A Fortnight in the RAH (Part 1)

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Bob spent his first week back at the RAH in Ward R8 and it has been a nightmare. This ward is not a geriatric ward and is more general, but is still a locked ward. It has women only rooms and there is a constant beeping as machines monitor the patients and the nurse call bells keep being pressed. There is a constant hustle and bustle in the ward with people always in the main hallway as doctors, therapists, nurses and administrators cram into tiny bays to document the medical changes with each patient. I do not know how the medical team can think as they have up to 10 people in a bay/station in a space that is only 4 metres long and 2m wide. I can see how information would get lost and how mistakes could be made as the environment is often one of disruption and sometimes chaos.

The conversations between people are very public as they have to be had in the main hallway. There are sometimes patients in beds actually in the hallway due to overcrowding. The nurses set up a temporary screen to try and give the patient some privacy, but it is so public and so undignified. The patient is also not safe as wandering patients can grab at the person in the bed and are almost tempting for the mental health patients. As I am a people watcher, I quickly sum up the situation with many patients and work out the routines and personalities of the nursing and medical teams. I usually find out who is in charge (ward manager), introduce myself and then give them the lowdown and caring tips for Bob.

The doctors usually do their ward rounds between 8am and 12 noon. We are often desperate to to catch the doctors, but it is a frustrating wait as they usually come past us at 11.45 at the end of the round. We anxiously wait for hours and often miss them when we have a coffee break or toilet stop. I tend to stand outside the locked doors as I can see all 3 locked wards from this vantage point (R8, S8 and Q8). I look to see when our doctor has entered a ward and can estimate when they may reach us. This time round we were desperate to speak with the doctor to tell our latest story but have a much more low key approach this time as we know we have limited options and ‘saving’ Bob is not an option, this time we are managing him.

The hospital facilities are really run down and no money is being spent on maintaining them. The side rooms are better than a ward, but the setup within them makes for a very frustrating stay. The super thin single cupboard has no hanging rail so all the clothes are piled up on the bottom shelf. Every time you open the cupboard the contents have to be collected off the floor. The window ledges are too narrow and the same problem happens. There are no shelves anywhere and the ledges over the sinks are so thin your toiletries bag usually ends up in the sink. Some small carpentry work could alleviate the problems. I understand the new RAH room will be like hotel rooms, however we have a long way to go before then and some maintenance is long overdue. We don’t care what the rooms look like, but they have to be functional and more shelving would eliminate much frustration as we often have to work fast to grab clothes, pull-ups, towels, cups etc very quickly due to Bob’s behaviours. Shower heads are hand held and will not stay on the wall which means you have to shower the person one-handed, which is extremely difficult. We are trying to protect ourselves at the same time and the setup is simply not suitable.

Bob is now probably the most difficult patient in the ward as he is mobile 95% of the time and will not engage in any activity for longer than a minute. This means he is in the main hallway day and night and often tempted to enter the wards. Bob heads for the locked glass doors every 10 minutes and shakes at them and tries to find a way out of the hospital. The doors were recently fixed but are now once again broken as Bob had ripped the doors apart in a rage and damaged the closing mechanism. Bob has been allocated a ‘nurse special’  24 hours per day (refer ‘nurse special’ post). They follow him for 8 hours at a time and try and interact with him and keep him out of trouble.

Due to the decline of Dad’s brain his behaviour is nothing short of unpredictable and violent. I do not use the word violent lightly, but is the most accurate description this time round. He will lash out at whoever is in reach when his behaviours escalate and he is in need of medication to de-escalate them. We have timed the meds effectiveness and it takes 45 mins for the prescribed meds to take effect. This means the staff have to identify agitation early and get the meds into Dad before the ‘window of opportunity’ closes and he is too wound up to take them orally. Once the meds are in we have to distract him until they begin to take effect. This is a various tense time and we are all looking for signs of de-escalation. Extra staff tend to be drawn into the situation as Bob becomes verbally aggressive and yells out and hits out at people and the equipment.

