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

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.

My Story – the importance of memories

Every person has their own story and our past experiences really affect our lives in the future to come. People living with dementia are no different, except that if they haven’t shared their past experiences and they can’t remember them now,  current or future events may trigger unexplained feelings that may then be seen as “behaviours”.

If you can, get a good life history from your loved one and also the people around them. Also, start writing or verbalising your own history – it is important for your future and only you will know what insignificant things may set you off on a positive or negative note.

Formulate or purchase a My Story book or use the Story Corps App on your phone or tablet.  There are some amazing questions and you will definitely find out something new about your loved ones by using these tools – start NOW – don’t wait for the future.

I have used these items with my mum and dad and we have had some great giggles and reminiscences about both of our lives as we saw them from different perspectives.  I have given them books to write in to give back to me on my birthday to share their memories of what I was like as a child and how they saw me growing up – I am looking forward to seeing things from their perspectives – it will indeed be a gift for me and very special.

Let me share an example of how knowing someone’s  history makes a difference to the way we see things and how we can see “behaviours” as unmet needs:-

One of my beautiful ladies living with dementia was covering herself with the bedclothes in the early hours of the morning, crying out “Turn it on, turn it off!” and the family that were living with her were trying to figure out why she was calling out such words in the darkness and why she was so scared…Could it be the light?  No…Could it be the fan? No….  Could it be the music they had to soothe her at night?  No…

It didn’t  matter what item the family tried to turn on or turn off, the “behaviour” continued.  They were tired, and at their wits end trying to figure out what exactly their loved one was after, but they knew it was important to the lady and so they kept persisting.

When I came to visit, I asked the immediate family to ask ALL of the family to try and remember a time where they had heard this phrase before.  And here was the answer…

The ladies sister, who was a couple of years her junior and still living in the UK, remembered a time when they were in the war, when they used to go into bomb shelters and use a woolen army blanket to cover them from the dust and fallout of the bombs.  She and her sister used to pretend the blanket was a magic invisible cloak that would protect them both from the ravages of the war – it gave them a great feeling of safety and that they were in a place where no-one could hurt them, that they were together and had unconditional love for each other. It was their safe place where nothing could hurt them, and they could turn it on or off anytime, anywhere.

When we look at this ladies “behaviour” from this point of view, we are seeing that she is not feeling safe or loved.  Rather than a physical issue, this is an emotional one.  So how to solve this?  Every night, before the family retired for the night, one of the family members would go into the ladies room, let her know that she was safe and loved, give her a big cuddle and let her know that they would see her in the morning.  After 5 nights of this, her crying out stopped and it is now a nightly ritual for the family to continue this on and has become a pleasurable part of their routine, spending time with their loved one in a beautiful and loving way, sharing a part of her life that they never knew existed until she was craving that feeling so much that it turned into a “behaviour” – or as I like to phrase it – an unmet need.

It is up to us to change the way we see the world of people living with dementia – it is  up to us to see things in a light that makes us responsible for discovering new things rather than wiping the persons needs off as a symptom of dementia, and to do this with unconditional love.

To learn more about discovering unmet needs please contact me to see how I can support you and your loved ones