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 ~

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

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.

Check out The Age Of Senescence website or popular social media sites;
YouTube, Twitter, Instagram and Facebook

Popular posts written by the author

1. 7 Top Tips For A Dementia Friendly Family Christmas
2. Gene Wilder, STIGMA and A Child’s Smile
3. The Cognitive Footprint Model 
4. What is the difference between dementia and Alzheimer’s Disease?
5. A Winning Active Ageing Approach
6. Why Cognitive Preservation in Aged Care is ESSENTIAL for Organisational Agility?

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)

 

Subscribe and be a part of

The Age of Senescence community.

 

Receive emails about what I’m currently working on and notifications when articles are published. 

AGEING BETTER TOGETHER©

 

7 Top Tips For A Dementia-Friendly Family Christmas.

Written by Kirsty Porter  • 18 December 2016 •

Nurse and Aged Care Enthusiast 

It’s Christmas again, and everyone wants to know, “What are we doing about Dad?”

 

David has Alzheimer’s Disease and has been living with this disease for 4 years now.   He is getting really frustrated with his dementia symptoms these days, especially now that he needs more help from Lora.  Lora is David’s dedicated wife, loving best-friend and is the ‘glue’ in the family, holding everything together.  But now, people like to refer to her as his carer.  They both resent the word ‘carer’ because it makes them feel so pigeon-holed, and arguably they have been caring for each other well over 50 years now.

As for David, well he becomes overwhelmed quickly and can be agitated with too much noise.  Surely this Christmas with the family will be too stressful?

 

And then there is the issue of eating.

 

Using a knife is now a mystery and the blasted spoon just creates more mess, as David’s hand to mouth co-ordination has weakened, especially when it comes to soup. Lora doesn’t mind assisting David, in fact, it’s quite a lovely bonding and quiet time for them, but she doesn’t want to embarrass him and he feels, well, different when she helps him to eat in public.

 

Lora is so completely overwhelmed to play the pigeon-holed carers role this Christmas, when all she’d like to do is just have a break and relax.   So, she has given herself permission to simply disengage from the family this Christmas all together.  She feel’s it’s just too much for the family to understand or know what to do.  Anyway, after last year’s disaster of David just wandering off, maybe staying at home with David might be best.   It’s just too much.

In the past, David and Lora used to host their family’s Christmas, but while their lovely eldest daughter has taken on the hosting this year, David and Lora are still hesitant to go.  Their daughter is desperate for them to attend Christmas day, but their two sons have some major concerns, especially as there will be six grandchildren under 10 years old running around the house. What to do?

Indeed, what to do?

Frustrated that there is just not enough information on this subject, I’ve written this blog for David and Lora, and for similar families planning a Christmas that wants to include, but doesn’t quite know how, a family member living with dementia.  (Click here to read the difference between Alzheimer’s and dementia).

I’ve spent some time with the experts (people living with dementia), asked them some really tough challenging questions, trawled the length and breadth of the internet researching just what it means to get through a Christmas family celebration while dealing with the throws of dementia.

While each family will face individual circumstances, these are my top 7 suggestions while planning for Christmas day with a loved one who has a dementia disease.   Be sure to tell me what you think at the end of the post.

1. Change your expectations

It is tough to alter family traditions or break from them completely, but rather than everyone turning up on Christmas day try having smaller groups of family visit, maybe four at a time.  This might be easier in the lead-up to Christmas.  These shorter and more intimate sessions will foster quality time together and create opportunities for meaningful one-to-one activities, like addressing envelopes, baking, wrapping presents or decorating a tree.  Choose activities that will invoke traditional reminiscing and conversation in a natural way.

Alternatively, if going to a larger family lunch or dinner, it is important to arrive at a time best suited for the person with dementia, and arrange lunch to suit their daily routine, that is consistent with any other day. This is important as maintaining a daily routine minimises anxiety and agitation, especially if feelings of hunger are difficult to vocalise or recognise.

 

2. Its all about inclusion not exclusion

While planning a Christmas day that is inclusive of a person with dementia, it is important to recognise their limitations and abilities.   Focus on what they can do, not what they can’t. Excluding them because of their limitations will only encourage stress and an innate sense of loss. But, for example, being included in the cooking process such as pealing or washing vegetables is a valuable and supportive family inclusion activity.   It maximises feelings of independence, which is important for inclusion and a feeling of belonging.

 

Also, it’s important to remain flexible.   As different people progress through dementia symptoms uniquely, the family needs to be aware of individual responses in larger group situations and caters for that; such as creating a ‘break-out’ space and routine ‘break-out’ times.   A ‘break-out’ time is time for two to three members of the family enjoying each others company in a quite focused environment.  And for someone living with dementia, these break-out times and spaces are a crucial intervention, even more so during larger family celebrations.   This is also a perfect opportunity to share the care.