Bob engages most people as he walks past them and often grabs at them. This is confronting for all and difficult to handle. His brain decline is at a stage where previous calming strategies no longer work, and he has very little reasoning. This means that changing his pants could take multiple attempts across 3-4 hours and we may not have any success at all. Showers used to be done daily in the nursing home by family members, however we now can rarely get Bob calm enough to have a shower in the hospital. We continue to attempt, but often his behaviour dictates how this goes. Nurses tell us patients from other cultures may not wash for weeks, but we continue to attempt each day regardless.

 

 

 

 

 

The Glover Family – A Personal Story of Dementia

The Glover Family are an amazing country family from Port Lincoln, SA. Their story is very important to me as when I heard them speak it was the first time I realized where we had been with our own personal dementia journey. It was surreal as I sat there by myself and just soaked up every word and could relate to their struggles as we had already been there. I had been so busy caring for Dad that I never stopped to breathe and grieve. Even though Dad is still with us we have lost many parts of the wonderful man that he was. Thank you to the Glover Family for giving me one hour of reflection that was a really pivotal part of my personal rollercoaster.

Robin is a real farmer type that had been used to running the family farm and was a local sporting hero. He tells of his struggle with having to be cared for and the withdrawal of his capacity as the ‘main man’ on the farm as well as his personal thoughts on how he is coping.

Valda is the backbone of the caring and is a true country wife who has added her dementia caring to her long list of volunteer community roles. Valda is the facilitator of the ‘Memory Lane’ support group. Valda shares the hard times and dementia topics that are often not talked about.

Deborah presents a very emotional account of how dementia has impacted on her family and the struggles she has to deal with as a daughter of someone with dementia.

 

“We are outta control!” – Call the Extended Care Paramedic

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As part of our ’emergency plan’ with the nursing home it was recently decided to request an extended care paramedic if Bob ever displayed behaviours that the nursing staff could not control. This was instead of an ambulance to avoid him being sent to the hospital emergency department (ED). Little did we know that two days later Bob became violent and we needed to execute our plan.

Bob became increasingly agitated and started to grab at Mum (Jan) and myself. He became really loud and would shout out verbal rants. He then started pacing and pointing out residents and carers with an evil stare. Jan kept going into his personal space to try and calm him but she was placing herself in serious danger. I couldn’t protect her if she was between myself and Bob. It was her instinct to be the one to try and calm him at close range and was extremely brave. Bob grabbed at her and would reach for her wrists and try and wrench her arm. I jumped in to make him release his grip and he then turned on me as well. He had lost perspective that we were family and he was so frightened that he thought everyone was the enemy.

I tried to get in between Jan and Bob at every opportunity, but Jan kept walking into more trouble. I yelled at her to get out of the room so she went to grab her her bag, but turned her back on Bob. This was really bad news as he came up behind her and grabbed her again.

We spilled out into the hallways and residents were still walking around near me. I pleaded for the care staff to put them behind the fire doors, but it didn’t happen. I was so scared Bob would attack a resident I had to walk backwards in front of him and keep myself between him and the resident. This happened on at least 5 occasions and I was really getting angry that the residents welfare was not top priority. I can understand everyone was frightened, but these people are frail and can fall really easily.

The nursing home staff rang 000 and asked for the Extended Care Paramedic (ECP). We were sent a lady called Mary who was fabulous. The role she played was pivotal when Dad became violent. While I was trying to de-escalate Bob, she came in and spoke with the Registered Nurse (RN) & Carers on site. She was informed of meds administered, behaviours/triggers and briefed on the situation, so when she joined me she was fully aware on the best way to handle things.

‘Ambo Annie’ then came into the room and spoke with myself and Bob and assessed the situation. It was amazing to watch her work as she was running two mobile phones simultaneously and patched me through to two of the leading experts in dementia behaviours. DBMAS (via Alzheimers Australia) & The Rapid Access Medical Service (via Older Person’s Mental Health OPMHS) . Having this level of support and expertise was invaluable.

