Our Dementia Story in A Nutshell…

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As many of you know the Partington family has jumped on the front foot and put our very personal family story in the public domain to raise awareness about dementia and provide a positive path for other families.

We have just finished being involved in a new Eldercare corporate video to be released very soon.

We have also tried to support the hospital research fund by telling our story. This is to raise funds for vital dementia research. Click on link below for our story.

To be quite frank- at the moment they do not really have many clues on how to prevent dementia, but they have to keep trying as dementia will be one of Australia’s biggest health problems in the next 10 years. ( it is currently no#2).

Don’t forget- if you know anyone with a family member or friend with dementia/Alzheimers they can join my ‘Dementia Downunder’ support group on Facebook.

https://www.facebook.com/groups/417443648442828/

https://www.hospitalresearch.com.au/the-long-goodbye-bretts-journey-with-his-dads-dementia/

 

Detective Work in Dementia – ‘Where There’s Smoke, There’s Fire’

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Dementia is all about watching body language, noticing small changes and thinking like the person with dementia. They often cannot express their pain or thoughts, so it is up to carers, nurses and family members to notice these subtle changes and take action. It is very much like being a detective and looking for clues.

Alzheimers Disease in the early stages usually impacts the short term memory but may not affect the long term memory until it progresses. Some people with dementia believe they are still living in older times and may re-live events or incidents from their past.

I would like to share a recent story at the nursing home that sparked my interest and I am sure many of you may have had similar situations occur that may make you think differently about them.

There is a resident called Barney who communicates well and every story he has shared with me to date has been 100% true. A week or so ago the staff told me ‘Barney flipped out’ . His behaviour was strange (non violent) but not his normal self and very peculiar. He was difficult to manage and was hard to distract when he became fixated on things. One of the staff told me that Barney was talking about a fire at the time.

This week I decided to visit Barney to see how he was and he instantly told me about an incident with a fire. He told me he his father built a fire-proof house in the country and he watched his father walk into the fire and he was killed. I have no idea if the story was true, but I would bet there was a heavy element of truth in what he was saying to me.

Afterwards I thought about what he had told me and I was wondering what was really going through his mind at the time. Why did he behave so strangely and what sparked the behaviour? I then went into his room and I noticed that his room smelt of smoke. There is no smoking allowed in the rooms, however I couldn’t get past the fact I could smell smoke. I have read that with people with dementia often have heightened senses including ‘smell’. If Barney was smelling smoke, this may trigger an unpleasant thought process causing the behaviours.

I then asked myself the following questions:

-Is the smoke smell in his room triggering a bad memory and reminding him of a previous traumatic incident?
-Is he re-living the past in his head and did he believe he was stuck in his burning house and was in a panic, and hence behaved the way he did?
-Does he have an old relic in his room from that fire that is making his room smell?

People are often too quick to ‘blame the dementia’ and increase or add more medications to control the behaviours. When in fact, maybe if the room was aired out, and the staff aware of his past history, they may be able to tackle the behaviour in a different manner?

Anyway, this is a small insight as to how it can be beneficial to step into the shoes of a person with dementia to truly understand their behaviours.

We’re Not “Knockin’ on Heaven’s Door” Just Yet…

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Now this is a great idea for the Memory Support Units (MSU – locked wards in nursing homes) for people with dementia.

The idea is that the resident selects their fave colour for their door to their room. They have a better chance of remembering a colour than a number.

It saves staff having to find people’s rooms for them. It also brightens up the ward and gives it life.

It is a cheap and quick positive impact in dementia world.

*Thanks to Julie Clifford (Alzheimers Australia SA) for this information.

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Our Most Challenging Time?….It May Surprise You!

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I want to share a conversation I recently had with my sister, Jane. We were discussing what were the toughest times during Dad’s journey with Alzheimer’s disease. We talked about the aggression,paranoia and violent behaviour, and tough times in hospital. We then realised that some of the most difficult days were not in the obvious times, but moreso in the early stages.

It was the “in between” stage where Dad was really fit and to the general public he looked like any other healthy 65 yo man. But it was when he would walk into a café to buy a pie or a coffee and walk out without paying for it that things became awkward. He would spend hours in the hardware store without buying anything and would attract the attention of security. Dad would also hallucinate and see a reflection in a shop window and talk to the reflection. This is really difficult for the family member or carer as they are forced to ‘cover’ for the unusual behaviour.

Dad loves interacting with small kids and on occasions in shopping centres he would bend down to say “hello” to a child. Kids love Dad’s kind nature but on a couple of occasions the mother would swoop in and stand between him and the child or pick the child up and run away . One lady abused Dad and treated him as though he was going to abduct the child and harm them. This is certainly not the case and I was right there when it happened. It was an embarrassing moment where I felt guilty, and Dad was completely confused. I totally understand the actions of the lady (as Dad looked normal) but I just wanted to highlight the ‘flipside’ of how that felt from people just being nice to others. Incidents like those above often force families to stay home and no longer be seen in public. This is the stigma about dementia that needs to change!!!

I believe we need to reach a point where we can discreetly tell a member of the public that this man or woman has dementia, and they have enough understanding to be able to positively deal with the situation. This comes from education via media and people sharing their stories and putting it “out there”. Nothing will change until we do something different.
I am sure many family members and carers have been in awkward and embarrassing situations with someone with dementia. As a community we need to become ‘dementia friendly’.

Wow….The Dementia Journey is Getting Bizarre

 

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I spent the day filming a documentary style promotional video for our aged care facility. It involved interacting with residents ( who were awesome) and carers/nurses (superb), voiceovers and script construction.

I certainly won’t become an actor, but was a great experience. Let’s hope the final product turns out.

I won’t wait by the phone for my ‘hollywood’ call-up:-)

This is dementia..

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I Got Caught In Charlotte’s Web

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I have to share this great story about a nurse called Charlotte.

When Dad was in the Royal Adelaide Hospital (RAH) we had a nurse look after Dad who showed a special warmth and compassion towards him. I remember asking her at the time if she was a ‘country girl’ as she was so open and caring. Charlotte is what I would describe as a real traditional nurse in every way.

As a family we warmed to her in the RAH, and one day on her shift she ‘broke Dad out’ of the locked ward and took him and myself to the hospital cafeteria. Dad then felt like dancing in the middle of the café and chose Charlotte as his partner. It was an awesome scene to watch a nurse (in uniform) and patient (in dressing gown) ‘rock and roll dancing’ in the middle of a café with no music, in front of everyone else without a care in the world. (I may have video of it somewhere)

As I could tell that Dad had really warmed to Charlotte I took plenty of pics of them together. I think we probably ‘bent’ a few hospital rules that day, but Charlotte was totally cool with it.

Anyway here comes the twist in this story…..

The best photo I took of Charlotte was the the one above. I loved the pic as it captured a ‘special moment’. The day Dad was transferred from the RAH to the Repat, I went in to ask Charlotte for permission to use her pic on my websites. Unfortunately she was not in the ward that day and I have never seen her since. I then had a decision to make – do I use her pic still? I took the gamble thinking Australia is a big place, and she will probably never ever see it.

Sure enough her boss at work comes across my website and recognizes her picture and tells her. So Charlotte checks herself out on this site and then joins the ‘Dementia Downunder” Facebook group. I had no idea who Charlotte was when she joined (a few months back) and today it “clicked”. I realised that Charlotte was the nurse from the RAH in my pic…..she found us!

I thought I better come clean and ask her permission about using her pic, even though it has been on the net for 6 months. Luckily she was more than happy to.