Category: Diary Blog

Honour Your Loved One This Christmas

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I wanted to come up with a simple way to remind us all about the real meaning of Christmas, and what caring about people is all about.

Unfortunately my Dad can’t be with us at our Christmas family lunch this year as he is unable to leave hospital due to his current condition. This will be the first time in our family’s history he won’t be physically with us. Many of you may be in a similar position or may have tragically had a loved one pass away.

I thought a nice gesture would be to leave a place (empty chair) at the Christmas table as a reminder that they are still with us no matter what, and to ensure they are not forgotten.

Dealing with Dad’s dementia has taught me a lot about people, the strength of our family and also about what is really important in life.

Dementia may take away the voice of a person, but it is up to us to give them that voice in our community and protect them when they no longer can.

A dementia friendly community to me is one that is ‘all inclusive’ and ensures no-one gets left behind.

When you care for someone with dementia it is not the gifts that matter, it is the dignity, respect and the way you treat them that matters.

Honour your loved one today by just thinking & talking about them……

Don’t forget to give your nurses and carers a hug to thank them for just ‘doing what they do’ (it is invaluable).

Please feel free to use ‘Dementia Downunder’ to share with others what your loved one/s means to you.

Thanks

Brett

Food Service Assistant – The Heartbeat of the Dining Room’

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The Food Service Assistant is the unsung hero of an aged care home and often an undervalued member of the team. The chefs and food preparation staff busily prepare thousands of meals to the liking of their residents. They have to reach food & hygiene standards and tailor each meal in accordance with the medical conditions, allergies and food preferences of the resident (or what their family think they may like). But today I want to talk about the food service assistant (FSA) who prepares and serves the meals and delivers them to resident’s rooms. They prepare the tables for each meal and also retrieve all the dirty dishes and trays.

What many people don’t know is how pivotal their role is in the aged care system. They are that extra pair of eyes and ears in the dining room and often are the first people to spot an accident, a fall, a fight or trouble. A switched on FSA knows all the ‘fine details’ about a resident. They more than likely know the following:

  • what food they like or dislike and how much to serve
  • allergies
  • how to assist the resident to eat
  • the habits and subtle eating/health changes of residents (eg swallowing ability)
  • when a resident goes off their food or stops eating or drinking
  • dangerous situations (eg cutlery with unstable residents)
  • whether the resident is unwell
  • when trouble is about to start between residents
  • foresee safety issues before accidents occur
  • the hygiene habits/standards of residents

If I was employing staff for an aged care home, this person would be someone I would really take my time over during staff selection. They have to have a friendly and caring personality as they are the people the residents are interacting with so often. The meal time is the highlight of the day for most aged care residents and it needs to be a pleasant experience. The ambience of the room is often dictated by the food service assistant. If they are like the ‘Soup Nazi’ off Seinfeld then the room reacts accordingly. I have seen people like this and their rapport with residents is terrible and eventually they hate their jobs, receive complaints and eventually leave their jobs. On the other hand I have seen amazing FSA staff who are bubbly and fun and they are the ‘heartbeat of the dining room’ and when they are on shift everyone has a great time.

As a carer and family member I always create a rapport with the kitchen staff and chat with them every morning. I want to hear what is happening in the ward, who needs some extra attention (they may be agitated or upset), find out if Bob has eaten his meal and even ask what mood he is in before I open his door. The FSA has insight into every resident’s current position and I would go to them if I needed fast info on my loved one. They are moving in and out of rooms regularly and know the status of each person. They and are often belted or having their lovingly prepared meals thrown on the floor, or thrown at them.

The FSA is someone who needs a gift at xmas time to remind them that they are valued and doing a great job. They are often treated like a complaints department and have to listen to negative people whinge and complain on nearly every shift they work. I know if I was in a nursing home I would want the FSA to like me and look after me. (and give me that extra piece of crumbed chicken).

I suggest you watch the kitchen staff when you next visit an aged care home and you may be surprised at how valuable they are and what contribution they make to the aged care experience. Bravo!

