Author: Brett

Footy is sometimes a man’s best friend

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This $10 football is our most prized possession with our dementia journey.

The footy has been with us every step of the way and has several extremely important roles.

1. Comfort – The ball is soft and furry so is a little bit like a teddy bear (a macho version). When Dad was outta control on the anti psychotic drugs it gave him something to hold. It came with us in the ambulances and gave us a lead-in as a talking point to distract him when required. eg “so who were the best/dirtiest, Port Adelaide players?”.

2. Exercise – We kick this ball thousands of times up and down the hallways of wherever Dad is at (hospital or nursing home). It keeps him active and is the only activity that really engages him. His speech is not good and he will not sit still with a single activity.

3. Mood Tester – When I throw or kick him the ball first thing in the morning it gives me an indication as to where his mood or agitation level is at. If he kicks it really hard at me or throws it at my head, I know I am in for a tough day. It is at this point where I determine whether extra medication is required or how much longer we wait for meds to take effect.

4. Social Tool – By having the ball we have a way of engaging other residents to play the game and interacting. I can have up to 5-6 residents throwing the ball at one time to each other and they love it. The residents always get a laugh when someone gets hit in the head when not ready (falcon!)

5. Stress Ball – I use it when I am thinking how to handle a situation or determining what to do next. I kick it around for hours which amuses me during the stressful lonely times on the ward.

*Every person with dementia should have a ‘comfort item’. This may be a favourite doll or teddy bear, a photo or some memorabilia. Carers should be aware of what this comfort item is so it can be engaged if required.

Global Action Against Dementia (My First Presentation) – Alzheimer’s Australia

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This video is my first presentation on dementia for Alzheimer’s Australia. I give a ‘warts ‘n’all’ account of our journey with dementia. It is graphic & confronting, but it had to be said. I was ‘completely cooked’  after the presentation. I was also involved in a panel discussion with Gill Ayling (Dementia Champion – UK), Ian Gladstone & Tim Wallace. My speech starts at the 16.35 min mark.

*Thanks to Alzheimers Australia SA for the opportunity to tell my story at this event.

 

Dementia caring is like being a police negotiator

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Had to talk down an angry ‘almost naked’ male resident in the nursing home today, and I felt like a police negotiator. The resident had accidentally wet both himself and the floor in his room. With dementia the resident sometimes blames somebody else for the mess, and on this occasion he absolutely believed in his mind that an intruder had entered his room and left a puddle on the floor. He was threatening and bullying the nurse and care staff and wanted the person to be tracked down and found, and be punished for what they did. The care staff kept putting the resident back in his room, but this only reignited his anger when he saw the puddle.

I decided to step in and convinced the resident that I would help him.I felt that I needed to get him dressed first and realized very quickly that going back in his room (the scene of the crime) only enraged him further. I acknowledged his concerns, and told him that the perpetrator will be brought to justice 🙂

I remembered some negotiating tips from the movie ‘The Negotiator’ where you have to keep the person totally happy and never disagree with them. You have to stay positive and let the person think they are in control of the situation.  I looked him right in the eye and gained his trust and he began to calm down and thanked me for my help. I knew I had to remove him from the environment, but I had to make him decent first:).  I put some pants, socks and shoes on him then encouraged him to go for a walk with me.

It was really interesting to watch his demeanor change and his anger disappear. we sat in another area of the ward and I distracted him with conversation about good times in his past.

He had given himself a headache, so I offered to fetch him a glass of water and encouraged him to have a rest in the chair. He then fell asleep as he was so exhausted.

The next move was to get his room cleaned and tidied up ready for his return. Another carer was not happy that this resident had not had his shower. In my opinion he was not going to willingly have a shower in his aggressive state of mind anyway, so does it really matter that he misses one day?  He could be showered later on if need be was my thought.

I declared to management that I possibly breached a rule, and suspected I would be on report. I was so pleased that management agreed with my call and said the resident’s happiness and resulting behaviour is paramount. Phew!

What this incident taught me was that sometimes you need to bend the rules to make the right ‘person centred’ decision. If at the end of the day you have acted in a way that benefits the resident’s well being and retained their dignity (and made a safer environment for all) then I am happy to go on report!

hmmm….now where did I leave my bulletproof vest?..lol

Do Yourself a Favour – Start a Dementia Diary

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One thing I can recommend to anyone who thinks they may have dementia (or who has a loved one showing symptoms) is to write a detailed diary ASAP.

Mum wrote a diary for Dad from the first few months he displayed memory loss. We have gone back to the notes in that diary hundreds of times. Every time you see a doctor, deal with nurses ambos, physicians, pharmacists or nursing home staff there are always questions about medical history.

