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

International Day of Happiness

No act of kindness, no matter how small, is ever wasted. 

Aesop

Today, the 20th of March is International Happiness Day.

It comes with a little sadness in my heart that we have to be reminded to be happy, and only for one day – but the team from Action for Happiness have certainly made it easy this year to celebrate and encourage many actions for happiness.

In my experience when working with people living with dementia, it is an innate need to be happy, and to support others to feel happy too. Our spirit is driven to happiness in many unique ways, and ultimately it is another way of saying “I REALLY care about being here with you!”

“Well-being” is fast becoming the buzzword that we hear in every facet of supporting the elderly and disabled, but “happiness” seems to be a factor of well-being that is often overlooked in the planning of support for clients. Bearing this in mind, it is up to us to advocate for our loved ones and stand up for happiness. Let everyone know what makes your loved one laugh, smile, giggle, get in touch with their inner child and be free to be unconditionally happy. And remember, it does not take a lot of effort to do this – It is often the small things that bring out the smiles!

Today, I have a pocket full of Compliment Cards to hand out to whomever I meet; it doesn’t matter if they are a stranger, lover, co-worker, acquaintance, friend or foe – my aim today is to empty my pockets and fill others hearts with joy (which is my aim every day – but hey, why not do it on a much more physical level for a change?). Today I choose to find time to lose myself in what I love – Supporting people just to be happy.

Have a brilliant day. With much love, Bianca

 

 

Decisions from the Heart

The secret of change is not to focus all of our energy on fighting the old

but on building the new.

Socrates

It is hard work being a person living with dementia – it is just as hard being a supportive partner of a person living with dementia.

When we work together and try to understand each other, things flow more smoothly, and we can usually come to some form of agreement as to how to live our lives in harmony, but it takes work and great communication skills!

Today, I am talking about an issue that comes with the middle to late stages of dementia, usually when people are starting to use more actions and body language than the use of words to form sentences, or perhaps words are becoming more jumbled, such as using the word “cup” when the person actually means “saucer”.  This is a very frustrating time for both parties.

Let’s take a look at this situation for example:-

I (as the person living with dementia) want to keep something that is “worthless” to everyone else but me…for example, a broken ornament, toy or worn out item of clothing or accessory, such as a wallet or handbag.

EVERYONE is telling me it is old, unsightly, unhygienic and we need to get a new one or get rid of it, but I am sticking to my guns! I am NOT getting rid of this, and it is upsetting that you can’t see the value of it, and I can’t explain how much this means to me or why I want to keep it – just that it’s MINE and I am not letting go of it!

Let’s look at the two different perspectives…..

From the person living with dementia’s point of view:-  I love this item.  It invokes so many memories and feelings for me, but I may not be able to recall them.  It just makes me feel GOOD or I might use it again sometime – it has a use, and it is familiar to me.

From the supportive partner’s point of view:-  This item is not worth anything, it looks disgusting, and what will people think if I take my loved one out with this item, when I know that we already have another just like it, or we can purchase another to replace it.

Discernment is the key – And one question…Does it really matter?  Is the item THAT important that it has to be disposed of straight away? If not, either decide to let it go completely as your problem as the supportive partner, discarding the attachment to the item from your point of view. If it is REALLY that important, work on it slowly, with compassion and understanding from the other person’s point of view…so on to how to do this…

Let’s look at the strategies and is the strategy we’re about to use going to be effective?

When we attempt to resolve something – it is seen as a problem that needs fixing , we are taking action to solve a problem– if we break up this word “RE”– meaning do again, and “SOLVE” – meaning effectively dealing with a problem.  If we try to resolve things, we are effectively redoing the solving of a problem again and again – it will become a bigger problem if we keep doing things this way– this gives us no room to move forward and think of a legitimate reason for a person “acting” in this way.  I.E.  Here is a problem – let’s fix it.  Dementia and fixing does not work – for me (as a person living with dementia), it leads to thoughts of failure. It is an all or nothing approach which gives me no control over choices and therefore, I will assert my choice to keep the item, whether I am willing to let it go or not- and the more you approach me this way, the more I will collect and hide things because now I know you will start “stealing” from me to get rid of things you see as not important or useless.

Intentions however, have a much more compassionate energy. Because they don’t tie us to an outcome, they simply ask that we think about our actions and make efforts to do our best –actions done in this way are viewed with less criticism.  If your intent is to rid the person living with dementia of that item eventually because it actually is unhygienic or that a new one has been purchased to replace, start out with that intent – talk openly with the person living with dementia in short sentences and for a brief time.  Show your heart to them whilst you are doing this, and let them know that when they are ready, you have a gift for them (do not bring up why you are replacing this item!), that the item you have purchased may not be the same as the one that they have, or feel the same, but you want to be sure, that when the time comes to replace the used one, that they are comfortable with it. If the item is met with resistance, take it away, and start over on another day and time, when the person living with dementia is feeling comfortable about talking about it again.

When we do things this way, we can both begin again, without getting caught up in judgement about ourselves.  We can simply move on, realising that the next moment is a brand new moment and tomorrow is a brand new day.  We can always start again.  With intentions, our focus is not on what we want to “fix”, but rather what we want to create.  Long term, that’s a much more effective strategy to meeting our goals together

Perhaps place the new item side by side with the old one, and leave it at that – letting your loved one living with dementia know that it is their choice to decide if and when the old one should go.

There are so many ways to work with this, and because every person with dementia is as different as every other person in the world, there will be specific ways that you as a supportive partner “knows” intuitively what works and what doesn’t – use your knowledge.  To work with me on ideas on how to do this, please contact me.

