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.
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
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!
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!
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….
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!
Bob has recently been enjoying some doodling and artwork after many months of not being engaged at all in this type of activity.
I know we have some Art Therapy people in our group and I was wondering if someone can read into the attached doodles.
Bob’s wife is called Jan, he had a friend recently visit called Vic. He also appears to write $ signs, plenty of circles and what looks like guitar strings?
Anyway… Thought I would put this out there and see what happens:-)
Thanks
PS – I believe the flower and smiley face may have been drawn by my sister.
Today I went to a rally to support the saving of the Queen Elizabeth Hospital. I am normally the last person to get involved in politics or rallies. Having said that – I have toured the wards that are about to be shut down and know first hand how it will impact on our aged community. They just don’t know it yet.
We are about to lose a world class Geriatric unit and it’s gardens (GEM) and this means the dementia patients will now be forced into general medical beds which could be next to YOU. Dementia patients can have violent and inappropriate behaviours and require security teams on multiple occasions.
The public are generally unaware that all our geriatric wards are being removed from the RAH and downsized at the QEH. Cardiac and other wards are also impacted. Nick Xenophon and Prof Warren Jones were really supportive of the rally and were calling for action.
To see this story in detail watch your favourite news on tv ( any channel – they were all there) .
*ABC News is at 7pm if you missed the others.
https://m.facebook.com/SavetheQEH/
Today I was involved in an international webinar with Rhonda Nay (La Trobe University) about SEX. This subject rarely comes up about people with dementia as it considered a taboo topic. I actually found the webinar to be very interesting indeed. I want to convey what I learnt in a simple and respectful manner so I thought I would share some points and stats.
People aged 80 -102:
30% females and 63% males have intercourse
10% females and 29% males have it often
Health professionals rarely talk about sex issues with their older patients.
Sexually aggressive behaviour with people with dementia rarely occurs.
Many of the concerns in regard to sex and people with dementia relate to ‘consent’ and ‘duty of care’.
“It’s not about our views…but their civil rights. We’re here to create an environment to allow grown ups to do what grown ups do.” (Bonfazi 2000,24)
Drugs such as anti psychotics, anti depressants etc have a negative impact on sex.
I asked the following question:
Q: “What do you do if you walk in on a resident having sex with another resident?
A: If the residents are happy….walk out, close the door and let them get on with it!
There is no need to report residents having sex if everyone is happy.
Carers need to have a sense of humour with showering and avoid potential ‘awkward’ situations.
People rarely have showers with other people in normal situations (in the cubicle) hence a person with dementia may confuse having a shower with a carer involved, as ‘sexual’.
Carers need to be wary of their language with residents as it may be misinterpreted.
example1: “C’mon John…Let’s have a shower together” (this may be taken as ‘sexual’ by resident)
example 2: “C’mon John …I will help you have a shower” (less chance of misinterpretation)
**conversations about sexuality and policies should be had with nursing home management PRIOR to them entering the aged care facility…this will avoid any problems in the future.
As carers we need to monitor body language very closely to ensure the person is ‘happy’ with situations. They may not be able to verbalise things, but they can certainly express themselves in other ways to let us know how they feel.
Fact: A female carer has filed a sexual harassment suit against a man with dementia for kissing the back of her hand. (In care situations – We need to keep things in perspective as well)…hmmm
I talked a few weeks back about a resident in the nursing home called ‘Barney’ who loves classical music. He had escalating behaviours but was able to be calmed by changing his environment with classical music.
Today at the nursing home every resident was unable to watch television due to building works and I believe the hot water was also affected. I decided to visit the home this afternoon to help with the residents as I thought they may be bored and need some extra lifestyle activities.
When I turned up the entire place was “angry” with residents protesting and demanding to know why they were in the building. Some refused to participate in activities until they were given a good reason why they were there, and were encouraging others to fire up. The lifestyle carer had no control of the group, as she was difficult to understand (due to her struggling with english) and was frustrated and appearing ‘snappy’ with residents. The residents could feel her tension and were reacting accordingly and began arguing . I took over some of the ladies and we played cards, and I whipped up a very simple game of ‘snap’.
Resident Barney looked lost and distant and was aimlessly walking in circles. I decided to once again change his environment and walked him back to his room. I knew he loved his music so I sat him in his comfy chair and asked him if he would like his favourite classical music played? He smiled and said “yes please”.
I then could not get his stereo to work and after several minutes was struggling to get any music to play. I was determined to get to the bottom of the problem. I pressed nearly every button with no success. In desperation I then wiggled the speaker wires and a short burst of sound was heard…SUCCESS! I re- set the wiring in the speakers and the music poured out.
Barney instantly closed his eyes…smiled…and said “isn’t Beethoven amazing?”. He shook my hand and I left him to his music. My big question is ” how long was his music system not working for?”. I would suspect days (if not weeks) as all the buttons were on with no sound coming out.
If music is Barney’s No. 1 passion, then as carers we need to be switched on to ensure that everything is in working order for him when it comes to his music. I could tell carers had tried to turn the music system on without success, but had given up. Did someone report it to maintenance or family members? Did anyone think that maybe Barney may no longer have music in his daily life until this is fixed?
These small things may seem insignificant at the time as it is not an ADL, but I want to highlight that televisions and music systems are often the most treasured possessions in people’s lives and we should ensure they come on each morning to set the right mood and tone for each day. This helps us care for them better…..
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