There was media focus last week in Ireland around the mental health struggles of family carers such as myself. The focus was prompted by a study on the same by Family Carers Ireland and the College of Psychiatrists Ireland (see information here). I’m going to apply a bit of “tough love” in this blog piece. And, as always, be brutally honest with my emotions. First, some statistics:

• 1 in 3 family carers is diagnosed with depression.
• Approximately 2 in 3 are providing over 100 hours work per week.
• 4 in 10 are diagnosed with anxiety.
• 2 out of 3 carers have suffered ill health and feel it is linked to being a carer.
• 71% of carers loved ones have NO access to respite.
• 72% of carers worry about not having enough money for the future.
• 40% suffer from back injuries.
• 74% worry about what will happen if they die or get ill and can no longer provide care for their loved one.

Read the above linked report for more data.
Please. Read it. 

Ok, so, now what? What will come out of this important and eye opening report?

As I sit here before giving Brendan Bjorn a bed bath, having read the news this morning that homecare packages are frozen until November, and contemplating the €180 I will spend tomorrow for a mere 4 hours of nursing respite so I can finally leave my house with my other son, Declan, after being housebound for months, I have to ask…what will come of it?

I’ve been writing about the mental health struggles of carers for years now. The last time I was brutally honest about my own depression and anxiety, for which I am on medication, I wrote about having hit a low point one night where I experienced suicidal ideation (but came out the otherside). Brendan Bjorn’s social worker called Tusla to report it. There was no direct contact with me by the social worker about it. No reaching out to discuss options for intervention such as counseling. Just a terribly misguided report to Tusla – which thankfully went nowhere because they realised I was not going to actually go through with the ideation of ending my own life.

So again I ask, what will come of it?

Let’s face some more facts:

1. Here in Ireland, there are plenty of platitudes thrown around about supporting mental health, but when it comes down to actually taking action, very little is done to support the most vulnerable, such as the carers statistically highlighted in the above report.
2. We don’t have enough mental health professionals in Ireland.
3. The waitlists are years long, especially for paediatric services.
4. There are, from what I can determine, no home based counseling services, either.
5. Then there’s the budget. Will the government actually increase funding for such services? I have little to no hope of that happening.

As a former mental health counselor, and as someone who has received in home family counseling supports, I cannot emphasize enough how vital this service is to families like mine who are housebound and/or who are dealing with a palliative care scenario. I would advocate that there needs to be a wraparound, paediatric palliative care service in Ireland which would include in home family counseling. One thing the above report doesn’t address is the mental health impact on the siblings of families such as mine. I can tell you, there is great need but no support. I advocate for Brendan Bjorn’s needs all of the time, and for those of carers, but what I seldom speak publicly about is the equally important – and urgent – needs of children like my son Declan.

Can you imagine what it is like growing up knowing you will one day lose your only sibling? I can’t even imagine that.

Can you imagine knowing that you care 24/7 for years on end, fighting day in and day out for the required treatment and services for your precious child, knowing one day you will have to bury him? That, I can imagine. That, I live with. Every. Single. Day.

I said at the beginning of this piece, I would apply a bit of tough love and be brutally honest. Well, there it is. Unless you have walked on this very journey, you cannot even begin to comprehend what that fact does to your mental health. It’s not the same as losing a parent. I’ve done that, twice, and in my opinion, it’s the natural order of life. But your child? That brings what I have is no doubt the hardest emotional, psychological, stressor one could ever go through: When you would do anything, give anything, to trade places so that your child could live, but nothing –  absolutely nothing – you will ever do could see that desperate desire come true.

And yet, there are no home based mental health counseling services for families with children who have a life-limiting condition. 

Family carers have countless stressors that are out of the norm compared to other typical families. I again refer you to the report above. Carers are truly in crisis, left with little to no supports to continue their 24/7 work, which saves the State €10 billion per year, trying to keep their loved one alive. We have extraordinary financial concerns, fight broken systems on a daily basis, sacrifice our own mental and physical health doing everything required for our loved one, while going relatively ignored in our pleas for help and reform, including of mental health services.

And many of us do all of this knowing that one day we will no longer have the child we love more than life itself, and we will be left a shadow of our former self, broken physically and shattered emotionally, by a system that didn’t care enough to help those who care the most.

Who will be there to pick us up off the ground when there aren’t even mental health services to help us in the midst of our struggles now?