My Unsung Hero

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It is no secret that my Dad is my hero, however I am blessed to have two heroes and today I want to share something about my Mum. Many people often ask me how my Mum is coping with things (dad’s dementia), so I thought I would take the time to say a few words about her.

My Mum (Jan) is a quiet and understated person and has a unique set of qualities that are extremely valuable. She goes about her entire life in a supporting role to all our family members but without doubt she is the most pivotal and influential. Mum is always there for us no matter what….It can be a winning moment, a losing moment, a tragedy or a triumph….the one constant is that she is always there to be proud of us or help pick up the pieces. She has earnt the right to tell us when we have ‘crossed the line’ and is famous for setting the highest benchmark standards for us to aspire to.

Like many mums she is happy flitting around the kitchen preparing food and making cups of tea. I recently observed her going about her business and I noticed the selfless manner she looks after our extended family. She made sure she fed us first and she would always be last to eat and was constantly asking how we were all going and if we needed anything else.

Having Dad with dementia has galvanized our family but has also educated us all and allowed us to grow as people. Mum has been steadfast in her loyalty and commitment to Dad and has not only been there every step of the way, she has thrown herself into danger so many times. When Dad has been very agitated she would place herself within Dad’s personal space to try and calm him down to protect him, protect the care staff and also the other residents. The potential for her to get hurt is very real indeed and her brave approach has been amazing to say the least.

The way she has coped with Dad’s illness has been incredible and she has looked after so many other residents within the nursing home when resources have been stretched. Mum is in the nursing home every night making sure Dad is comfortable and well fed and has hardly missed a day in all the years Bob has had dementia. I am so grateful for her for being there for all of us and making sacrifices to ensure we all live well.

You may be surprised that my Mum does not read my posts, my website or see me speak in public, and that is totally ok with me, as we all deal with dementia differently and I respect that. The reason she doesn’t is she is living with dementia every day and having to read it back can be extremely difficult to cope with. I have her blessing to share our story and am confident she will one day gain comfort by reading this post and knowing we made a difference to many other families in a similar situation.

The partners of people with dementia really do it tough and my Mum has been both inspirational and legendary. If I had to describe Mum in 3 words they would be loyal, compassionate and honest.

Mum rarely takes a breather and we will be looking after her when she needs us most. Now is the time for her to follow her passions and do things to please herself (without guilt) and create her amazing artwork. Mum has the talent to be one of the best artists around and I hope she will be exhibiting real soon.

Bravo Mum…..You are the best!

PS – the pic was taken last year when Bob had mobility.

The Changing Culture in Aged Care

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ARTICLE – ‘THE CHANGING CULTURE IN AGED CARE’

The Advertiser, 9 January 2017

THE like-it-or-lump-it approach that sees children throwing dinner, bath and bedtime tantrums has long been used in aged care but is finally falling from favour.

Regimented schedules in aged care-homes are being replaced with progressive thinking that puts residents at the centre of the plan, says Alzheimer’s Australia SA acting chief executive officer Rajiv Chand.

“Aged care is now very much moving to person-centred care,” he says.

“Not everyone likes to get up at 7am, have a shower and have breakfast.

“It’s (about) getting used to that thinking that we’re all unique.

“You shouldn’t need to conform to the schedule. Why can’t the schedule work around you?”

Mr Chand says every resident used to get the same food and the same care at the same times but they were likely to be happier if they were treated as individuals, instead of as a group.

“Not everyone likes porridge or toast for breakfast,” he says.

“It’s about being very much in tune with a person’s likes or dislikes.

“It’s very simple but it used to happen — everyone used to get the same everything.”

He says many of the changes to dementia care do not have to cost more.

As well as changing how staff relate to residents and how their schedules are managed, care providers are doing more to create a homelike atmosphere.

Mr Chand says there is “very much a positive trend” in aged care and people looking for a place for their parent living with dementia should do their homework.

“Do your research; go to a few aged-care homes,” he says.

“Maybe get there at lunch time and sit there for an hour or two. You’ll work out if this is the right place you want to put your mum or dad.”

To read the full article – click the link below:

http://www.adelaidenow.com.au/news/south-australia/the-changing-culture-in-aged-care/news-story/9a6498575667b2eeed2387ffdff0e15d

National Dementia Conference – Melbourne 2017

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‘Be the Change’ with this unique opportunity to explore leading approaches to supporting people living with dementia to live engaging and rewarding lives. The 17th Alzheimer’s Australia Biennial National Dementia Conference is currently open for early online registration. Earlybird rates available until 18 July 2017. Visit the world’s most liveable city and see why Melbourne has retained that reputation for six years in a row. The inspiring conference program is taking shape with keynote speakers being confirmed including Christine Bryden and Alan Duffy.

