Glen’s Story: “I am the principal carer for my wife, Carole.”

Hi Palliverse folk.

In line with our #PALLANZ Tweetchat, this month Palliverse takes a special focus on Carers. As part of this, we are pleased to welcome a new contributor to Palliverse, Glen Davis. Glen lives in regional Victoria. He is husband, advocate, and principal carer for his wife, Carole, now in the final stage of dementia. He also is father to 3 children, and has 5 grandkids.

I was fortunate to connect with Glen when he contacted us to contribute his thoughts to tomorrow’s Tweetchat. For me, Glen’s story powerfully resonates many feelings and realities experienced by carers in our community. He shares with us several resources he’s  discovered that have been personally influential. Although Glen believes the palliative care community understands carers better than most medical disciplines, his story highlights the many gaps that exist in the way our carers are supported.

Hope you can learn from Glen’s story and join us tomorrow at #PALLANZ for a candid discussion of how we provide “Care for the Carers”.

Anna (@AnnaLCollins


BECOMING A CARER

Pictured: Glen with his wife Carole, 2007

Pictured: Glen with his wife Carole, 2007

Who do you care for and how did you come to be a carer?

I am the principal carer for my wife, Carole. I retired from my work earlier than planned because Carole was needing more help at home. Her symptoms then were anxiety, discontent and some trouble finding her words. Spending more time with her, I soon learned there were some tasks she could no longer do. She had been a crack typist and that had gone. Her sister and brother-in-law (a nurse and a doctor) noticed symptoms they likened to Alzheimer’s disease, so we started investigating intensively. It took over a year before, in 2011, we reached a diagnosis of fronto temporal dementia. That is a degenerative disease in which cognition, speech and eventually mobility decline progressively as a result of shrinking of the brain. It is a fatal disease with no cure.

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Modern dying from a doctor’s perspective

 

A thoughtful article regarding our modern attitudes to dying by Dr Craig Bowron, an internist (i.e. physician in internal medicine for us Down Under, or general medicine consultant)

Opting to try all forms of medical treatment and procedures to assuage this guilt is also emotional life insurance: When their loved one does die, family members can tell themselves, “We did everything we could for Mom.”

In my experience, this is a stronger inclination than the equally valid (and perhaps more honest) admission that “we sure put Dad through the wringer those last few months.”

I agree with Dr Bowron, that sometimes we may not consider the cost to the person (not the financial cost, other costs) of being able to say, “We did everything we could.”

What do you think? Does this apply where you are?

Regards, Sonia

PS Thanks to Tegan, a social worker I work with, for pointing me to this article.

“A Stitch in Time: Women’s Journeys Towards Breast Cancer Prevention”

 Moonshine Movies has recently launched a crowd funding campaign for “A Stitch in Time: Women’s Journeys Towards Breast Cancer Prevention”

https://australianculturalfund.org.au/projects/a-stitch-in-time/

You may like to take a look if you are interested in the issue preventing women who are at high risk developing breast cancer, and high risk women’s experience of care.

Regards, sonia

End of life caring a women’s workforce

Ed:  As you may know this month our #pallanz tweetchat in partnership with PCA is focused on Caring for the Carers.  In this article Tessa Morgan, Merryn Gott, and Lisa Williams explore the experience and care needs of women who are palliative carers.  This piece is part of an ongoing series of blog articles entitled “Gender in palliative care” .

crying girl

It doesn’t take an expert to conclude that the palliative care workforce is dominated by women. Globally, women make up the vast majority of the paid palliative care workforce. Ninety percent of the nurses and health care assistants involved with end of life care are women and there are a higher proportion of women in Palliative Medicine than in most other specialities. Over half of Palliative Medicine physicians in Australia, for example, are women. This is in addition to the vast (and ever-increasing) number of women who provide unpaid care for their dying relatives. It is hardly a stretch, then, to regard palliative care as essentially a woman’s domain. Indeed, with the rise in population of the oldest-old, the need for more people – presumably women – to provide palliative care in hospice, aged care and community settings will continue to grow.

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#PALLANZ Tweetchat: Caring for the Carers

Join our upcoming #PallANZ Tweetchat on the 28 April 2016

Moderated by @AnnaLCollins

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‘Carers’ are those of us in our community providing informal, unpaid care to someone living with serious illness, disability, mental illness or frailty. Carers play an indispensable role in providing palliative care in our community.

