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Reviewing media, books and movies that have inspired change and great resilience while ageing.Books & Media

The Artistry of Caregiving: Letters to Inspire Your Caregiving Journey

- A Book Review -

Written by Kirsty Porter  16 May 2017

~ Nurse and Aged Care Enthusiast ~

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Dear Carole Brecht,

 

I was so inspired by your book and the style in which you delivered it, I decided to write this book review to you personally, using the same unique style you wrote ‘The Artistry of Caregiving: Letters to Inspire Your Caregivers Journey”.

 

Carole, your new award-winning book undoubtedly exemplifies the art of caregiving. Not because you have perfected it, but because you laid bare you’re imperfect and heart-wrenching caregivers journey. A 5 year journey that not only saw you care for your mom living with Alzheimer’s Disease, but also doing it while still having your own children depended on you.

 

Carole, I salute you. I salute all that you have achieved and have endured to give us this book. You dutifully gave up everything to care for your mom, and feeling sandwiched between two generations who needed you, you unwittingly became a poster child for the Sandwich Generation.

 

Undoubtedly, this newly coined term 'Sandwich Generation' is fast becoming a massive global cohort of people caught between dependent parents and dependent children, a group that needs all the support it can get.  And your book becomes an important part of this support.

 

The Artistry of Caregiving is definitely not a self-help book. Instead, I found this book almost talks to you, calms you, is sensitive, truly makes you believe you can survives the caregivers roles and finally, it purports to give the reader strength to carry on.

 

 

The Artistry of Caregiving openly addresses issues of caregiver’s guilt, responsibility, frustration, anger and micro-management. Carole, not only do you sensitively address these complex feelings in the form of 33 personalised letters to co-caregivers, but you also courageously share your inner most struggles between chapters, sharing your extraordinary stories of how you yourself coped, or didn’t cope, during those intensely difficult times caring for your mom.

 

Each of the 33 personalised letters and chapter narratives are designed to give hope, clarity, comfort and even joy to those navigating their own caregiver’s journey. Dear Champion, Dear Protector, Dear Peace Giver and Dear Pillar are examples of these letters, with each letter weaving your own personal caregiving experiences.   I completely adore how you’ve successful written them (especially “Dear Friend”), and how each letter is signed off with a voice of confidence, sincerity and love.

 

It is obvious too, each letter has its own purpose. The letter titled ‘Dear Giver’ validates the readers caregiving efforts, while the letter ‘Dear Defender,’ encourages the reader to fight the fight advocating for their parents needs when dealing with busy health care professionals.

 

As a health care professional myself, I know nurses and health professionals alike will offer luck, condolence and support after every new diagnosis of Alzheimer’s Disease. Some will refer you to a community support group, others will act as an advocate, and some will ‘see you next time.’ But, in the end, the actual support for couples or individuals embarking on this care-giving journey comes from their family and community.

 

I call these guys the ‘in-between’ supporters. These are the people who support you in-between seeing the specialists, the doctors and the nurses.

 

Of the people I’ve meet living with a dementia disease such as Alzheimer’s, I continuously hope they are receiving ‘in-between’ support. Support from their extended family, their lifelong friends, from their local social club (a club they’ve always gone to), and even from that nosey neighbour - who might just know how to help. Anyone who might offer a shoulder to cry on, have a laugh with or offers the occasional listening ear.

 

This is why your book is so important to me.

 

This is why I am recommending this book on my website and social media pages. This is why your book features at my dementia café.

 

Because your book acts as the ‘in-between’ support person!

 

Your book will support the caregiver at night when their loved one wont sleep, when the doctor wont listen, when feeling isolated at home, when you can’t stop crying from exhaustion. Your book knows what is happening and sends encouragement hope, laughter, joy, courage, connecting ideas and, hilariously, even your contact detail in case of emergency!

 

Quite remarkable, Carole.

 

Cheers to you Carole, for believing in yourself.

 

Cheers to your own ‘in-between’ people.

