Carers Week 2020 – A carer’s perspective

It’s National Carer’s Week from 11 to 17 October, a chance to recognise the 2.65 million unpaid carers in Australia who provide support to family and friends.

Matt Lynch is a carer for Dyan, his wife of 30 years, who lives with severe encephalomyelitis/chronic fatigue syndrome (ME/CFS). Rocky Bay also supports Dyan with therapy services.

For National Carer’s Week, Matt wrote a powerful account about his experience as a carer for Dyan, and Rocky Bay are grateful he has allowed us to share his story.

IT’S MORE THAN ME… IT’S WE TOGETHER

Words by Matt Lynch

When someone in your life becomes unwell, it causes both direct and indirect changes to yourself, whether that be in the acute moment of initial illness onset or subsequently the change in life moving forward with a persistent form of illness through; decline, diagnosis, treatment, management, then the adjustments to life so as to accommodate to a new paradigm that is not in your control.

My wife Dyan has Severe ME/CFS. She has been unwell since just after we first met nearly thirty years ago and I have experienced first-hand the ups-and-mostly-downs of this complicated chronic illness that has she has had to suffer. I have become her full-time carer out of necessity as her illness evolved when no other help was at hand. Swapping my twenty-five year career path nearly five years ago from Corporate Marketing Specialist to Carer, as she became effectively bed-bound by a very complicated illness that seems to baffle modern medicine in Australia and was not being supported, by medicine, the government, media or society.

What a learning curve life can present to you. Neither of us were prepared for this trajectory. She didn’t ask to be sick. She had tried too hard already by herself, and for too long, dealing with it alone, neglected by the medical system. Necessity is the mother of invention, and certainly the catalyst for change. It was time to do it differently, turn life upside down, and make a difference in someone else’s life. The person most important to myself – my friend and life partner.

I wasn’t a doctor, or nurse, or pharmacist. Nor was I a therapist, physio or scientist. I certainly wasn’t a trained carer, let alone suddenly needing to become a patient advocate, but all of this knowledge I would have to obtain to become effective in my new role. I was certainly willing and capable to learn. Some of my skills were transferable and others were an actual benefit; such as organisational, research, report writing, marketing, social media, technology and particularly attention to detail.

Exploring an emerging illness, means having to learn everything you can about it, with very little available resources to call upon, whilst sorting fact from fiction. This is both the benefit and bane of the internet, a rabbit hole waiting to swallow the uninitiated. Social media opens opportunity to connect with other patients, carers, researchers and doctors at the coal face of dealing with the illness as part of their every day life. We are able to share, connect and support. Every treatment decision made can affect life outcomes, a person’s quality of life, whilst also the harsh reality of effecting your future financial position to avoid potential poverty as being sick is not cheap!

My male brain mindset was about fixing a problem… but honestly that is only one aspect of this particular puzzle that needs to be considered. So I had to adapt and change my approach to emotionally connect as well whilst caring. Replacing what is significantly lost to those battling with chronic illness; their dignity, independence, trust, friendships and family, then hope. As a carer you can become very busy within the administrative process to obtain the necessary support services, funding and equipment required to look after a patient with this level of high care needs, which takes away from the connection and time the patient actually requires, as well as the need to look after yourself. It is the oxygen mask in an airplane disaster scenario – if you don’t look after you first, how can you look after anyone else properly?

The Australian health system unfortunately appears to purposely bog patients down under a considerable weight of applications, report requests, lengthy processes and bureaucratic red tape which is detrimental and takes a considerable toll upon the patient desperately needing an effective outcome in a timely manner, whilst the system tightly maintains control of the purse strings. Until that is achieved, the financial burden is upon the family, the carer and subsequently the patient. Something must give, choices must be made, there is only so much you can do.

It’s easy to lose oneself into the black hole of the illness, an abyss that truly consumes yourself as the carer, as much as the patient you are caring for. Together we’ve lost so much along the way. I look at myself in the mirror and see the change that has now been etched into my face. Particularly the eyes, which reflect back to me the pain of suffering experienced. I’ve lost nearly thirty kilograms in weight since becoming a full-time carer, which perhaps reflects the harshness and sacrifices in lifestyle along the way. I’m not complaining, at least I didn’t need to go to a gym or do some kind of diet program. Not that I would have had the time as caring is a 24x7x365 days a year role. I also wouldn’t have had the energy, or money to afford that anyway. Sacrifices are made within a family caring for a chronically ill patient. I’m always looking for the silver lining amongst everything, aiming to create the necessary hope and positivity to remain motivated.

However, should this role be just our own burden alone to carry? This is surely a societal issue as it affects and impacts our entire community. Anyone can become ill at any time, its unpredictable, uncontrollable, an unfortunate fact of life. My hope is that everyone would care just a little more, and consider those in this position a little differently. Sharing is caring, and I have appreciated most of all the sharing and caring that I have received both for myself and my partner, from all those in the chronic illness community. The strength and support of others is what holds us up and makes every day seem just a little easier. My love, compassion and support goes out to all other carers going through this journey as well. I am here for you to connect to as well if I can support you and share what I have learnt along the way.

Advocacy is not one particular special day, though these events help to highlight a problem. The illness is experienced every day by the patients. Therefore care, support and understanding is needed each and every day. The isolation for patients needs to be lifted. The access to affordable treatments in Australia needs to be obtained. The learning from abroad needs to be shared within so as to effectively advance clinical research and development of appropriate treatments.

The harsh reality of this illness, is that my partner desperately hangs on to life in hope. If I wasn’t here caring she would not be here today. I know this. I am the lifeline for her where the system fails her. My inspiration is that we have created a ‘new normal’ for ourselves. It is mind over matter. You have to be mentally tough to survive this illness, both as patient and carer. Together we use humour, and still have fun in our own little way, so that life goes on. There is hope everyday.