Author: Brett

Doodling With Dementia

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Now for something completely different. I was thumbing through an old notepad that my dad used to use at work and I found some of his doodles. What is really interesting is that it illustrates Dad trying to test himself with the alphabet while playing a game of hangman. It is almost juvenile with what he is drawing and it shows what he is thinking about. He spent many decades at Port Elliot and his father was involved in Nippers and Life Saving. The fact he is naming the ‘motor’ on the boat is showing his thought processes. There are small grammatical and spelling mistakes which Dad simply would not make normally without dementia. I thought these were just another insight into perhaps signs of early dementia that you may find interesting.

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TOP 10 – Things I Learnt About Funerals

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1. SYMPATHY CARDS ARE COOL

I am normally ‘anti-cards’ for most occasions, as I never know what to write (and find this stressful) and would rather give people a block of chocolate for the $6 the card costs. However after experiencing the power of receiving many funeral cards I want to make a big exception. I found the sympathy cards we received both comforting and a valuable part of the grieving process.

2. DONATIONS ARE A GREAT ALTERNATIVE TO FLOWERS

Flowers are awesome, but they don’t last long and there is only so many bunches you can take on. It is certainly a personal choice but a donation to a worthy charity close to your heart feels great and makes a difference to more people.

3. PRINT DON’T SIGN

The ‘attendance book’ is really important because if you are a family member at a funeral you are facing the front of the chapel and can’t tell who is behind you. I loved reading the book the next day and getting a whole heap of surprises as to who was there. I asked the funeral directors to ensure people printed their names on the book because if we can’t read the signature, there is not much point.

4. TAKE TIME OUT

The funeral preparations can be hard work, intense and daunting. Ours was no exception and on several occasions the family would pair off and get some time away from each other. It may be only for an hour for a cup of coffee, or for a beer and a snitty at the pub, but the break certainly relieves the tension.

5. CAPTURE THE MOMENT

The video we have from the funeral directors is amazing. It captured absolutely everything that happened in the chapel. The audio was incredibly clear and captured the essence of the speeches. It is awesome to get an audience member perspective of the same event. You have already seen the amazing photos captured, and a mix of colour and black and white images is really powerful.

6. IT’S OK TO LAUGH

Our funeral was a real celebration and we wanted to keep things ‘real’. We did not confer on our speeches or what we were going to do at certain times of the ceremony. We just let it happen and were ourselves. We had many fun times as a family and this is what we wanted to share with our relatives, friends and others.People probably expected me to talk extensively about dementia, which I didn’t because I thought it was important to celebrate Dad’s entire life and give equal weight to each chapter. I am told people cried, laughed and generally felt good, and most importantly learnt new things about Dad…a perfect funeral!

7. WAKE ME UP BEFORE YOU GO-GO

The wake is a really therapeutic part of the funeral process. I found it to be a massive mood shift from sadness to happiness for everyone who attended.It was really frustrating straight after the funeral when I greeted everyone for the first time, as all I had time to do was say “Hi”, give them a hug and then smoothly shift them along so I could greet the next person (which feels really rude). The wake at a pub (or family home) allows you to socialize and share stories and spend a lot more time with people, many who may have come long distances or even from interstate. It is really important to have the pub owners on side and make your event their priority….it makes a difference.

8. THERE IS NO ‘I’ IN TEAM

Teamwork is critical in preparing for a funeral. This is not the time to become stubborn and inflexible, it is more-so about compromise for a better overall result. We created a home base ‘Mum’s dining room table’ and kept all our computers, photos, music, notes and cards there all the time. My brother and I stayed over the entire week at Mum’s to support her, as well as get more things done as fast as we could. Our family aim for perfection with everything we do, and this funeral was no exception. We took the hard road and created videos which involved professional sound recording studios, creative video editing from my son Zak, we created custom funeral cards, and invented our own personalized funeral traditions. This was all done on a ridiculous time line which saw us waking up at 5am each day and working on things till midnight.

