Health of Dementia Carers: Second study released.

Dr Siobhan O'Dwyers' research on the well being of Dementia Carers is now available through this link.  We can't post it here due to copyright issues but i urge you to take a look if this is an area of interest to you.

Nearly 300,000 people in Australia, and more than 35 million worldwide*, have dementia. As a result of the combination of cognitive impairment and behavioural problems, caring for a person with dementia is acknowledged to be more burdensome than caring for a person with a physical disability according to Access Economics in 2009.

Here's a word from Dr O'Dwyer:

Thank-you again for your wonderful support of our research on family carers of people with dementia. There was an amazing response to the publication of our first paper in March and we are delighted to see that it has initiated some important conversations about suicide prevention.

Please see attached for the second study, which was published today in the journal Aging and Mental Health. It is based on interviews conducted with individual carers and focuses on suicide risk as well as resilience in the face of adversity.

*(Alzheimer’s Disease International, 2009; Australian Institute of Health and Welfare, 2012)

Posted in Carers, Uncategorized | Leave a comment

When Grief came to my town.

When grief came to my town
By Molly Carlile, Deathtalker

Almost two weeks ago, Jill Meagher was living in my town with her partner, a long way from their home in Ireland.
She went out one night with her friends and never came home.
Now Brunswick grieves. Those who knew Jill and those who didn’t. Old people, young people, Mum’s and Dad’s. The Baptist Church in Sydney Road is awash with flowers and candles and an Irish flag flies from the pedestrian crossing on the Blyth street corner where her lost moments were captured on CCTV. The ‘guerrilla knitters’ have bound all of the bollards along the street with brightly coloured yarn.
Last Saturday 30,000 people marched up Sydney Rd in her memory. Some cried, most were silent and all grieved.

The grieving is raw. People are sad and angry. Jill’s death is the focus of their distress, but there’s also a very strong underlying theme of our town somehow losing it’s innocence.
I can’t tell you how many times I’ve heard people say, “Things like this don’t happen in Brunswick!”
I’ve also heard “out of towners” say, “What are these people on about, it’s awful, but most of these people didn’t even know Jill Meagher”.
And they’re right, most of us didn’t.

So what made 30,000 people march? What made people come out of their homes and stand vigil outside the Baptist Church? What has made people like me, get in the car and drive to the Church in order to pay our respects?
Brunswick is an eclectic, inner city suburb. Culturally diverse, arty, alternative and parts of it very “well to do” and “upper middle income”. But Brunswick is also a place where there are lots of people “doing it tough” and yet diversity is embraced.
People talk to you up the street. Shop keepers call you by name. You know your neighbours and share the veggies you grow in the backyard.  Street folk aren’t ignored, passers by speak to them (also by name) and slip them a couple of bucks here and there. Difference is welcomed. That’s what drew my family and me to Brunswick. It’s like a country town, in the city.

It’s this sense of community that makes Brunswick a great place to live. The same sense of community that is outraged that “one of our own” was not safe on our streets.
The same sense of community that has driven the outpouring of support for Jill’s family. The people of Brunswick have realised that “our people” shouldn’t grieve alone.
I can’t help but wonder, in this age of urban isolation, where an old lady can die in her home and not be found for days, ‘cause no one missed her. In this age of secularism, where we’ve thrown away all of the meaningful rituals that support people in their grief when we discarded formalised religion, whether we’ve “thrown the baby out with the bathwater”. Grief rituals have evolved over the ages to enable people to express their distress, reflect on the life of the person they loved and find support from their community. Jill Meagher’s death was a tragedy, it should never have happened. I only hope that her legacy may be, that our communities grow stronger. That we learn the lessons that need to be learned. Grief rituals have become rituals over time, for a REASON. As communities, we need to re-engage with the reality of death, acknowledge the impact of a significant death on the people left behind and help grieving families to celebrate the life of the person they loved and support them in creating a sense of meaning in the face of their loss. That’s what a community is all about.

Molly Carlile
RN, FACN, FAICD, AFACHSM, MAIPC, MACA

International Journal of Palliative Nursing, Educator of the Year Award 2012
Arts and Health Australia Award for Health Promotion 2009
Churchill Fellow 2008

WrappingUp.com wants to know what you think and how you've found meaning in your grief. Go to our forum page now.

Web:          www.deathtalker.com
Facebook: https://www.facebook.com/thedeathtalker

Posted in Bereavement, Funeral, Memorial, Uncategorized | Tagged , , , , | 1 Comment

The ethics of prolonging life

When it's time for you to go, would you prefer to hang on for as long as possible, or die more quickly in the hope you and your family will be more comfortable?

These and other tough questions about estate planners' wishes, medical interventions, family dynamics and palliative care will be covered in a bioethics conference this weekend in Claremont, USA.

The Los Angeles Times reports that approaches to death vary greatly depending on your cultural background. And that cultural baggage can have a huge impact on quality of life at the end.

WrappingUp.com wants to know what you think. How will your culture, faith or family impact your end-of-life decisions?

 

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On carer health and wellbeing

Dr Siobhan O'Dwyer is a Research Fellow at Griffith University in Australia. Her team are currently conducting research on the physical and emotional wellbeing of carers. If you currently provide care for a family member, friend or spouse with dementia, they would like to invite you to participate in a survey about your experiences.

The survey is completely anonymous and all responses are kept confidential. It includes questions about you and your background, the person with dementia's background, the type of care you provide, and the effect that providing that care has had on your physical and mental health. The survey can be completed online, or in a paper-and-pencil format.

The survey is suitable for people who are caring at home, people who have placed the person with dementia into residential care, and people who have been recently bereaved (i.e. the person with dementia has passed away in the past two years). More than 400 carers across the country have already taken part in the study and the researchers are keen to ensure that even more carers are represented.

