Brendan Bjorn turns 16 later this year. Here in Ireland, that means many of his services will be transferred from paediatric care to adult care. Changing doctors. Changing, and even losing, services. I’ve been working the past few weeks trying to navigate the various systems to prepare for this change. It’s not going well so far. First of all, I can’t believe he’ll be 16 this year. In very straight up language, no one ever thought he’d live this long. I sure didn’t. And to be clear, there were a number of times he was close to leaving us.

Yet, here he is just down the hall from me.
My little boy who is now a young man. 

He’s the size of me now. His care has grown increasingly harder as he grows older, grows bigger, while also growing more fragile…and I grow older, too. I’m no Spring chicken at 54.

There’s another element to having a profoundly disabled child that doesn’t often get discussed. Maybe people don’t realise it. Maybe it’s taboo. But those of us who have been on this journey for this many years acknowledge it – as hard as it is to accept or even say:

Profoundly disabled adults don’t tug at the public heartstrings like the still cute, still little enough to sit in your lap profoundly disabled children do.

That’s also straight up language. It’s also true. And if you don’t agree with me, I’d challenge you to name a palliative care level charity helping profoundly disabled adults that gets the same public support as those that cater to children. There aren’t any, and as such, when becoming an adult, the family’s struggle becomes even harder.

There’s a reason I bring this up at this time and in such a blunt manner: Services for profoundly disabled adults, including teenagers like my son who are just entering the adult service world, are in even more dire need of reforms and improvements than those for the younger children. 

I learned last week that in-home nursing support was refused by HSE Primary Care for Brendan Bjorn. I am still awaiting an explanation as to why and when that decision was actually made, considering it was approximately a year ago the request was submitted yet I only got the answer last week.

Right. So I thought, private – I’ll try for some privately paid respite despite the cost of around €55 per hour. (Desperation and exhaustion lead one to such a decision). Maybe I could do a fundraiser as other families are very successfully doing for nursing care, despite me not wanting to ever do public fundraising again. (Yes, special needs families often resort to fundraisers to survive this journey)

Then the bad news: I learned yesterday that the one private nursing agency in my area which would provide in-home nursing respite for me (I had hired them once last year) is no longer providing private care in this way. They are only going with State funded contracts now. They also have a shortage of nurses, like the rest of the country.

So, no hope for in-home nursing help and/or respite. A 54 year old lone parent, full time carer with rheumatoid & osteo-arthritis and degenerative discs and there is no in-home nursing assistance. Some days I just sit here on my couch and think, this is really f*cked up. 

We in Ireland need to have a very serious look at our society.

Do we want to spend tax money on greyhound racing, or do we want disabled children waiting in pain to get the operations or special equipment they need?

Do we want to spend tax money on bailing out a disaster of a soccer organisation for the same amount that disability services just happen to be cut by, or do we want profoundly disabled adults to be able to have the humane care and appropriate services they desperately need?

Do we want politicians to be able to receive multiple, extraordinary pensions and for years longer than the public can, or do we want family carers (who save the same State €10 billion per year by caring at home for their disabled love ones) to have some help, some respite, a reprieve in care before they too are disabled, reaching retirement age with no financial security and no pension?

My cute little boy is fast becoming a young adult.

When services and supports are so lacking that you hope the years don’t turn into decades, you know that something is drastically wrong with the supports for the profoundly disabled members, and their families, of our society. 

This is one of those days and sit on my couch and think, this is really f*cked up.
And so it is.

 

The last time I got in-home nursing respite was June 2017. We lived in a different county at that time. I also received in-home nursing respite in another county. Here in County Wexford, though, it has been refused. As a full time, lone parent carer to a profoundly disabled teenager with complex medical needs who is also very fragile, having no nursing assistance, no in-home nursing respite, is nothing short of negligence by a government who professes to care for society’s vulnerable. Disability Rights and the Rights of the Child are apparently non-existent, hollow pieces of legislation in Ireland.

The profoundly disabled children and adults in Ireland – and indeed those of us who are their voices as their carers – have been swept under the rug and forgotten about…or is it, ignored? 

This cannot be allowed to continue. 