In the heat of the battle ‘Ambo Annie’ would talk on my behalf to one service and hand me the other phone so I could talk with the other service. My role was keep the residents safe and also Bob. Mary knew where the situation was heading and was able to setup all the information and services I needed while I grappled with Bob. This way I had someone in my ear trying to help me control Bob’s behaviour and the other one was giving me advice on whether to go to hospital, determine which hospital would be best, and all the outcomes that will occur. The scene was not unlike a hostage/terrorist situation and was extremely ‘amped up’. As I was the person who knew Bob’s behaviour the most I was ultimately in charge by default, and was a completely surreal situation as I had to make the decisions on the run.

Eventually we decided we were “outta control” and had to get Bob to the hospital. Mary called the ambo team for me and prepared for their entry. ‘Ambo Annie’ acted as a ‘link person’ which allowed me to keep talking with Bob without having to step away and explain things to ambos and nurses etc.She had access to police backup but chose to not engage them for fear of heavy handed restraint which could further escalate the situation and frighten Bob.I was so pleased that ‘Ambo Annie’ understood dementia and had Bob’s point of view and welfare ‘front of mind’ at all times.  We formed a bond as we worked and we became in synch with each other very quickly. I could hear ‘Ambo Annie’ on the phone totally supporting me as she explained that I was doing the right things and covering all the basics.

When the ambulance arrived they brought the stretcher into the nursing home so they could transport Bob to hospital. He was refusing all medications so we had very little hope of a smooth transition. It was decided that it was too dangerous to give Bob an injected sedative so we had to use a nostril spray that absorbs into bloodstream within 10 minutes. Getting the spray in was the hard part and what followed was very traumatic.

The ambos set up a special net on the stretcher which is like a heavy mesh blanket with some arm holes. It is designed to pin the patient down and hold them securely if they are thrashing and struggling. We then moved into Bob’s room to administer the spray by coaxing him into his bed. We struggled for an hour as we tried many methods to get him in a position to give him the spray. Each time ‘Ambo Annie’ went to give the spray he would release an arm and try and hit her. I then decided the best action was to throw his doona over his chest sideways and pin his arms. This was really distressing for Bob as I had to dive on him with my bodyweight and hold his head still with one arm while the spray went in so he could not bite us.

All 4 of of us jumped backwards after the first spray and Bob was in a rage and understandably so. He thrashed about the room and pushed over furniture etc. We had to do this a second time and it was not easy. after 20 minutes Bob became drowsy and calmer and we eventually coaxed him onto the stretcher bed with some real difficulty. The ambo placed the stretcher bed next to his normal bed but the opposite way with his pillow up the other end. This simple mistake caused major confusion for Bob as it was not his normal sleeping position so was reluctant to lay down. Eventually we turned him around and strapped him down.

‘Ambo Annie’ stayed with me every step of the way and would not leave my side, which was really comforting. When transporting Bob to the hospital Annie switched places with one of the ambos which allowed Bob to have continuous treatment with the one person. The ambo drove the other car to the hospital.

On arrival at the the hospital ‘Ambo Annie’ took control and delivered one of the most composed and succinct speeches I have heard.  She calmly gathered the medical team and methodically went through step by step every important detail they needed to know to get Bob sedated and looked after medically. She was so composed and calm and hit every single point that I needed her to get across, to ensure the best plan of action.

INFO ON EXTENDED CARE PARAMEDICS:

The extended care paramedic (ECP) service allows patients to be treated at home or in their home surrounds, without being transported to a hospital emergency department if it is not necessary. In this case things escalated and we needed an ambulance and the extra help.

An ECP is an SA Ambulance Service intensive care paramedic who has undergone intensive skills enhancement and training. ECPs can treat patients for a range of common medical issues and refer patients to other health providers such as GPs if needed.

