Running for election? Let’s talk about the PROFOUNDLY disabled in our society

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“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. 

 

 

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A self-indulgent, guilt-inducing desire

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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.

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The corner where love could be

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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.

 

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