Caring for a loved one?

Caring for a loved one, I am. See my story here – https://www.carergateway.gov.au/rachels-story

Are you caring for a loved one?

Caregivers are the family members and friends who help their loved ones with a range of tasks from paying bills or driving to doctors, to personal care such as bathing and dressing, to medical care such as administering medication.

“Caregivers often find themselves in this role without preparation or education and all while juggling their own lives,” said United Way Caregivers Coalition Manager Robin Ennis. “Caregivers within our communities should have access to the supports and resources they need to sustain themselves as caregivers.”

Resources help you care for your loved one

Resources help unpaid caregivers who assist loved ones of any age who are ill, frail or living with a disability or mental illness. Access to explore topics that provide family caregivers with valuable information from local experts and connections to local resources is imperative.

Investigate topics to optimise health whilst caring :

Here is the United Way Caregivers Coalition’s “Pathways for Caregivers” – This free guide contains information, ideas and support for providing care for loved ones. There are separate sections on aging, disabilities, and mental health issues. The guide is available online at www.UnitedWayNNJ.org/CaregiverTools. While written to assist caregivers in the New Jersey (USA) region, much of the contents are applicable to caregivers throughout New Jersey and beyond!

In Australia see CarersNSW

Caring for a loved one.

Being aware of existing resources, even if provided elsewhere, can be beneficial as it initiates the thinking the same resources may be available near you.

Last but not least – self care is pivotal to carer health.

Look after yourself so that you can look after others optimally.

Read – Self care to ensure you remain robust physically and mentally.

Read – Self care – Self care can be 5 minutes with a cup of tea or a date with the hairdresser either way we need to spend a moment on ourselves to ensure we are robust and healthy to meet the demands of our varied roles.

Caring for a loved one?
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Inspirational Women Online Showcase 2019

Inspirational Women Online Showcase 2019
I aim to raise awareness through this online showcase enabling others to positively identify as carers.   

Inspirational Women Online Showcase

I was asked by CarersNSW to make a short video showcasing myself as a carer, aiming to raise awareness of my role, enabling others to positively identify as carers.

The home-made video details my story, highlighting Emily and my health and well-being as individuals. Presenting my book as an achievement within my caring journey. And ultimately inspiring women and girls to see caring as a positive role.

Inspirational Women Online Showcase – Rachel

The Inspirational Women Online Showcase videos touch on the three focus areas of the NSW Women’s Strategy: My video is in – participation and empowerment.

Inspirational Women Online Showcase – Rachel

Hi. I’m Rachel James and I’m a carer.

My daughter, Emily, had a snowboarding accident that rendered her quadriplegic in 2012. Emily’s spinal cord injury was devastating as it changed everything for her, but it also changed my life as I suddenly became her everyday carer.

  • My attitude has been to positively reinforce Emily’s mental strength; she ceased to walk but remains incredibly capable.
  • My task has been to reassure Emily that she can adapt without halting her living life to the full.

My caring role includes:

  • Being a facilitator.
  • I assist and enable Emily.
  • I ensure she has choices, opportunities and makes her own decisions.

I don’t relish Emily being defined by her accident, and I see myself holistically as a wife, mother, sister, daughter, a working registered nurse, a volunteer at lifeline….. AND a carer. 

I retain a clear sense of self, independent with a caring aspect to my life and ensure I practice self care.

I have reflected on what I overcame and learnt during the process of accepting my role as an everyday carer. It was so profound that I wanted to write to others who sadly would walk the same path through trauma. I started a blog journaling my day to day progress.

This blog developed into a book addressing common challenges within trauma, with an empathetic approach to grief, denial, anger and the emotional negotiation process towards acceptance, suggesting coping strategies through each chapter.

It’s 7 years since I became an everyday carer. I have learnt many things but namely that life is a bunch of random events, somethings can’t be fixed. Somethings HAVE to be accepted.

  • To move forward I had to adapt.
  • I learnt that it’s good to talk and I have also learnt it’s good to listen!

I am happy to report that Emily and I have active independent lives, we live along side each other with purpose and worth, joy and love.

I aim to raise awareness through this online showcase enabling others to positively identify as carers.   