With this service, an ECP assesses the patient’s requirements through phone consultation and dispatches an ECP single responder in an ambulance response vehicle as opposed to a traditional stretcher-carrying ambulance. The service can be requested when dialing 000.

For more information on this service click the following link:

http://www.saambulance.com.au/LinkClick.aspx?fileticket=7dKFTy8RTL0%3d&tabid=82

 

Dealing with Decline

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This week we have had a setback with Bob. We have seen a recent decline in him that brings the cruel reality of dementia to the fore. We have had to be called in several times to the nursing home at various hours of the day to try and calm Dad down. There have been incidents of agitated yelling, wrist grabs, resident clashes and manic outbursts.We can tell by his eyes and the rigidity of his hands as to where he is at.

He has become agitated, restless and unpredictable. He will not stay calm and is constantly moving and doing repetitive things. Even just taking his pajamas off can now take over 30 minutes. This is hard to handle as you never want to leave him in case something happens when you are not around. His future is in the hands of his carers and nurses as they do their best to handle the behaviours.

We had a situation at 1am in the morning where Dad went to the wrong room and ended up in someone else’s bed. The 95 yo gentleman was not happy that he had a 6ft man in his bed. The carers could not get him out, I drove in to assist and it took me an 1.5 hours to get Dad back to his room.

I tried every trick I could think of as he stubbornly ignored me and kept saying “No!”. There was no point in telling Dad he was in  the wrong room as he is unable to reason the concept. I pretended it was daytime and we should go for a walk, I threw the footy which he got out of bed to retrieve and then returned to the bed. I tried hot chocolate, a toilet stop, food, and even tilted the bed up to an uncomfortable vertical level.

I eventually got his slippers out which made him get out of bed to put them on. Once he was up I then coaxed him towards the door. I had to use furniture to barricade areas of the nursing home off as I tried to steer Dad towards his room. The rooms look very similar so is an easy mistake to make.

I was exhausted and sweating by the time I got him into his own bed. The nurses said they learnt some valuable new tricks and were very appreciative that I came in to help.

The doctor had to make a difficult decision to place a ‘patch’ on Dad to assist with pain and help control his behaviours. Whilst we frantically try and put the decline down to pain, tiredness and just about everything else, deep down we know we have a ‘new normal’.

 

 

 

 

 

 

Dignity in Care – Dr Faizal Ibrahim (Dementia Awareness Day Event)

This speech at the Alzheimer’s Australia Dementia Awareness Day by Dr Faizal Ibrahim totally inspired me.

He is dynamic, sincere and passionate (my favourite 3 words!) and totally engaged the audience. I wanted to share Faizal’s speech as it was a turning point in my journey with dementia.  Faizal raised all the important points that I have been so passionate about within healthcare and aged care relating to providing dignity for people in care . It was almost like he was talking to me personally and I spent the entire speech thinking to myself “Finally! Someone that is saying ‘No More’ to treating people with dementia badly”. What made it really special was that a doctor was standing up and leading the charge.

In the hospitals you are often frustrated & angry, and feel you don’t have a voice. I am very pleased that Faizal has invited me to join his ‘Dignity in Care’ action group and I believe we can make some serious change for people with dementia and their families. The ‘Dignity in Care’ Action Group has given the consumers that voice.

I attended my first ‘Dignity in Care’ meeting yesterday and was honoured to tell a small part of our story with such a passionate group of healthcare & aged care professionals. I look forward to making a real difference, real soon.

*The Presentation is 48 mins  – Grab a coffee and enjoy!