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Call for abstracts – 2016 AAG Conference #AAGConf16

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While we’re on the subject of conferences being held in Canberra this year, the Australian Association of Gerontology (AAG) are extending the closing date for abstract submissions for their November conference, until Friday 29th April 2016.

The conference theme is “Capitalising on the Ageing Dividend: Reimagining Our Future” and submissions are welcome on a variety of ageing-related topics, including palliative care and end-of-life care.

What’s cool about the abstract submissions? Authors are asked to submit a 100-character “Tweetable” along with their abstract.

Visit the AAG website for more details on the conference and abstract submissions.

 

Photo: ‘The National Library of Australia and the Canberra Balloon Festival, March 2011‘ by Grey Nomad Australia, licensed under CC BY 2.0 Generic.

Call for Abstracts: PCNA Conference 2016

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Hurry – Abstract submission closes in just 2 weeks !

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Spirituality and self care in palliative care practice

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Photo by Miran Rijavec via flickr

Dr David Brumley is a palliative care specialist with extensive experience working in regional Victoria and across South East Asia. Here he reflects on the importance of spirituality and self care in palliative care practice.

Dr Doug Bridge ran a Spirituality Workshop last September in Melbourne, as part of the 2015 Palliative Care Australia conference. To my knowledge this was the first such workshop associated with a palliative care conference – in Australia, at least. Unsurprisingly, it was very well received. Thanks Doug.

The existence of Spirit and the possibility of spiritual distress and suffering seems unarguable. If spirituality is the ground of our being, spiritual suffering could be seen as our alienation from that.  With variations, many definitions observe the four aspects of spirituality to include relationship with self, others, environment and the transcendent. Such descriptions might allow acceptance by both the religious and atheist. The literature refers to many ways to measure these aspects of spirituality. For example, John Fisher developed SHALOM, a questionnaire that examines these four areas. We applied this questionnaire to members of the Australian and New Zealand Society of Palliative Medicine (ANZSPM) in 2007-8. Many surveyed doctors didn’t feel they had the capacity to help patients in the domains of spirit.

Dying people suffer spiritual distress, and doctors might sometimes be best placed to identify and provide, at the least, initial help. Our own spiritual wellbeing is also needed if we are to care for them and for ourselves and avoid personal distress and injury. The spiritual health of the patients we care for is our responsibility. So is our own. I wonder if they are two sides of the same coin? Ralph Waldo Emerson thought so: “It is one of the most beautiful compensations of this life that no man can sincerely try to help another without helping himself.”

Doctors need to be able to recognise and at least provide initial care of spiritual distress. Do we know what it looks like? Where are the boundaries between psychology and spirituality? How does a doctor approach the question of spiritual assessment of a patient? How would a model of spiritual care be different, for example, from existential psychotherapy? How might it be useful? What are the required skills for such care? What should we take on, and when and to whom should we make referrals? I don’t think we have developed adequate answers to these questions.

Should a structured approach to self-care include a spiritual component? What advantage would that have for us? Should our College have something to say to trainees about spiritual care of others and ourselves? The Royal College of Psychiatrists believes so,  but not everybody. A recent Twitteration on the issue of mindfulness in schools in the USA suggested that many people believed that meditation is inherently a practice of other religions. Don’t look inside, for goodness sake!

As a group we know we must be high-level communicators. Should we also aim for an overt training in talking about what life means, even if it is about to cease, or should we simply follow Osler, and “minister to our patients through warm human contact”? Is that enough? I don’t think so.

I think therefore I am? – Palliative Care for Chinese People: An insider’s look

Hiya folks,

I’m presenting at Grand Round tomorrow on the above subject.

Pasted below are the Tipsheets I prepared as a take-away for the presentation.

At the bottom is a link for printable PDF versions.

Enjoy, James.

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2Chinese Culture Tipsheet PDF Version

Bisphosphonates and denosumab good for bone pain…. right?

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Wrong!

The folk from Cochrane asked this question. ‘In adult patients with metastatic bone pain, what is the evidence that bisphosphonates and denosumab are effective and safe in controlling pain?’

http://www.ncbi.nlm.nih.gov/pubmed/27006430

They found that evidence to support an analgesic role for bisphosphonates and denosumab is weak. Bisphosphonates and denosumab appear to be beneficial in preventing pain by delaying the onset of bone pain rather than by producing an analgesic effect per se.

Sonia