Outdated Disability Signage….A Sign of The Times?

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I have been thinking about current signage for people with disabilities and I believe it’s about time for a review or better still an overhaul. Our airports, shopping centres and the like use ‘the wheelchair’ as a generic symbol to represent disability.

My point is that ‘not all disabilities are visible’ and is the wheelchair symbol relevant in our complex and diverse modern world? What about people with cancer, down syndrome, diabetes, dementia and the list goes on. I certainly am not downplaying or discriminating against people in wheelchairs but moreso calling for a positive and unified NATIONAL SYMBOL that encompasses anyone requiring ‘extra assistance’.

While we are at it….. the word ‘disability’ is so condescending and immediately puts people on a lower rung. We must treat everyone with respect and dignity, and here would be a great place to start.

I remember in the 80’s when businesses were rapidly installing the long overdue wheelchair access ramps and rails etc, but times have changed and so have the requirements. The amount of people with dementia is rapidly rising and with no cure and constantly diminishing funding something is going to give.

Wouldn’t it be great if our councils, charities and service providers could work together towards common goals such as parks and playgrounds that combine relevant equipment, signage, fencing, pathways and most importantly bathroom facilities. Perhaps we should call them ‘Care Playgrounds’ and ‘Care Parks’ and have an ‘all inclusive’ mindset where all people are considered in the planning? Combine funding to build better quality facilities and get better results may be a better option also?

I have heard about some airports calling their disabled toilets ‘Accessible Toilets’ which is a positive step forward in the interim…but can we do better than this?

Our airports now offer ‘prayer rooms’, wouldn’t it be great to have several accessible ‘quiet rooms’ for whoever needs them? Knowing the requirements of people with dementia this would certainly be a better use of resources amongst a busy and confusing environment, and once again be ‘all inclusive’.

Brisbane airport is leading the charge with training programs, signage changes, and more overall awareness. Let’s hope we can extend the push into other areas and start looking after everyone equally. The Hills Councils, Community and Dementia Workgroup are working on a Dementia Friendly Park in Mt Barker as well.

Something to certainly ponder….

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Muffin Robbery Causes Chaos at Men’s Group

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An incident occurred today at Men’s group which could have had catastrophic consequences. Feisty Fred the grumpy 95 yo resident had dozed off while painting one of the indoor golf boxes today. Fred had been unable to hold his paintbrush due to his self confessed condition of being “almost dead”, and proceeded to tell me he “couldn’t give a stuff!” then nodded off.

Nifty Neville the 70 year old resident (a former doctor) saw an opportunity to reach across and steal his muffin. I watched the theft take place and decided to keep the peace by not declaring that I saw him take it. Seconds later Fred woke up, looked at Neville (who was grinning like a cheshire cat) and noticed crumbs on his chin. Fred then let out an an almighty spray aimed at me. He said “Why don’t you go and punch this bastard in the the nose, he just stole my muffin!”. He then said “If you don’t belt him I will, I wanted that muffin!”.

I decided to leap into action and promised Fred I will source him a brand new ‘extra fresh’ muffin just for him. I ran to the kitchen but no-one was there, the morning tea trolley had left so I was forced to run to another wing of the aged care facility and beg for a muffin. Luckily they complied and I raced the muffin back to Fred.

Fred moved his new muffin to a safe place on the table before devouring it. He did zero painting today but I guess he was engaged in the group indirectly and a brawl was averted…..This is Dementia

Magical Moment at Memorial

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Last weekend would have been Bob’s (dad) birthday weekend so as a family we had a private memorial for him, complete with a Skype linkup via laptop with my brother’s family who are currently in Bali.

The memorial was absolutely amazing in more ways than one. My Mum (Jan) arranged for all the grandchildren to release a white balloon each in honour of Bob.

What happened next was bizarre….

After we all released our balloons we counted them in the sky and watched them all float away together until they could no longer be seen.

We started playing tennis about 20 minutes later and were having some family fun when we all noticed one of the white balloons had returned and was floating around the backyard.

