It was my usual early morning start today with Brendan waking up a bit after 6am. It was the start of what has been a very busy day. 12 hours later and the day isn’t over yet.

Once I got Declan off to school, I started getting Brendan ready to head out for the first appointment with our new GP. Getting him ready takes about an hour. Loading him into his wheelchair, then into the van, takes about another 15 minutes. It’s not a quick task, to be sure.

In the midst of getting Brendan ready, the post came. A letter changing the appointment time to see his new Paediatrician. (Insert a rise in blood pressure) The appointment with the new dietician was scheduled for immediately after the original appointment with the Paed. Now, they were 3 hours apart. Brendan is on a 2 hours maximum restriction sitting in his wheelchair because of his recently-healed pressure sore looking very red again. Considering the 30 minute drive to the hospital, the 30 minutes back, and the time taken in the appointments, he’d be stuck in his chair – on his pressure sore – for approximately 5 to 6 hours…and that just can’t happen. So, I rang to change the dietician appointment, but had to resort to leaving a voicemail. No surprise there and no reply since.

I’ll never stop saying that sending a letter to a patient to notify them of an appointment, or a change to an appointment, is a frustrating and nonsensical way of doing business. Ring the patient, tell them what dates/times are available, and let them choose. Happy days for both parties!

Brendan and I got to the new GP clinic no bother, that is until we went down the path to the side of the building to find the door to the lift up to the clinic. The path was barely wider than Brendan’s chair. We get to the door. It opens outward. I couldn’t reach it and with the narrow, walled footpath, I couldn’t turn him around. So, I backed him up down the path, turned him around, and wheeled him backward back down the narrow path to the door. I pulled the door open, held it open with one hand while trying to pull his chair in with the other hand. Yeah, it was pretty much a disaster. Just another example of how wheelchairs are not considered. Accessible? Yes. Barely accessible? Definitely better put.

We get to the lift, go in, and the doors won’t shut because Brendan’s chair is fairly big in comparison to a lot of wheelchairs. So, I had to lift him up in his wheelchair and wedge him in at a 45 degree angle, with me stuffed in the far corner of the lift. Finally, the doors closed and up we went.

Shall I mention that *barely accessible* issue again?

The GP was running late and without me saying too much, the appointment was rushed toward the end. I didn’t get to tell him some of things I was really hoping I could. I left feeling like he was glad to see me go. Now, I’m not saying that’s how he felt. I’m saying that is how I felt in the rush for him to see the next patient.

After the appointment, Brendan and I took a quick stroll along the boardwalk. Wouldn’t you know, he ended up with a dirty nappy. It wasn’t pretty. In fact, when we got home, I ended up having to remove the seat and back of his wheelchair to remove the covers so to wash them. Then I had to scrub down his wheelchair on one side. Yeah, you get the idea of what happened. As they say, sh*t happens…and trust me…it did!

I also received confirmation today that I will not be able to get a Rebuilding Ireland home loan because I am a full time carer, and being a carer 24/7 is not “employment” in the eyes of the government. The struggles that full time family carers face as they are relegated to social welfare is soul destroying. 

With only a few months left to get a safe, suitably-modified bungalow for Brendan before his spinal fusion, this is truly a crisis situation.

Declan goes off tomorrow evening on his first camping trip with Scouts. That’s me tonight – finishing up the packing of gear and double checking the long list of items he’s to bring. Homework, dinner, and here I am, sitting down for a few minutes before carrying on with the bedtime routine for both boys, washing up, wheelchair re-assembly, laundry and finishing off the camping gear packing.

…and the day isn’t over yet. 

I’ve had people ask me why I don’t give up – Give up advocating for disability and carer rights. Give up pointing out the failings of the government when it comes to those rights. Give up fighting for suitable housing so I can properly care for my son. Give up going public about our struggles on this journey. And, I’ve even had people ask me why I don’t give up Brendan Bjorn.

I don’t give up because if I do, who will take my place?

I know that some people get tired of my posts about disability on social media. I understand that, although I think they should ask themselves why they get tired of it. Why don’t I give up talking about it? Because the fact is – you or someone you know, maybe even someone you love with all of your heart, is or will become disabled at some point in your life. I think at the core of people’s avoidance of this subject is fear. Fear that *it* could happen to them, to their child, or to a loved one. Trust me, I never could have dreamt I’d be on this path today…but here I am.