Inspirational Women Online Showcase – Rachel

https://www.women.nsw.gov.au/nsw-womens-week/inspirational-women-online-showcase

My video is in – participation and empowerment.

The videos can also be viewed on our Youtube Channel Inspirational Women playlist: https://www.youtube.com/playlist?list=PL1jKge1cJ7AyqRRN_sv74GpEJ-f0DyUCl

Further Reading – Supporting Carers

Read – Carers – Self Care

Suddenly an Everyday Carer – buy the book

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Carers + Employers – A New Initiative.

CarersNSW has launched a progressive new initiative Carers + Employers. I was asked to sit on the Project Management Group as a carer representative so I’m delighted to announce the Carers + Employers initiative launched on 1st March.

Carers + Employers Initiative

Carers + Employers – A New Initiative.

This new initiative has been developed with both NSW and Commonwealth Government funding aiming to support workplaces to become more carer friendly, as well as developing a network of employers with improved employment outcomes for carers. The number of carers in the community is set to rise as population ages, and Australians live longer and retire later.

Carers + Employers Initiative – Accreditation.

Juggling both paid and unpaid work is very stressful. Many carers struggle to balance these two roles. Carers + Employers initiative is the first program in Australia that formally accredits carer-friendly employers.

The Carers + Employers initiative program has an accreditation framework that recognises employers that are actively supporting paid work for people with caring responsibilities. There are three levels of accreditation.

  1. Activate
  2. Commit
  3. Excel

Employers that join the program will become part of a network that has access to a dedicated website and member resources. Becoming an Accredited Carer Employer contributes to staff wellbeing, workforce management and wider corporate social responsibility.

There are many ways an organisation can better support carers in their workforce. Strategies do not have to be costly or require major organisational changes.

Carers + Employers Initiative – Supporting carers works for everyone.

Here are 10 tips for a carer-friendly workplace

  1. Enable staff with caring responsibilities to identify themselves.
  2. Develop a supportive culture so carers feel comfortable disclosing their caring responsibilities.
  3. Consult your workforce.
  4. Make it easy for carers to find out what support is available, and how it can be accessed.
  5. Promote carers leave entitlements. Explore flexible leave options.
  6. Promote flexible working arrangements. Ensure staff are aware of carers rights to request flexible working arrangements under the Fair Work Act.
  7. Deliver training so that support is consistently offered. Line managers should understand the challenges faced by carers, and the policies available.
  8. Monitor progress and adjust support as necessary.
  9. Explore opportunities such as offering career breaks, promoting carer-specific return to work programs.
  10. Provide practical support such as quiet rooms, a car space, peer support group, online forum or “lunch and learn” education sessions can be useful.

Carers + Employers Initiative – A Business Case

The business case for the Carers + Employers initiative

  • Improved staff retention.
  • Reduced recruitment and training costs.
  • Reduced stress, sick leave and absenteeism.
  • Improved staff moral and engagement.
  • Increased productivity (1).
carers + employers initiative
Carers +Employers Initiative – works for everyone.

Finally If you would like more information about the program please visit the dedicated website: http://www.carersandemployers.org.au/

For organisations wanting more information about the initiative please email: info@carersandemployers.org.au

Further reading regarding carers – Caring is not an isolated activity

(1) Supporting Working Carers: The Benefits to Families, Business and the Economy, Final Report of the Carers in Employment Task and Finish Group, HM Government, Employers for Carers and Carers UK (2013). Evidence was based on research with 200+ employers in the UK.

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Quick and delicious meal planning …..without repeats or apocalyptic stockpiling

Quick and delicious meals are imperative but how do I  plan as a busy mother/carer? Wherever you are in the world when the clock hits 4pm there is a collective intake of breath, eyes roll skyward, as everyone considers “What’s for dinner?” Continue reading

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Strength 2 Strength program for carers

The Strength 2 Strength program for carers is specifically designed for family members of people with spinal cord injury:

Continue reading

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Helpful hints to get in Shape whether a wheelchair user or carer.

Taking care of ourselves is imperative and when healthy choices are incorporated into our everyday routines then well-being blooms.

