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My blog for THIS time

My blogs are a little bit sporadic, and mostly just musings, but today I feel I need to share some news regarding upcoming changes to the way our health information is managed and distributed.

But first, let me muse a little :)……As with every person these days, time seems to run away from us – hence my heading… but do we really need to worry about anything else, except for this time, right now?

When supporting people living with dementia; mostly, the answer is no, we do not need to worry about any other moment except for this one right now… unless specifically asking about planning, and how to organise the day or moment to make the most out of a confusing world, please just concentrate on right now, and enjoy it, make it make sense and keep it real.

If you would like regular content, join my newsletter subscriber list to be able to see what I am up to, what information I am sharing and to ask me questions that I can answer and share with others, so we can all benefit.

And now the important stuff!…..

My Health Record – Online Health Information for all

By the end of 2018, a My Health Record will be created for every Australian, unless they choose not to have one.

As more people and their healthcare providers use the My Health Record system, Australia’s national health system will become better connected. This will result in faster and more efficient care for you and your family.

For more information, here is a link.

This will be fantastic for people living with dementia as in an emergency situation, often stress takes even simple memories away, such as a long time address or the name of a loved one who supports, or even their own name.  All information that is important can be listed in this one accessible record that is available by emergency services.  What a blessing.

If you don’t want a My Health Record, you will be able to opt out of having one created for you during a three-month period in 2018.

I have many ideas of how to keep yourself or your loved ones safe and how to make the best outcomes of time in hospital (not a pleasant time for anyone, let alone for one living with dementia!) Let me know what your thoughts and questions are around this and I will formulate my next blog around safety

LoveFest a hit! Big thank you Perth!

Thanks to all those involved in LoveFest Perth. It was a wonderful success, and many of us are still feeling the joy of such a supportive and inclusive event.  There is a resource booklet available on request for all living with and supporting those living with dementia, just contact me and I will send it to you.

In closing, as winter is coming fast to us, please be mindful of keeping warm and nourished, not only physically, but spiritually as well.  Winter is a time of isolation for many due to inclement weather, and keeping busy inside is often a challenge!  For the Spark of Life Core Spiritual Need of feeling needed and useful, my favourite pastime in this area is to ask for help peeling vegetables for soup or stews and then using a slow cooker to make the dish, enabling interaction with stirring and tasting as the day goes on – it’s amazing how satisfying this is to many!  And even if too many vegetables are peeled – it is a very cheap “activity” that occupies for a good length of time.

Stay warm and safe until the next time, with much love, Bianca

Love fest – It’s here in Perth!

Hello!

LoveFest is just around the corner now – only 2 more sleeps (Thursday May 3rd) – And I am so excited to be a part of it!

Please, if you can’t get to the festival – at least take the time to attend “The Kiss” exhibition , from Thurs May 3rd to Wednesday May 16 at Garden City Shopping Centre – I can’t wait to see all the beautiful reflections of love from these portraits.

There is still time to book your free ticket* for Thursday!

Attendees can expect to:

  1. Learn from people with dementia and their families about the challenges they experience and their strategies to strengthen interpersonal relationships
  2. Hear how letter writing can be a powerful tool for acknowledging the human experience of living with dementia and for educating community members and service providers
  3. Understand cultural influences on the experience of living with dementia
  4. Experience how Wu Tao can enhance the wellbeing of themselves and someone living with dementia
  5. Explore how belonging matters to people living with dementia – and how a sense of belonging can be fostered to promote wellbeing
  6. Identify how LoveFest activities can be utilised to generate support for improved services and more dementia friendly communities.

