Author: Brett

A Story I Am Not Proud Of…..

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I was at a country field day several years back and I was buying some lunch at one of the stalls. While I was waiting in the line I heard this lad about 11 years old swearing at his grandma & grandpa. No matter what they did he told them to “F*#@ Off”. I was astounded at the vocabulary on this lad and the lack of respect for his grandparents. The boy was really loud and really obnoxious and his abuse was escalating.

My inner voice was saying to me – “These grandparents obviously have no idea how to control this kid and he must have terrible parents with a mouth like that”. The scene was getting awkward with this tirade of bad language and concerned mothers were moving their own kids away to keep their ears protected from such a poor example. The grandma kept calm yet seemed embarrassed as this boy did whatever he liked.

I nearly went up to the boy and told him to settle down, but chose to do what most people do and talk with other people on the line and judge the boy and the family. I was so shocked I actually rang my wife and said ” I have just witnessed the worst example of parenting in my life and this kid is gonna end up in jail”. I then bought my hotdog and drink and went back to my business thinking I am glad I am not those grandparents…how embarrassing.

Several months later I thought about that day again and I started to feel terrible. I realised this boy must of had a severe case of Tourette’s Syndrome (or possibly ADHD). I would bet my life savings that those grandparents were trying to give the parents of the boy a well deserved break and trying to provide a normal day for the boy where he can be around the general public, irrespective of his behaviour. I distinctly remember the face of the grandma as she was so embarrassed but resided to the fact that all the people around her had judged her (and her family) in a really unfair manner.

What I realise now is these grandparents need our admiration and support and probably a medal for having the courage to not only put up with the abuse, and having to feel the harsh judgement from others but for trying to provide a ‘small piece of normality’ for this boy no matter the consequences to them. I wish I could turn the clock back and deal with this situation completely differently. Us people talking behind their backs should actually go up to grandma and ask “is there anything we can do to help?, as it seems you are having a tough day” . This may open the conversation to find out what the ‘real story’ is.

I will never know 100% what the real story was that day, but it made an impact on my thinking and how I deal with people in the future. So why I am bringing this story up in a dementia based group????…..

I felt it was relevant because it is the same stigma carers and family caregivers feel when a person with dementia behaves differently and/or displays behaviours that are extreme or socially unacceptable in a public place. I am sure many of you have felt this judgement with someone you know or love. I never feel embarrassed with what Dad does in public anymore and I am proud of him no matter what. I will also take him wherever I can regardless of what people think. It is not about me, it is about ‘his moment’.

The story about the swearing boy has changed me as a person so when I now see people behaving ‘a bit different’ I now think to myself ……

“…..is it dementia?…..”

Games…Some Variations on Some Old Favourites

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Was at a garage sale yesterday and couldn’t resist buying some new games for the residents at the nursing home.

The hookey game is actually an old table stand but as it has multiple prongs up to 4 people can play at once in a circle. I removed the multiple rings from another game to allow everyone to play at same time.

The ‘Grip Ball’ game was a huge hit and I tested it on the residents with sight problems and they loved it. The fact the ball was caught 9 times out of 10 allowed residents who would normally drop the ball to be successful and be amazed and laugh at how the ball sticks.

Certainly got my $3 of value from these games.

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When Things Get Romantic in The Nursing Home

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I thought it might be an interesting topic to discuss ‘romantic friendships’ in the nursing home. Most men and women crave love and attention, and people with dementia are no different.

People with dementia can often forget who they are actually married to, believe they are married to another resident, can fall in love with a new person each day, and also act on things without hesitation.

All very complicated scenarios but happen each day in our nursing homes. Husbands and wives of people with dementia have to be extremely tolerant and accept ‘new conditions’ when they place their partner in a nursing home environment. I can only imagine the emotional turmoil partners must be feeling in these situations.

The Meal Tray…’Food for Thought’

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I like to analyse all aspects of care from the person with dementia’s perspective. I have realised that there are some fine details that are potentially being missed and should be talked about.

