Author: Brett

Hanging on the Telephone

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This dementia journey has produced some magical moments for me over the last 5 years. I want to share a small but powerful moment that happened at a recent dementia workshop I was presenting at last week.

One of the staff from Alzheimer’s Australia/DBMAS was in the audience listening to me speak about a story involving my night in the Emergency Department (ED)of the hospital with Dad being restrained by the security guards many years ago.

I told the audience I was in a really distressed state and was traumatized at what had just happened and had no idea what I was going to do next (I knew zero about dementia back then). I explained how I went into a corner of the room in the ED and called the help line. The voice on the end of that line was very comforting and it was one of the most amazing calls I have ever made.

This person came up to me after the presentation and said “Brett, After hearing you tell that story about your Dad in the ED, I had to let you know that I was the first person on the other end of the line that night when you called. I will never forget that call as long as I live….you sounded so distressed and emotional.”

Wow!…I am without words….

Breaking The Shackles

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I want to share something that is very personal to me, but also very public.

As many of you know, when I do a dementia presentation I leave nothing in the tank. I bare my soul and give you a ‘warts and all’ insight into a situation that is playing out all over the world many times over. I try and influence people to understand that there are millions of people battling with dementia, but there are millions more caring for these people. This is global…..

For some bizarre reason I want to share what it is like to stand in front of a group of strangers, tell my story then watch positive change happen in front of me. It is terrifying, exhilarating, emotional, therapeutic and powerful all at the same. I spend hours and hours preparing and practicing to the point of having the speech content spinning in my head out of control, and even getting upset on occasions when things hit too close to home. I have so much to say but have to find the most influential bits and try and remember them….This is the stressful part. The first 2 minutes of a presentation you are being looked at by strangers and being judged, you feel vulnerable but this goes away very soon. I choose to have a ‘this is me…and I am what I am” attitude. I try and deliver honesty and brutal reality in a sincere & authentic package and I can feel some people in the room squirm. I realise this is my speaking style and is not for everyone.

The key to public speaking is to ‘push on’ no matter what happens, as this is not about me, it is about the audience and what’s important is what they take away from the presentation. Can they be better carers and nurses with more information and real stories?…I hope so.

After the speech I love it when people come up and tell me their stories. This inspires me and gives me new ideas to create change. To give you an example I recently had a lady come up to me and tell me her heartbreaking story about her husband with Alzheimers who had trouble with anti-psychotics at age 57 and took his own life 3 weeks later. Another lady shared with me some amazing and unique ways to create engagement in the nursing home she works at, someone else talked about acute care issues in the country, others just say ‘thank you’. I feel so privileged to be exposed to the private lives and thoughts of others without even knowing them. I encourage these people to join ‘Dementia Downunder’ to share their thoughts and ideas with all of you. We can get to know them and deal with dementia as a community….there is strength in numbers.

I try and chip away with ‘taboo’ subjects and I brought up a new one yesterday…incontinence & toileting issues. This is happening in every aged care home, and hospital in the world and it is difficult to deal with, and our amazing carers and nurses are dealing with this many times per day. If people are struggling with an aspect of a disease we need to bring it out in the open, discuss it and then deal with it. No more restriction , no more stigma, this dementia story needs to be told ‘loud and proud’ without judgement. Let’s just have the conversation and work out the solutions. A positive and collaborative mindset is what we need without politics, excuses and old fashioned thinking….this is simply about PEOPLE, and they ALL matter irrespective of their race, gender, financial status, social problems, sexual orientation or anything else.

I leave the dementia workshop and visit my Dad which keeps me grounded as it reminds me what I am fighting for. I go back to being a son again and just sitting with him hoping for a smile. I banter with the residents and we talk about ‘nothing!’ and laugh. My sister helps me get Dad ready for bed and does a great job, as this is not easy when the person no longer knows how. I go home to my family, only to once again fall asleep on the couch exhausted with a headache from my exciting ‘rollercoaster’ day.

I want to be free when I speak and I am going to continue to ‘break the shackles’ and talk about this disease and all that comes with it. I hope I can encourage others to speak up as we need more people to share their story, we need more caring people in our aged care homes, we need to create dignity for all, the clock is ticking…..tick…tick…tick…

The Power of Touch

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Once again I received another ‘on the job’ lesson in how to care for people via the nursing home today. I was visiting Bob (Dad) as he had been striking out at a carer, and I was in ‘re-direction mode’ and we were heading for the sanctuary of his room to calm things down. On the way I heard a scream from a nurse as a glass and bowl broke in the dining room. I looked across to see some broken crockery and glass on the floor. A few seconds later I heard another scream from the nurse and she turned to find a very frail female resident had fallen and her head had hit a sharp ledge on a window frame.