I have 2 sons. I am now in a position where I have to fight for proper services and supports for both of them as my youngest son has been referred for an OT (occupational therapy) assessment which has a wait list of over 2 years in County Wexford. OVER TWO YEARS FOR AN ASSESSMENT. This is absolutely neglecting the needs of a child with a possible disability that will impact his education, and as he’s entering secondary school this Autumn, I’ve decided to pay the €450 for a private assessment for him. I don’t have that kind of money as a full time carer relegated to existing on a fairly meager amount social welfare, but I’ll find it…somehow. I have to.

And I’ll keep fighting to change and improve the system, the supports, and even the laws if need be. For my sons – both of them – and for all of the other families in Ireland who are in this situation crying themselves to sleep at night before having to get up an hour later to do more caring.

At this point, I’m just hoping I don’t collapse before I see those goals met…trying to survive while caring 24/7 but getting zero in-home nursing assistance/respite and fighting battles on many fronts. 

 

 

“The true measure of any society can be found
in how it treats its most vulnerable members”

Dear politicians, candidates and political parties,

As I sit down to write this, the general election here in Ireland is only 3 weeks away. My reasons for writing this open letter to all of you is two-fold: 1) I want to share with you what PROFOUND disability means and entails, and 2) I want to ask you, in advance of the election, what you and your party will do specifically to help improve the lives of children and adults with PROFOUND disabilities, as well as their families who are usually their full time, unpaid, carers.

I’ll start with the first point: What does it mean to be PROFOUNDLY disabled? 

Generally speaking, a person is classified as profoundly intellectually disabled if their IQ is, or is estimated to be, at 20 or below. More often than not, profound intellectual disability is accompanied by physical disability or indeed multiple disabilities and/or medical conditions. Some examples of these are: vision loss, hearing loss, epilepsy, feeding and/or swallowing issues, breathing issues, cerebral palsy, orthopaedic issues, gastroenterology issues, skin breakdown concerns, being non-verbal. Mind you, that list is not fully inclusive, but it is a good starting point in describing how people with PROFOUND disability require full, complex, around the clock care – including medical care – and are unable to take care of themselves.

On to my second point: What will you and your political party do specifically to help better the lives of the profoundly disabled members of our society?

A few years ago, I got together with a few other parents of profoundly disabled children. Their children are actually adults now whereas my son is a teenager. All profoundly disabled. All of us are full time, unpaid, carers. We established an advocacy group called Profound Ireland. As election looms, I can safely say that we are all in agreement that services and supports for the profoundly disabled members of our society are sorely lacking. Much reform is needed. More services are needed. And we as carers need much more support to continue providing the intensive care required for our loved ones.

Below are just 10 points I would ask you to consider and to then please reply to me with what you and your party will do to help better our lives. I can be contacted via this blog or on Twitter at @addressinglife.

10 Questions…will you:

• Ratify the Optional Protocol to the UN Convention on the Rights of People with
  Disabilities without delay?
• Fully commence and provide appropriate funding of the Assisted Decision Making (Capacity) Act?
• Increase funding for services for profoundly disabled individuals and ring fence that funding?
• Expand respite services and set them on a statutory basis?
• Assure equality of respite hours and services across all counties in Ireland?
• Fund in-home nursing respite if requested by family and without the Loco Parentis restrictions?
• Provide home care packages on a statutory basis, including an increase in financial assistance such as reduction in electricity and waste charges considering the above-average costs incurred by families with a profoundly disabled child?
• End the post-code lottery of services being provided and assure families across Ireland will have equal access to all required services?
• Decrease waiting times for all procedures and treatments for profoundly disabled individuals to a maximum wait 30 days?
• Reclassify the family carer roll of a profoundly disabled loved one from social welfare into a Carer’s employment contract resulting in an income at fair market rate with salaried wage complete with payment into PRSI and pension?

 

I look forward to your replies. 

Signed, Tracy, mother and full time, unpaid carer to Brendan Bjorn (15) who has profound intellectual and multiple physical disabilities with a life-limiting condition. 

 

 

I have a desire to run away.

Not forever. Just for a week alone in a cabin in the mountains where the only thing I can see and hear is nature. No one but myself to take care of for a week. If I wanted to, I could sleep all day and stay up all night. If I wanted to, I could have a couple of glasses of wine because I wouldn’t have to be on constant high-alert for a medical emergency as I am now. I could go for a long hike or a leisurely stroll or just sit at the water’s edge and think of everything imaginable or nothing at all. I wouldn’t have the constant monotonous whirling sound of a feeding pump echoing in my ears. I wouldn’t have the sound of alarms going off in my head day and night, even when they actually aren’t. No nappies or vomit or medicines or seizures or appointments to attend or schedule. No phone. No internet. No noise. No chaos.