3. Moods are contagious

People with dementia have a unique and uncanny tendency of heightened emotional contagion. Emotional contagion is when emotions are transferred between people in confined spaces, and it is quite amazing to see people living with dementia (and children alike) ‘feel the room’. Therefore, plan Christmas day ahead with allocated rest times for everyone and prepare ‘break-out’ spaces to encourage one-to-one time and conversation. In this time, mix the generations up a bit and encourage children to have quality time with their grandparent in a quite space. They might sing, play with a balloon, move about the garden, sort cards or even look at an old photo album.   Finally, be aware of emotional triggers that may cause confusion or anxiety, this can be as simple as delaying their usual eating times or being distracted by background music.

4. A space that works

Allocate an accessible and inclusive space designed for the person with dementia.   There are some important points to add here when creating a dementia friendly space. Getting it ‘right’ will enhance the mood and will invoke a calming response.

 

 

 

Here are some ideas I’ve found to be effective; 

⇒ Natural Lighting, no flashy Christmas lights,

⇒ Decrease obstructive clutter,

⇒ Cover patterned chairs with a block-contrasting colour. Anything patterned such as bed spreads, plates, food condiments, chairs, table clothes, etc., all create a confusion about what the object actually is and that might lead to uneasy feelings,

⇒ Well labelled rooms, such as: ‘toilet’ & ‘bedroom’,

⇒ An all white toilet needs to be defined. Sticking a coloured or contrasting tape to rim of bowl will define the boundaries of the toilet – for sitting or standing. This will further reduce the risk of a fall. (Communication between family members is important so that the toilet seat is left in the same position to avoid further confusion),

⇒ Remove tripping hazards; rugs, cables, toys, etc,

⇒ Soft or textured furnishings,

⇒ Smell or sound, such as music, that works to calm not distress. (Important to note here that excessive noise has the most significant and damaging impact),

⇒ Safe access to outside, with glass doors marked or taped to clearly indicate if they are open or closed, and

⇒ Coloured tape on all steps.

 

5. The Table

The absolute key here is CONTRAST! Again, no overtly patterned table clothes or crockery.

 

If you’re going for a bright block coloured tablecloth, white serving dishes would be best. Make sure the food in the serving dish looks like the food it is. For example, ensure the potatoes look like potatoes; the meat looks like meat and so on. Don’t change the look of the food with sauces draped on top, keep them separate. Allowing for autonomy during food selection is not only a personal pleasure but a fantastic socialising experience. Again, for this top tip, patience and time allocation is key here.

 

It’s all about perception and how the person with dementia perceives what that food is. If they recognise the food then the food will most likely be eaten. The same is true in reverse, and being hungry might be a trigger for excessive anxiety, stress and feelings of loss.

Here are some other hints and tricks I’ve learnt;

 

⇒ Use bright red or blue crockery that contrast well with placemats, serving dishes and food.  Patterned plates may be distracting and might serve only to confuse what food is presented,

⇒ Consider a buffet table for food. It de-clutters the table and at the same time encourages independence and social inclusion as people move to and fro,

⇒ Plain coloured tablecloth or plain table surface,

⇒ Cutlery that allows independence or finger food – but important that EVERYONE does the same thing to prevent alienation. This could make mealtime quite fun, especially for the children,

⇒ Important that edges of objects on the table are well defined,

⇒ Non-slip placemats,

⇒ Don’t mix two foods in one serving dish – this can create confusion,

⇒ No sharp edges on tables, chairs and other furniture,

⇒ Use familiar serving objects and utensils,

⇒ Chair must be comfortable and accessible with good back and arm support,

⇒ Ensure there is no pretend food, even if it’s for decoration,

⇒ Good lighting above table,

⇒ Plants and flowers add positive sensory stimulation through their natural colour, texture and fragrance, and

⇒ If you’re a big group – more than six, consider having more lots of smaller tables.

 

7. Appropriate Conversation

It’s important to be patient while talking to someone with dementia.   People with dementia can hear what you’re saying, but just need a little bit more time to process and respond to you.  Give them time.

On this point, a well known advocate, Kate Swaffter, who lives with dementia (see her blog here), advises people to avoid starting a conversation with “Remember when…” as it can be disastrous and upsetting for someone who really can’t remember when. Ask leading questions or topic focused conversations that will encourage natural reminiscing that will spearhead real meaningful engagement.