Dr O'Dwyer was herself a carer and she understands how precious your time is. She doesn't want this research to be another hassle in your life, so the online version of the survey allows you to save your responses and go back later to complete the rest. You can save and return as many times as you need.

Your contribution will help in the development programs and policies to better support vulnerable carers. The anonymous nature of the survey might also be an opportunity to express thoughts and feelings that you haven't been able to share with your friends or family.

The findings will be distributed to community and advocacy organisations, governments, and the media, who are expected to use the information to better support carers and raise community awareness of dementia. A summary of the results will also be posted here when the study is over.

Please note that this research has been approved by Griffith University's Human Research Ethics Committee. If you have any questions or concerns about the research, please feel free to contact Dr O'Dwyer directly on the details provided above. She is more than happy to discuss the research with you.

Posted in Palliative Care, Uncategorized | 2 Comments

Guest blog: 'the good in cancer'

Sally Collings is the author of Positive, a collection of stories about the ‘up side of cancer’. She writes about her experiences in this guest blog:-

When you lose someone you love to cancer, the idea that there may be some good to be found in that can be beyond belief. That was certainly how I felt after my mother died of lung cancer in 2003.

Mum died just four months after her diagnosis, and she was cared for at home until the final days of her life. She had told me that she didn’t want any long, drawn-out treatment postponing the inevitable, so in a way she had the end that she would have wished for.

Even so, I could see no true positives. Saying ‘it could have been worse’ was just making the best out of a tragic situation. So when I read that two out of three cancer survivors and their families consider something good has come out of their experience, my first reaction was disbelief. My second reaction was to think that if that was true, someone should write a book about it. My third reaction was to write that book.

I went looking for people who could honestly say that their lives were better because cancer had passed through. In the end, hundreds of people offering me their stories – more than I could do justice to in a single book. No two experiences were the same, but out of these diverse stories I found out three important things about positives and cancer.

1. The positives are not always immediate.
Healing the grief takes time

Sometimes good things don’t show through until years later. Co-founder of charity Trees for Mum, Deena Raphael, lost her mother to cancer when she was sixteen. After a period of restless travelling, searching for a destination that would ‘fix’ her, she says, ‘I learned to be alone and quiet with my own company … I began to accept myself.’

2. The positives are not always for you.
Olympian Raelene Boyle survived breast cancer

For Olympic athlete Raelene Boyle, ‘the positives were not just for me, they were for other people too.’ Having breast cancer opened the door for her to do good for a community that she loves through a range of charity work; ‘without my cancer, that would never have happened.’

3. The positives aren’t there all the time.
Grief makes for some dark days

Everyone has their dark days: interfaith minister and author Stephanie Dowrick says that for her it was a complicated journey, and there is no one formula for everyone. ‘When people are feeling only fear or rage, or great sadness or loss, it can be an added burden that they haven’t also turned into a hero or a saint overnight!’

All three of those elements are true for me. There are days still when I miss my mother terribly, and would give anything to have her here. But I have come to believe that my ‘positive’ is the book that I have written. It has taken some time to see it that way, but it is a thought that sustains me through those darker days: that by sharing stories we can cut through the sense of aloneness that can come with a cancer diagnosis.

Sally Collings is a Brisbane-based writer, editor and writing mentor.

Visit WrappingUp.com for more resources about dealing with grief and counselling.

Posted in Uncategorized | 2 Comments

How to plan for palliative care: infographic

More than 100,000 Australians each year seek information about palliative care issues like advance care planning and hospices.

Find the information you need at WrappingUp.com's palliative care pages and join the palliative care forum discussion.

How to plan for palliative care infographic

More information and referrals at WrappingUp.com's palliative care pages.

 

Posted in Estate planning, Palliative Care | Leave a comment

Changes at WrappingUp.com: June 2012

At WrappingUp.com we have been researching how people find our site and how they use it once they are there. As a result, we have made some changes.

Free just got freer

All of WrappingUp.com's great content and resources are now available for free to any visitor. That means there is now no need to sign in as a free member to read content, download our handy resources or watch our videos. Anyone can also now view the discussion forums but will need to log in or create a free profile before they can participate.

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Age can be cushioned by advice.

Noel Whittaker is a Co-Founder of Whittaker Macnaught Pty Ltd.

His advice is general in nature & readers should seek their own professional advice before making any financial decisions.

 

As the baby boomers age, more and more of their parents are faced with making choices about aged care.

It is an area that is full of traps, and one of the biggest mistakes made is the assumption that it is necessary to sell the family home to fund the move to aged care. Continue reading

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Seven Easy Steps To Writing A Eulogy

Mary Hickey is an urn designer and thought leader in the funeral industry in the United States.

She is co-founder of Renaissance Urn Company, in San Francisco http://www.nextgenmemorials.com

 

 

 

Step One: Gather information. Jot down as many personal notes about the deceased as possible. Look at photos. Flipping through photo albums may remind you of important qualities and memories of the person who died. Answer a few questions: What made your loved one truly happy? What inspired you to write this eulogy? What were your loved one's passions? What will you remember most about this person? Keep in mind that a eulogy is not a biography but more your personal thoughts and remembrances from your point of view. You may want to ask co-workers, friends and others for their stories and memories. You should see some repetition in your notes and this will lead to the main theme.

Posted in Bereavement, Funeral, Memorial | Tagged , , , , , | Leave a comment

Grief & Positive Ways Of Moving Through It

Grief is a normal human response to loss, therefore not to experience grief would be considered unnatural. Grief, however, does not always immediately follow an event that involves loss but may appear days after the event, due to shock, denial or simply being required to focus on other more important issues, such as safety or caring for others.

Continue reading

Posted in Bereavement | Tagged , , , , , , , , , | 5 Comments