Program

9.30-10.00am: Registration

10.00-10.30: Welcome

  • ​Welcome to Country
  • Welcome from City of Melville
  • Welcome by June Lowe – Chair of GRAI
  • Welcome by Caroline Horlock, Department Manager Education and Consultancy, Alzheimer’s WA

10.30-11.00am: Why we must learn more about love

  • Dr Catherine Barrett, Museum of Love Curator: Catherine will outline the work being undertaken by the Museum of Love and the power of focusing on love as a tool for building dementia friendly communities.
  • Dr Ann Zubrick, Adjunct Professor Notre Dame University: Ann draws on her experiences as an academic and a volunteer visiting people with dementia to explore the concept of Small Acts of Love.

11.00am-12.30pm: Learning from people living with dementia including:

  • Tom Harmon: Tom will share his experience living with frontal lobe dementia
  • Wendy Glance: Wendy shares the ups and downs, challenges and blessings and ideas that she and her husband Keith have implemented to manage living as well as possible with younger onset dementia.
  • Dina and Krishan Shah: Dina and her son Krishan reflect on the experiences of Dina’s mum who was living in Kenya at the time of diagnosis. They will describe the cultural nuances that made Bena’s transition to Australia unique.
  • Cheryl Sorenson
  • Annie Lawrinson: Annie is a young artist will present her experiences of being a teenager when her dad was diagnosed with younger onset Dementia. Annie will share her art work and a film she featured in.

12.30-1.30pm: Lunch

1.30-2.30pm: Concurrent workshops

  • Emma Jack: Wu Tao Relaxation is a combination of beautiful movement, self massage and creative visualisations to bring balance, harmony and joy.
  • Dr Catherine Barrett, Lisa White and Iris Whitelock: Belonging will begin with reflections on Belonging Theory, then people with dementia will share what belonging means to them. The workshop will finish with participants moving as collective to highlight the power of belonging.

2.30-3.00pm: Afternoon tea

3.00-3.45pm: Learning from people with dementia

  • Emily and Chris Earnshaw: Emily and her mother Chris describe how they used art as a strategy to communicate with Chris’s mum Sylvia, who is a talented artist
  • Vicki Barry: Vicki will share the journey she and her husband have been on since his diagnosis of younger onset dementia and the possibilities for co-housing as an innovation for building support
  • The Costello Family: Sisters Diane Costello, Helga Arlidge and Deborah Costello describe how they used Facebook as a tool to provide the best possible care for their parents; and as a tool for supporting each other.

​3.45-4.00pm: Tools for change

  • How to take information from LoveFest to create change
  • Announcement regarding LoveFest Perth resource.

4.00pm: Close

* Registration is $120 for service providers or free for people living with dementia and family members – by ​emailing: director@celebrateageing.com

Book on Eventbrite.

Hope to see you there!

Until next time, I’m sending you all much love and many special hugs,
Bianca

Is it really Telstra calling?

Recently I have been receiving more and more calls from scammers on my home and mobile phone. I have a private unlisted number for my home and I am also on the Do Not Call Register. for all of my numbers, so it really intrigues me as to how they access my number or whether they are just dialing randomly.

This thought aside, as a person who is naturally suspicious and able to ask the right questions, my “Telstra technician” usually hangs up pretty quickly.

But what about those that are more vulnerable to the threats of disconnection that these people make?

If you are unsure, hang up and contact Telstra.

Also, if you are unsure of how to manage your computers internet settings, have a trusted person that you can rely on to manage them with you.

I have found this pamphlet online that may be of assistance

Is it really Telstra Calling

Come along to the Heart to Heart Connections Memorable Morning Tea on Thursday 15th February, 10am

The 3 grand essentials in life

  • Something to do
  • Something to love
  • Something to hope for

Joseph Addison

I would love to invite all people living with memory challenges and their supportive partners to come to this delightful cafe that will invoke many memories for us all.

Please see the flyer or contact me for more details.

I am so excited to be able to be running these delightful meetups!

Numbers are increasing, so RSVP would be appreciated so that catering can be guaranteed

Heart to Heart Connections Memorable Morning Tea

mmt

Designing Christmas Dementia Style

Christmas is a great celebration time for family, loved ones, friends, children, pets and it seems any other living object that can get involved in the festivities.