 

Cheers for having the courage to write The Artistry of Caregiving and complimenting it with your beautiful and unique artwork, Zentangle.

 

Finally, thank you for refused to accept what you could not change, and turning the journey of caregiving into a personal masterpiece.

 

Indeed, you and your book are truly remarkable.

 

Sincerely,

Kirsty Porter x

Zentangle illustration by Carole Brecht
A Zentangle illustration by author Carole Brecht

The Age of Senescence is proud to be an Amazon Associate.

Click the on the book cover to go straight to Amazon and own Carol's book for yourself or for a friend.

Kirsty is the Founder of the new blogging site The Age of Senescence that explores new innovation in global ageing and aged care.  Kirsty is also the creator of The Umbrella Dementia Cafe in Blackburn, Melbourne.  After successfully hosting multiply sessions in 2016 & 2017, there is now some considerable excitement surrounding its sustainability.  The cafe is in its creative development phase - see how she is progressing on her Dementia Cafe webpage and Facebook page.

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Literature resources for helping children understand dementia.

 

I’m a massive advocate for keeping children in the conversation about dementia.  I’ve researched and found some excellent books helping children understand dementia and Alzheimers;

 

1. ‘Weeds in Nans’s Garden.’  By Kathryn Harrison (recommended)

 

2‘What happened to Grandpa.’  By Maria Shiver (inspirational change agent)

 

3. ‘Still my Grandma.’  By Veronique Van Den Abeele & Claude K. Dubois (award winning book)

 

4. ‘Wilfred Gordon McDonald Partridge.’  By Mem Fox  (an oldie but a goodie - I have this one for my own children)

 

5. "Why did Grandma put her Underwear in the refrigerator?”  by Max Wallack and Carolyn Given.  (Written from a 7 year old's perspective)

 

Literature resources for helping children understand dementia.

 

I’m a massive advocate for keeping children in the conversation about dementia.  I’ve researched and found some excellent books helping children understand dementia and Alzheimers;

  1. ‘Weeds in Nans’s Garden.’  By Kathryn Harrison (recommended)
  2. ‘What happened to Grandpa.’  By Maria Shiver (inspirational change agent)
  3. ‘Still my Grandma.’  By Veronique Van Den Abeele & Claude K. Dubois (award winning book)
  4. ‘Wilfred Gordon McDonald Partridge.’  By Mem Fox  (an oldie but a goodie - I have this one for my own children)
  5. "Why Did Grandma Put her Underwear in the Refrigerator” by Max Wallack and Carolyn Given. (Written from a 7 year old's perspective)

 

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The Umbrella Dementia Cafe Radio Interview

Written by Kirsty Porter  • 9 October 2016 •

Nurse and Aged Care Enthusiast.

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The marketing for The Umbrella Dementia Cafe is in full swing.  The event has had two major promotional gigs this week.  A full editorial appeared in the local Whitehorse Leader newspaper about the cafe event and the local 3WBC Radio with Dougal Austin has interviewed me to promote the event and push more local awareness about dementia (hear the full interview below).  

 

Now, we need the customers.

 

I’ve included the recording of the show for you to hear a real emphasis on the importance of having, not only a dementia socialising hub in our local community, but a wider community involvement to achieve a dementia-friendly society.

 

There has been overwhelming community support with this event and I’m pleased to say all the local neighbourhood community houses are in full support for this idea and have invited further discussion for their own cafe or dementia-friendly events.

 

In addition, the local Council has entertained this as a very positive step in the right direction for a dementia-friendly community and they wait with anticipation to see how this event goes.   So it is now more than ever, The Umbrella Dementia Cafe needs your support to invite those living with dementia to this event in Blackburn, Australia.  But beyond that, hope to inspire people around the length and breadth of Australia who might want to join me in the plight to create more dementia-friendly socialising hubs.

 

 

So please support this inaugural event by sharing it with your friends or tag someone you think might want to support The Umbrella Dementia Cafe.  This will have dual effect; hope to inspired those with the resources to create something similar, and also provide a safe environment for those in the local area to live well with dementia.

