Category: Diary Blog

Ashlee – Another Great Nurse at the RAH

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When Dad first went into the RAH we knew nothing about dementia and Ashlee was one of the first nurses to help settle Dad into Ward S8/Q8. What was unique about Ashlee was that she created a connection with Dad really quickly and gave us confidence in her care, and she taught us about handling dementia.

We used to bombard Ashlee with 100 questions every time we walked into the ward and we always received a friendly greeting and she would always fully brief us on Dad’s progress. As family members we are constantly hanging off every word the nurses tell us, as it was important for us to report any changes to Docs and Psychiatrists etc.

Ashlee exudes a quiet confidence and makes you feel like “everything will be ok on her shift”. This was very comforting for our family as we battled with some pretty bad behaviours and incidents. we were exhausted and could go home knowing that Dad was being well looked after.

12 months later when we had to return to the RAH in identical circumstances, the first person we saw in the ward was Ashlee, and she remembered Bob’s name, (and our entire family after all that time). Ashlee remembered Dad’s condition and methods to keep him calm and was able to handle him with ease.

So welcome to ‘Dementia Downunder’ Ashlee and on behalf of our family I want to say “Thank you for looking after us”….Take a bow! (centre in pic)

Where Were These results When I Needed Them?

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I failed my matric (year 12) at high school – where the hell were we these results when I needed them??? I could rarely ‘remember anything’ when I did exams etc….(how ironic is that?).

Is amazing when you are passionate and driven by something, the information sticks!:

I felt I should post my results now cos I have never received 100% for anything before and I don’t want to make a mistake and ruin my report card:)

I can really recommend the course I am doing to anyone wanting to understand dementia. It is only 12 weeks (snapshot of the diploma and bachelor of dementia)

‘Dignity in Care’ Champion Award 2015 Nomination

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  • Dignity in Care Certificate

I recently went to a forum on dementia at Glenelg Football Club. I was inspired by a speaker who was really passionate about making change in the dementia field, Dr Faizal Ibrahim. I went up to him after his speech and told him that I want to be the person leading the charge to make some change. He instantly connected me with the Hospital Research Fund for an interview for an upcoming article and donation drive. He also checked out my website blog and Facebook support group and after reading about my story kindly nominated me for a dignity in care award.

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