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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A thousand new years

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Today is 31 December 2019. Tomorrow, a new year and a new decade begins. New Years is always a time of reflection, but I find this year weighing on my mind in a different way. I saw a post on Twitter the other day about “the 20’s” and it dawned on me that my own mother was born in the 20’s – but not the 20’s that this person was referring to! And with that, my mind began to contemplate the generations.

I’ve been researching my family genealogy for over 30 years now, but it wasn’t until I had Brendan Bjorn and Declan that it took on a new meaning to me. I do this for them now…well…mainly for Declan. Brendan Bjorn will never have children of his own, which is a fact that is never far from my mind, but especially as I look back over the years of our family tree.

As a carer, I also think that allowing my mind to wander into the past is a form of escape from the daily stressors right in front of me present day. When my back is hurting and I can’t get out of the house with Brendan Bjorn, I can get lost in history. Our history. I can turn it into a gift of heritage for Declan’s future. My parents and grandparents are all long gone. The closest family we have now is in Norway. Being surrounded by a supportive, loving, family is something I had always dreamed of since childhood. It was never to be, though. Today, it is something I strive to give to my sons. 

I turned 54 this month and that also gave me more cause to consider my life : past, present and future. Knowing your life is half over (at least) brings an urgency to living. I know all too well how fragile and fleeting life can be, yet I still have days where I’m so emotionally exhausted I think what’s the point of all the struggle. I may not have the answers to that question, but all I have to do is look back over my family tree and see the generations who came before me and who, had they not existed, I wouldn’t be sitting here now writing this blog about my own life. There’s a profoundness in that knowledge that I think needs to be honoured and remembered with some reverence… 

If it wasn’t for a Viking called Ragnvald Eysteinsson having a son called Gange-Hrólfr “Rollo” Ragnvaldsson over a millennia ago, I wouldn’t be here.

If it wasn’t for Henry FitzHugh, 3rd baron of Ravensworth in Yorkshire, having a daughter called Eleanor in 1397, I wouldn’t be here.

If it wasn’t for Phillippe Daniel Kellogg marrying a woman called Annis and having a son called Martyn in 1595, I wouldn’t be here.

If it wasn’t for Ole Jonsen Nygårdshagen and his wife Mari Guttormsdatter Nygaarden having a son they named Guttorm in 1770, I wouldn’t be here.

If it wasn’t for Mae Bjørneby having a daughter named Joan in “the 20’s” as mentioned above, I wouldn’t be here.

And if I wasn’t here, neither would Brendan Bjorn and Declan be here.

Now that is something to really think about, isn’t it?

For this new year, this new decade, I hope the past can lend strength to today while bringing us smoothly into the future. We may only travel this journey one day at a time, but before you know it, a millennia of history has been written. May we all do what we can to make it the best future possible and worthy of our ancestor’s gift of life.

 

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Another day. Another year.

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It’s my birthday today. I am now 54 years old. I look at that number and it’s surreal to see. How can I be that old? It’s funny how notions from childhood of what certain ages represent still remain with us as we ourselves age. But then again, life doesn’t always go according to our childhood dreams, does it?

Today I will do nothing different for my birthday. There will be no meeting with friends or going out to dinner. The loneliness of the life of a full time carer, who is most often home-bound, will remain today. As I am most of the time, I will be home caring for Brendan Bjorn. I’ve been fighting a respiratory illness the past 2 weeks which he has now also come down with, so no school for him today. Declan has also caught this nasty virus and is home from school, too. So, double-duty for me today.

Despite the exhaustion of non-stop caring with no respite or help, I know that I have a great deal to be thankful for today.

Declan woke up and sang Happy Birthday to me. A nasally, plugged nose version, but endearing all the more!

I am a mother to 2 beautiful boys. A blessing that for many years, and after 5 miscarriages, I never thought I would get to have.

We have a forever home, thanks to the graciousness of many people – and one in particular – whose hearts were filled with love and compassion.