 

 

 

Code Black Restraint Teams – ‘Holding Hospitals Together’

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“Code Black..Code Black” – This is the call to the security team that has been made over 20 times during Bob’s three stays at the Royal Adelaide Hospital (RAH). The restraint team consists of a team of 7 security guards that respond very quickly to any emergency within the hospital and are a vital part of the system. Both men and women are on the individual teams that work 12 hour shifts each day. One person is in the control room and the others team up to wherever the next restraint is required. Two guards are normally stationed in the Emergency Department (ED) as this is a ‘hotspot’ for trouble. This is due to alcohol and drug related violence often occurring on friday and saturday nights.

Another area the restrain teams are required regularly is in the three locked wards on Level 8 of the hospital . These wards include patients that may have dementia, schizophrenia or mental health problems.Patients can have unacceptable behaviours which may include aggression, hitting, kicking, biting, spitting, fighting, abuse, nudity and verbal outbursts. Gloves are worn by the guard as they attend each incident and some wear safety glasses and surgical masks when required. It is very re-assuring when you have a code black situation happening that at least 4 guards will be arriving within a couple of minutes.

The first time they were called when we were in the Emergency Department I will never forget the ‘whoosh’ and power of the group as they all grabbed an arm or a leg each and helped me restrain Bob. It seemed barbaric and cruel at the time but there simply is no other option when violence is involved with a patient. The team is trained to restrain and there does not appear to be any difference in how they handle each incident.  I assume this is because they often do not have time to reason with people or know what the patient is capable of. If they have a show of force quickly then the chance of escalation is reduced. The guards usually have no medical background and ultimately their role is to protect the person, the hospital staff and other patients.

I have worked with many members of the restraint teams as they have been called to help us many times. I will often talk to the first two guards and quickly explain that we are dealing with a dementia patient and a ‘softly, softly’ approach is to be attempted first if possible. The reason why dementia is different is that usually the person is older and more frail, but also the patient is scared or delusional and extremely traumatized by the sight of up to 6 guards in a small space trying to grab them. I am a big believer that ‘dementia training’ is a must for the restraint teams. As I have been involved so many times I have witnessed many occasions where we have avoided even touching the patient by not crowding the person with dementia, talking with them in soft,calm tones and re-directing them. The guards get to know the patient often and use his or her name and get a much better result because of this.

I have actually seen some of the guards adjust to this calmer method and it is really pleasing to see. Of course situations often escalate and force is required. If we can train the restraint teams to adapt to the conditions of the patient it will allow them alternative methods to try which will have the patient’s well being considered. I believe we need to provide dignity and respect wherever we can in our hospitals and the restraint teams is probably the most logical place to start.

I must say the more I get to know the guards and have them watch me deal with Bob, the more I understand how they work and the more tips they pick up on dementia from me. There are some terrific people on the restraint teams and we all try and have some lighter moments when we are standing together for up to an hour at a time. Thank you to all the guards in the hospital who keep everyone safe – you are doing a great job!

**Funny Story – In the middle of a tense situation whilst the restraint team were holding Bob, one of the male guards points at Mum and says to me “So who is is that lady over there? Is she your sister?” I responded with ” She’s my Mum and you have just made the Christmas List Buddy!” 🙂

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The ‘Nurse Special’ – Caring at Close Range

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The ‘nurse special’ role is a unique one and at times can be challenging, mind numbing, exciting, dangerous, boring, difficult or tedious. It depends on the patient, the environment and the personality, skills and attitude of the nurse. The role of nurse special is to give ‘1 on 1’ nursing assistance to patients that require extra monitoring. If the patient is bed ridden the role may involve sitting there for hours and doing regular observations (obs). However if the patient has mental issues eg late stage dementia, schizophrenia etc… the role is extremely difficult and can test the patience and stamina of the nurse.

Bob is constantly moving and will not sit still. This means the nurse has to follow him wherever he goes within the ward. It is a fine line that has to be tread by the nurse as they try and engage Bob, and distract him from dangerous situations but may also put themselves in the firing line of ‘hitting out’ or verbal tirades. The nurse is usually stationed outside the room on a small desk with his medical notes on it. They have clear vision of the patient at all times and have to battle with boredom most of the time. When Bob gets up he tends to wander aimlessly and is unpredictable. The nurses are usually informed of his behaviours and are often on edge until they work out his body language and triggers. In an 8 hour shift the nurse may be walking up and down for 7 of the 8 hours which is extremely tiring.