Dementia Conference 2017 – Registration

Memory Walk 2017 – 26 March – Glenelg (SA)

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Alzheimer’s Australia SA is excited to bring Memory Walk & Jog back to Colley Reserve on Sunday 26 March 2017!

Register for the 3km walk, 6km walk or the 10km run and help those impacted by dementia by raising funds before walking or running the race against dementia!

All funds raised increase our ability to provide vital support services, such as counselling and education to help people with dementia, family carers and health professional living in South Australia. These services reduce feelings of isolation and empower people living with dementia and those caring for them!

With your help, we can make sure that our support is always available to those who need it!

The first 100 people to register before 29 January 2017 will not only receive discounted registration, but a FREE Memory Walk & Jog event T-shirt too!

Facebook Page – Memory Walk 2017

 

Dementia on The Radio…5AA

What a great experience to be interviewed on 5AA by Bianca Vlahos just before New Years Eve.

It is my very first time on radio and was such an awesome opportunity to create more awareness about dementia, I couldn’t say no. I was only invited to be interviewed the night before which lead to a very short preparation.

We covered many dementia related topics and talked across one hour. We had callers ring in with different questions about dementia with one person suspecting a family member was showing signs, and another who had lost their husband to Lewy Body dementia.

We had no idea how many people were listening to the segment although the Dementia Downunder website spiked overnight. It is a very interactive and fast paced format with 10 second warnings before going live on the air.

I still have plenty of areas to improve and will be interviewed again on PBA-FM (Community Radio) on Monday, Jan 9 at around 4/4.30pm.

 

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Caring Mistakes – Time For Feedback

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As we are near the end of 2016 I thought it would be a good idea to share what we have learnt as a group and compile our own ‘DD’ list of mistakes that are made by carers. They can be big ones or small ones, knowing or unknowing.

This ‘call-out’ is open to anyone in the group to put forward 5-10 mistakes made by carers of people with dementia.

I can then collate these and create a master list that we can post on the ‘Dementia Downunder’ website.

It doesn’t matter if they have been mentioned before, and can relate to any area of dementia care. ( I can perhaps put them in categories)

I am really interested in what matters to YOU and what really frustrates you when you see these mistakes made when caring for people with dementia.

I will start us off with a few:

1.talking in front of the person with dementia about them.

2. Not caring what tv channel is on when a group of residents are watching.eg inappropriate or not suitable.

3. Continuing with a lifestyle activity when the group clearly do not like it or are becoming frustrated.

4. Excluding people from activities or conversations due to their stage of dementia.

5. Being lazy and not caring for the person to the best of your ability.

 

Onya Lads…Great Community Spirit

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Was blown away today. I visited the Scout Recycling Centre at Hahndorf to see if I could obtain some old toasters, microwaves, ropes, stereos, and anything with screws, nuts or bolts on it for our ‘Gentlemen’s Club’ sessions.

David at the Scouts Recycling Centre rustled up a few items and is now kindly holding small appliances for our group when he comes across them….FREE!

A customer called John was listening in on our conversation and before I left he stopped me and offered his help as well by collecting and dropping off things he comes across on the job.

This is Xmas spirit people! It has also sparked an idea for me to recruit men to help other men in nursing homes and be their friends and mentors.

Hmmm….

Let’s see where this idea can go!

Thanks guys!…appreciated.

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Our Forgotten Community – The Homeless

 

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This Xmas I hope you don’t mind if I use this blog to have a conversation about all the homeless people in Australia, and many who may even have dementia. We often have a stereotypical perception of our homeless community and what usually comes to mind for me is a wrinkly old man in smelly old clothes, with a scraggy beard and a booze problem. Well I have seen for myself what our homeless community looks like at close range and it left me with a very sobering impression. Sure, the majority of people ‘sleeping rough’ look exactly as I described, but we also have a grey myriad of people now that represent all tiers of society.

On a recent trip on to the streets of Melbourne with one of my sons I was staggered to see the amount of homeless women on the streets. Their entire worldly possessions piled up around them consisting of blankets, old bags, and usually a hand written cardboard sign. These signs usually give a brief snapshot of their hardship and personal story, a passionate plea for a few dollars, and always a very big ‘thank you’.