 

Press play to hear the 8 minute radio interview with Kirsty Porter about:

The Umbrella Dementia Cafe event 25th October 2016

 

Thank you for your support,

Kirsty Porter

AGEING BETTER TOGETHER

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Feature Photos: Pixabay.com & adapted by Kirsty Porter.
NO ROYALTIES WERE RECEIVED FOR PUBLISHING THIS ARTICLE.
AUTHOR NOT AFFILIATED WITH COMPANIES MENTIONED IN THIS ARTICLE

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Gene Wilder, Stigma and A Child’s Smile

Written by Kirsty Porter  • 12 September 2016 •

Nurse and Aged Care Enthusiast 

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It’s been more than two weeks now since Gene Wilder died, and I’m still struggling with it. We may never know the full reason why Mr. Wilder and his loving family respectfully wanted to keep his Alzheimer’s disease a secret, but I just can’t shake the thought that stigma might have played a starring role here.

 

The purpose of The Age of Senescence is to show you guys some cool new stuff created for the benefit of our elders. But somehow this week my enthusiasm to showcase anything was deflated after reading the statement Gene Wilder’s family issued after he passed away from complications of Alzheimer’s disease.

 

“We understand for all the emotional and physical challenges this situation presented we have been among the lucky ones—this illness-pirate, unlike in so many cases, never stole his ability to recognize those that were closest to him, nor took command of his central-gentle-life affirming core personality. The decision to wait until this time to disclose his condition wasn’t vanity, but more so that the countless young children that would smile or call out to him ‘there’s Willy Wonka,’ would not have to be then exposed to an adult referencing illness or trouble and causing delight to travel to worry, disappointment or confusion. He simply couldn’t bear the idea of one less smile in the world.”

 

Upon reading this, I looked straight to Instagram and Facebook, sourced a beautiful photo, researched an apt quote from Mr. Wilder and went about listing all the #’s to promote my product. But alas, nothing was published from me.

 

Mr. Wilder, nor his family, wanted him to be remembered for having Alzheimer’s disease that might have caused "one less smile in the world".

 

Yet, Mr. Wilders own public ‘coming out’ for having Alzheimer’s was laden with feelings of fear that might upset a fan base, a child fan base no less.

 

The last sentence in their statement really saddened me and I’d like to express why hiding Alzheimer’s might be detrimental to the child and thus future generations.

fear child stigma Alzheimer's
Source Pixabay

 

 

 

The Stigma

With the greatest respect, Mr. Wilder’s decision to keep his diagnosis a secret is consistent with global cultural attitudes when learning this “illness – pirate” disease has taken a loved one. And sadly over time, and over multiple generations, negative attitudes have ultimately settled in creating complex and discriminating prejudice that influence individuals to hide, or worse still, remove themselves from the judgment of society.  And regrettably, this is stigma personified.

 

In addition, the thought that Alzheimer’s should be kept a secret to shield us from smiling is a frightening perspective.  Especially when it is expected that dementia (symptoms of Alzheimer’s) will directly or in-directly impact us all by 2050.  If the message is to keep a dignified silence about a worrisome, troubling or confusing disease, perhaps we can expect isolation to become a natural response.  A heartbreaking thought indeed.

 

The Child And Child Inside

No one should have to deal with Alzheimer’s alone, no one. Children, especially.  Of course they see the dementia symptoms, but in a way only children do (Werner, 2010).  So we absolutely need to be hands on to guide them appropriately or they will invariably struggle to understand it, look away from it or act out and thus the stigma lives on.

 

You see, cool new stuff in the ageing world only comes about from inspiration and the ability to turn tough problems into opportunities. So if we hide or isolate the problem, we simply wont find the innovation. And who better to innovate than a child, or the child within us? Isn’t that what Willy Wonka was all about? Inspiring the child and the child inside?