The scene was really traumatic and I heard the lady hit the floor so I decided to leave Dad and try and help out. I felt quite useless as I have no medical background so I decided to concentrate solely on the resident’s well being & state of mind. I ran around to get wet flannels and some pillows for the nurse then simply comforted the lady by holding her hand (using the Teepa Snow grip) which I had recently learnt about. The nursing staff arranged for a lifter to get her into a wheelchair, and some bandaging for the lady’s head which was bleeding quite badly. I simply tried to keep out of the way whilst just trying to re-assure the resident that “Everything will be ok”. Right in the middle of all the panic another female resident yells out to me from her table “Excuse me..Excuse me….Can you get me a biscuit?”. I put on my most patient voice and said “no problem…I won’t be long”.🙂

The injured lady was ever so polite and was constantly talking to me and thanking me for holding her hand. I applied some palm pressure throughout (as I was told this is comforting) and I was amazed when she then said to me “Thank you ever so much for being with me, the way you are placing gentle pressure on my hand is making me feel very re-assured”.

are you serious?………

Here is this poor woman in complete shock and pain, verbalizing how she felt about the ‘hand holding’ as though she was giving me a live tutorial on how to comfort someone who has fallen. I stayed with her until we had her back in her bed and I just sat with her (still holding her hand) and watched her go off to sleep, then left the room.

I am sharing this story as I continue to be involved in these incidents and be taught so many valuable practical lessons as though it is meant to be…..bizarre. It taught me that having a re-assuring voice amongst the mayhem can soothe the injured person and sometimes ‘little things matter’, and that the power of touch is very powerful indeed.

As I walked back to Dad (who was asleep in a chair) another female resident came up to me with a look of horror on her face. I said to her “Tell me what’s wrong Mavis?” She couldn’t speak and was shaking her head…..Then from her body language I could tell she was in shock from witnessing the other lady fall. She was worried about her and was reacting to the situation. I reassured her that the lady who fell will be ok and the doctor is checking on her. I then asked her if she would like to have some ‘quiet time’ and have a rest, and she said “yes please” and I walked her back to her room. She also was really appreciative that her concerns were re-assured.

Once again another valuable lesson in human behaviour…when someone falls we need to check on ALL the residents to make sure they are ok (and not in shock) as well.
After all the excitement & life lessons – I went home and fell asleep..ZZZZZZZZZZ

‘Wee’ Need To Give People With Dementia Some ‘Relief’ From Loo Confusion

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When you next visit the bathroom at a pub, restaurant or cafe check out the creativity and design of the toilets signs on the doors. I know I personally have trouble sometimes working out which toilet door to enter (even more trouble after a few beers), so imagine if you have dementia as well? Your next move could be very embarrassing indeed.

I love a laugh and some fun, so I have attached a few crazy toilet signs to this post for your amusement. But also on a serious note I just wanted to point out how difficult going to the toilet in a public place must be for people with dementia (especially in early stages without a carer).

Our environments are really confusing and we need to be mindful of people with dementia, just like we make allowances for people in wheelchairs etc. Just because the symptoms of dementia are not always physically visible does not mean they are less important and should not be considered.

PS – The taps in bathrooms are also getting really confusing these days- I often end up standing at the basin waving at the spout, or vigorously rubbing my hands with no water coming out….how embarrassing!!! 🙂

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Spotlight on Family Members

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As a ‘family member’ I believe to present a balanced view I should highlight some of the shortfalls in our role within the world of aged care and hospitals. Quite simply….on occasions, we get it wrong! Sure …”we are the family and we know best” is what many of us believe, and is often the family member mantra as we strut around the nursing home looking for any evidence of mistreatment.

Sometimes we don’t know best and we have to trust the staff and management of the aged care facility or hospital.

Example 1: I often demonstrate to nurses how to get dad to take medications and I was offended when a nurse questioned whether dad had swallowed his tablet. I said “once he swallows, he has definitely taken it, and it is his routine”. But the nurse persisted and wanted to check under dad’s tongue to be 100% sure. It was a couple of minutes or so later and I was really mad that the nurse questioned it. But as she checked under his tongue, there was his little yellow Oxazepam tablet hidden there like a prisoner in jail would do. I was staggered and embarrassed but most importantly said to the nurse “sorry…you were right”. Once again I learnt valuable lessons in that you have to be thorough at all times, follow procedure and be ready for a change of routine, as the dementia journey is ever-changing.