How could this be when all the balloons had literally travelled kilometres?

I don’t normally believe in ‘signs’ from above’ but it was certainly a magical moment that made our day😀

Secret Men’s Business…Uncovered

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Men’s Group brings me new challenges each week and I guess that is why I like it so much. I wanted to share another dynamic that comes with Men’s Group and that is ‘interacting new residents into a group’.

This week I had a new resident come and join us, his name is Harry and he is an absolute gentleman. He reminded me of my Dad in the way he dressed, and the way he communicated. I go and collect him from his room and introduce myself, and at this point I am rapidly assessing his capabilities. I shake hands with Harry and ask a few ‘safe’ but searching questions. I only have a few seconds to determine the following:

• Can he communicate ok?
• What is his level of cognition?
• Is he agitated or aggressive at all?
• Can he understand what I am saying to him?
• Does he have insight to where he is at with his dementia?
• Do I need to bring anything he might need or want? Eg a jacket or comfort item.

As I walked Harry over to the group we would talk casually about sports and his business life. Straight away he tells me is a member of a golf club. I then list off other sports and he said he used to play football. Instantly we have common ground and we are reminiscing. He is happy to be with me as the conversation is in ‘his world’.

I offer to play some indoor golf with him. He refuses and makes up an excuse. (This is common behaviour in a new group). I then set up the golf box and clubs and get Harry to help me carry the clubs. I set up balls on the ground and hand him a club, he once again refuses. I then realise that Harry recognises the game but is probably worried he will play it wrong or embarrass himself. I then arranged another resident to putt some balls in front of Harry so he can re-connect with the skills required.

I gently pass the club to Harry again and ask him “you sure you don’t want just one go?”. He refuses again politely and gives me an excuse. I then decide to start putting some balls into the golf box. Harry gets all excited when a ball goes in and he congratulates me. It happens again and he starts cheering and telling others. He is now engaged in the game. I then make an excuse to do something else and I ask Harry if he would mind holding the club while I attend to something else. (I have already laid out the balls on the floor). As I go to walk off I say to Harry “you may as well have a quick hit while you are there holding the club?”. He then putts and the ball goes in the hole. The group erupts and cheers. He putts again with same result. He is now on a ‘hat trick’ and once again he gets the ball in the hole. Everyone cheers , we make a huge fuss of Harry and feels part of the group.

As we were doing painting as well yesterday I tried to get Harry involved with this. Once again more refusals and excuses. We then agreed that he could just observe today so he politely agreed to sit at the table and chat with all of us. The conversations were fantastic and was a ‘huge win’ as even if the man does not do the activity we are interacting with each other and chatting about memories. The group also changes and becomes more interesting. I purposely placed paint and a brush in front of him should I get the chance to get him to try painting. I offered him the brush once again he refused. I have worked out that the key is to be side on to the men and act as casually as possible. My body language is always making the resident feel in charge and I am trying to be ‘one of the lads’. I then ask Harry if he could hold the box for me while I paint . He jumps at the chance to help me and does a great job of steadying the box. He compliments me on my painting skills and he has a smile on his face.

The message I wanted to share today was that in lifestyle activities it is possibly best not to give up when a resident rejects an activity. We need to delve into how they are feeling and determine why they are refusing. The key I have found is to be subtle and allow the resident to be in control. Almost tempt them into participating with strategically placed items and allow then to never fail. We need to set them up for success each and every time. Once again I am blown away with how people interact and engage. What an amazing classroom we have ?:)

‘Team DD’…Take a Bow!

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I just wanted to take this opportunity to thank all of our fabulous ‘DD’ members for your input, support and stories, and for just being an integral part of our amazing community.

The ‘magic’ of Dementia Downunder cannot happen without such a positive and supportive mindset, and without such a sincere and caring environment.

I often get asked what makes Dementia Downunder different?… I tell people that we are initiating conversations that were previously stigmatized, taboo or swept under the carpet. There are not many groups having the raw and sensitive conversations we have across such a diverse range of people, professions and sectors. We are also creating collaborative solutions to problems that have been around (and many ignored) for decades.

