The Carer Fix – For Those Who Really Could Care Less

Carers of people with disability need recognition, support and therapeutic options from all of us

The Compromise

We tend to mark our lives in stages, arranging our stories into chapters with clear titles which describe large and tangible changes.

But the truth is that life is incremental, and now eighteen months on from my March ‘17 blog post on The Luckiest People, Gaz and I have had many small but substantial changes in circumstances and daily living as a result of LGMD.

Although we all have our individual life paths to follow, I feel ours is a little more unique than most – certainly compared to what we ever envisaged.

Over the last 12 months or so Gaz and I have made huge adjustments to accommodate a decision we made to enable him to take up a dream career opportunity. This left him working 60-70 hour weeks and me getting my recruiting and management cap on to organise my backup battalion of carers. We had been, in our healthy 20s, 30s and early 40s, quite used to Gaz’s long working days as I managed the machinations of daily family life and my own interests and work.  Why couldn’t this work again?

I’ll tell you why – because caring for someone with a debilitating condition can be relentless and tiresome and genuinely fatiguing. Throw in a high pressure working life and the ramifications are many and not complementary.

Sleep deprivation is a major factor that is not only detrimental to one’s daily decision making and mood but also takes years off your life. We didn’t enjoy the loss of connection to each other that we had been so used to while we were running a home-based business (a decision made to provide flexibility when the LGMD effects became greater). These factors precipitated many more reasons why this foray into ‘going back to normal’ just didn’t work.

Choices such as these have been the compromises made by countless carers for their loved ones.

Unpaid or informal carers can be ones’ life partner, child, sibling, parent, extended family member or a loving friend. Paid carers may come through your community, an agency or a friendship group.

I take my carer fix from almost all these avenues and it’s my one main drug to ensure that I am living fully. I’m really settling into the carer groove and I am not so embarrassed now to admit my dependency and on any given day have at least 2 carer shifts. And, of course, Gaz for overnight.

These sorcerers of help, these angels of mercy have become my arms, my feet, my eyes (eyes in the back of my head would be very handy now that neck turning is soon to be a bygone feature), my fingers and, with anosmia thrown into the mix, my nose as well.

The physical help required is obvious and I shudder to think where I would be if I lived in a less advantaged country or era. But the deeper soul ramifications of being looked after are just, if not more, important. Thanks to the accepting ways of most everyone I know I have been able to retain (with continued work) my sense of dignity, my feeling of self-worth, and some inner acceptance of what my life means and what I mean to others.

The Carer Conundrum

But here’s the catch – while I and others like me can take great comfort and benefit from such caring – who is taking care of the carer? Particularly the unpaid carer. What drain is this having on not just the daily activities of their own not-caring-for-you life, but their inner psyche? 

Caring for someone in a physically or mentally vulnerable situation can at times be a more draining, compromising and lonely experience than their afflicted charges bear. Our disabled are marginalised and our carers are seriously overlooked.

As individuals, we are all unique in our thinking, our core, our experiences, our personalities and our behaviours. Carers come in all shapes and guises: some just don’t have an affinity for TLC at all, some can really resent their lot in life and begrudgingly assist. And others are such nurturing empaths that not only do they ensure their recipient is cared for but that their quality of life is as little diminished as possible – assisting them to do almost all activities as before.

My fortunate experience is of the latter but we have all heard some horrific stories of care so substandard as to be abusive.

The reality is that those carers closest to you are the ones that watch your movements, see your struggles, despair at your disability related disappointments, cry with you in your frustration or anger or grief.

They find solutions for you when you do not have the capacity to do so for yourself. They wake at night to medicate you or toilet you or adjust you. They become chauffeurs and gardeners and cleaners and nurses when these activities were never their calling or even their interest. They sacrifice personal space, study options and work opportunities, as well as other activities, just to be there for you – not just your needs but your wants, too.

They sometimes see you or can read you better than you can, physically and soulfully. With that can come an underlying and then overt worry which becomes a forceful stressor to your carer whether they are with you or not.

Heading Towards The Fix

So my wrap up of my musings from my 18-month journey into the accelerated caring that I have been receiving, and the daily challenges that come with that, are:

Most of us will become carers at one time or another and some will bear a larger burden than others and for longer.

The role of a carer can never be taken too lightly. Our carers need to be seen, to be acknowledged, to be empathised with, to be able to share their burden to an empathetic, understanding ear when they need to.

Our carers need to have the resources to find the personal development time, playtime and downtime. A carer deserves to be able to replenish their energy in whatever form that means to them.

Some carers need to ask for help and know that asking is not an admission of inadequacy or shirking. It’s a sign of being human.

We can ask how carers are doing and genuinely listen to their response. In some circumstances, we can arrange to swap with the carer and help out. We can provide cooked meals. We can simply stay in touch.

Finally, we can contact our local carers organisations and advocacy groups.

We can all help the helpers.