9. CREATE YOUR OWN ‘FLAVOUR’

It is really important to capture the essence of the person who has passed away and also the dynamic of the family (if it is positive). We had one situation where we were concerned about the pressure that would be heaped on the ‘grandchildren’ to speak or perform songs at the funeral. So we came up with an idea of creating our own family video complete with interviews of each child in their own favourite environment eg playing basketball, or on a trampoline. This made the kids feel comfortable as they talked into the camera and explained what their Papa meant to them. The result was amazing with a beautiful memory that can be watched by everyone forever, and most importantly the grand kids were well represented. (I might post this 2 minute video later to show you all). We also designed our own modern customized funeral card which was simple and stylish and ‘set the tone’ for the funeral. (the expected ‘old fashioned’ round photo with blurred edges on a white card was not for us).

10. LEAVE NOTHING IN THE TANK

You only have one shot at a funeral for a person who has passed away. It is about them (and not you) and it is vital to honour their life, their achievements and bring out the positives.Funerals are not the place to air family rifts and list bad points about the person (especially as they do not have right of reply). Funerals are incredibly intense but also super rewarding and a very cathartic part of the grieving process. Leave nothing in the tank and have no regrets. A funeral can actually be one of the most memorable times of your life and also be a great teaching ground for the grandchildren where they can learn about grieving, respect, meeting people, public speaking, humility, dignity, sadness, happiness, teamwork, and most importantly how important their family is.

A Tough But Rewarding Presentation Today

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Recently I was asked to give a speech to celebrate the opening of the re-development at  ‘The Lodge’ Aged Care Facility. There were 120 residents, carers, nurses and management in attendance and the event was ‘live streamed’ into the Memory support Units and other Eldercare sites. I love the way they are now using technology to include all the residents that cannot attend these events.

It was a particularly difficult and emotional event for me as it was the first time I have been back there since Dad passed away. Seeing the familiar faces in the audience re-ignited that connection, but also added to the pressure.There was a lady playing the harp as well which was fabulous. Once again I finished writing my speech at 4.30am this morning, but luckily got the job done on the day.

The Eldercare CEO Jane Pickering gave me a very generous and overwhelming introduction speech and this almost floored me before I spoke. I was honoured to cut the ribbon with 96 yo resident ‘Beryl’ who also spoke, and did a sterling job. The gold scissors were huge but we did it together.

The theme of my presentation was that the families have to now become part of the aged care process and the lines of communication with staff need to remain open. I also highlighted the value of our older people and that they all deserve dignity and respect as they have earnt this. The speech was recorded so may be able to post one day.

Nice to now have a break from speeches and rest.

Thanks

Funeral Service for Bob Partington

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The funeral for Bob Partington will be conducted in the chapel at:

Charles Berry & Sons Funeral Home

204 Magill Road, Norwood SA  5067

Saturday 11 February

10am

The family also invite you to continue your conversations at the ROBIN HOOD HOTEL  – 315 Portrush Rd, Norwood – from 12 noon onwards.

In lieu of floral tributes a donation can be made to the NIGHTINGALE NURSES (a division of Alzheimer’s Australia SA). This is a valuable self funded service for people with dementia.

Their aim is to have a palliative nurse for every person diagnosed.

To donate please click below:

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Peace At Last for Bob Partington

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Dear Dementia Downunder readers,

I wanted to share the news that Bob has finally passed away and is at peace.

Our family are comforted by your amazing support and thoughts. You have been awesome.

I will probably say a few more thoughts when I have had a chance to reflect. However I wanted you all to know ASAP that the dementia rollercoaster ride is over for Dad and we are super proud of him.

I will look after our family and be blogging again soon.

We are very relieved now and thanks once again.

Brett & Family

Palliative Care Blog

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*warning – this is a raw and detailed post about palliative care . Please consider before reading. This is not normally a topic that is made public however I am doing so in ‘real time’ to allow people to feel what we feel to hopefully prepare or help others.

Hi Everyone,

Just wanted to update you on where we are at with Bob. We have continued to be by his side as we are now almost through our 3rd nite. We have camped within his room and just watched and waited.

A lot has changed in the last 24 hours with him both physically and with his breathing. We have endured a power blackout where the care staff had to race around and unplug all the air beds in many rooms to ensure they did not deflate. Mum and I had to attend to a female resident during the. blackout as she was disturbing another very frail lady who was asleep in her bed. We had to toilet the lady, calm each of them down and return her to her room in the dark.