Emily attends therapy sessions at Walk On in Lidcombe, aquatic-physiotherapy whenever possible and scheduled time in her standing frame amongst other exercises. These activities constitute an important aspect of her health and fitness routine. As her carer I must prioritize my health with similar vigor as being unfit would compromise my ability to give care. Essentially we all need to be robust with added vigor to meet the challenges of our active everyday roles. Continue reading

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After 5 hours sleep I didn’t want to get out of bed but I’m glad I did ….

I only managed 5 hours sleep last night for various reasons so when the alarm woke me at 6 am, when I looked at the temperature on my iphone, when I did the toe test and it ricocheted back under the doona – everything was telling me stay in bed. But I hastily dressed, slurped tea, fixed my light to my handlebars and opened the garage door.

photo 2 (55)

It crossed my mind to text my cycle buddy that I had had a disturbed night which led me to prioritize sleeping rather than riding. No doubt she would have text-ed back politely. No doubt that staying in bed for another hour would have been warm and snug, but no doubt cycling into the crisp darkness, illuminated only by my lamp’s small circle of light, was the right thing to do.

After a jolly “Hello” for such an early hour we decided on a route and pressed on into the deserted streets and lane-ways. There is something quite unique about being up and out before the world wakes up. Dawn gradually shed its light on our route and our surroundings. The new day showed itself as a clear blue unsullied sky with the weak sunshine of winter bringing little warmth with its rays.  We cycled the perimeter of our local bays and coves, each peninsular has a slope to the water’s edge and a hill back, we tackled our route with zeal as hot coffee beckoned.

As we settled into the cafe booth with our hands cupped around our warming drinks the effort of our early morning exertion was rewarded by our lively chatter. When I get back home I will still have all the washing, I will still have a meal to cook, the car to wash but I’ll be energized by my activity, I’ll be nurtured by my friendships and I’ll be less introspective. I’ll feel healthy and I’ve positively reinforced that I ‘m not an isolated carer but a socially included and engaged friend.

Experiences outside of the home reinforce my sense of self, reinforce my identity, reinforces that Emily and I live together but are individuals. Commitments outside the home assist me in delineating my carer boundaries. I am separate from Emily, we each have different interests and friendship groups.  We each bring something lively to the other by interacting separately. Our relationship would suffer without space, freedom and separateness.

There are pro and cons to road biking but one advantage is it’s an early morning sport and  I can be home before the dog has opened an eyelid or stretched her hind legs, before the morning routine is scheduled.  I have the perfect opportunity to maintain myself without any detrimental effects on the household. I am not suggesting that every carer takes up cycling but I do advocate that carers take some time in their day to do whatever tickles their fancy. I know Emily and I cope better if we have both been out and about and engaged socially. It’s worth getting out of bed………

photo 3 (43)The glorious view this morning!

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Coping with change and acceptance …..post SCI

I witnessed Emily’s traumatic spinal cord injury as her mother. It was more cruel than I can express, my inner sustaining flame that nurtured my positive psyche was extinguished initially and an empty sad black hole replaced it. My black hole consumed all the daylight, consumed all my worldly understanding , all my thoughts were strained, as I witnessed Emily’s loss and grief, witnessed her gently accept that she was paralyzed, immobile, quadriplegic by an oblique sports fall.

Two years from her accident I question why is change and acceptance so hard?

I have been helped by reading the Sydney University – counselling and psychological service information sheets. One pamphlet instructed me to think about change as a process with stages:

  1. The situation. Observation of the place I am at and that I want to change.
  2. Get motivated. Scribe my goals; maintain my diet and exercise, maintain my positive nature, stop struggling to accept our new normal.
  3. Action – make my goals happen. By hard work I practice mindfulness, realizing the past is over, the future is not written so the present is where I should be.
  4. Maintenance – live. A real case of walk the walk don’t just talk the talk. I practice what I aspire to be. When I become mindful I realise that the way to accept change is to enjoy today.
  5. Relapse recycle. There are days when I re-evaluate our new normal post SCI in our family and wonder about life’s meaning and worth. Then I bring myself back to my goals and get on with enjoying today.

I still battle with the question “why” but due to its unanswerable nature it has to be acknowledged but placed carefully to one side, discarded in favour of better questions. Where am I in the stages of change? There is no right or wrong. It is just about being realistic about where I’m at.