When a new nurse special is allocated, our family usually explains the tips and tricks to looking after Bob. We teach the nurse what to look for signs of agitation and how to handle them when they do. Many of the nurses have little or no experience with dementia patients and have no idea about the ‘repetitive’ nature of the disease and the cognitive issues associated with it. There is no point in trying to argue or reason with a person with late stage dementia as they simply do not have the capacity. We explain that it is best to ‘agree’ with the patient and ‘go along’ with whatever they believe they are doing or saying. If the dementia patient does their buttons wrong on their pajamas etc it doesn’t really matter and you tend to accept a lot more things that are not normal. I tell  nurses to ‘take the blame’ for things with dementia patients as it is the best way to avoid trouble.

Many of the nurse specials are new to nursing and is why they have been allocated to the specialling role as they are essentially babysitting the patient. Sometimes you have very experienced nurses allocated and the experience shows and is evident immediately. The way the nurse interacts and handles the patient is vital. With Bob he likes to touch people and this can be really confronting for a new nurse. They also need to be aware that when agitated he may grab their wrist  or hand and squeeze it to hurt them. This makes the nursing role a very stressful one and I really do feel for them. They cannot leave Bob’s side, but also have to take action for every move that he makes.

We tend to ask a lot of questions of the nurse and always want to know when meds are given, any difficulties and be advised if there have been any ‘code blacks’ (security team restrains). Bob has been in the RAH now for just under a week and had 10 code blacks which are vital to protect the nursing staff and also the patient. Bob can take up to 45  minutes to subdue and often needs extra injected meds as required. Inexperienced nurses tend to call for ‘code blacks’ too quickly which really frustrates the family as we are trying to avoid the trauma if possible. Having said that – an early call for help can also be a safe call (and life saving). I have been with Bob when he has become violent and within 30 seconds we have gone from calm to out of control and knowing security is on it’s way can be very comforting when in the heat of battle. (refer restrain teams blog)

I like to discuss with the ‘nurse special’ the following when I first meet them:

  • brief history on him and advise how nice a person he was before dementia
  • interacting with Bob and understanding his speech
  • encourage the nurse to read the case notes during quiet times
  • how to detect mood changes (eg. the tension in his hands, an evil stare, or swearing)
  • how to get Bob to take his medications (eg place tablet in his right hand then give him cup in the same hand)
  • monitoring his behaviours, toileting, drowsiness and sleeping patterns and reporting things accordingly
  • tips for his meal times, changing his clothes, showering and bed times
  • tips for de-escalating bad behaviours (eg do not make sudden moves, do not show fear etc)
  • advise them to rest when Bob sleeps as once he awakes they will be walking some serious kilometres
  • letting them know they can call me 24/7 if things get out of hand
  • advise them what we will be wanting to know when we turn up or call

As nurses change shifts 3-4 times per day we end up having to explain the above topics over and over again. This is taxing on the family but we believe if we can teach each nurse about dementia in the process they will become better nurses in the future. If we get a feeling the nurse is not up to the task we will contact the Ward Manager and suggest extra help for them if required or perhaps ask for a switch if they are really scared etc.(which is totally understandable). When we have the same nurse caring for Bob, it is very comforting as we can relax (to a degree) and know the nurse is fully informed and can usually handle the situation. We often create a relationship and bond with the nurses as we work together with them to deal with Bob. I have to admit that he is extremely difficult to handle and will test out each nurse.

The nursing role in a hospital environment is one which is totally valued by me and and is so vital to the patients. We like to advise the nurses of Dad’s kind nature as dementia can often mask the real person and give the nurse the false impression that the person may have been aggressive and violent all their life. We always worry that the nurse may ‘pigeon hole’ Bob as a nasty patient and treat him accordingly. By discussing his former life and nice qualities we hope they can see through the behaviours and tap into his good side where possible.

Our nurses are underpaid and are under extreme pressure and their care and understanding is greatly appreciated. Keep up the good work!

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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

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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)

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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

Brett0 comment

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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.