Bob has been really labouring and it is so painful to watch. We feel so helpless as all we can do is rub his head, hold his hand, talk to him or maybe wipe him down with a flannel. Listening to breathing patterns is so hard to do. Bob has a pacemaker, which we can almost feel re-igniting his heart after long extended pauses. The pacemaker is extending the ‘end of life’ process and making this more difficult. This has taken away the ability for Dad to pass away on his terms.

Pain medication is constantly monitored via a Niki Pump ( syringe driver) which is a lockable battery operated pain management device that is attached to the person and stored in a pouch. The device administers medications such as Morphine, Midazolam. Maxalon and Buscopan in a constant and measured fashion.

You become very educated very quickly in palliative care and it is amazing to watch the completely different roles required of the care staff and nursing staff. It makes changing a wet bed or a pad almost insignificant when compared to what is required both emotionally and physically during the final palliative stage.

Care staff have to re-position Bob every 2 hours and this is really taxing on him. Our aim is to give him maximum comfort and we position pillows for best pain management.

The care staff are visibly affected as they have become very attached to Bob, and many mention his trademark smile. One nurse tells us of how she enjoys looking after him and kisses him on the forehead each time she has checked on him.

Bob’s Dignity and wellbeing is the overwhelming concern we have at this time. We have had a myriad of emotions over the last 3 days and we have switched from hanging on to him, to silently pleading for him to be able to ‘go’ in peace. We have tried everything within our power to allow him to pass, without success. We are tired, frustrated, stressed and sad all at the same time. We are braced for anything and you need every ounce of strength and willpower to deal with this at such close range. Dad deserves our love and loyalty and we are hanging in there for him no matter what.

This is a hard post to write and really raw, but I need to highlight how challenging and testing this time is for our family. It would have been nice for Dad to just peacefully slip away as often happens with others, but his entire dementia journey has been one of extremes, and once again he is experiencing the most difficult of conditions. Our family position has never been about ‘what is best for us’ but moreso ‘ what is best for Dad’. This is still the case and we are unwavering, but Dad needs to be free from his pain.

We wait and hope…

Palliative Care – Positively Embracing The Unknown

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Sorry for the delay in writing but we have been experiencing a very different journey in the palliative stage, which like the rest of our dementia story is just like a rollercoaster ride (just a much slower paced one). I am inspired to write as I have experienced so much in the last 48 hours and I want to share what I have learnt and how I feel. Bob is still with us, but it appears it won’t be long before he is at peace. It seems surreal to be writing this blog but also feels like I am opening up a conversation about an area of dementia/aged care that many DD members may be fearing down the track, and/or may know very little about.

I often question myself when writing blogs “is this appropriate to make public?” or “is this pic too graphic?”. To answer these questions I resort to my conscience and ask myself “will this make a difference to a family?”… If the answer is ‘yes’, I will share it and deal with the consequences. This blog is no exception.

It all started around the middle of the week when we noticed a sharp decline in Bob’s condition. We knew instantly that he was preparing to go. My Mum intuitively called for my brother, Jason, to fly in from Sydney to join the family at Bob’s bedside. Amazingly as we all came together in the room Bob started to really labour with his breathing, and it was confronting. It was a very pivotal moment in our journey as we hugged, we cried and we dealt with Dad’s condition. I felt the momentum shift with Dad and could feel he was ‘checking out’ at this point. What was overwhelmingly comforting was that Jason made it to his bedside in time and allowed us to be with Dad as a family during this transition. It was also a galvanizing experience where we committed to the palliative stage the ‘Partington way’.

We had many long conversations across the last 48 hours about “what is best for Dad?” covering every aspect of his palliative care. By having this approach it made making decisions easier. When you aim for the absolute highest standards with anything, there won’t be any regrets. As a family unit we discussed at length Dad’s body positioning in the bed. He has to be turned every two hours by the carers to avoid pressures sores (red marks). We also considered Bob’s breathing, his chest congestion, his personal preference of which side he sleeps on, his current pain level, his dignity, his music, his lighting, the air temperature, does he need blankets?, the angle of the bed, positioning cushions for best pain relief, and so much more.

