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.šŸ™‚

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

 

 

 

holiday-gifts

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 Bobā€™s story that I want to share with our ā€˜DDā€™ 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 donā€™t get it, the radar goes up and I am searching for a ā€˜why not?ā€™. 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 widenā€¦.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 ā€œā€¦.Heyyyy!!!!!….(no name)ā€. This is what puts a smile on our dial and inspires us to stay positive.
Yesterday he was talking ā€˜dementianeseā€™ (jibberish) and in the middle of his conversation he threw in a random ā€˜Brettā€™ which I have not heard for about 4-5 months. My head snapped around as I thought to myself ā€œdid he just say my name?ā€. These are the special ā€˜split secondā€™ moments that make my day.
I have noticed a significant change in Bobā€™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 ā€˜touchā€™ with Bob now and I will hold his hand all the time and rub his shoulder blade to give him comfort. I tell him ā€œeverything will be okā€. 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 donā€™t want to laugh when someone is crying, but his switch from laughter to tears is so rapidā€¦.it just happens. You just end up going ā€œAwwwwwwwā€¦.itā€™ll be ok Dadā€.
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 ā€˜warmā€™ and ā€˜upbeatā€™ 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 careā€¦no matter what happens.
I want you all to know that I am ā€˜okā€™ 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 withā€¦.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” šŸ™‚

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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

Men’s Group – Week 2 Report

Special Guest – “Elvis Partington!”

The ‘hands’ tell the story in this collection of pics. Plenty of tactile activities this week.We played indoor golf, vacuumed with dustbusters, drew stuff, tuned the radio, polished silver, sharpened pencils,ate freddo frogs and choc coated Scotch Fingers, messed with old items (telephone, ink stamps, adding machine, etc), and generally just hung out in the area we now call the ‘MEN’S DEN’.

A few things went wrong :

My 2 Dustbusters both ran out of charge.

The designer dust I brought in to vac up… went everywhere. ( I upset the cleaner!)

The textas I brought in for ‘free-hand drawing’ went dry.

One of the men dropped the entire contents of the electric pencil sharpener all over the carpet.

Another man emptied the DustBuster contents all over his cream pants.

A very wobbly resident nearly fell when he hooked the extension cord around his foot.

I had two men ‘walk off’, two men fall asleep.

Feisty Fred heckled me the entire session with ” I am so stuffed, I don’ t know what the hell you want me to do!”

He also said “Why don’t you do this stuff when I’m not half dead… I am so bloody tired!”

I actually ran out of activities even though I filled my van with double the amount I brought last week.

Besides all that it went pretty good:-)

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Mens’ Group Session #1 – Mixed Bag

 

I thought I would give a report on the first ‘men’s group’ session at the nursing home I have done for a while. I was really pleased with the participation and engagement of the 4 participants. We did so many different things that 3 out of the 4 men were asleep by the end of the 90 minutes as they were exhausted.

I brought a suitcase full of ‘conversation starters’ ( mixed items) which kept things moving and changing as we had our own blokey ‘show and tell’. It also allowed me to determine the interests and capabilities of each man for future sessions.

The tasks we tried were as follows:

old fashioned manual pencil sharpening
electric pencil sharpening
polishing tarnished silver items with brasso eg candle holder, tongs, ice bucket
indoor fishing from the ice bucket (complete with tangles and hooking items)

Smelling different incense sticks
Indoor bowling with tube/tennis ball (for men in princess chair)
Sorting wallplugs into holders
Swiss army knife ( we spent ages pulling out each feature of the knife – they loved this)
Multitool gadgets

I conducted a few races & challenges, with the men with good cognition/movement using manual pencil sharpeners racing against men with limitations using the electric pencil sharpener. I also did a timed event with ‘The General’ where he had to place 15 wallplugs into a plastic holder within 1 minute. He did this several times and counted aloud for every wallplug he inserted. The highlight was opening as many functions of the Swiss army knife as we could and discovering the secret items which were a pin, a pen, a toothpick and some tweezers.

The conversations were great as well and there were plenty of laughs and smiles. ‘The General’ was cracking jokes with me as we did the pencil sharpening task and would say things like “it’s great to see you getting to the point” and “you are very sharp today”.

Bob actually stayed awake for the entire 90 mins and smiled constantly.( he normally sleeps heavily through this time).

A great first session and what I learnt was that it was real handy to have a heap of activity options at my disposal to keep changing things up and holding the men’s interest.

 

 

Lifestyle is a Cabaret

Ever thought about changing the uniform of the Lifestyle Carer to one similar to what Liza Minnelli is wearing?

I have witnessed hundreds of lifestyle sessions at the nursing home at close range and I believe I have discovered the ‘secret’ to this role. To make the leap from being a good lifestyle carer to a great one it is not just about rolling out an endless range of activities and games it is primarily about the personality of that person. In my opinion they need to be ‘entertainer’ first and foremost, a brilliant conversationalist, super positive, intuitive and switched on to the room dynamics. I have seen many different carers perform the same activities and the impact they have on the residents.

I am in awe of the No.1 carer (who I will call ‘Liza’) who turns up each morning and within seconds transforms the energy & vibe of the communal room from morbid and boring to a vaudeville cabaret. I have to admit that at first I was taken aback by her ‘out there’ style when we first placed Dad in the nursing home. I thought she was potentially a loose cannon and so outrageous that she was in the wrong job and could be a risk to residents. How wrong was I?….

Liza is not only vivacious and can almost talk under water, she has the ability to detect any resident who is not engaged and finds a way to involve them or look after them if they are not having a good day. It is what she says and does that is important, and is not actually about the activity. The activity is merely a prop to start conversations and entertain. Liza makes handing out tea and biscuits fun as she talks about her failed cooking experiences and jumps on any reaction from a resident to explore another avenue of dialogue.