This myriad of perspectives, shared feelings, feedback and information is actually ‘bridging the gaps’ in our under-resourced health care/aged care systems. Our ‘people helping people’ philosophy continues to defy the odds when so many situations are ‘road-blocked’ due to lack of funding.

I also wanted to share that I am involved with some proactive working groups now that are making some big changes to the way we care for our older people, and those with dementia. I want to thank my mentors, close friends and associates (you all know who you are and I can’t name you all as I don’t want to miss anyone) who all have helped ‘Team DD’ make a difference.

Thank you!….

Dealing with Death & Dementia

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Hi Everyone,

Yesterday my uncle sadly passed away from Parkinson’s Disease. I wanted to share his family story because I feel that whilst their situation is unusual, it is not unique. I also believe we can learn some things in the process in how to handle grief.

My uncle and his wife live in a country based aged care facility in a double room. The complication is that my aunty has dementia (stage 4/5), and relied on her husband to do most of their ‘thinking and remembering’. My aunty was the ‘doer’ and did all the cooking, cleaning and almost everything else, so I guess they balanced each other out. As a couple they were inseparable. The other complication is all immediate family live interstate.


My initial concern was for the welfare of my aunty and how she will cope with the loss of her husband, how she will cope day to day and her overall well-being. I decided to reach out to our fabulous ‘dementia whisperers’ ( Jane Doolette and Sue-ellen Taormina) for some valuable advice and tips. I am sure they won’t mind me sharing these tips to our DD community as it certainly is a great learning opportunity that can help families.


**Please be aware there are many different ways to handle dementia and it really depends on the individual and where they are at with their dementia. Following are some great ideas to consider but seek further advice to tailor to your individual needs:


THE IMMEDIATE (Jane):


Your aunty needs to be validated that he is gone and allowed to cry if she is upset. She needs someone (that understands dementia) to sit with her and gently (re) tell her. She needs to be part of the arrangements, seek her ‘advice’ or approval on decisions made. It’s so easy for her to get lost in the busyness of arrangements and all the people involved.

If possible she needs to go to the funeral with someone who cares and loves her and hold her hand – probably it would be too overwhelming to go back to the ‘wake’ etc unless she wants and I’d suggest no longer than half an hour and then quietly take her home.


Make sure she had the funeral card with his photo on it (perhaps 2) so that it can be put on her bedside table and that she is allowed to talk about him. It’ll be hard immediately with the empty bed and perhaps the curtains around that bed could be pulled for scheduled parts of the day.


LATER ON (Jane):


I imagine she may get moved to a single room, hopefully it’d be after the funeral but I somehow doubt that. ($ and beds). When she moves it’s really important that the new room is set up as much as possible to a smaller version of what they shared.
If she has something of his (chair or something he cherished) have that in her new space. I think that it’s important over the next 6 weeks (somewhat is considered ‘normal’ grieving time) that this grieving rituals are acknowledged with and for her.
Follow her cues but if possible talk about him, people often think that those with dementia don’t grieve or miss.


Around that time, it’s time to move forward slightly- for example, move the funeral card from the bedside to on the wall so that he is remembered but add the happy photos of him, probably when they were younger.


If/when she asks where her husband is, it is advisable to say ‘he’s not here’ (Some staff may sometimes say that her husband has passed away, whilst factual may upset the person with dementia) and try to steer the conversation to the good times eg ‘john loved his golf didn’t he?….etc


THE IMMEDIATE (Sue-ellen):


There are a couple of ways to handle the death of a spouse depending on the stage of dementia! I think in the beginning we owe it to person with dementia to clarify if your aunt will respond better to the truth or whether it would be in her best interest to just offer lots of loving support and blitz her world with lots of visuals of her husband and constant reminisce.


Sometimes it is cruel to let the person with dementia relive the shock and pain of losing their spouse, if we remind them when they forget … having said that at a stage four using the same language ie when asked “where is my husband?” staff respond truthfully – but use the same words and offer physical comfort and reminisce to help her remember.