Finally, during table conversation, it’s important that people don’t talk over-each other as this can be very distressing and difficult to follow. You can tell if this is happening by the ‘zoned-out’ expression.   Take the time to engage in one-on-one conversation at this point, offer to walk to the buffet table together and gently remind people to be aware of the impact it’s having on their loved one.

 

7. Gift Exchange

Gift exchange needs to be a calm experience – completely impossible if there are wonderfully excited kids.   I’ve been told this is a particularly tough time of the day and my expert says with laughter, they prefer to be doing something else.

Gift exchange with someone living with dementia might involve a smaller group just a little away from the crowd. However, just watching the children laugh and play with toys is quite a gift on its own for many people living with the symptoms of dementia.

 

Gifts that are reminiscent of childhood memories are particularly valuable but the time spent together doing a meaningful engaging activity together, like a big sing-a-long is worth its weight in gold!

And lastly, wrapping paper works better when it’s simpler as it will be recognisable as a gift.

 

 

So the major keys when preparing for a dementia-friendly family Christmas is to first adjust the family’s expectations of the day, ensure the routine is easy and recognisable, and finally understand their limitations while encouraging independence, as these inclusive activities are sure to have positive and a lasting emotional impact long after the memory loss.

Ultimately, plan Christmas day so that the family remains connected and relationships are supported while everyone is adjusting to the changes facing their loved one. In that, what creates laughter will also create connectivity.

 

Share the care, keep it simple and focus on the love.

 

Wishing you all a safe, magical and wonderful Merry Christmas from Australia! Looking forward to new and exciting developments in 2017!

AGEING BETTER TOGETHER

Kirsty Porter
Founder

The Age of Senescence
Photos: Pixabay.com & adapted by Kirsty Porter.
THE VIEWS AND OPINIONS ARE MY OWN.

NO ROYALTIES WERE RECEIVED FOR PUBLISHING THIS ARTICLE.

AUTHOR NOT AFFILIATED WITH COMPANIES MENTIONED IN THIS ARTICLE.

 

PLEASE LIKE, COMMENT OR SHARE.  

WOULD LOVE TO HEAR YOUR THOUGHTS AND EXPERIENCES ON THIS ARTICLE.

 

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 two cafe sessions in 2016, there is now some considerable excitement surrounding its sustainability in 2017.  The cafe is in its creative development phase – see how she is progressing on her Dementia Cafe webpage and Facebook page.

Check out The Age Of Senescence website or popular social media sites;
YouTube, Twitter, Instagram and Facebook

Popular posts written by the author

1. Who is The Age Of Senescence
2. Gene Wilder, STIGMA and A Child’s Smile
3. The Cognitive Footprint Model
4. What is the difference between dementia and Alzheimer’s Disease?
5. A Winning Active Ageing Approach
6. Why Cognitive Preservation in Aged Care is ESSENTIAL for Organisational Agility?

Literature resources for helping children understand 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’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)

 

Subscribe and be a part of

The Age of Senescence community.

 

Receive emails about what I’m currently working on and notifications when articles are published.

AGEING BETTER TOGETHER©

 

The Umbrella Dementia Cafe Radio Interview

Written by Kirsty Porter  • 9 October 2016 •

Nurse and Aged Care Enthusiast.

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

Share with others by clicking your favourite social media icons below.

Please comment too about the interview in the box below.

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

Related Articles and Web Pages by Kirsty Porter

 

ARTICLES:

Gene Wilder, STIGMA and A Child’s Smile

What is the difference between dementia and Alzheimer’s Disease? 

 

WEB PAGE: The Umbrella Dementia Cafe project

 

FACEBOOK: The Umbrella Dementia Cafe inaugural event in Melbourne

Subscribe and be a part of

The Age of Senescence community.

 

Receive emails about what I’m currently working on and notifications when articles are published. 

AGEING BETTER TOGETHER©

 

What is the difference between dementia and Alzheimer’s Disease?

Written by Kirsty Porter  • 3 October 2016 •

Nurse and Aged Care Enthusiast.

Dementia is an umbrella term used to describe symptoms of a degenerative brain disease. Dementia is to Alzheimer’s what fruit is to an apple or what shortness of breath is to Asthma.

 

Dementia is a disease symptom and while it more commonly affects the older adult it is NOT a natural part of ageing. 

 

Alzheimer’s is the most common of all the dementias and affects up to 70% of people diagnosed.  Dementia with Lewy Bodies is another form of dementia but it is widely regarded as the most under-diagnosed dementia, as was the case with actor Robin Williams.  

 

Dementia describes the symptoms of all degenerative brain diseases. Its symptoms can be as varied and as wide-ranging as our own personalities but generally dementia is characterised by changes in; behaviour, memory, orientation, movement, mood or ability to make decisions.

