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

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.

Looking for an aged care home for your loved one? Read this!

He is happiest, be he king or peasant, that finds his peace in his home.

Johann Wolfgang van Goethe

Over the last year of my practice, I have supported many seniors and their families in preparing for and finding a residential facility that was “just right” for them.

This is usually after much discussion on when is the right time, and hopefully before a crisis eventuates, so that the move is planned well and with ease rather than hastily and without much choice of where to go – hence only moving once to get to the place you would like to be to live out the rest of your life if and when you can no longer live on your own.

This takes time; and as well as looking at the costs associated with living well in a facility (such as medications, extra services, what is included, etc), really knowing what the preferences of the person are prior to moving into a facility are so important, especially when weighing up which facility is going to be the best fit.

Here’s an example:-

My client Margy (not her real name) was moving into residential care. This was after a long and trusting relationship with a home care provider had given her a safe environment to live in, but had come to the end of it’s time due to Margy’s need for 24 hour care due to her increasing needs and for her safety relating to falls and nutrition.

Margy had always been very independent and lived a life where household duties were a large part of her daily activities, so when we started looking for a facility for her, her main concerns were around being able to continue to do what she had always done – cooking, washing, cleaning, gardening.

After a reply from one admissions team stating “we do not think she would be suitable for permanent residential care where these type of tasks are carried out by staff members” was crossed off our list (- so much for consumer directed care in residential facilities!), we then went ahead with narrowing down our list of facilities that were willing to enable Margy in still doing what she loved, even if in small ways and with support.

Many facilities were deemed “suitable” for Margy in this regard from the admissions point of view, but until we viewed the residences with Margy in attendance, we could not commit to “signing the dotted line” with peace in our hearts.  This is because although the facilities were saying that this is what they were happy to do, were they doing it in a way that was enabling (or disabling) Margy?  Did the place make her heart sing?

One of Margy’s very astute observations of the right place for her was that “everyone was smiling – even the ones in the bedchairs” (in her own words).

Eventually we found a beautiful facility, one where the staff understood the importance of Margy’s needs, enabling her to be independent with support, to have her own space when needed, allowing her to have the privacy and security of her own keys for her room, but not be locked in and being part of a bigger community.

Wait-listing prior to needing immediate fulltime care, avoiding crisis and having the discussion of what is REALLY important to the person moving into residential care is so important.

Then you have time to view facilities, work out what is going to suit and narrow down your list.  For best results, my aim is for this to be organised in advance as when beds become available, they are very quickly taken up, often with not much time to consider all of the things that are important – often resulting in a poor fit for the client

To discuss more in depth ways of how to go about this, or to get your free Residential Aged Care Check list, please contact me.

With much love and Warmest Regards, Bianca