And despite my own health issues, I’m thankful to still be able to care for my sons. At times I really struggle with those issues. At times I complain about that struggle. But I am here, now 54, and doing everything I can to give them both the best life possible with their own unique needs.

So, yes, I’m going to say Happy Birthday to myself! I’m going to try to embrace being 54 rather than feel embarrassment at the “old” age. I’ve lived a hell of a lot of life in these 54 years. I’ve got the scars, invisible and obvious, to show for those adventures. But, here I am…still alive, still fighting, still hopeful for many more years to come with Brendan Bjorn and Declan, for they truly are my world.

 

 

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2 sons divided by stairs. A mother divided between 2 sons.

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Today the boys and I spent 3 hours away from home so that Declan could take the assessment for the Center for Talented Youth program via Dublin City University. He was invited to participate because of his very high maths score on the national standardised test. So, off we went, me proud as punch of my youngest son and excited for the possibilities ahead of him.

We drove up to the beautiful centuries old buildings of the IT Carlow Wexford Campus. The first hurdle was seeing all the other parents with their children go up steps to get in the door. “Around the back of the building” I hear a man tell me. Sure enough, there was a ramp around the back. We get inside and discover hurdle number two.

Declan’s assessment is being done upstairs and there is no lift in the building. 

I give him an encouraging talk and send him alone up the stairs amongst all the other families. Declan, my sweet youngest son, is terribly shy and I knew he’d be nervous beyond words. Out of an office comes a lady who turns out to be an instructor. She kindly stood with Brendan Bjorn while I ran up the stairs to get Declan sorted and explain to the CTY team why he was up there on his own. And with that, back down the stairs I ran. The instructor had a meeting to get to.

About 30 minutes into the assessment, Brendan Bjorn began to fill the hallway with quite the pungent odor. Yep, he pooped. There was, of course, nowhere to change him.

He had to sit in a poop and pee soaked nappy for 2 hours until we got home. He deserves better.

Brendan Bjorn and I spent some of the time waiting in the canteen. At a table near us, 4 women sat chatting. They were obviously instructors at the school by the conversation being had. I sat there remembering when I used to be just like that – sitting at my place of work having an intelligent conversation with my professional peers. I nearly broke into tears. All of that was a lifetime ago.

After the assessment was done, it took a few people going upstairs to look for Declan as other kids were beginning to come out of the room. Eventually one of the assessment instructors came down and said she’d go back up to tell the other instructor to send Declan down. Definitely a group effort, but it was done!

As we drove through Wexford town on our way home, we discovered there was an ice skating rink put up on the quay. It was surrounded by Christmas lights, making it all very festive and inviting. I found myself once again having to apologise to Declan because we couldn’t stop…because of his brother. I left the last part of that sentence out. It’s standard unspoken understanding in our house now. I don’t want it to be, though.

More and more, I want to be free to take Declan on adventures, big and small and in between. 

I wanted so desperately to stop and go ice skating with him! He’s never been. In truth, there is so much he’s never had the chance to do. I wanted to hold his hand as we skated around the rink and before he’s of the age he won’t want my hand in his any more. He still does, you see, and that special time of youth is quickly passing by. With each year that screams past, I can feel my anxiety screaming internally along with those precious, fleeting years. I need to experience these things with Declan now, and I simply can’t do most of those things while his brother is with us.

And I hate myself for even thinking this way.

The fact I’ve gotten to the point of being able to say anything remotely close to this tells me just how burned out I am becoming as a carer. 

I just want respite. Strike that. I need respite. Regular, weekly, respite. I want to be able to leave the house with Declan…just the two of us…free to discover what little adventures await us without having to worry about stairs or steps or lifts or narrow doorways or rain or wind or nappies or feeding pumps or gagging or vomit or seizures or pressure sores or…

…without having to worry about anything or anyone but us.