Hospital Meals:

In hospital the food tray is delivered to the bed by someone from the catering department. The nurse (or nurse special) is given the task of ensuring the patient has their food. If the nurse does not know much about dementia, they may not be aware that the person may be incapable of using cutlery and feeding themselves. When Bob was in hospital he was so medicated he could not physically feed himself or use cutlery. He literally would just sit over the tray and look at it.The nurse would encourage him to eat his food and place the tray in front of him but actually have no idea that Bob was incapable of eating without assistance. The barely eaten tray would then be collected by catering staff and I believe if we were not there, would be none the wiser.

I am not trying to point blame, but highlight how a lack of knowledge about dementia can cost someone their meal and potentially could result in the doctor making a medical decision in the future if it was reported that the patient was not eating their food. When in fact they did not know HOW to eat their food.

Containers with lids are also common in hospital. I would suggest that dementia patients may not eat these as they do not have a clue how to open them. eg fruit containers/yoghurt etc…

Are ‘dementia friendly’ meals a silly idea for people with dementia in hospital?

Nursing Homes:

I recently watched a resident not eat his meal because he was unable to judge the distance his bowl was away from him. He struggled with his spoon and also finding the soup. He gave up eventually and the carer went to take the bowl away as he felt the man didn’t like it or was not hungry. I gave the man some bread and he dipped it in the soup and really enjoyed it. The carer jumped in and fed him with his spoon and he finished the entire bowl. This needed to be written on notes that the man now needs assistance.

Hygiene: Time often permits when moving residents in and out for meals in the nursing home. The antibacterial gel probably should be a standard procedure before a meal is served. Even if the gel is nearby the majority of residents would have no idea what it is or what it does, and would need reminding.

What are your thoughts on the meal process??

‘Feisty Fred’ The 95yo Grumpy Bugger is at it Again in the Nursing Home

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Incident #1

I was standing with another carer and a couple of residents when Fred hobbled up to us in his suit and loudly announced ” I wanted to have a conversation with some intelligent people, but it is pretty obvious I am in the wrong place. I’m off!….”

Incident #2

Fred came up to me and said “I would appreciate if you could direct me to where they serve breakfast?”. I said “You have already had it it Fred!” Then he snapped back with “Well I don’t think so…they haven’t given me a f%#@en thing here in 6 weeks!”

Incident #3

Fred went up to a female carer and said to her “I was gonna go and tell you to go to buggery, but you are so stupid you probably don’t even know where it is!”

Incident #4

Fred was tired again and said to me “Man, I am tired….I guess I should be at 99”. I said to Fred “You are 95 Max…but I bet you reach 100, and then you will get a letter from the Queen”. Fred replied with “Oh that would be nice, then I could send it back to her and tell her to go and get stuffed! Wonder how she will like that? (laughs)”.

Nursing Home Residents Show ‘Compassion’ for Model

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One of the lovely residents (a former nurse) whilst sitting in the communal lounge room noticed my ‘spotted’ hands, as I have a mild case of vitiligo, and she was concerned as to what it was.

Vitiligo affects the pigment of the skin and does not hurt, but just looks odd (which doesn’t bother me because I could have something worse). What was interesting was that many residents jumped in on this conversation and were absolutely intrigued with my hands, asking me all sorts of questions.

I then talked about this beautiful black model (pictured) who has the same skin condition but much worse, so I searched on Google to show them pictures of her on my phone. When they saw her photos they were amazed but could still see her beauty, and the ‘compassion’ they all showed for her was another ‘magic moment’. The conversation went for 15 minutes and the residents were happy to not watch the tv and joined in the chat to work out ways to help her.

What it taught me was that people with dementia still retain those ‘core feelings’ and these emotions can still be brought to the surface when the timing is right.They may not always show or be able to be expressed, but they are still there.

A fabulous adult conversation that we all benefited from.

This is dementia..

