Category: Diary Blog

A Chair was Thrown!….This is What Happened Next

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I recently went back to Bob’s nursing home to collect some items when I found myself in the middle of a hostile situation with a resident. There were two carers, a nurse and several others ‘milling around’ a resident called Barney in one of the lounge areas.Unknowingly, I walked up to Barney and shook his hand as always, and said “good morning”.

Within seconds the registered nurse (RN) pulled me away and told me to be careful as Barney was outta control and had just thrown some chairs and had tossed a glass of water over a carer to ‘cleanse him of his evil’.
The nurse also informed me that Barney had recently smashed his own television in a rage by throwing something at it. I have always had a good rapport with Barney so I asked the nurse if she was ok if I tried to calm him? She said “no problem”.

Straight away I jumped on to Barney’s side and asked him if he could show me his new room. I felt he needed to be away from others, and the change of environment may de-escalate the situation. I took him by the hand and once in his room I asked if he would mind if we sat down together for a while? He was ok with this and then I asked him how he was feeling. Barney answered “I am frustrated”. This answer was pivotal as it told me where to start digging for clues as to why he was violent. I asked him “tell me what things are frustrating you?”. Barney replied “I do not trust those people, they have messed with the chemistry and composition of the food and the drinks, and they are evil”. He said ” The Japanese cannot be trusted and the women have the codes and they can still be easily broken”. Straight away I knew he was talking about wartime and breaking secret codes.

I then tried to soothe him by playing his favourite classical music in his room. He told me it was Bach and he enjoyed it very much. I started to dig for clues as to why he was upset, and asked him some more questions. He then said to me “I only trust one person in here , but I can’t tell you who it is, we only communicate by morse code”. I was starting to think he was having some real delerium issues at this point. Barney then asked me if he could have my hand?. He held my hand and with his thumb and started to pulse and tap my palm . What I then realized was that he was typing the international morse code signal for help….SOS! (I took this as him telling me that he trusts me).

I excused myself to go and talk to the nurse to see what the medication situation was with Barney. She advised that he was refusing all meds and no-one could get near him. I knew it was unconventional, but I asked if she wanted me to try and give him his medication? The nurse said “it’s worth a try”. I then grabbed two fresh cups and his tablet and headed for Barney’s room. He was dozing in his chair listening to the music. I poured myself some water from his jug and made sure he saw me swallow it. I then poured him a drink and re-assured him that “the water is fine and is ok to drink”. (he had told me previously that the food and drink was tampered with). Because I had Barney’s trust he drank his water,and when I asked him to place the tablet in his mouth and swallow… he happily did so. I was so pleased and was silently cheering to myself.

We then sat for a few more minutes listening to his music and just talked. I advised Barney I had to leave, but thanked him for the water and the chat and shook his hand. He held my hands tightly and just kept saying to me ‘thank you, thank you for visiting me and listening to me.”

What I learnt:

  • gain the trust of the resident first and then distract them
  • remove them from crowded areas (eg. away from who he is arguing with)
  • change the environment to a much calmer one (eg music)
  • spend 5 mins or so just listening to their story, the clues may emerge.
  • get into their head space, and understand how they are thinking at that very moment of time
  • be creative – think outside the square when trying to find solutions
  • dementia is about being flexible and changing things to suit the individual. (you cannot have a ‘one size fits all approach)
  • By spending a small amount of time listening to the resident can save hours of stress and bad behaviour which can impact on the entire nursing home.

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What I Have Learnt About Dementia Lately…

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Over the last few months I have been studying everything I can about dementia, and seeing things unfold each day as Dad’s disease progresses. Below are some random but important things that I have learnt recently.

• Teaching people about dementia is difficult – why?…because just when you learn how to do something, the disease progresses and you need to learn something else. Dementia is a moving target.
• Every person’s journey is completely different, which means that you can’t just use a few core care methods, you need to use the ones that suit that person.
• We are about to have a serious problem with our hospitals in Australia with many beds being taken up by the aged, and not enough beds.
• Dignity is really important for the person with dementia.
• There is not enough follow up of ‘side effects’ from medications prescribed by doctors. People are falling through the cracks.
• Carers should be involved in the follow up process as they are the ones who notice the subtle day to day changes after medications are prescribed.
• One care person doing the showering is better than 4 (this happened last week)
• Lewy Body dementia is often mis-diagnosed up to 80% of the time.
• There are many different types of care models eg person centred care, feelings matter most etc
• You can positively impact on a person with dementia within 30 seconds, you just need to know how.
• Hospital wards are very noisy places and not suitable for people with dementia.
• Caring or nursing someone with dementia without knowing the person’s history is setting yourself up for failure. Doing your homework will reduce a lot of anxiety for the person, the carer/nurse, and others nearby. It may even avoid you getting hit.
• Environment plays a huge impact on patient behaviour. We just moved Dad from the noisy Royal Adelaide Hospital (RAH) to the Repat Assessment Ward (8 bed facility) and the improvement in his demeanour is incredible. He is calmer, happier and has stopped the manic pacing that he has been doing for over a month.