The more that social media becomes involved in our lives, it seems that we have to take more and more pics to prove to everyone that we are having a great time.  Remember that being with someone at Christmas is about time spent with loved ones, cherishing life and enjoying the moment, then sharing and reliving these colourful, funny or emotional moments from different points of view at a later time.

Recently when speaking with one of my beautiful friends Kathleen who is living with dementia, we were talking about the “epidemic of Christmas” (her words).  When we were concluding our conversation, her final words were –“Love & Kindness needs to be the epidemic”. Truer words could not be spoken.

For a person living with dementia, it is very often noisy, overwhelming and exhausting.

Let’s look at just a few little ideas on how we can make this Christmas more memorable, loving and kind for a person living with dementia.

  • Keep background noise to a minimum – Christmas Carols are great, but not all day and night, and not whilst we are trying to concentrate on conversation and remembering our relationships with our loved ones.  How about a few carols at the beginning and the end of the celebration?  Keep me safe in a quieter area of the room, and give me a space to have time out if needed – a “little rest”during the day is a wonderful break for me to rekindle my thoughts and energy.
  • Name Memory Aids – We all struggle at times to remember names and relationships.  Name memory aids are a great way for everyone to glance and remember names – that is when the automatic connection comes in regarding relationships.  If relationships are not being recognised any more, bring it into your conversation somehow, or just be straight out with it.  “Hi, I’m Bianca, your neighbour from number 16”, for example.
  • Presents – Usually a person living with dementia delights more in experiences in the moment rather than expensive or gifts that have no meaning. Remember that the Christmas celebration is overwhelming enough, let alone all the presents.  Try celebrating all throughout the year rather than just one day.  Make a roster with your family, friends and loved ones for small visits rather than all at once.  These are the gifts that will live on forever.

Wishing you love and kindness, and all the joy of a beautiful New Year ahead.

Bianca from Heart to Heart Connections

Come along to the Heart to Heart Connections Memorable Morning Tea on Thursday 26th October, 10am

The 3 grand essentials in life

  • Something to do
  • Something to love
  • Something to hope for

Joseph Addison

I would love to invite all people living with memory challenges and their supportive partners to come to this delightful cafe that will invoke many memories for us all.  Please see the flyer or contact me for more details. I am so excited to be able to be running these delightful meetups!

Numbers are increasing, so RSVP would be appreciated so that catering can be guaranteed

Heart to Heart Connections Memorable Morning Tea

mmt

Delirium is NOT dementia

 

For those of you who know me, you will recall me constantly saying that hospitals are not places for people living with dementia.  If we can avoid hospitals with good lifestyle and health choices, fantastic – but sometimes we really need to be there with and for our loved ones.

Remembering that there are over 100 manifestations of dementia and that every person living with dementia experiences things differently, I say this with the utmost grace and respect – hospital workers (and I was one of them) have limited knowledge of what living with dementia REALLY is.

From my latest venture into the hospital environment, and despite hearing of ongoing staff education and advertising that hospitals are now becoming dementia friendly, not much has changed in the way someone living with dementia is perceived.

Please note that I am not saying that the beautiful people attending to my loved one were not kind, well-meaning, and trying to do their best in a very difficult critical circumstance.  They were.

What I’m saying here is can we please stop concentrating on and blaming the diagnosis of Dementia when there is so much else going on in this environment?

Here’s my story….

My beautiful friend who was living well with moderate to advanced dementia was normally conversant, mobile, had a sense of humour; and although they had a diagnosis of dementia, their general health and well-being was remarkably good.  My friends  spirit was strong, and they had a good sense of who they were in our world.  They were aware of their dementia and the limitations that it caused them most of the time.  The biggest thing with my friend was that the triggers to bathe, nourish themselves and handle money were marred. Also, their concept of depth perception and balance was a little bit off.

Recently my friend experienced a fall.  Unfortunately, this caused a fracture of the neck of femur, commonly known as a fractured hip.