To give you an example – this week she encountered a ‘male’ resident with his arm stuck in his cardigan and he was all twisted up with only his elbow popping through the opening of the sleeve. Most of us would say “oh Mr Johnson, what have you done? Let me fix that up for you”.

This is how Liza handled the situation:

She ran up to the resident and yelled out (for everyone to here) “Oh ‘Mrs Jonhson’ your baby is crowning!!!….keep pushing …keep pushing…we need to get your baby out before morning tea arrives”. Everyone was laughing and enjoying the moment and whilst not everyone understood the joke, they ‘felt’ the fun and frivolity and laughed along as Liza adjusted the resident who felt really special because he was the centre of attention.

What worries me is that Liza could possibly be viewed by family members as not providing care in the way us family members are conditioned to imagine it. Quiet, controlled and calm. I can see someone complaining to Management about Liza if they walked in and watched her in mid flight. This would be a tragedy and the residents would dearly miss her if she was ever transferred based on a misguided complaint.

My message??…. Lifestyle is about engagement and entertainment and when we judge the performance of the lifestyle carer we should be looking at the faces of the residents for the answers.

Bravo Liza!

My Magical Mystery Tour

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In typical Partington style today I am keeping things ‘different’ and sharing a side of me that has not yet been discussed , but surprise, surprise is still dementia related:). I felt it was important for people to understand how my dementia advocacy came about and how my attitude towards providing positive dementia care was formed. It is a bizarre story, but the last 12 months have been insightful, inspirational and full of magical moments. This story is essentially a story of gratitude and respect for my mentor and good friend Dr Faizal Ibrahim.

For those of you who know Faizal will understand what I mean when I say this man is unpredictable and outrageously funny. But he also commands your attention when in his presence, and no-one owns a room like Faizal does. He is also one of the most compassionate people I have ever met with a massive heart who runs on adrenaline and a never ending supply of passion, energy and drive. How I met Faizal is a story in itself and testament of how by doing something in the ‘heat of the moment’ you can change your destiny and your attitude towards life.

It was just over a year ago I was sitting by myself in the middle of the Glenelg football Clubrooms listening & learning from speakers presenting at the Alzheimer’s Australia Dementia Awareness Forum. I had previously had over a year or so of really difficult moments with Dad’s behaviours in the hospital and at home and I was basically ‘cooked’, but did not realise it until this day. It was the first time I had actually switched off my ‘caring for Dad’ mode and actually went into study & self reflection mode. As I sat there hearing personal dementia stories of others I realised I was not alone and was inspired by the speakers and in particular the Glover family from Port Lincoln. I was drawn to their story and loved the way their family rallied around Robin (the husband/father) who has dementia. They were in the early stages of their journey but had so many similarities to how they approached dementia. I spoke with wife Valda and daughter Deborah in the break and compared notes and thanked them for sharing their story.

Just after lunch it was announced that the keynote speaker Professor Richard Fleming from Tasmania was not able to attend the event and had been replaced by Faizal who was given only a few hours notice to ‘save the day’. To say that Faizal made an impact on the room was an understatement. He might only be small in stature, but he is larger than life and totally engaged the audience within seconds in his trademark mustard suit and his favourite story about Kentucky Fried Chicken. What stood out for me was he was the first doctor I had ever heard talk about ‘dignity’ for people in care and as he is a Geriatrician and specializes in people with dementia he certainly had my attention. I had personally experienced some very confronting and mind blowing events in hospital with dad at this point and here was Faizal saying “enough is enough….we need to look after ALL people in hospitals and treat them with dignity and respect’. It was so refreshing to hear this from a doctor and all of a sudden I started bawling like a baby. I cried for the next 45 minutes uncontrollably as I realized where I was at in our journey and what we had already encountered. I was so impressed that a medical professional was looking after people in such a caring and unique manner and prepared to make a stand, and was calling for dementia champions.

After Faizal finished his presentation I decided I am not leaving this room until I meet him and give him my business card. He was in a real hurry to get back to patients, but I managed to slip him my card and tell him…”if you need help, I am your man!” .This moment sparked a 12 month frenzy of dementia advocacy that has changed my life. Faizal said he would contact me tomorrow as he had a mission for me. He did this and convinced me to write an article for the Hospital Research Foundation to help them raise money by telling our family story (check it out here –https://www.hospitalresearch.com.au/the-long-goodbye-brettā€¦/ ). Faizal became my mentor and has introduced me to so many influential people within the hospital network and aged care system and opened many doors.

I have watched him do his thing and have learnt so much about dementia care, how to look after people with dignity, and how to create culture change. He has taught me how to influence people, given me the confidence to speak in public and inspired me to make a difference on a big scale without fear. Whenever Faizal has been involved ‘magic happens’ – he is on 11 committees, he is a very well respected geriatrician and dementia advocate, and he cares like no other. He encouraged me to study and complete the UTAS MOOC online course and has spent so much time steering me along the right paths to allow me to create as much culture change and awareness as I can. We have been so busy working together on all our dementia related activities and I pinch myself when I am in the hospital committee meetings sitting amongst such knowledgeable medical people in a world I never thought I would understand. Even though I have no medical credentials Faizal interpreted the jargon for me and made me feel an integral part of the team as the consumer rep.

I would like to take this opportunity to sincerely thank him for taking me under his wing and creating such an amazing array of experiences, valuable learning and self discovery for me. Faizal is currently dealing with his sick father in Malaysia and my thoughts are with his family.

Faizal came up to me recently and reflected upon our first year advocating & presenting together…he then said ” we did well, but now things are going to get busy for you” …..ahhhhhhhhh!!!!

Thank you Faizal for your mentorship, friendship & care for our family. Bravo!

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