Phew!…. Another Code Black Avoided

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I was walking into Ward R8 at the RAH when my mobile rang. It was the ward manager and she had bad news for me. I told her I was 5 metres  from where she was calling me from , so she hung up and came and spoke to me face to face. The very caring manager explained to me that Bob had been very agitated , refused all meds and grabbed the wrist of a nurse and hurt her. An intra muscular injection was called for and I gather a security team would be on stand-by. She was concerned about me seeing the trauma of the injection being administered, but I said I have seen it done enough to be fine. I asked the manager if I could have a try at giving the meds before they inject him, and she agreed.

I walked up to Dad carefully and gave him my normal happy greeting. He had the ‘evil stare’ he gets when agitated, and I reached for his hand to feel the tension. His hand was clammy and rigid and is a tell-tale sign of his mood and aggression level. We were surrounded by 4-5 nurses who were all trying to help the situation, but actually weren’t. Straight away I put myself in dad’s shoes…how is he feeling about the situation? To him it would look like another ‘code black’ was about to happen and he would be terrified.

I held his hand with a special grip that I learnt from an expert called Teepa Snow. It is used to comfort him, make him feel in control and give me protection against a possible hit. The grip worked well, I then directed Dad away from the crowd. Straight away I went onto his side of the situation and agreed with whatever he felt or said. Once I had distracted him and calmly spoke with him, I had his trust and he was compliant. As we did a lap of the hallway – I asked the nurses to prepare meds and water for me so I can give it to him smoothly. They handed me the cup and tablets on my next walk past, and I turned dad away from the nurses. I did my usual routine, placed the tablets in the palm of his hand, gestured with my hand to place them in his mouth and then gave him the water.

He complied instantly. The nurses were in shock as they had been trying for hours. The problem was they kept trying to give the meds to him by adding people, adding pressure and too much talk. He was confused, frustrated and also angry. I then decided to walk Dad up and down the hallways to get the medication to kick in quicker and also change the mood. More tablets were handed to me as I went past, and once again our medication routine worked a treat. After 20 minutes or so Dad’s hands loosened up, he started to smile and laugh and the incident was over. The manager ‘thanked me’ which was really nice of her.

Normally no-one would go near Dad after an agitated incident and a shower would be completely out of the question, as it is a potential hotspot. Something told me, that Dad may enjoy the water on his face if I can get him in the bathroom, and may keep him occupied. I usually start his routine by getting him to clean his teeth. If he doesn’t do it himself, I do it for him. He let me clean his teeth, so I knew we were a good chance of getting the showering done. The bathrooms in the RAH are horrendous. The shower is hand held (which means I can’t have both hands free), there are no shelves to put anything on and many people use the bathroom so they are not always clean. I asked a nurse to bring me 3 x towels and 2 x flannels asap.

You have to be extremely organised when showering, have everything on hand and be ahead of the game. I like to have a helper on the outside of the bathroom to pass me things as required.The nurse had walked off for some reason, and I was cross because I had forgotten the pull-up pants that were required.  I yelled out for someone to fetch them, which they eventually did. I was starting to sweat with the steam and the tension of the moment. It is critical that I am ready with his clothes the second he is dry. I throw them on him very fast as this is another guaranteed flash point for him. Even if he can’t get his arm in his shirt sleeve within 2 seconds, he may hit out. If you don’t get his pants and shirt on fast enough he may storm out of the bathroom naked and then you have a real problem.

Amazingly I showered Dad faster than normal and had him clean and dressed within 15 minutes. The nurses were staggered with the change in his behaviour and also the fact he was showered so quickly. The reason why I was able to turn things around is I understand dementia, I know Dad’s body language back to front and also he is familiar with me. It is hard for the nurse special as most are not dementia trained and are ‘going in cold’ with no idea of what Dad is capable of and what may set him off. By simply trying to assist to take his pants off he may firmly grab your wrist or hit you. I like to let him take his own pants off always (would you like your pants pulled down for you?). If he won’t take them off I may wet his pants with the shower head and they become heavy and he then naturally removes them. You need to think outside the square with dementia.