This stage seems to be going in ‘slow motion’ and we are so in tune with Dad’s breathing that we are counting the seconds between breaths (it can be up to 10 -20 seconds). The breaths become shallow, and we notice many other small changes across his body. There are many jolts and jerks with Dad’s limbs which take a while to get used to. The more time we spend with him, the more we adapt to his natural rhythms and become in synch with him.

The minutes tick away slowly as 5 people share the oxygen in the small room. It is a busy space but also exciting when Dad smiles or grips our hand. It can also be intense, sad, reflective, lonely, and a whole heap of other emotions. There has also been some light hearted moments as well which I will share at a later date. Our family have been there the whole time and we have each gained a few minutes of sleep here and there (except Mum who has now been awake for 48 hours). To see her loyalty and commitment to Dad is downright inspiring and her strength and character has certainly been on display. I am pleased to say that Mum is now comfortable enough to step away for a well-deserved rest knowing we have done everything possible for Dad. We are taking shifts of sitting with Dad (one person at a time) and just being there with him, holding his hand and having some time alone with him. I am sure each of us will be having personal conversations with him that will be treasured. We are told that ‘hearing’ is the very last thing to go so we are using this to advantage and ensuring he leaves us with our inner most thoughts and some nice music in his ears.

The nursing staff and care staff have been amazing and rallied around us with cups of tea, sandwiches, cordial and plenty of support and comfort. I hope this blog sheds some positive light on palliative care and what can be gained by embracing the stage. We are tired but certainly doing ok. I hope you understand that I am sharing this blog to help others as well as being cathartic for me. When the time comes for Dad to pass away, we will be extremely sad, but also relieved for him. I also want to acknowledge that palliative care is a very personal thing and every family can and will handle it differently. Every family has a unique dynamic and bond and there is no right or wrong way to approach ‘end of life’. Can I also suggest that when families are faced with similar situations that you do what is right for you and your loved one.

Once again I cannot say enough how comforting your comments and thoughts have been for me. I actually feel guilty to have so much support outside our family unit. I am proud of Dad and proud of our family, and I am glad that you are able to share in some of our times with dementia. Thanks for everything and I will write more soon.

Thanks Brett

A Time When Small Things Matter

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Today’s blog is one I am doing with a tinge of sadness, but also with a whole mix of other emotions. As a family we are at a really tough time in our dementia journey and are ‘savouring the small things’ with Bob. Dad has declined further and has had multiple TIA’s (mini strokes) of late and is now bed bound and receiving pain management as he screams out every time he is moved. His legs are locked open (like a frog’s legs) and we suspect a hip fracture even though he has had no falls. So how can this happen?…we will never know, but I would suspect it happened in the lifter.

Our family is starting to rally and we are flying in my brother from Sydney to spend ‘quality time’ with Dad. I am personally watching for every smile and any acknowledgement Dad can give me. He does a little ‘finger flutter’ thing when I hold his hand which is him telling me he is ‘ok’ and enjoying the song I am playing for him (we run his favourite music 24/7). It is amazing how ‘finely tuned’ we have become and our conversations have become hand and eye movements, but we know exactly what we are feeling.

An interesting thing I wanted to share with you is that our family have noticed a ‘distinct shift’ in the demeanour of the carers and nursing staff. They are ‘ultra-sensitive’ to Bob’s ever changing symptoms, have increased their caring regimes, and also shown a new tenderness and kindness towards both Bob and our family. We are witnessing people who actually ‘feel’ their residents change, and they are actually preparing our family for what they know is coming. It is both incredibly comforting and amazing to watch ‘human nature’ naturally unfold.

The staff reactions and their body language are the key indicators I personally use to gauge where we are at with Bob’s decline. They are reporting to us with any new symptoms (no matter how small), offering support, rubbing our shoulders and giving us hugs without notice. This is the ‘real’ side of people close to the action, who are emotionally invested in the resident. The nursing home staff are impacted just like the family members because in many cases they become the residents’ ‘new family’ as they are the ones caring for the person on a day to day basis. We are very lucky to have such kind staff who have looked after Dad so well across a long period of time.