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What ‘Dignity with Dementia’ Looks Like To Me…

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Allowing people with dementia to finish their sentences

Calling people by their name

When getting ready for the day, encouraging them to do as much as they are possibly capable

Knocking on the door…calling their name…waiting for a response…respecting their privacy

Placing yourself in their shoes ALL the time

Taking the blame for EVERYTHING

Caring for them, no matter how difficult they are

Covering them up as quickly as possible when they are naked

Respecting their feelings at ALL times

Taking the time to find out their history and triggers

Learning to read their body language

Being genuine and sincere

If they make a mistake, NOT letting them know

Protecting them at ALL times

Being there when they need you

Treating them as normal as possible

Dementia Downunder….”The Word is Spreading”

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Wow…Nearly 300 Facebook Members already (in 12 months).

I am really pleased with the group and “thank you” very much for the fabulous content that you have posted. Mixing it up is definitely the way to go. eg a good blend of informative, emotional, personal, inspiring, positive & fun posts. The group has a ‘sincere and genuine’ tone and is supporting and teaching people about dementia 24/7.

I am on a mission to help as many people & families as I can around Australia who are impacted by dementia. I am attending the National Dementia Conference in Sydney soon so I can learn even more. I really want to hear more about what our members are going through, so please share your experiences as there are many people to support you and many others learning from you. The hardest part is having the courage to make a post. I have found sharing our own experience very therapeutic.

My family is normally very private but I have chosen to put our story ‘right out there’ to dispel the many stigmas about dementia. I would love to share pics and stories about other people I meet with dementia, but am often restricted by confidentiality & privacy restraints. (This is why most of my pics are of Bob or our family).Many members in Dementia Downunder have adopted Bob (Dad) as their own ‘online family member’ which has been fantastic, and gives us great support as we tackle our rollercoaster journey with Alzheimers.

If you hear of anyone who is being impacted by dementia please tell them about ‘Dementia Downunder’. The beauty of this group is that we are here 24/7 and you can share your thoughts when YOU want to. We do not judge people and will not tolerate any disrespectful comments. Stay positive and keep on caring.

Thank you!

A Different Way To Look At Aged Care

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I would like to share a very personal opinion that may make people think differently when they next visit their relative in residential care.

I want to challenge the thinking of family members and how we feel about our relatives with dementia when we place them in a nursing home.

I suspect some people may miss them terribly, others may feel a sense of relief that they no longer have the burden of caring for that person anymore. Others may be content that the relative “is now being looked after” and happy to visit every few months.

My question is “I wonder how the person with dementia actually feels?”…….

Imagine yourself in their position? You have lived in the same home for many years then all of a sudden you get dropped off at a place full of strangers. You are confused and you go from the comfort and safety of sharing your life with a few family members to sharing your every move with 20-30 new people that keep changing each week and who may behave in unusual ways.

You used to be able to do most things for yourself, and now you are being told what to do by a different person/s who comes into your room every morning, turns your light on, and then tries to get you to take your medications.

Then there is the many words you have to face during your care routine as you rub your eyes…… ” wake up……do this…do that….don’t do this…don’t do that…Let me do it…..eat your food…take your pajamas off….have a shower……get dressed…you have done your buttons wrong..etc..etc….”.

Imagine how you now feel when your cherished family members may only turn up to visit you every month or so for 10 minutes? Do I feel special?…. Do I feel loved?…..probably not…

I had a lady say to me recently about her Dad… “I just want to remember him the way he used to be, so I don’t visit that often”….

Well I don’t understand why you can’t keep living with the person IN THE NOW….. Ok..so they may look, act, and behave a little different than they used to, but the person you love is still inside and just doesn’t know how to express themselves.

It is us relatives that need to adapt to their new world and FIND A WAY to communicate with the person with dementia. Learn to read their body language, look into their eyes and you will find small moments that will melt your heart. If you don’t make the time you will miss these moments, and that is really sad.

I believe aged care is not a time for letting go of the person and distancing yourself, but a great opportunity to really get to know them on a level you never thought you could.

Take the time….and you will be rewarded more than you know…..