Dad’s dressing gown cord was missing and he started to tug at the front as he felt exposed and I could tell it was annoying him. I believe he would fiddle with it all day as it kept opening, which is an unnecessary stress. I then decided if we can’t find his cord , I will make one. I asked for some scissors and made  a belt from two pieces of material. I wrapped him up like a big present and he was then happy. His mood was now jovial and relaxed and everything was sorted. It was a great lesson for the nurses, to show them that dementia can be turned around without drastic measures if you know what to do. Thank goodness they rang me before calling the ‘code black’.

How Cute Is This?

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Bob has always been a very kind person, and during one of his stays in hospital (2014) was no exception. He loved all the attention he received from all the staff and he wanted to give a donation to the hospital to thank them. He asked the nurse for an envelope, he spent a lot of time trying to write the details on the front. He then paid the hospital in the only currency he had available to him…plastic counters!

It is the thought that counts:-)

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Look What I Found When Packing Up My Dad’s Room….

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This small notebook and the sentence Bob wrote on it (many months ago) may appear insignificant to most people.

What I worked out was that Dad was trying to teach himself to spell the word ‘WORLD’ backwards.

Why?

This is because it is one of the main questions asked regularly by doctors to determine whether a person has Alzheimer’s Disease.

*note – there are a series of criteria considered before a diagnosis can be determined.

Nevertheless, A fabulous insight into the personal thoughts of someone with dementia.

Well done Dad!

‘Seize the Day’ – A Song of Hope

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I wanted to share this personal song as I wrote it for one of my closest friends (Steve Maslin) who was battling with cancer at the time. He played this song every morning in the hospital as a reminder to get up each morning and never give up.

Now my Dad is in a similar position (with a different disease – Alzheimer’s) I wanted to hear the song again and thought many of you may connect with it.

This song was written & acoustically performed by my former band ‘The Handsome Devils’ with Annie Riggs on vocals (lyrics – B.Partington). Steve unfortunately passed away from bowel cancer several years ago.

*JOIN the ‘Dementia Downunder’ Facebook Support Group

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Looking for fast facts about Alzheimer’s Disease and other related dementias? Just had a friend or family member diagnosed with dementia and want to be ‘cut to the chase’? Are you are a nurse or carer looking for dementia related information in a simple and easy to understand format?

The ‘DEMENTIA DOWNUNDER’ Facebook Support Group has been created to pass on useful tips and ideas, and is a positive place to share information about dementia.

Everyone is welcome and we have a very supportive group of people sharing their personal stories. We have nurses, carers, family members and also people with dementia all joining in the conversation. Click on the link below for a fast and simple way to learn about caring for someone with dementia and supporting their family and carers.

https://www.facebook.com/groups/417443648442828/

 

The Dementia Rollercoaster – Who’s With Me?

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The Dementia Rollercoaster is certainly not one for the faint hearted. Sometimes it’s scary, sometimes it’s not that bad. You never know what’s around the corner unless you ride it regularly. The more you take on the twists and turns the better you get at handling them. There are times of exhilaration and absolute joy but can soon be followed by terror and breathtaking moments.

Everyone is scared of a new rollercoaster, as fear of the unknown is a powerful concept. You will be proud that you had the courage to get on board, and feel good that you have made a difference to someone else.

What I have learnt over the last few years is that on the Dementia Rollercoaster you just need to strap in, hang on, and do the best you can. When you get time for a breather, tell others about your experience so they won’t be as scared.

The Dementia Rollercoaster is open to all riders, does not discriminate and the queues are getting longer each day. (Written by Brett Partington)

Xmas in Hospital – 2015

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These images highlight a very special Xmas and really capture life in Ward R8. Believe it or not, the 90 minutes spent with Dad was the highlight of Xmas for me and I want to share it with you to show you how little things count . My son Zak and I went into visit Dad in hospital before we had our traditional Xmas lunch at my sister’s house with our extended family (which was fabulous).

We turned up to the ward to find Dad slumped in a chair in the hallway flanked by his nurse. He was heavily medicated and could not lift his head at all so we decided to sit on the floor so he could see us. Surprisingly he remembered how to open a present, to reveal a brand new Port Power cap.

Dad then stood up and did some more laps of the ward with 3 of us in tow.He was groggy and slightly agitated. We had been unable to shower him for several days as he would lash out whenever we attempted. Today was different though – when I asked him to clean his teeth and have a shower I could tell his body language was in ‘auto pilot’. This meant I had a ‘window of opportunity’ to get him in the shower and the chance to get him back to a respectable condition that would make him look and feel comfortable. This was the ultimate goal for me today.