Putting a new resident in the room with her is not a good idea either … it will make her anxious. In the past I have told the person ‘the truth’ (about the death) and gauged their reaction and then set up the way to go forward based on that reaction.


LATER ON (Sue-ellen):


It goes without saying that ongoing care and emotional support is paramount. Keeping her busy will also help with the process so she does not miss his company so much.


She would have spent most of her time with him also so fostering new relationships will be important – maybe another lady with the same interest?


Getting lifestyle staff involved can also help your aunt feel valued and not so alone.
A reminisce Book is also a good tool to help your aunt remember good times.


*Thank you for these expert insights Sue-ellen and Jane and I really appreciate your input.

Special thoughts to all my extended family at this sad time

No-One Should Have No-One

Today the very ‘glamorous’ Linda Booth and Brett Partington presented at the Loneliness & Social Isolation Symposium at Morphettville Racecourse’s Phar Lap Room.

We both put ourselves out there once again with our ‘heart on our sleeve’ speaking styles. There was a big crowd of 160 very receptive people.

‘Blinged Up’ Linda Booth was the hit of the day with her generous offer to give out free hugs to everyone in the room. (with a gentle push from me and a very big cardboard sign)

Thanks to the very innovative and professional Judith Gooden for inviting us to present. It was a fabulous opportunity to promote the benefits of ‘Dementia Downunder’ and share our stories about dementia to reduce loneliness and social isolation.

Congratulations to all the other fabulous presenters who gave up their time to speak today.

Welcome to all the brand new members who have joined ‘DD’ today from the Symposium.

Overall – a great initiative from SA Collaborative Projects.

PS – Thank you Linda for allocating me to receive above the regulation amount of your famous hugs.

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Lights, Camera, Action…..Dementia!

Very pleased to assist Louise Heuzenroeder (PhD Candidate, UNSW, Alzheimer’s Australia Dementia Research Foundation Scholarship recipient) with a promotional video to support the Consumer Companion Guide to the Clinical Guidelines for People with Dementia.

An absolute mouthful to say, but in simple terms is a fantastic guide to help steer people through the difficult journey of dementia.

The guide is for people with dementia, family members & caregivers, and I highly recommend it.

It has relevant dementia information, which is simple and easy to read, and has contact numbers and resources listed for easy access.

Follow the link below to view a copy of the guide (it is also in the ‘DD’ Resources section on website).

http://sydney.edu.au/…/Alzheimer%20Guidline%20Guide%202017%…

I don’t believe we will be called up by Hollywood for our acting skills in the near future, but we gave it a crack and had a few laughs in the process. The Daschund pooch was in fact the star of the show! 🙂

Bravo to Louise, Dr Ron Sinclair & Ian Gladstone for their efforts in advocating for people with dementia.

bob

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Hospitals are Listening…Code Blacks

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Very pleased to announce that I had my ‘code black’ meeting with senior management at the RAH yesterday. To anyone new – a code black is when 4-6 security guards are called to restrain a patient.

I am really excited to report that out of everything that I have been involved with in the dementia space this was the most significant step forward and potentially the best opportunity for some serious change.

It was such a privilege to have a solid hour to share my EVERY thought I have had about the way people with dementia are cared for in our hospitals.

The good news is this information will be considered across the QEH and nRAH hospitals and some critical points may be weaved into training packages for nursing staff.

I actually spent literally 6-7 hours preparing for this meeting and collating all of your thoughts, ideas and feedback and presenting it to them in a single ‘easy to read’ document. This document contained your personal experiences, plus strategies and also a link to my presentation on acute care:

http://www.dementiadownunder.com/…/dementia-care-can-we-do…/

I learnt so much about hospital protocol, security team procedures and patient care in major hospitals. What has me so excited is that they were so willing to listen to our thoughts (DD Members)and were really appreciative to be able to get a rare snapshot and insight from the families of people with dementia who have received code blacks. I also passed on several personal stories that really hit home.

There has been some significant steps forward since Dad was in hospital and I can report that things are moving forward and changing.