I also learnt to get off my ‘high horse’ and allow people to do their jobs without constant badgering. The nurses and carers have a tough job to do and they are forever under scrutiny. We need to treat care staff and nurses with respect and allow them to teach us some things as well. There will always be the odd person that is not doing the right thing or may just do their job for the money. But we must be mindful not to punish the thousands of other fabulous carers, nurses and doctors that are committed to patient care.

At the end of the day – when we visit our loved ones with dementia in a nursing home or hospital we only see a ‘snapshot’ of their life in care. In that 15-30 minutes of visiting time do we really know what is happening across the other 10,050 minutes???

If this worries you at all – then you could visit more often, meet the other residents and families, create relationships with care staff and nurses and discuss how your loved one is coping and interacting. Perhaps visit regularly every day for a week or so and turn up at different times including meal times. You will see the pressures, the system cracks and you may even get to know other people with dementia a little bit better. You will learn how to care for your family member and be more tolerant of others. Most importantly you will have a more informed understanding of dementia and all that comes with it and you may think twice before you go off at staff demanding ” I want better care for my mum or dad”.

This is dementia….

Do We Really Have A Clue?….The Pressure Is On.

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This post may be one of my more challenging ones but I believe this is a conversation that needs to be had…..Do we really know what care our loved ones are receiving? I visit the aged care facility every day pretty much (and we are in one of the best) and am fairly intuitive when it comes to people, but sometimes I question what can happen to a person with dementia when we are not there?

I am concerned about night time shifts when care staff are stretched and often filled by agency carers or staff not known to the person with dementia. This is the ‘key ingredient’ for trouble to occur. If I put myself in the person with dementia’s shoes , I wake up unsettled at night and set off the motion detector in my room, as I walk around lost. A carer comes in to investigate and they tell me to “get back into bed” . I am shocked as the tall figure in the shadows barks the order (with no-one else to be accountable to), the carer is a complete stranger treating me like a child and they don’t even know me or may not want to know me. They may talk down to me sternly to evoke a quick response to avoid waking other residents. The carer may be no-nonsense, they may be empathic, they may be from a different culture, they may be understanding. Whoever that single carer is, and what they know and what they stand for, will potentially determine my future.

Even though we protect our loved one across most of the day, you can never protect them 24/7 and we are subject to the ‘system’. If the care staff deem the person with dementia difficult or is seen to display ‘difficult or aggressive behaviours’ an ambulance or police could be called at their discretion. Everyone has a different tolerance and we all have different ‘tipping points’. The result is potentially a life changing scenario that can rip families apart and send the person with dementia deep into the mental health system, which could be avoided with more intensive staff training and strategic rostering. The costs blow out everywhere as the work is loaded onto emergency services, security staff, extra nurses, doctors and carers who are all required to deal with the aftermath.

My point is this – aged care facilities need to invest deeper into their dementia training and focus on the key elements such as ‘tone of voice’ , the ‘power of touch & body language’ and diversionary tactics. When words are no longer effective and the person with dementia simply does not understand anymore, you are simply wasting your breath…..Perhaps roster key staff on at night with advanced dementia training so that good decisions can be made and create an accountability that keeps everyone safe and sound. It may take the courage to actually add a person to a shift in the short term or invest some more training dollars, but the long term cost savings and resident safety and happiness is paramount. The families will be happier and the pressure valve released off a system that could potentially blow.

PS – The role of the agency carer or nurse is often not understood or valued by people, and can sometimes be given the ‘cold shoulder’ by regular staff who may treat them as the ‘enemy’. I actually believe agency carers and nurses are vital and courageous ,and under the most pressure, as they continually walk into potentially dangerous situations with very little resident knowledge or background (let alone facility procedures). Perhaps developing a team of agency based ‘dementia champions’ is the way to go? …Is this possible?

How Secure Are Our Loved Ones?

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After talking with staff at an aged care facility I was shocked to hear that is commonplace for shady individuals to be stealing possessions off the elderly. I am told that some carers and other staff can be involved, but also outsiders that just enter the buildings and case out rooms. I have also heard ‘couples’ masquerade as family members.

I was staggered to hear these situations are occurring but then recently spoke with a person who has a friend with alcohol related dementia (Korsakoff Dementia) who has no money, and has been placed in an aged care facility. This man has had his own clothes stolen and has been left with practically nothing.

Have others experienced issues of theft and dishonesty? If so are there any tips or things that can be done to safeguard people with dementia in aged care homes and hospitals? Our elderly are extremely vulnerable to scammers and thieves and we must safeguard them where possible.

 

 

An Insightful Lesson From A Beautiful Lady

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Yesterday I sat with one of the most amazing ladies I have ever met. ‘Humble Hannah’ is 94 years old and an absolute treasure of a person. She always thanks me for talking with her and and tells me what a pleasure it is to have such an interesting conversation together. Hannah is so lady-like and nice that I would do absolutely anything for her.