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International Disability Day

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Today is International Disability Day. No, I’m not disabled. I can only write from the perspective of caring for my profoundly disabled teenage son, but I will write about disability today because I am his voice.

Not enough is said about the needs of the profoundly disabled. Those children and adults who are fully dependent upon a care giver (usually a family member) to assist with every daily care task there is to be done. I’m talking about those children and adults who are totally incapacitated. This is the sub-group of people with disabilities that I am writing about today. People like my son, Brendan Bjorn.

Generally speaking, profoundly disabled, incapacity children and adults depend on their carer to be their voice in the fight for their rights and needs. So, in my opinion, you cannot have a discussion about disability rights without also including the carers of those with profound disabilities.

I am going to emotionally vomit here, so hang on tight. (I got that phrase, by the way, from a friend of mine who lost her daughter recently to complications of the same condition my own son has. It’s a great phrase.) I could write with a tone of professionalism and articulation that would represent my graduate level education, but I’m not going to do that today. I am going to write from my unfiltered heart today, with all the raw emotion that I feel.

Here comes the emotional vomit.

I’m pissed off. I’m disgusted, angry, hurt and heartbroken. I’m also exhausted and don’t want to be a carer anymore. I just want to be his mother. I want someone else to do the nursing care duties for me. I’m tired of changing nappies, administering medications multiple times a day, hearing alarms going off even when they’re not, lifting when my back says don’t do it…and so much more. I’m tired of being a nurse 24/7. I’m so damn tired.

Go back to me being pissed off, etc. I feel that way because of the feeling of not wanting to care for my beautiful, first born son anymore. Pissed off because if profoundly disabled people like my son had the full, proper supports, services and equipment they required, parents/carers like me wouldn’t be driven to this point of wanting to give up on someone they love more than life itself! Is anyone really f*cking listening?! No.

No one is really listening. 

I’m sure I’ll get a few messages saying, “I do hear you, Tracy” but that is where it will end. That’s where it always ends. I’m sorry, but to be blunt, people in my situation don’t want or need platitudes or words. We need action. Nursing help in the home. Respite away from the home. A f*cking overhead hoist system to safely lift my completely incapacitated adult sized son with a spinal fusion in and out of his bed rather than me f*cking lifting him manually on my own! Time off of this 24/7 work saving his life daily while at the same time knowing he has a life-limiting condition and so my work is, to be frank, saving my child who I know will one day die. Hard to read that, isn’t it? Imagine living with it every day.

Do you know how much it weighs on a person’s heart, mind and soul to devote every fiber of their being saving their own child knowing that one day they may very well wake up and discover their child did not wake up? It is horrific! And yet there are no counseling supports provided for parents in my situation in Ireland. What an appalling state of things.

People like my son aren’t valued by the society or the government. If they were, I wouldn’t be writing this piece with such emotional vomit. Instead, I’d be talking about how great it is that I can continue with my career while I know my son is safely being cared for by a nurse at home or how my other son would have a typical social life and be involved in activities outside of just school or how he and I would have the freedom to go anywhere we want pretty much at the drop of a hat because there would be a nurse to care for his brother at home.

We could be “typical” – even if only for those times when nursing help was there to provide care. I’ve not had any in-home nursing respite provided by HSE since summer of 2017. I’m tired.

Talk of inclusion in Ireland at the moment is remiss as well. Another thing that pisses me off. Those organisations who have the loudest voice don’t include the voice of the carers of the most profoundly disabled children and adults in the country. Why? Because people like my son aren’t valued, as I said above. And it is this fact which leaves me heartbroken and disgusted.

It’s not just the government who are guilty of this value judgement and prejudice. It’s the culture and the society, too. And it makes me damn sick because it is that same judgement of unworthiness which translates to a lack of care and support services for the profoundly disabled children and adults, and ultimately for their carers, too. 

What can YOU do to fight for the services and support which children and adults with profoundly disabilities need? Ask yourself, please, because carers like me are ready to give up caring.

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