It seemed like every 20m there was another cardboard castle that could easily be mistaken for a pile of rubbish. Look closely and you see a head poking out and someone who has been de-sensitized from society, (more than likely a victim of domestic violence) and now simply just surviving.

Several months later back in Adelaide we decided to have a meal at Westcare Centre (a food & care service for homeless people) to see what a $2.50 lunch tastes like), and just sit amongst our street dwellers. We were intimidated and nervous as about 100 people drifted in from all directions of our city centre. They included our indigenous, our young, our alcohol/drug affected, our old, our strange and our mentally ill. What did we learn?…The majority of people are simply just everyday folks down on their luck who have slipped through the cracks.

There was an awkward overall silence in the room over lunch but once we ‘broke the ice’ and struck up some conversations with a few people they seemed to enjoy the company. We heard stories about, years of drug abuse, stealing to survive and even people from high class suburbs who would drive across town just to get a cheap meal and a chat. The volunteer helpers hustled and bustled as they pumped the meals out, and we were told several of them were previously homeless and had been offered a ‘leg up’, and found a way to dig themselves out of their situation, and now help others.

Recently I had the privilege to have a chat with an experienced Link Worker from Alzheimer’s Australia who looks after our homeless communities with dementia in Adelaide. A passionate and caring lady who simply gets the job done, and chips away at our underbelly of people who may think they no longer matter, may not want to be found and are probably not even counted. I wanted to grab this opportunity to learn about what happens to homeless people with dementia, and the answer?…not much at all!

The people on our streets have many challenges to deal with and their dementia/mental health is probably at the bottom of their priorities (and also everybody else’s). The level of knowledge about dementia is low and further training for sector workers is required. I was told nursing homes allocate approx 10 beds in every 500 for our underprivileged people and they are certainly not a desired resident. They are difficult to manage and often overlooked for a more ‘mainstream’ resident. Hostels will often reject people with dementia due to their behaviour.

Many homeless people with dementia are often undiagnosed, as they no longer trust the world and are in survival mode. Many have limited access to services, no Medicare card or have a very low self esteem and refuse to get help. These people are constantly in fear of being institutionalized. The link worker will visit the homeless shelters to chat with people over a ‘snag in bread’ and maybe a jigsaw puzzle, with the aim to try and create the best relationship they can. Once some trust is established, some simple ‘brain health’ strategies are taught which include:

• Look after your heart
• Do physical activity
• Mentally challenge your brain
• Follow a healthy diet
• Enjoy social activity

Thanks for allowing me to share a different perspective of dementia and I hope that as a caring society we can continue to find new ways to make positive and charitable differences ‘all year round’ to our homeless communities, and not only just at Xmas. Cheers

When Things Go Sour With Food

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I was chatting with a nurse this week about food and she advised me that people with dementia sometimes lose their sense of taste and that it can also vary over the journey. Does anyone know much about this aspect of dementia?

When people with dementia are in a nursing home do they get tested for sweet and sour foods? Imagine if you lost your sense of taste or it altered so foods you normally would enjoy, taste terrible? It would make meal times like eating glue if this was the case.

My concern is that as a family member I would advise the nursing home on dad’s admission what he would enjoy eating (according to his past history). But if the nurse is correct, then this means that those original food choices may become irrelevant. Do any facilities test or re-test food tastes with residents at different stages? How would we know if someone’s tastebuds have altered?

The Gentlemen’s Club – Week 5

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We decided to change our name from ‘Men’s Group’ to ‘The Gentleman’s Club’ cos it was part of our banter this week and is probably a bit more dignified.

No photos this week as we did painting again, but we did have two new men join the group, and they loved it.

I wanted to share a story which involved my assistant, and once again I copped a BIG lesson.

We were planning the activity for next week and I suggested we make a ‘hardware style activity station’ for each man out of bolts and nuts etc. At the time I thought it was a good idea when he stopped me in my tracks.

He snapped at me and said “Brett …. No!!!…That activity is not gonna happen. I joined your group because you gave these men real purpose. Do not go backwards, only do things that mean something and are useful. We owe it to these men to give them purpose in life ”

Wow!… I was shocked with his passionate outburst, but rather than be offended that he hated my idea, I am going to embrace the feedback and involve ‘purpose ‘ in ALL my activities.

This life lesson brought to you by the Dementia Downunder Gentlemen’s Club. The most authentic & insightful classroom in the world!