Opening our hearts to people living with dementia

Bear with the faults and frailties of others, for you too have many faults which others have to bear. If you cannot mold yourself as you would wish, how can you expect other people to be entirely to your liking? For we require other people to be perfect, but do not correct our own faults.
Thomas Kempis

When we are supporting a person living with dementia, many people say “they push my buttons”, “they are saying/ doing those things just to see how far my temper will last”, or “they could do that yesterday, but not today – they’re being lazy”.

Honestly, these are the last things on the mind of a person living with dementia.  This person is truly endeavouring to do everything right and to the level that they know it should be done in the world that they are seeing as becoming increasingly strange and unusual to them.

I know it is hard to comprehend that the actions of a person living with dementia may be less than what that person was capable of, but they are trying their best with the information that they have at this time – in THIS moment.  When I say “this moment”, I mean right now, not 5 minutes ago or in 30 minutes time, or a day in the future – dementia just does not work like that. Dementia acts differently in every moment and differently for every person. It is up to us as supportive partners to understand that every moment is a new one and to support the person living with dementia in a loving and open way – seeing our role as being the gentle wind beneath their wings to enable the person to enjoy every bit of their independence.

A person living with dementia may be able to complete a task such as making a cup of tea perfectly at one time, and then the next time get muddled about the sequence or the tools needed.  This is when we need to watch how we see things and to open our hearts.  Many supportive partners would now begin to take over that task, thinking that the ability to make a cup of tea has now been lost and that this task is no longer do-able by the person living with dementia.

Let’s try to think of it another way….Let’s just say that you have forgotten one step of this sequence, or one tool for the job?  If a friend came along and gave you a hand with that one little thing that would get you on your way again, how would you feel?  Not as helpless as not being able to do that job at all or having someone take over what you love doing completely. Actually, I am prepared to bet that you would feel quite impressed with yourself that you had completed the task , and that you had an amazing friend who could give you a hand to complete the job.

Sometimes all it takes is one word (“milk?”), one hint (“there’s the kettle”) or one little item left out (such as tea bags) to enable a person living with dementia to get the ball rolling on tasks – just a hint of what needs to happen, and then they can go merrily on their way.

This practice not only saves your relationship, but will also save time in the long run as the person living with dementia will be happier because of their success and support with independence and their trust in you, making the rest of the day flow more wonderfully -that you will be there with them, working together, no matter what.

If you or a loved one are living with dementia, I can support you with any difficulties that you may be having in this area regarding independence and/ or supportive partners seeing things differently.

Please contact me for further information or support.  With much love, Bianca

 

Will dementia take away my ability to choose?

Everyone will experience dementia in their own way. How it affects someone over time is unique to each individual – their attitude, relationships with others and surroundings that will all have an impact.

One question I get asked by people living with dementia is “Will I still get to make my own decisions?”.

Many people living with even the advanced stages of dementia CAN make decisions regarding their life- weighing up risks and choices when given the support, time and tools to enable them to make choices that are right for them.

How I address this is to look at and work with the person living with dementia and their loved ones around how they are managing right now – in this moment.

Many concerns come around safety, vulnerability and finance  – especially the possibility of overspending, being swindled or being taken advantage of.

If you have a trusting relationship with your loved one and you are open to sharing concerns, talk about your concerns over these things, giving choice to be able to work together on things that may need support.  If the relationship is not so good, then sometimes things have to be done in the background to ensure that things are in place to protect the best interests of the person living with dementia and their loved ones.

I am able to support you though this process and have plenty of information and tools that you can use to put both of your minds at rest regarding not only financial decisions, but life decisions as well.  My motto – like the boy scouts is “be prepared”. Please contact me for more information.

My story around this is about a lovely lady living with dementia who was struggling in her own home.  Her family were concerned around her vulnerability to being swindled from door to door salespeople and the like, and also around her general security as her ability to navigate her street and sometimes her own home was getting to the point where she was becoming disoriented and afraid.

Although the lady was extremely independent and had formal support in place a lot of the time, she had the ability to know that she was becoming anxious around being alone and often felt afraid of theft and her security. She did not want to leave her home for the fear of what residential care looked like in her mind and also that she would lose her friends and her independence.

Once we talked about her fears, her choices, her families concerns, what she wanted her life to look like and many other things, we decided all together with the final choice being made by the lady living with dementia that perhaps a “trial” of residential care may be good for her, and perhaps this would give her the opportunity to try out a few facilities of choice that the family had found that would suit their mums needs and interests.

This was a process that involved many hours of supporting the lady living with dementia, enabling her to express her feelings freely. It was not an easy time for anyone concerned.  There were tears, arguments, mistrust, feelings of guilt and many other emotions prior to the admission to the facility, but the final decision was indeed hers to go ahead.

This was all orchestrated with love in our hearts at every step, so that the lady knew that we had her best interests at heart- she could trust us and if she wanted to return home, that was fine too.

Within 2 weeks of the lady trialing residential care, we could see that the her health had improved, that her conversations were more lively, and that she was having her spirit lifted with the many activities that she was joining in to and being part of.  As well as this, we incorporated a visitors book as one of her main concerns was that no-one would visit her if she went into care.

After the 2 weeks, we again got together and discussed all of the pros and cons, her fears, what improvements needed to be made for her to stay and what her ideal life would look like in the future, and the decision was then made by the lady to move into residential care.

This is just a very brief account of what happened, but gives the answer to the question above – dementia does NOT take away your ability to choose.

Dementia may take away some of your strengths and abilities, but it won’t change who you are. With a positive outlook and the right support, it IS possible for someone living with dementia to live well and still get the best out of life by making decisions that are important to them and have these decisions adhered to and respected by others.

If you or your loved one are living with dementia, please contact me to see how I can support you.