Category: Diary Blog

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…..

Alzheimer’s Australia (SA) – Memory Walk

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A great crowd turned out to support people with dementia at Colley Reserve today, and it is believed a phenomenal amount has been raised.

Adelaide Corporate party band ‘ The Holeproofs’ rocked the event and had local residents leaving their apartments to come and join in the fun.

Well done to all the volunteers who made this event happen.

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Are People With Younger Onset Dementia Getting Their Fair Share of The Funding Pizza?

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A week ago I was invited to be a dinner guest with 7 fabulous couples who are part of an ‘Adelaide Hills (YOD) Social Group’ run by Nicki Peaston. It was an absolute honour to meet everyone, tell my story and learn more about people with younger onset dementia as we devoured some yummy pizza.

We chatted about many topics with many being non-dementia related. I felt it was important to talk about the lives of everyone, rather than just discussing their current situation. I did however learn a lot more about younger onset dementia (under 65) and the struggles of their partners who care for them.

I discovered that not only do they have less support options, once a person with dementia reaches 65 they are cut off from some vital groups and services. Funding ultimately dictates this, however I was disappointed that social groups were also impacted purely because an age is reached. We don’t suddenly stop being friends with people because they turn a certain age, and by putting a wedge in between them it is not ‘dementia friendly’ in my opinion.

Younger onset dementia falls into a grey area in terms of funding and support services available to them – Just because the person is under 65, should they be supported by disability services or should they be supported by aged care services? Current government funding for services means that people with younger onset dementia are not adequately supported because they don’t fit neatly into either category.

If for example I was to be diagnosed with dementia at age 47 and was needing extra support I would be placed in a nursing home that predominately caters for people 65-100+. The environment would be completely wrong for my needs, the tv programs and music would not be suitable, the activities provided would be inappropriate and my social circles would be heavily impacted.

Younger people are not interested in bingo, knitting, Andre Rieu or any other activities for older people. They need mental stimulation suited to their age which keeps their minds active. They need to go outside, get some exercise and go on excursions.
They need games, computers and people their own age to socialize with.

It is about time our younger onset people are treated properly (and fairly) and a centrally based facility built to cater for them. This way people from all suburbs can access it equally, they will then have an age appropriate environment, and be able to live a happier life. Approximately 15-20% of people diagnosed with dementia in Australia are under 65.

The current situation is unacceptable as it is putting more strain on the carers as they have less support avenues than people over 65. This situation does not sit well with me at all and I would really like to hear comments from people who are living within this seemingly inadequate system.

Whilst this is a heavy and uncomfortable topic to discuss it is a conversation that has to be had, and these people deserve to be looked after properly. I do want to commend Nicki on her commitment and support to the carers and people with dementia in the Adelaide Hills.

Thank you for having me for dinner and I hope I can come again as I really enjoyed meeting everyone and telling stories with each other. Bravo

The Secret Is Out…Bob Has A Guardian Angel

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That angel is my Mum, Jan.

Up until now Jan has been quietly looking after Bob nearly every day and dealing with everything dementia can throw at us. However today (without her knowledge) she has burst onto the internet in a cameo role on the new Eldercare promotional video. Jan turned up on the day of filming and was helping me calm Dad (who was having a bad day) and next thing we knew she had become the star of the video. She was actually so busy caring for Dad that she forgot the cameras were still rolling, and had no idea this video would one day be made public.

Jan is very shy and I am sure she never wanted our dementia story in the public arena (let alone on the internet), but I want to take this opportunity to sincerely thank her for allowing me to share our story to help others.It is extremely difficult battling the ‘dementia rollercoaster’ at such close range and Mum has been an absolute inspiration to myself and my brother and sister.

Jan has probably broken the record for the most visits to a single resident in nursing home history, but she wouldn’t have it any other way. Jan is also an unsung hero that has not only committed herself to giving Bob the best care ever, she has also helped many other residents within the nursing home when required.

I can’t begin to tell you what an amazing person Jan is, but I am sure from the video you can tell that we have been blessed with an amazing, loving mother that has taught us so many life lessons just by being her. I have had a ‘Brady Bunch’ style upbringing thanks to my parents, and I want you all to know that in over 50 years of marriage they have never argued ….fact!

I would also like to acknowledge all the people with dementia who do not have the support of family and friends and hope that ‘Dementia Downunder’ can be a family for them also.

Bravo Mum & Dad!

I Gotta Share a Really Proud ‘Dad’ Moment

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Over the last two weeks Bob has been forgetting my name and has called me by some new names such as ‘Kevin’ , ‘James’ and his favourite…”Hey…. You”

Many people get really upset when a loved one forgets their name but I am finding it amusing to hear what he calls me each day. I don’t get too upset because I can tell by his eyes when he sees me that he totally recognizes me. Whilst I know he will eventually forget who I am , I totally hang onto any small positive moment.

I went to the Nursing Home last evening (about 8pm) after a late meeting to see what Dad gets up to at night and he was sitting in the dining room amongst all the other dozing residents. As I quietly ‘tip-toed’ up to him he eventually spotted me. His face lit up with a huge smile, he then jumped up out of his chair and yelled out across the room at the top of his voice:

“HEYYYYY….BRETT PARTINGTON…….HOW THE HELL ARE YA?” (and came over and shook my hand).

These are the special ‘late stage’ dementia moments that you have to soak up and treasure. Good one Dad!

Now This is How You Care For Your Grandmother

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A fabulous video that demonstrates that even though people maybe different and from another generation – you can still find a way to make a connection and allow them to ‘FEEL’.

I love the way he gets on his knees to look her in the eyes. He totally adapts to his grandmother’s world and shares the moment with her.

He dances like no-one is watching and in a way that she can handle. He totally connects with her, and their faces and body language tell the story.

You can see this lad totally loves his grandmother and looks after her and completes the dance by carefully walking her back to her frame and making sure she is ok.

This is how you care for someone with dementia…you don’t care what anyone else thinks, you adapt to them, and you just go ahead and DO IT!

This is dementia….

Another ‘Feisty Fred’ Moment

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I was walking around the nursing home when I bumped into one of my favourite residents, 95yo ‘Feisty Fred’. He was all flustered and confused, so I asked him “What’s seems to be the problem Fred?”.

He looked at me with a really annoyed face and said “I just wanna have a damn wash, but all these bloody people are eating in my room!”

I thought to myself…”I gotta see this”….

I said “Ok Fred..I will sort it for you…show me to your room”.

With that, Max grabbed my hand and lead me straight into the packed main dining room!