I had a fabulous chat with a long time carer yesterday who opened up to me and shared her thoughts on families. She paid us the ultimate compliment by saying “I really love families like yours, you are so involved and show so much care and compassion and really work in well with the carers”. She also said “ us carers have to cop so much abuse from family members who may have sibling rivalry, jaded views of aged care, their own mental health issues and no idea what care we actually provide for their loved one.” I totally understood what she was saying as the family often only gets a 15 minute ‘snapshot’ of the care offered and can form very misguided views.

The carer talked about how our family’s journey in aged care should be the ‘new standard’ for all families, and should be a collaborative team effort. ….this was music to my ears as it was exactly what I tell people when I do my talks. The carer finished the chat by saying how even though they only earn $20/hour they have personally bought clothes for residents from the Salvos because the families refuse to bring any in. Some carers buy better quality shavers (and keep them in their car) to offer a smoother shaving experience to the resident. She then explained how she has gone home in tears on so many occasions because of how she has been impacted by what has happened to the residents.

This won’t be the last time I say this to the carers (personal and lifestyle), nurses, cleaners, cooking staff, maintenance guys, volunteers and aged care management team but ……“Thank you”…..

New resource to empower people living with dementia and carers

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A new consumer guide that sets out the level of care that people with dementia and their carers and families should expect is now available.

One of the first of its kind, the Consumer Companion Guide – Diagnosis, treatment and care for people with dementia, was developed by people living with dementia, carers, researchers and clinicians from the National Health and Medical Research Council’s Cognitive Decline Partnership Centre (CDPD).

Dr Kate Laver, NHMRC-ARC Dementia Research Development Fellow at the Department of Rehabilitation, Aged and Extended Care Faculty of Medicine, Nursing and Health Sciences at Flinders University is the lead co-ordinator of the Consumer Companion Guide.

Dr Kate Laver was also involved in the development of the Clinical Practice Guidelines and Principles of Care for People with Dementia, 2016 which were launched in March this year by the Health Minister, Sussan Ley, at the Alzheimer’s Australia National Consumer Summit.

“The objective of this project was to develop a companion guide for members of the public to complement the Clinical Practice Guidelines to ensure that the information in the Guidelines is more accessible to those who need it most, regardless of their varied levels of health literacy,” Dr Laver said.

The Consumer Companion Guide includes information about the Principles of Dignity of Care, including:

  1. Zero tolerance of all forms of abuse
  2. Support people with the same respect you would want for yourself or a member of your family
  3. Treat each person as an individual by offering a personalised service
  4. Enable people to maintain the maximum possible level of independence, choice and control.
  5. Listen and support people to express their needs
  6. Respect people’s privacy
  7. Ensure people feel able to complain without fear of retribution
  8. Engage with family members and carers as care partners
  9. Assist people to maintain confidence and positive self-esteem
  10. Act to alleviate people’s loneliness and isolation

 

Alzheimer’s Australia National President Professor Graeme Samuel AC said consumers played a key role in the development of the Consumer Companion Guide to ensure the document is relevant to the needs of people living with dementia and their carers.

“These guidelines are an example of the significant impact that can be achieved when consumers partner with clinicians and researchers,” Professor Graeme Samuel AC said.

Dr Jane Thompson who cared for her husband who died of Alzheimer’s disease in 2007 was one of the five consumer representatives on the collaborative working group.

“There were no Australian clinical practice guidelines for dementia when I was caring for my husband, let alone versions summarising the information in an accessible form,” Dr Thompson said.

“I know I would have benefited enormously from having had access to such an up-to-date summary of the best available evidence.

“I welcome the availability of the Consumer Companion Guide and hope that it will improve the quality of care for those people currently living with dementia, their carers and families.”

A copy of the Guide can be found here https://www.fightdementia.org.au/national/about-dementia-and-memory-loss/resources/clinical-practice-guidelines

The development of the Clinical Practice Guidelines and the Consumer Companion Guide were funded through the NHMRC Partnership Centre: Dealing with Cognitive and Related Functional Decline in Older People.

Source: Alzheimers Australia website