Obviously not everything will be implemented but the families have been heard and our feedback will be given consideration where possible.

You can see below there were some serious topics discussed and I had the entire hour to myself and their full attention.

Some of the key areas that were discussed were:

• Communication flow between nursing staff and families (both ways)
• Value of involving family members, emotional impact and trauma to family members/carers when patient receives a code black, acknowledging family input and applying to the clinical process.
• Lack of knowledge for families when they enter the ED. Ways to improve this.
• ‘Dementia is different’- the patient often has no insight hence the focus of medical info gathering switches to the family. (is one of the few medical conditions that this occurs with)
• Enormous scale of people being admitted now and in future and how the hospitals need to adapt.
• Limiting the duress for families by allocating a team member to communicate progress and procedures. Selecting a key family member to obtain patient info, using the ‘Top 5’ approach to obtaining personal info on the patient, signage on the bed with key info eg family member names, pets etc…
• Use of the cognitive impairment identifier/symbol on bed to alert people that patient has cognitive impairment.
• attaching dementia related procedures to the identifier.
• Education of nursing staff in dementia / behaviours
• Handbooks for families
• Security Team protocol eg using a team leader (they wear a different colour shirt), verbally preparing families of potential code blacks, team huddles & handover prior to code black. Using less security members with dementia patients.
• Dementia training for guards, softer approaches to restraint, changing the uniforms of guards to be less confronting, limb restraint techniques and not throwing people to floor. staff protection and protocols.
• Nurse specials – having dementia knowledge
• Dementia champions allocated to wards,
• Muting of beeping machines in wards, use of a ‘noisebox’ under beds to change the overall sound environment
• single rooms versus wards advantages and disadvantages, gradual softer lighting that can be manually adapted to each patient,
• Adding a new emergency ‘code’ (eg code purple) specifically for cognitively impaired patients (this cannot happen, but the team huddles sort this problem)
• Ways to calm patient in ED before taking bloods thus limiting code blacks

A Strange Note…Some Bizarre (but meaningful) Words….Will This Mystery Ever Be Solved?

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I was rustling through my old jeans pocket recently and pulled out a wad of receipts and notes. I was checking them before throwing in the bin when I came across this most bizarre note . I am sharing this note as I am hoping someone in the ‘DD’ group who may have cared for my Dad in hospital or the Nursing Home may know something about this.

THE BASIC FACTS:

The letter is not in my Dad’s handwriting.
I have never seen that notepaper before
I have no re-collection of someone handing me the note

THE BIZARRE FACTS:

The sports listed are 100% correct
My name is mentioned twice
My age at the time was 100% correct.
I have a brother in Sydney as stated (but he couldn’t remember his name, but got the age correct)
Whilst many people know that I played footy in the hallways of the hospital and nursing home, only Dad would know they were drop kicks.
His brother’s name is David (Dad used to get names mixed up)
How did this note end up in my pocket?
It must be at least 6 months to a year or more old as Dad was not able to speak much

THE CONSPIRACY THEORY:

I am guessing that a carer or possibly a nurse (or maybe a distant friend) that doesn’t know Dad that well has written down a note dictated by him. i think this because they have written ‘Love David’ which is incorrect and I would assume a regular carer/nurse would have corrected that to Bob.

WHY THIS NOTE IS AMAZING TO ME?:

This note gives an incredible insight into the mind of someone with dementia. You can see that he is trying to say he does not have dementia and wants to prove it by stating facts that he has all his marbles. By listing random facts he is trying to give evidence of how clear his mind is. It displays the confusion and shows how he doesn’t know what dementia is, but he believes he doesn’t have it regardless. The random thoughts mentioned are all about dementia and family and he is thankful and wants to let us know he loves us.

Whilst this post is a bit ‘deep’ and ‘spooky’ it is a complete mystery to me, I thought it was worth a shot posting to see if anyone knows about it, or secondly believe that it was a letter dictated by Dad. Irrespective, I felt it was an amazing note worthy of sharing and once again we learn something more about people with dementia.