 

inspiring innovation in the child

 

From an awareness perspective, we need to really harness the energy, enthusiasm and the sheer power of young people to dream big, because reversing stigma is a hell of a lot harder than inspiring the innovator.

 

With nearly my entire nursing career in the aged care sector and caring for countless families dealing with (and dying from) end-stage dementia, I know inspiring change and innovation in this sector is extraordinarily hard and fraught with stigma, ignorance and fear. This has to change, and it has to include the big dreamers – our kids, the next generation.

 

My core business doesn’t include blogging about famous and decorated artists, such as Mr. Wilder, there is no innovation about his death, and he is no more important than the millions who have died and will die with Alzheimer’s before a cure is found.

 

But now, after two weeks of analysing a media who have dutifully and collectively respected the wishes of Mr Wilder to ‘hide the ugly’, I’ve become determined to get on with what I mean to do, and make sure it comes out loud and clear.

 

So in big shoutty text: PEOPLE IN THE THROWS OF DEALING WITH DEMENTIA: DO NOT TAKE YOURSELF AWAY FROM YOUR FRIENDS OR YOUR COMMUNITY AND CEMENT THE IGNORANCE OF DEMENTIA.

 

Just because you have been diagnosed with dementia you are no less human! You cannot change the outcome, but my goodness you can affect the journey. Make it a good one.

 

life rollar-coaster dementia

 

So, to the person with dementia: do not de-humanise yourself, please. Know that the diagnosis of dementia doesn’t mean you are dead to the world.

 

Find The Smile

To the Person living with a dementia disease: you are very much alive and showing how valuable you are by doing the things that make you happy and laugh out loud. Designing a life after your diagnosis is a choice, and how you choose to live your life with dementia is extraordinarily important to the smile of a child and all ‘inner’ children alike.

 

To the caregiver: you are the ultimate hero in this dementia journey and you should not go through this alone. There are people organized in the health system designed just to help you. Exhausted as they might be, you cannot and should not go un-noticed. Please look to your community to help. This is not a journey you should travel alone; trust me when I say that your own mental and physical health will suffer otherwise. I urge you to check out a new website called Dementia Challengers or on Facebook @dementia.challengers to read about how other caregivers are supporting each other.

 

To the community businessperson: I guarantee to you, when you witness the glory of a person living a full life with dementia, you will be inspired to create a dementia friendly business. Not just because you are poised for continuous improvement but also because your customer base will be reflective of our societal ageing population; making you a dynamic and attractive business indeed.

 

And finally to the inspired health professional: I guarantee you will lovingly laugh out loud and fist punch the air when you see someone with end stage dementia completely come alive as they belt out a tune from a bygone era, or paint a magnificent piece of artwork to express how they feel.  And I guarantee you, you will smile - and smile big, when you witness someone so afflicted with dementia that they can no longer talk, yet they lovingly cradle a baby or nurture a young child.

 

The thought that we should isolate ourselves or our loved ones when they reach a certain age or condition only fuels me to push further into the business of awareness and promotion.

 

So in the interest of change, channeling big dreams and ‘choose your own adventure’; I’m climbing into my own glass elevator that is The Age of Senescence and preparing to burst through the roof and into the world of dementia to see where it takes me.

 

I’m joining a global community hell bent on decreasing the stigma attached to dying with dementia and even wider still, the stigma attached to being old.

With the help of my glorious community, I have decided to join the global ranks of dementia awareness and promotion by implementing a tried and tested strategy to de-stigmatise and de-isolate people with dementia.

 

We are doing this by building our very own dementia friendly café environment, starting right here in a little suburb of Melbourne, Australia (click here for more information). Further, we going to share with you a running commentary of our journey, trials and tribulations through, the very fashionable and oh sooo Next Gen’, blogging and several social media channels!   And we've fondly called it The Umbrella Dementia Cafe.  Check it our here or on Facebook

The Umbrella Dementia Cafe

So elders please come out of your homes and build a community with us!  We have some cool new stuff to show you!  If you can't join us or you’re not up to it, please check out Dementia Mentors for an amazing virtual memory cafe experience supporting those with dementia all over the world.  It’s really good!

