The other night, as I sat on my couch in the silence trying to find the words to describe how I felt for a blog, I got a notification of being tagged on Twitter. As timing would have it, the tweet was about being a carer. My reply to that tweet began to address how I feel. I wrote:

I was actually just sitting here trying to find the words to say how burnt out I am. Exhausted. Depressed. Not wanting to do this work anymore. Wanting a life outside of this. Wanting to just be his mother, not his nurse. And feeling guilty at having these feelings.

I’ve been thinking about these feeling since that night. Here are some conclusions:

• If government (no matter what country) properly supported carers, we wouldn’t get to this exhausted state of wanting to give up.
• In any other job – and this is indeed work – an employee would NEVER be expected to work and/or be on call around the clock, let alone for days, weeks, months and yes, even years, on end.
• In any other job – I repeat, this is indeed work – there would be other workers to come in and relieve a fellow worker for breaks, days off, and as needed when ill.
• By caring for an incapacitated family member at home, the carer saves the government (again, any government, wherever you live) millions if not billions by providing the care services rather than the State.
• If the carer can no longer provide care for their incapacitated family member, be it through sheer exhaustion or through their own now ill health, it would cost the government far more to provide residential care for that person. In fact, they may be looking at now providing care for TWO people because the carer’s health has broken down to the point of themselves needing care.
• If governments invested in proper supports for family carers (ie: in-home nursing support, suitable residential respite, timely access to required services & equipment, individualised care plans based on each family’s needs, just to name a few areas of support), they would be investing in the health and well-being of the carer, which is fiscally prudent in the long term (see above listed reasons). An ounce of prevention is worth a pound of cure, as the old saying goes.

We have to ask WHY governments don’t adequately support the family carer working full time to save the life of an incapacitated loved one.

I think it’s because they don’t place an equal value
on the lives of people with disabilities. Full stop. 

Two days ago I received confirmation that the regional respite centre won’t be able to accommodate Brendan Bjorn’s needs (no special articulating bed and no pressure relieving mattress) and that there is no availability for him. I still wait to hear, 11 months since moving to County Wexford, if funding for in-home nursing respite has even been approved. If and when it is ever approved, I would still be unable to leave the home due to the illogical Loco Parentis rule of the HSE unless I had another adult in the home who would be able to handle emergencies that may arise. I don’t have that. So, in-home respite is basically not respite…if it ever happens.

The cold hard truth is that governments count on the love a family carer has for their child, or other incapacitated family member, to keep them in their place (so to speak) caring around the clock, often alone (especially as a lone parent), often in unsafe settings due to lack of proper equipment, often when physically and emotionally depleted. Governments would never allow medical staff to work in such conditions. Unions would never allow it, either. But alas, family carers do not have this protection, and as such, neither do their incapacitated love ones. Carers are expected to continue on with their work fueled solely by their love.

But sometimes love isn’t enough. 

Governments MUST realise that family carers cannot continue on working 24/7 providing nursing level care for years on end without receiving proper supports, time off of their work (again, it is indeed work) and dare we even hope for a life outside of our full time caring role. We will breakdown eventually, be it physically, emotionally, or both…and then what? 

Dear government, listen…