 

Finding out the cause of dementia symptoms requires a combination of specialist doctors to crawl into the nether regions of the brain to establish which part of the brain is affected to determine the correct diagnosis. For more on how a diagnosis is formed check out this guide.

 

This brain sojourn takes time. But, once the specialist doctor discovers where the dementia is occurring, how it’s progressing and even why, action can be taken and in some cases, specialists can even reverse the problem.  For example, certain conditions such as depression or an under-active thyroid can be the cause of dementia symptoms, and therefore it’s important to establish early on what type of dementia is presenting in the brain.

 

And then there are the ‘true’ dementias

 

I would love to add a, “dementia-can-be-reversed-if-you-get-help-early” heading, but sadly, in this day and age, it’s not the case.

 

‘True’ dementias describe irreversible and progressive degenerative areas of the brain that are presently incurable and are terminal.   Further, there are no cures or medication that can stop the degeneration or progression of any of the ’true’ dementias.  

 

Degenerative true dementias, such as the more common ones; Alzheimer’s Disease, Lewy Bodies or Parkinson’s Disease, are all hallmarked by their own set of pathological changes in different areas and different cells of the brain.  

 

As these pathological changes become more progressive, the brain begins to atrophy or shrink. Naturally, brain atrophy will affect physiological behaviours such as speech, movement, memory and perception.  Importantly, with a prognosis anywhere between a 6 months (Creutzfeldt-Jakob disease or “mad-cow” disease) and 20 years (Alzheimer’s), getting the correct diagnosis will kick-start appropriate support, expectations and choices.

 

Today, there are over 130 different types of dementia recorded. With these kinds of numbers, it is important to get the correct diagnosis so that the plan of care and action is appropriate to the disease trajectory.  

 

While diagnosis is important to establish disease trajectory, it is also vital that a great deal of support from health care professionals, the community associations, family and friends become a fundamental response at this point. Sadly, it is also at this point, stigma  and ignorance becomes as real as the fear and emotional devastation a dementia diagnosis can bring.

 

This week, while setting up my own dementia café (The Umbrella Dementia Café and on Facebook), I’ve heard different perspectives of ‘what is dementia’, and why some people get Alzheimer’s in families and others don’t. I’d be interested in hearing what you’ve heard about dementia or Alzheimer’s? Why do some people get it early and others later in life?

 

Brian Kursonis, from North Carolina in the US, did not count on having Alzheimer’s at 54 at all! On the issue of stigma and ignorance he says,

“I have to tell you though, for me the stigma or the ‘uncomfortable part’ isn’t just admitting I have dementia to people but doing it so openly that they sometimes feel uncomfortable. I love it though when I can educate them.  I knew so little about dementia a year ago”.

 

I agree with Brian; education and awareness is the key to fight against stigma and ignorance. Brian is a perfect example of living well with dementia – actually, scratch that, he’s kicking arse in his life and determined to live his best self (see his post here before his 2016 Walk Against Alzheimer’s last month). He knows very well the trajectory of his disease but is living by his rules despite how it makes others people feel. You are an inspiration Brian, thank you.

 

I want to finish this post, with a 2-minute cartoon video, produced by Trinity College in Dublin, Ireland, to truly clarify the difference between dementia and Alzheimer’s Disease.

 

Finally, love is not lost during any of the degenerative stages of dementia. x

 

Written By Kirsty Porter

AGEING BETTER TOGETHER

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Feature Photos: Pixabay.com & adapted by Kirsty Porter.
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AUTHOR NOT AFFILIATED WITH COMPANIES MENTIONED IN THIS ARTICLE

 

 

Related Article and Web Page by Kirsty Porter

 

ARTICLE: Gene Wilder, STIGMA and A Child’s Smile

WEB PAGE: The Umbrella Dementia Cafe project

FACEBOOK: The Umbrella Dementia Cafe inaugural event in Melbourne

Subscribe and be a part of

The Age of Senescence community.

 

Receive emails about what I’m currently working on and notifications when articles are published. 

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Gene Wilder, Stigma and A Child’s Smile

Written by Kirsty Porter  • 12 September 2016 •

Nurse and Aged Care Enthusiast 

 

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.

 

 

 

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?

 

 

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.

 

 

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. 

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

 

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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.

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Related Posts

1. The Umbrella Dementia Cafe on the RADIO
2. What is the difference between dementia and Alzheimer’s Disease?
3. A Winning Active Ageing Approach
4. Why Cognitive Preservation in Aged Care is ESSENTIAL for Organisational Agility?

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 Journey’ By 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 Journey’ By 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

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