 

We implore you to have a go at creating something similar in your own local community. Let us know what you’re doing so we can include it on The Age of Senescence website!  

 

Fear is out and curiosity is in.

 

“The suspense is terrible, I hope it lasts!”
- Willy Wonka  - 

 

Written By Kirsty Porter

AGEING BETTER TOGETHER


I love hearing about new aged care innovations,  send me a message so I can follow your journey. x

 

Please comment if this article has inspired you to promote change.   Share with others by clicking your favourite social media icons below.

 

Feature Photos: Pixabay.com & adapted by Kirsty Porter.
Illustrations: Adapted by Kirsty Porter and inspired by Pixabay.
NO ROYALTIES WERE RECEIVED FOR PUBLISHING THIS ARTICLE.
AUTHOR NOT AFFILIATED WITH COMPANIES MENTIONED IN THIS ARTICLE

 


Since writing this article Kirsty Porter has built and developed community run dementia cafes in her town of Blackburn, Melbourne.  She is supported by a strong volunteer team, a primary school, a florist, a children music school, an estate agent, an aged care company, a Canadian children's author, a church, a cafe, multiple community leaders, and a massive cohort of local mums & dads determined to make a positive impact in the lives of people living with dementia in their community. 

 

See the website www.umbrelladementiacafes.com.au and Facebook for all the photos of the cafe.


 

Literature resources for children

 

I’ve researched and found some excellent books helping children understand dementia and Alzheimers;

 

1. ‘Weeds in Nans’s Garden.’  By Kathryn Harrison (recommended)

 

2‘What happened to Grandpa.’  By Maria Shiver (inspirational change agent)

 

3. ‘Still my Grandma.’  By Veronique Van Den Abeele & Claude K. Dubois (award winning book)

 

4. ‘Wilfred Gordon McDonald Partridge.’  By Mem Fox  (an oldie but a goodie - I have this one for my own children)

 

5. "Why did Grandma put her Underwear in the refrigerator?”  by Max Wallack and Carolyn Given.  (Written from a 7 year old's perspective)

 

 

 

Finally, Dementia Resources (click here) have also complied a great reading list for children aged 1 to 15+ years helping to they understand dementia better.

Literature resource for the reverend caregiver:

 

'The Artistry of Caregiving: Letters to Inspire Your Caregiver JourneyBy Carole Brecht (Author & Artist see Instagram @sangenwoman)

A deeply personal account of her caregiving experiences for her mother.  Click here for my review of her book.  


Literature resources for children

 

I’ve researched and found some excellent books helping children understand dementia and Alzheimers;

  1. ‘Weeds in Nans’s Garden.’  By Kathryn Harrison (recommended)
  2. ‘What happened to Grandpa.’  By Maria Shiver (inspirational change agent)
  3. ‘Still my Grandma.’  By Veronique Van Den Abeele & Claude K. Dubois (award winning book)
  4. ‘Wilfred Gordon McDonald Partridge.’  By Mem Fox  (an oldie but a goodie - I have this one for my own children)
  5. "Why Did Grandma Put her Underwear in the Refrigerator” by Max Wallack and Carolyn Given. (Written from a 7 year old's perspective)

Finally, Dementia Resources (click here) have also complied a great reading list for children aged 1 to 15+ years helping to they understand dementia better.

A Literature Resource for the Reverend Caregiver:

 

'The Artistry of Caregiving: Letters to Inspire Your Caregiver JourneyBy Carole Brecht (Author & Artist see Instagram @sangenwoman)

A deeply personal account of her caregiving experiences for her mother and I look forward to posting a review about it very soon. 


If you have a book you have written that represent the theme of this blog post, please contact me and I’d be delighted to add it to this page.

This short 2 minute cartoon video is also a great educational piece about knowing the difference between dementia and Alzheimer's

Subscribe and be a part of

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