But yesterday she gave me a lesson in humanity presented in a 3 minute flawless monologue with perfectly chosen words. Her message was about the elderly, and the way they should be cared for. This is pretty much how it transpired:

Hannah: I think the elderly of today need to be taught a skill. I know many of us may not be around for much longer but we need to stay refreshed and keep learning new things. The people (carers) here are lovely and try hard, but much of the time I am a little bit bored.I remember a time when I went up to an aboriginal community near the top of Australia and taught some women the skill of spinning and weaving. It took them a few days to master the skill, but when they did they were ever so pleased and the look on the ladies’ faces was priceless and they were so proud of their accomplishments.

Brett: That sounds like a fantastic idea Hannah, what sort of skills would you like to learn?

Hannah: I would like to attempt some pottery making with clay and one of those spinning wheels. I would also like to do some cake decorating or maybe some cooking. It would probably be something basic but it would be nutritious and I could feed the other wonderful people I would consider close friends here. Maybe we could listen to some nice music as well, I remember when the machine came out with the big horn on it which astounded everybody at the time. (gramophone)

I was in awe of what I had just heard and wished I had recorded it. Some big lessons on what the elderly are really thinking as they collectively sit in their armchairs watching Andre Rieu belt out another tune on the tv for the millionth time…..

I then sat with Dad on another couch but kept one eye on Hannah’s table to watch the interactions. ‘Jack the Dentist’ was reading the newspaper but had fallen asleep, and it was priceless watching Hannah (who was sitting next to him) as she carefully lifted up a curled corner of the newspaper trying to sneakily read an article without disturbing Jack. I could see her mind ticking over and she knew she could take his paper and he would probably not remember he was reading it if he awoke, but she chose to just keep re-reading that corner and leave his paper in place for him. Not many people would have done that and I was once again impressed. I walked over and said “It’s ok Hannah, you can take his paper, Jack won’t mind”.

Funnily enough – Jack then woke up with a start and did in fact mind and instantly leered at the paper Hannah was now reading. I could see a ‘resident rumble’ about to start as Jack was about to snatch his paper back.So I ran to Dad’s room and rushed back to give Jack a brand new, freshly un-opened newspaper (as Dad cannot read anymore) which he duly appreciated. The problem was solved, the resident’s were happy and Hannah gets my vote for ” Resident of the Week”.

Hot Stuff in The Nursing Home

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I was in the nursing home yesterday morning chatting with some residents when 80 yo “Moody Judy” came up to the table we were sitting at. I never know what Judy will say when I greet her with my usual “Good morning Judy …How are you today?”….I then hold my breath….and wait for the reaction, which is always clear cut and direct but could be either “absolutely wonderful kind sir” or “What’s so bloody good about it?” ( then she storms off).

Well today was different, I gave her my usual greeting and she had me wondering when she said nothing, but reached out for my arm,rubbed it, felt how warm I was, smiled and said “ooohhh….aren’t you hot stuff this morning?”

I cheekily responded with “It’s a little bit early for that kind of banter Judy…don’t you think?” (thinking she won’t get the joke). Quick as a wink she retorted with “Typical man, always taking every conversation straight into the gutter!, some things never change…..but you are lucky I like you”.

I have been warned….🙂

This Notice Helped Save Dad Being Sent To A Mental Health Facility

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This was a note I placed on Dad’s hospital room door, & at the top of his medical notes.

When Dad was highly agitated in hospital our family was very worried about triggering any behaviours.

As we are family, we intimately knew all the indicators that told us Dad was starting to escalate. This is really hard to pass onto others, but so worth it.

We were extremely fine tuned to his body language and would know by the pressure in his hands as to how dad was feeling. Everybody is different so this trait is probably unique to dad.

The reason why I am sharing this note is because it is super important to let hospital/aged care staff know how to handle the person with dementia the best they can. It is safer for them and better for the person with dementia.

By simply shaking Dad’s hand you can tell ‘where he is at’ and react accordingly.

Just imagine what would happen if a new nurse came on shift and had no idea that if you try and remove dad’s shirt when he is agitated you may get whacked.? This would mean security would be called and heavy restraint.Plus the potential for injury to the nurse.

You will also notice I tried to explain the best way to give dad medication. Obviously people with dementia often do not want to take meds and can be a volatile ‘flash point’.

I was not trying to tell the fabulous nurses how to do their job, but with dementia it is best to share as many ‘little tips’ as you can as it can make everyone’s day so much better.