When admitted to hospital, my friend was in incredible pain and delirious with it.  This delirium, even though somewhat managed with some pain medication, was also seen as their “symptoms of dementia”, and even though my friend had never “displayed” the “behaviours” that staff were now experiencing as being part of  their dementia previous to the admission, such as hallucinations, calling out, swearing, becoming aggressive with staff and general agitation, the general consensus was that these “behaviours” were a part of the dementia.

On top of this, my friend was not hydrated well prior to the admission because of the forgetfulness that they experienced in maintaining self-hydration, therefore increasing the delirium and possibly, their pain.

The other issue was that my friend had no immediate family or guardian that the hospital could call on to sign papers for surgical intervention; prolonging pain, delirium, dehydration and now postponing surgical intervention until papers were signed.

Moving forward, papers were finally signed, the operation was carried out and my friend was returned to the general orthopaedics ward – into a room that was initially not monitored, leaving my friend in their post-operative state (and probably worse state of delirium) to remove their catheter and intravenous fluid that was sustaining them.  Again, the dementia was blamed for this – as well as some acknowledgement of “postoperative delirium”.

It was at this time that my friend said to me that they were not going to make it, this was the end.

In my thoughts, these words meant my spirit is broken, no one is listening

More pain management medication was introduced, and then of course came the loss of swallow reflex due to the sedative effects of medication, and the sign for “nil by mouth” to be hung on their door, increasing the dehydrated state, and subsequent increased delirium and now also a heavily sedated person.

Luckily, my friend’s spirit was incredibly strong – their condition improved and their ability to swallow therefore returned, so much that they were eating and drinking well… but their cognition was nowhere near close to what it was prior to their admission, and their capacity for self preservation was non-existent, leading to decline once again.

At this stage, my friend was not in a good way, and comfort measures were introduced to enable them to move gracefully into end of life.

The hospital commenced making plans for my friend to return home.

In a standard cognitive environment,  such as in a person without dementia – returning home would not have been considered at this stage.  The person was not cognisant to their normal way of being, their mobility was impaired – actually non existent, and their was no rehabilitative process in place.

In other words, there was no hope for this person to return to their former way of being.

My point is that I am not looking at the way that the person was treated medically, as this was accomplished with the utmost professionalism, respect and dignity; but the lack of knowing who the person was (the person’s spirit) prior to their admission to hospital and not acknowledging concerns by the people supporting them expressing that the “behaviour” was not normal for them markedly prolonged the amount of time taken for the comfort, treatment and rehabilitation of the person for a medical issue, and gave them no hope of returning to their prior way of being, just because of their dementia.

Please, if you are advocating for a person living with dementia and the “behaviour” that your loved one is “displaying” is not normal for their own personal experiences of living with dementia, speak up! And keep doing so until someone listens. It may be the point of difference in what treatments will be administered, and also enable prompt interventions for comfort and peace if this is what is needed.

And humbly, all I ask of the health care professionals is – If you are working with a person living with dementia in a way that is supporting their health and wellbeing, please work not only with the person living with dementia, but with families and loved ones to explore what is REALLY the persons own individual way of being with their dementia LOOK FURTHER than the diagnosis – look at the whole person and who they are…….

Please don’t blame the dementia.

With much love, Bianca

P.S. In my next blog, I’m going to give you some hints on how to support a loved one living with dementia in a hospital environment.

P.P.S – Just in case you were wondering….my “inverted commas” above mean that these words are general phrases used regarding a person living with dementia and what I prefer to call expressions of unmet needs

I am very happy to support you in any way possible to enable the wellbeing of people living with dementia in hospital or at home.  Please contact me for any queries.

If you have a friend or relative who is working their way through a medical or nursing degree, please share this article with them.  Sharing empowers knowledge of peoples true stories. And from this, there may be a better understanding that we can look past the diagnosis of Dementia and truly see the person for who they are – looking into the true essence of that person.