuring New Zealand cuisine, plus photos, tales, and anecdotes gathered by the iconic Topp Twins while travelling the country for their Topp Country TV series.
It was hard to choose which recipes to share, but we couldn’t go past Camp Mother’s saucy recipes which are quick to make and will dress up any meal. There are old favourites like apple sauce and cheese fondue, and racy new ones like tzaziki or green chilli sauce. Try Camp Mother’s serving suggestions, or invent your own!
Topp Country: A Culinary Journey Through New Zealand with the Topp Twins
Join Dames Lynda and Jools as they go on a trip around New Zealand meeting passionate food producers, home cooks and lovers of life. Around 75 recipes included! Based on ttheir award-winning television series, with the Topps bringing us tales from the heartlands as they meet 60 ethical farmers and growers. Their deep love for the land and its people is interwoven with inspiring stories, poems and recipes. Food made with love and all printed in full colour. Available in hardcover from bookstores or online at www.topptwins.com
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Suggestion: Serve with pork chops and deep-fried sage leaves. 4 apples, peeled and chopped 2 tbsp lemon juice 1 handful golden raisins 5cm piece ginger, peeled and grated 3 tbsp brown sugar 2 cups apple juice ½ tsp ground cinnamon ¼ tsp ground nutmeg Combine all ingredients in a pot and cook until a chunky sauce forms, about 10-12 minutes.
Suggestion: Serve with lamb loin cutlets.
CREAMY CAPER & GHERKIN SAUCE
Suggestion: Serve with schnitzel and chips. ½ cup sour cream ½ cup mayonnaise 2 hard-boiled free range eggs, finely chopped 2-3 gherkins, finely chopped 1 tbsp capers
MUSHROOM & GREEN PEPPERCORN SAUCE
½ bunch parsley, finely chopped Salt and ground black pepper, to taste Mix together the sour cream and mayonnaise in a bowl. Fold through the eggs, gherkins, capers and parsley. Season with salt and pepper to taste.
1 medium cucumber 1 clove garlic 1½ tbsp lemon juice 1 tbsp chopped fresh mint and dill 1½ cups greek yoghurt Salt and freshly ground pepper, to taste 2 tbsp olive oil Peel cucumber, scoop out seeds and grate. Strain cucumber to remove all excess liquid. Place drained cucumber in a food processor with garlic, lemon juice, dill and mint and process until smooth. Stir this mixture into yoghurt and add salt and pepper to taste. Whisk in olive oil and season again. Refrigerate for 2 hours to allow flavours to combine.
Suggestion: Serve with grilled steak. 2 tbsp olive oil 250g mushrooms, thinly sliced 100ml white wine 150ml beef stock 2 tsp green peppercorns in brine, drained 1 tsp Dijon mustard ¼ cup cream Heat olive oil in a pan. Add mushrooms, cook for a few minutes and set aside. Add wine and stock to pan and reduce by half. Reduce heat and add peppercorns. Whisk in mustard and cream. Return mushrooms to the pan and mix through the sauce to coat.
Suggestion: Serve with crusty bread and lightly steamed vegetables. 4 cups grated cheese 2 tbsp flour 1 clove garlic, cut in half 1 cup dry white wine 1 tbsp lemon juice 3 tbsp dry sherry or brandy
GREEN CHILLI SAUCE
Suggestion: Serve with barbecue prawns.
3 tbsp lime juice 2 tbsp fish sauce
3 cloves garlic, crushed 3 large green chillies, deseeded and chopped 3 coriander roots, cleaned 3 shallots, finely diced 3 tbsp shaved palm sugar
Place garlic, chillies, coriander roots and shallots in mortar and pestle and grind together (or whizz together in a blender). Add palm sugar, lime juice and fish sauce and mix well.
Place cheese and flour in a bag and shake until cheese is coated with flour. Rub garlic on bottom and side of fondue pot; discard garlic. Add wine. Heat over simmer setting on fondue pot just until bubbles rise to surface (do not boil). Stir in lemon juice. Gradually add cheese mixture, about half a cup at a time, stirring constantly with wire whisk over low heat until melted. Stir in sherry. Keep warm over simmer setting. Fondue must be served over heat to maintain its smooth, creamy texture.
SPICY HOLLANDAISE SAUCE
Suggestion: Serve with grilled salmon. 3 free range egg yolks A dash of Tabasco sauce 1 tbsp lemon juice Â˝ tsp lemon zest Pinch of salt 600g melted butter, hot but not boiling 2 tbsp chopped tarragon Place egg yolks, Tabasco sauce, lemon juice, lemon zest and salt in a food processor and whizz to combine. While the processor is running, slowly pour in the butter until it emulsifies and a sauce forms. Stir through the tarragon.
care to cook
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Young Carers NZ If you’re a young carer, or support young people in caring situations for friends and family members, visit our Facebook page for day to day support! Connect with other young carers, and receive regular information to support you in your role. Schools and community organisations can request copies of our helpful free resource, Are You A Young Carer? We also produce an infosheet for anyone working with young carers and parents. Request these resources by phoning Carers NZ on 0800 777 797 or email email@example.com Bulk booklets are available on request. Young Carers NZ is a national programme of Carers NZ.
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