No caring. 

Just for a week.

Alone.

I know, it does sound odd for someone like me who is so isolated as a result of being a full time carer to want a week alone in the wilderness. Some people find their center in church. Some people find it being by the ocean. For me, it’s always been the mountains. God, how I miss the mountains. Better yet, how I need that inner-peace which I find in the mountains. 

As I type this blog piece, I know people with cancer fighting for their life as they lay in a hospital bed. I know parents whose children have had cancer treatments and other health procedures delayed because of our broken health system. I know there are people with no home; people who have recently lost a beloved family member; indeed, so many people who have it far worse than I do. And my sons, I love them with every fiber of my being so how can I dare to think of a week without either? More guilt sets in as I contemplate this desire. To you all, may you forgive me for evening thinking of this self-indulgent dream.

I write this only as one person, just one perspective of self-reflection, in my own life. Still, considering the points above, I feel guilty at writing these thoughts.

My mother died from cancer at the young age of 60. Sometimes it crosses my mind that I’m only 6 years away from that age and then my anxiety (a demon I wrestle with too often) kicks in and panic hits me that this could be it for me – this life of caring 24/7 and then I die. That’s it. This is it. No more mountain hikes or strolls along the lakeside or sleeping in or staying up late or having a glass of wine without being on-call. No more freedom or ability to enjoy so many things I previously did before becoming a carer 24/7.

No more silence in my mind or calmness in my soul…

And then, as anxiety would have it, a panic attack takes hold, as it did this morning while I thought of this self-indulgent, guilt-inducing desire of mine. 

Ironically, it’s precisely in that panic attack occurring that my psyche tells me how this desired week in the mountains is actually rooted in self-preservation and self-healing. But even so…it cannot be. Not now, anyway.

This blog piece isn’t going to be one of logic and advocacy. It will be one borne from the raw emotion of being a lone parent carer. It is about the corner where love could be.

I took the Christmas tree down today. I always find it a sad occasion, but especially so since Brendan Bjorn was born. And each year, it becomes that bit more sad. I never know if this was his last Christmas. Frankly, I never thought I’d be blessed to have him for 16 Christmases (and counting!). So, as I remove the decorations, some of which are dated for years past with photos of him and Declan, a deep feeling of sad sentimentality comes over me.

The corner was left bare after I removed the tree. I stood there just looking at the corner. The music playing in the background seemed to be one love song after another. It left me in a heaping mess of tears and reminded me why I don’t often listen to music: it touches me too much.

Earlier this morning before taking the tree down, I did an interview for an upcoming article about being a carer. In particular there were questions for me specific to what it’s like to be a lone parent carer. How is it different than carers who have a partner, I was asked. My answer? In every way imaginable. 

So there I was. I had these questions, and indeed my answers, floating around in my head while taking down this symbol of love while the music of love infused with my thoughts. And it dawned on me –

There’s a corner in my heart where love could be, as well. 

I have to laugh now as I write this piece. No one in their right mind would sign up for such a journey with me. It involves too much personal sacrifice to be a fully engaged partner to someone in my situation. I get it. I appreciate it. I respect it. But no, I don’t like it.

Yet, it still leaves that empty corner where love could be. 

It’s been a few years since my last serious relationship. I won’t go into details, but suffice to say it didn’t end well and left me with what will surely be unpleasant trust issues to be tackled should any man again dare to brave entering a relationship with me. I’ve pretty much resigned myself to being alone on this journey, but that doesn’t mean I don’t wish it could be different at times.

One of the answers I gave in the interview was about not having someone to curl up with for comfort at the end of the day. There’s a powerful healing and recharging of spirit that comes from such a gentle physical connection like that of being held by someone with whom you share love. That genuine intimacy which is sharing your being with someone out of love for them. It is a beautiful thing. One of life’s most beautiful things, I think.

But, I will leave that empty corner where love could be to the future, for I know not what could be or will be.

All I know is that I’m cognizant of just how that empty corner feels.