To have the entire story on hand can be extremely beneficial and save a lot of time and memory power. Write down all the medications, the doses and the reasons why they are diagnosed. Document behaviours and anything unusual.

With dementia you end up having to almost take control of the medications as much of what is prescribed is based on information provided by family members.

The Story of Ralph

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Ralph is a farmer. He was involved in agriculture at the highest level. He now has late stage dementia, schizophrenia, has tremors and hot sweats and uses a walking frame to shuffle around. He eats pureed food and drinks out of a feeder cup(cup with built in straw) He is also forced to wear a degrading bib most of the day.

Ralph would be wheeled into Men’s Group each Thursday and he would watch the other residents participate in games and activities. Ralph was a person that I personally found confronting. He grunted and would shake or nod his head to communicate and he was in a very sad state within his world between that walking frame. I must say I tended to ignore Ralph originally as he was in the “too hard basket” for me. I was inexperienced with dementia and I treated him like the rest of society would, I ignored him. I would say “hello Ralph” which was my token effort then I would spend the rest of the time with the other residents (which I am not proud of).

I watched other carers wheel him in each week, give him a cordial and then just clean up his front from time to time. I was more comfortable working with the other residents who could communicate better and were more agile. I started to review the group each week and I suddenly realised that Ralph was not actually participating at all. He was simply being pushed into position then pushed back to his room.

As the weeks went on we did less and less for Ralph and we did not even ask him to participate as we assumed he couldn’t or wouldn’t. This was a very big mistake and this poor man was being lost to the system, and I was letting it happen.

I then put myself in his shoes and saw life from Ralph’s angle. I imagine he would feel lonely, ignored, helpless, pitied, frustrated, not valued, and just plain sad. I was now on a mission to get Ralph in the game.

The following week we played indoor carpet bowls and I needed to work out how Ralph can play the game if he is seated and has limited hand movement. I found a pvc pipe and laid it on his chest and placed a ball in his curled up shaking hand which had several fingers missing as well. He slowly placed the ball in the top of the pipe and released it. The excited look on his face when he let that ball go was priceless. I changed as a person in that split second.

Ralph was now ‘in the game…and in the moment”. We loaded him up again and gave him extra shots almost out of guilt to make up for all the weeks he was ignored.

He became really animated and excited. The fact he was using a very straight piece of pipe not only got him in the game, it also allowed him to win every game….he never missed. This would then upset the other residents and 94 yo ‘Feisty Fred’ would fire up by saying “it’s cheating using that bloody thing!”.

From that moment on I vowed to myself that we will not be playing another activity with this group unless Ralph is actively involved. Over the next 4 weeks I came up with 4 more games that could be played in a seated position. Ralph would now eagerly wait for his turn and try really hard to win the game. What was really special was that Ralph had never previously engaged with any other resident in the nursing home. He now began to shakily applaud them when they did a good shot. This is engagement!

What Ralph taught me was that everyone has something to offer, but they just have to be given the opportunity. As carers we need to embrace the challenge to care for someone that may be difficult, and not take the easy road. As a community we need to reach out to people like Ralph, try harder and not give up on them

Anti-psychotic drugs – Proceed with Caution!

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It is long overdue that someone challenges the potential misuse of anti psychotic drugs with people with dementia. We have 340,000 people in Australia diagnosed with dementia in Australia and I have seen first-hand the turmoil they can cause if unchecked.

My Dad was prescribed an anti-psychotic that turned him from a generally happy, mellow person with memory loss and some occasional tears, into a raging bull with paranoia and hallucinations. This then resulted in 6 weeks in a locked ward in the RAH involving security teams on multiple occasions. We were told most people benefit from the drug, but 1 in 20 people have adverse reactions. I suspect this figure is much higher and many cases would go unreported. After insisting the drug be ceased, the behaviours and side effects reduced dramatically.

My concern is that there are several ‘go-to’ drugs on the market that are regularly prescribed without adequate follow up to determine the impact they have on the individual. Family members of people with dementia place complete trust in doctors to offer the best advice, or their ‘best guess’ to combat the behaviours and side effects associated with the disease. Dementia is an extremely complex and difficult progressive disease that has over 100 different types with varying symptoms, and we are in fact asking for a guess, as each case is different … This is dementia.

This blog is not intended to disrespect our doctors in anyway but moreso highlight the shortfalls in the current methods. The medical ‘follow up’ on patients is often reliant on a family member to try and express what they have seen (or heard from care staff) to the doctor in a 15 minute appointment and expect the doctor to make a call on potentially misguided or flawed information. If the patient resides in an aged care home the family will know very little. The family may not be educated in dementia and not know what to look for. Is every carer fully trained in dementia? If a carer unknowingly exaggerates or misinterprets a behavioural incident, the pending decisions may be the wrong ones.