Pain…Something We Need To Be Aware Of

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I thought I would share a recent change in Dad’s condition and behaviours that we originally put down to a ‘further decline in his dementia’. He was sleeping in more, being grumpy, kicking when people touched him, and his dressing routine was thrown into disarray.When dressing him I noticed him slightly wince when putting socks on. He also did it when a sheet was placed over his feet.He had hurt his toes over 3 months ago (due to ill fitting shoes) and we thought his feet were obviously fine, so why 3 months later are they now bothering him? His toenail was actually lifting and he did not have the ability to tell us. With dementia you often ‘blame the dementia’ for just about everything. I called the nurse and showed her his toes and we called the doctor. He placed a ‘patch’ on Dad’s back for the pain. We monitored his reactions to the patch extremely closely each day and noticed he was constantly groggy, refused meds, and was irritable. We rang the doc again a week later, removed the patch and Dad became brighter and happier again.The doc also placed the patch on the ‘allergies list’ which meant it is not a suitable response for his pain. The podiatrist advised that once the nail falls off (anytime soon) – he will be in no more pain. My point?…..With any dementia medication adjustments you need to monitor reactions, side effects (everything) really closely, as if we did not remove the patch Dad may have become a zombie and his condition may be accepted as his new normal…which is not actually the case.

Our Dementia Story in A Nutshell…

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As many of you know the Partington family has jumped on the front foot and put our very personal family story in the public domain to raise awareness about dementia and provide a positive path for other families.

We have just finished being involved in a new Eldercare corporate video to be released very soon.

We have also tried to support the hospital research fund by telling our story. This is to raise funds for vital dementia research. Click on link below for our story.

To be quite frank- at the moment they do not really have many clues on how to prevent dementia, but they have to keep trying as dementia will be one of Australia’s biggest health problems in the next 10 years. ( it is currently no#2).

Don’t forget- if you know anyone with a family member or friend with dementia/Alzheimers they can join my ‘Dementia Downunder’ support group on Facebook.

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

https://www.hospitalresearch.com.au/the-long-goodbye-bretts-journey-with-his-dads-dementia/

 

Detective Work in Dementia – ‘Where There’s Smoke, There’s Fire’

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Dementia is all about watching body language, noticing small changes and thinking like the person with dementia. They often cannot express their pain or thoughts, so it is up to carers, nurses and family members to notice these subtle changes and take action. It is very much like being a detective and looking for clues.

Alzheimers Disease in the early stages usually impacts the short term memory but may not affect the long term memory until it progresses. Some people with dementia believe they are still living in older times and may re-live events or incidents from their past.

I would like to share a recent story at the nursing home that sparked my interest and I am sure many of you may have had similar situations occur that may make you think differently about them.

There is a resident called Barney who communicates well and every story he has shared with me to date has been 100% true. A week or so ago the staff told me ‘Barney flipped out’ . His behaviour was strange (non violent) but not his normal self and very peculiar. He was difficult to manage and was hard to distract when he became fixated on things. One of the staff told me that Barney was talking about a fire at the time.

This week I decided to visit Barney to see how he was and he instantly told me about an incident with a fire. He told me he his father built a fire-proof house in the country and he watched his father walk into the fire and he was killed. I have no idea if the story was true, but I would bet there was a heavy element of truth in what he was saying to me.

Afterwards I thought about what he had told me and I was wondering what was really going through his mind at the time. Why did he behave so strangely and what sparked the behaviour? I then went into his room and I noticed that his room smelt of smoke. There is no smoking allowed in the rooms, however I couldn’t get past the fact I could smell smoke. I have read that with people with dementia often have heightened senses including ‘smell’. If Barney was smelling smoke, this may trigger an unpleasant thought process causing the behaviours.

I then asked myself the following questions:

-Is the smoke smell in his room triggering a bad memory and reminding him of a previous traumatic incident?
-Is he re-living the past in his head and did he believe he was stuck in his burning house and was in a panic, and hence behaved the way he did?
-Does he have an old relic in his room from that fire that is making his room smell?

People are often too quick to ‘blame the dementia’ and increase or add more medications to control the behaviours. When in fact, maybe if the room was aired out, and the staff aware of his past history, they may be able to tackle the behaviour in a different manner?

Anyway, this is a small insight as to how it can be beneficial to step into the shoes of a person with dementia to truly understand their behaviours.