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


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)

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.

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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