Emily has returned to post-graduate studies, she travels to Sydney University on the bus. Emily continues as a volunteer at Taronga Zoo using community transport. She displays her resilience everyday.  My ultimate aim is to live not constantly aware that life changed on 1st Feb 2012.

On my clamber towards acceptance of my new life, my path will alter but my journey is not toward goals that are clever or complex. One goal is simple – living post SCI, accepting the ever evolving changes, coping and moving on with a strong sense of worth, purpose and a smile! A big smile.

photo (38)

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Why stare at the wheelchair, it’s the carer that’s odd…..

I thought I was normal but this week I found out I am not. I undertook an impromptu shopping mall health scan in-between the salad and diary aisle. Apparently my left leg is shorter than my right leg, my right shoulder higher than my left, I have some spinal scoliosis that a banana would be proud to display. I returned home to disclose these details to my family while I unpacked our groceries. It is a wonder that I manage in my crooked skeleton?  But manage I do and I actually feel very well contrary to reports dwelling on my short left leg.

The more I learn of the human body the more it amazes me. Human differences are infinitesimal; the range of eye, skin and hair colour. We are a wide range of short to tall, thin to fat, hairy to bald, healthy to not so healthy individuals. We live transient lives shifting in-between fitness and flu, losing hair and gaining weight, getting our teeth filled, our hair cut and our spectacles re-viewed. We are constantly altering and aging.

The fact is we are all individual, we suffer with short left legs, grumbling appendix and irritable bowels, we have cold sores and heat stroke. We have tennis elbow, gardeners knee, cauliflower ears and dogs breath. In days gone-by I would have been totally unaware that I was unfortunately walking around with a short left leg! When I consider the range and variations of normal within the human race it amazes me that people still stare at wheelchairs? I am definitely more odd than Emily but the wheelchair still draws a crowd.

photo 2 (30)Beastie suggested I join the circus!

 

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I dislike deep dark holes, I’m top side with the kettle on!

“I dislike deep dark holes”  sounds random but let me explain. There have been instances when issues drop into my lap, problems which I don’t have any answers to. Being a good listener maybe all that is required, yet I can be subtlety drawn towards the dark,  swirling maelstrom, that spirals out of control to a deep hole that traps us at the bottom where we can get stuck trying to figure out how to address the issue. I prefer not to participate in any mental surfing that ruminates on problems in a brooding fashion. I prefer to stay firmly above ground in the sunlight and have a ladder or rope ready for any hole dwelling, mulling, contemplative individuals. I can put the kettle on and call with words of encouragement, I can listen for as long as it takes but I resist the temptation to fall into the whirlpool of circling thoughts and issues. This theory works both ways as when I feel rotten and can’t see the wood for the trees I talk to my family and friends and there is always someone with a verbal, not literal, ladder to help me out of my hole.

Sometimes issues can be resolved by simply remembering: the past cannot be changed, and doesn’t change the more anyone talks about it, so best to accept it as it is. The future is unknown so no point mulling endlessly about what could happen in a million different imagined scenarios. The key is to be in the present, address just what is in front of you today. I have for some time now been practising living here and now, being responsive rather than reactive. I endeavour to drop any bias that entrenches or prejudices my interpretation. My aim is to see life just as it is. If I observe life with this attitude life is usually simple and accommodating.

Emily’s spinal cord injury has lead to some deep  thoughts revolving around the unanswerable “WHY?”. It is best not to get drawn into that debate because it just simply is. There is no answer to “WHY?” “IF ONLY” “WHAT IF” . If I do try to process these questions I’ll just end up with an ulcer. However many times I revisit the past the outcome never alters. I can not anticipate the future as too many variables and unknowns so the best place to be is here, right now, enjoying the day in front of me. It would be a shame to miss today as missing today means I’m missing the point.

If I find myself in a deep musing hole I pop my head over the rim and look around as answers are rarely to be found in rumination pits. Answers may never come to me but living in reflective depression asking tough soul searching questions of life is no way to spend my time so I chose to stare each day in the face and make the most of it. The best approach for me is to accept I’ll make mistakes but if I care and hold on to my core values with integrity, if I always treat others as I would have them treat me, then maybe clarity will come to all my questions and enlightenment will show me a clear path forward, no dark melancholy holes involved.

 

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