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!

Men’s Group Week 3 – 100% Engagement

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Great result yesterday with the Men’s Group painting 3x Golf boxes ( first coat). The idea is that we will make a box for every section of our nursing home. ( as golf is the no. 1 activity).

I hope to then donate more to other nursing homes in the Eldercare group then expand to others as well. This way we are doing something for others and is relevant and a valued outcome.A low cost activity which people at all stages of dementia can participate in some form. Was amazed when Bob even had a go at painting.

Feisty Fred (96) was having a whinge to me by saying “Why should I bloody paint anything at all when this was the reason my father was disappointed in me not working with him as a professional house painter?”

He said all this and much more (about life with his dad) across the session whilst his hands went to work and beautifully and speedily painted the bulk of the boxes (in his pajamas).

The other men painted parts of the box, the brand new dining table, the newspaper and themselves.🙂

Overall a great result as it started conversations, was productive, and everyone was engaged. Thanks to my new volunteer helper, Michael who did a great job with the men.

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Don’t Forget To Acknowledge Your Carers at Xmas

 

 

 

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Just a reminder to make sure you wrap up a few extra pressies this xmas for the carers, nurses and helpers that look after our loved ones. I see first hand exactly what goes on in the nursing homes and hospitals and these people deserve to be acknowledged and thanked.

They never know what they are going to cop when they turn up to work and they learn to ‘roll with the punches’ whilst they take home very modest monetary reward.

Caring is a really difficult career both mentally and physically and to take on many people with dementia each day is amazing.

A small gift (or a handshake/hug) for other residents who may not have any family support is probably not a bad idea either. (not food – as this can be sometimes against nursing home policy)

He Laughed Until He Cried

This blog is another chapter in Bob’s story that I want to share with our ‘DD’ community. As a family member of a person with late stage dementia I walk into that bedroom each morning looking for a smile from Dad. If I don’t get it, the radar goes up and I am searching for a ‘why not?’. Is something wrong?….Has there been a decline?…What has happened overnight?…..a thousand questions are triggered.
Over the last 6 months or so Dad has been laughing and smiling with us whenever we enter the room. He lights up…his eyes widen….he sits up in his chair, he gives out a giggle and he searches for your name. The name rarely comes these days and we often receive an enthusiastic “….Heyyyy!!!!!….(no name)”. This is what puts a smile on our dial and inspires us to stay positive.
Yesterday he was talking ‘dementianese’ (jibberish) and in the middle of his conversation he threw in a random ‘Brett’ which I have not heard for about 4-5 months. My head snapped around as I thought to myself “did he just say my name?”. These are the special ‘split second’ moments that make my day.
I have noticed a significant change in Bob’s morning patterns with him being very emotional and bursting into tears without warning. This does occur throughout the day but at erratic times. The most recent change has been that Dad will give his regular trademark giggle, I will respond with a return giggle and smile, and his next reaction is an outburst of sobbing and tears. It is so heartbreaking to watch when this happens.
I am using much more ‘touch’ with Bob now and I will hold his hand all the time and rub his shoulder blade to give him comfort. I tell him “everything will be ok”. When Dad is crying, I feel for him and I feel sad, but I personally believe the tears are not being triggered by an unmet need, depression or anything untoward. I think the area of his brain which controls his emotions is deteriorating and causing his emotions to come out in a way that may not actually match his mood. What I mean is he may be feeling happy, but it is being expressed as crying (which is confusing). This is really tough to deal with as you don’t want to laugh when someone is crying, but his switch from laughter to tears is so rapid….it just happens. You just end up going “Awwwwwww….it’ll be ok Dad”.
The way I deal with this situation is to accept that this is another phase in the disease. I tell myself that we are doing everything we can for Dad and there is nothing we are knowingly neglecting. I try and concentrate on keeping my tone of voice ‘warm’ and ‘upbeat’ to let him FEEL my mood and positive rhythm. I can only hope that he is interpreting my intentions in a positive manner and understands that as a family we are continuing the unwavering care…no matter what happens.
I want you all to know that I am ‘ok’ and am just digging deep today to express my raw thoughts on dad to hopefully teach, educate and create further understanding in our community. I am comfortable sharing these very private moments in public and hope many of you can draw from these experiences when you need to. My blogs switch from happy to sad in a heartbeat and reflect the volatile nature of what we are dealing with….This is dementia.

3 Fun Facts about my Barossa Presentation

 

1. Balloons are popular in the Barossa.

Thanks to the audience yesterday for supporting ‘Dementia Downunder’ by being good sports and joining in my first ever colour co-ordinated ‘Balloon-Aerobics’ class yesterday “….5,6,7,8” 🙂

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2. It pays to read the fine print!…I took a pic of the staff flyer on a wall at the Tanunda Nursing Home promoting my presentation. I only noticed the last line they placed on the flyer when posting on the site .. which I thought was hilarious:-)

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3. This was my first ever presentation in a chapel. I can’t believe I played the ‘Benny Hill Theme Song’ (at top volume) and encouraged a balloon fight with the congregation:-) *We were ‘living in the moment’:-)

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Team Effort in Dementia Care – South Australian Community Awards 2016

Had a great time with my sister (Jane) and Mum (Jan) at the South Australian Community Awards last night.

Was fortunate enough to be a semi finalist in the Carers SA – Carer Achievement Award amongst a record field of 350+ nominees. Congratulations to all the winners and finalists in each category.

It was mind blowing to hear about all the fabulous initiatives, voluntary groups, services and champions that are helping others in need.

Really pleased to get a free plug from host Jessica Adamson (who did a great job as MC) for the two dementia related organisations I am involved with – ‘Dementia Downunder ‘ & ‘Dignity in Care Australia’.

It has been an honour to be helping families, carers, nurses and people with dementia all over Australia.

I just wanted to take this opportunity to thank ‘Team Partington’ – Caring for Dad has taken a massive group effort and I want to acknowledge Mum who has been inspirational and whose loyalty and commitment to Dad is first class, Jane Partington Rodger for her fantastic efforts with caring for Dad, and Jason Partington for his unwavering support as he deals with this from a distance. Providing care also impacts heavily on our wives, husbands and kids as so much time is required to do what we do, so a massive thankyou for your patience and help.

A big thank you to my mentor Dr Faizal Ibrahim who has taught me how to give dignity & respect to the elderly and has steered my path as a dementia advocate.

Dementia has no cure and a person is diagnosed every 6 minutes in Australia. There are almost 360,000 people with dementia in Australia.

When someone is diagnosed with dementia it can impact on the entire family for up to 10 years or more.

If you know of any families or carers impacted by Alzheimers/dementia please get them to visit www.dementiadownunder.com.au

Thanks

 

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Hon Zoe Bettison MP, Minister for Communities and Social Inclusion