In the bathroom we worked as a team with Zak and Rashmi (nurse) running towels, toiletries and clothes into me so fast I could hardly keep up. Being organised and fast in the bathroom is something you need to master when caring for someone with dementia. What often happens is Dad may walk out of the bathroom at any moment (whether dressed or not) creating an undignified scene for other patients etc…I was totally soaked by the shower, but I couldn’t care less. To watch him just enjoy the warm water pouring on his face was another highlight as he had some relief from his frustrations for those few seconds.He became increasingly agitated as I put his shirt on and missed the armhole on the first attempt (you only get a couple of shots before he lashes out). He was so confused he tried to hit me away and actually hit himself in his own leg (thinking it was mine).

Today was special…We had success! He was showered,with new clothes on, and even let me shave him. Who would have thought something as simple as giving Dad a shower would give me such pleasure? In Dementia World we celebrate ‘small wins’ and today was no exception.

Merry Xmas Dad……

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A Fortnight in the RAH (part 2)

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Our 3rd time in the RAH and it is business as usual for us. Bob continues to have a nurse special following him 24 hours/7 days per week. Bob is more agitated this time round and the tasks we performed last time are now too difficult to manage. Showering Bob is almost impossible. Every time we would steer him into the bathroom he would walk out (and sometimes naked). This is embarrassing for all concerned as staff race to find things to cover him up. Unfortunately he will no longer just put clothes on when asked. The dynamic has changed and Bob is now in control.

What I mean by this is that if for example we try to take his shoes off, he may hit, become agitated or walk off. Bob dictates what is happening next and the control we had before is no more. This means we can no longer shower Bob everyday – we do it when we see a window of opportunity. If he is calm and starts to unbutton his pajama shirt we dive for the towel and toiletries bag. The little showering routines no longer work. I used to get Bob to clean his teeth and straight after have his shower.  Now I am lucky if I can clean his teeth at all.

This means we ‘have a new normal’. The hygiene and dressing standards we  have steadfastly maintained can no longer be reached. Bob may be smellier than normal, but it won’t harm him, and that is all that matters. By having a new environment makes caring so much harder. Things get lost, items fall, and the experience becomes a lot more stressful for the person with dementia and the carers. The nurse special follows Bob everywhere he goes and they are not allowed to lose sight of him. This means there are extra people in his room and constant conversations about him which I am sure he can detect. We are talking in front of Bob now as we can’t maintain that dignity as we are on constant alert in his presence, and do not have the luxury of walking to somewhere private to talk.We are finely tuned and constantly ready for a sign of his current mood and are also wary of any hostile move he may make.

Bob’s hands and eyes are the gateway to where he is at. When his hands are soft and floppy he is calm and relaxed. If his hands become rigid and stiff and his handshakes become too firm, we all know this is an indicator that his mood is escalating. When this happens we call for a PRN (extra medication) as we have a very small window of opportunity (4-5 mins) to get the meds into him in a compliant manner. If we miss this chance, Bob will escalate and hit out and yell verbal rants along the ward. This behaviour is confronting, embarrassing and sad in many ways. Bob’s eyes also become very dark and cold when he is agitated. He will look at people with an evil stare and shake his head in disgust. If he swears in general we know things re about to get out of control.

As a family we maintained a constant vigil in the hospitals and nursing home to try and keep Bob as calm as possible and de-escalate any behaviours to avoid any hitting out or code blacks. We are scared that he will be sent to  mental health institution due to the violent behaviour and every time he gets a strike on his medical records, this brings him closer to being placed in a mental health facility. Doctors have told us that Bob would have been transferred a year ago if not for our efforts to calm him, look after his daily needs and our commitment to protect the care staff and nursing staff.

Bob’s behaviours are different this time in that he no longer engages in any activities at all and is constantly on the move. he will pace up and down the ward’s main hallway hundreds of times per day with nurse special in tow trying to stop him entering rooms, annoying others and keeping him safe. Following him all day is extremely taxing and mind numbing stuff, but has to be done. He will yell out wit no notice and this usually makes the ward ‘freeze’ and everyone stares as we try and deal with our next outburst. The environment aon the ward could not be any worse for someone with dementia. It is loud, busy and confusing. Buzzers and machines are constantly beeping, people are always talking and there is just so many people rushing past each other as they try to work in unsuitable conditions. The hospital is in terrible condition and has practically been untouched for 30 years.

The nurses have all experienced the ‘wrist grabs’ and overly hard handshakes. It is no wonder some of them ‘flich’ when Bob makes a sudden move. If they become scared it is very obvious to Bob and he seems to react accordingly and continue the behaviour. We try and teach the nurses what signs to look for and what to do if agitation occurs. I have a pre-written list of instructions placed in the front of his notes to act as a quick reference to ensure the nurses are up to speed. I often stand in front of Bob to stop him entering rooms. This can be confronting but I have few other ways of turning him around. Today he gave me a ‘warning punch’ in the stomach to let me know he was not happy and there is going to be trouble if I keep stopping him from going places.