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

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