If a resident grabs a carer’s arm is that agitation, aggression, violence or assault? I have personally seen all four words used for similar incidents. My concern is the consequences can potentially be disastrous for the person with dementia. If the relatives have minimal or no involvement with the resident they are at the mercy of the system, and may unnecessarily end up in a mental health facility.

I believe a pre-determined regular follow up after an anti psychotic medication is prescribed is the key. This could potentially reduce the behavioural incidents, which in turn relieves the pressure on the services and the health system overall. I believe the doctors need to directly contact the care staff, as they witness the changes in behaviours and reactions on a daily basis. The registered nurses administer the medications, but it is the front line staff that will be critical in the follow up reporting in conjunction with the nursing staff.

Every case is different and to change our healthcare methods that are well entrenched is not easy. It surely must be worthy of consideration in 2015 and beyond?

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When a Crying Crowd is a Compliment

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Just wanted to share a recent public speaking experience that took me by surprise.

I delivered my first speech for Alzheimer’s Australia yesterday and was blown away by the reaction. Being on stage with one of the leading international dementia speakers in the world on her Australian tour was simply awesome. Gill Ayling (also known as the ‘Grand Poobah’ of Dementia) was simply a nice person who is ‘pint sized’ but making global change in the dementia world.

Prior to the event starting I was sitting on stage chatting to another speaker called Ian who gave me some speaking advice. He said ” When you get up to speak, you are in charge”. He is a former Police Sergeant who now has dementia and has been presenting for years for Alzheimers Australia. I found his advice very ‘copper like’, and too forceful for my speaking style, but I took it on board regardless.

I was extremely nervous beforehand (after some recent shaky and forgettable public talks), and simply could not settle beforehand. I guzzled a litre bottle of water prior to the gig, and I was pacing as per usual, but in my head this was my ‘Grand Final’ and I had to deliver.

But in some ways this speech was different….

I stopped worrying about remembering the words and just spoke from the heart and let the passion take over.

The video cameras and microphones felt like they were everywhere, but there were only three. Even after 30 years of being on stage in bands, some things are still intimidating, but eventually they seemed to disappear into the background.

I wanted to take the audience on our journey with dementia and have them feel like they were in the room with me when I relived challenging times.

The audience laughed, cried, and even became angry….but in a good way. The energy in the room was silent, but intense..also in a good way.

The mood kept shifting as I changed topics, yet I felt they were on my side.

It didn’t matter that it wasn’t the most polished speech, but the raw emotion and passion cut through and the words came. (phew) This speech was therapeutic for me and was a release of 3 years of life changing material, uncorked!.

It was a strange feeling when I got angry on stage and explained some of the rough treatment Dad received on his journey. The crowd concurred and applauded mid speech. ( I was gobsmacked)

I could see shiny eyes on me which is a strange feeling when you have no idea who is judging you. Is weird to bare your soul in front of strangers but it certainly stirs the adrenaline.

When I sat down ‘completely cooked’ , Ian leaned over to me and said ” You just owned the room my friend”

….Mind blown! ( and humbled)

After the panel speech I met a few emotional ladies. As I shook their hands to meet them and hear their stories, I handed them a tissue from a conveniently placed tissue-box on stage. ( this must happen often at these events!:-))

It was awesome to receive positive emails, facebook posts and phonecalls ( plus a free lunch:-)) after the event.

A tough rollercoaster experience but a solid platform to build on.

My mission has only just started…

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First Speech to 35 Home Carers

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Had my first dementia speech ( as a carer) this afternoon with this fantastic group of carers. They were a great audience who gave me some real perspective on how difficult their roles can be. Carers that help out families at home are at a great disadvantage as they do have the support of a registered nurse on hand, they have very little idea on what medications are being taken (if taken at all). There is also the family dynamic that comes into play where the son or daughter or spouse may want certain instructions carried out, and the person with dementia may have different ideas.

It was awesome to tell “My Story” to a really engaged group. Hopefully the word spreads about ‘Dementia Downunder’ and people can interact and learn from each other.

A very touching speech was delivered by Don ( the Director of FHSS) about his times spent with Dad ( Bob). It was fabulous to hear the positive effect Dad has on all around him and I was humbled by Don’s kind words.

A great experience , and I hope to present to them again one day with more tips on dementia. Next time I look forward to hearing their stories and working on some positive solutions.