So to those of you who may have issue supporting the disability rights cause, I ask you to consider what I’ve just said and then do all you can to assure reforms are made sooner rather than later. This isn’t just my future. It’s yours, too. 

In 2007, I established the CMV Foundation (dissolved as of 2015) because I couldn’t give up my desire to have the world know about CMV and to protect their unborn babies. I was filled with rage at the specialists not warning me about CMV. I was consumed with grief and heartbreak over the news that my perfectly healthy son was, in fact, not. Honestly, if I didn’t start the charity and become such a passionate advocate, I think I would have imploded with all of the rage, grief and heartbreak. 

And as I sit here today, not much has changed in that regard. 

I can’t give up my fight for housing, because this is the last dream I can make come true for my precious son: To provide him with a safe, warm, dry, suitable home in which he will spend his remaining years with me and his little brother, creating memories that will last us through our lifetimes. So, I can’t give up. I won’t give up, because he deserves this, at the very least.

It was this week 5 years ago that I took Brendan and Declan on a trip to Universal Studios in Florida. I looked at the photos on Facebook this morning as they popped up to remind me of the trip, and I cried. Oh, how I cried bittersweet tears as I realise Brendan will never travel outside of Ireland again, his body having grown far too fragile for such adventures.

But, it does my heart good to know I took him on as many adventures as I could!

Disney World and Universal Studios. Up into the mountains and to oceans and lakes. He’s seen Old Faithful blow, fireworks light up the sky and felt snow fall on his face. He’s been fishing and has flown a kite. He’s travelled in airplanes across America and Ireland and the UK. He has met a President and celebrities and has been on TV across America – and his share of media here in Ireland, too!

I am truly happy he got to experience those things while he could.
I just hope I’ve given him enough adventures to fill his lifetime.

So, I can’t give up. The fight continues, not just for our own personal journey and for what Brendan Bjorn so desperately requires, but it also continues for me and for you…all of you I don’t even know…because I will be disabled one day. And you just might be, too. I want it to be better now, for Brendan, and for us whenever we may need it to be.

Life isn’t always what we dream it to be, but so long as we do our best to make it all it can be for those we love, then we can dream new dreams.

 

Because of my son, Brendan Bjorn, who is severely disabled with profound care needs, I am on the disability-modified housing wait list, but let me be clear right from the start of this piece, my family is NOT included in the statistics I am about to discuss. Why not? If a family is availing of HAP, as just one example, the Department of Housing does NOT include them in their housing figures because they are then considered to have their housing need met.

I start this piece with the above information because it is a tremendously important omission – and dare I question, intentional? 

To get a truly accurate picture of just how many people with disabilities are waiting for suitable, modified social housing, it is my opinion that the Department of Housing MUST include everyone who is currently deemed to have their housing needs met. Clearly, their needs are NOT met or they wouldn’t be seeking DISABILITY SUITABLE HOUSING from their county council. 

With that logical clarification, let me move on to the statistics. Again, keep in mind families like my own are NOT included in these figures because we are currently availing of HAP on the private rental market (albeit in a completely unsuitable, unsafe house that is over 100 years old in which I cannot even shower my 13 year old son).

*All statistics are taken from the Summary of Social Housing Assessments 2017, published by Rebuilding Ireland in December 2017 using data compiled in June 2017*

In this report, disability is divided into 5 categories: Physical, Sensory, Mental Health, Other, and Intellectual. The total amount of people with disabilities shown waiting for suitable social housing is 5,772. The breakdown is as follows:

• Physical – 2,084
• Sensory – 381
• Mental Health – 1,691
• Other – 45
• Intellectual – 1,571

There is also an Exceptional Medical Needs category, not listed with Disability, and that figure is 1,564.

Almost 15% of households on the housing waiting list have special accommodation requirements. 

There are 4,326 people awaiting suitable social housing who have Enduring Physical, Sensory, Mental Health or Intellectual Issues.

There are 2,084 people with Physical Disability awaiting suitable, modified social housing. I repeat this number from above because their requirements are generally not met by the typical social housing unit which is a semi-detached house where the bedrooms and bathroom are all upstairs. Often, what is required is special housing such as modified bungalows which must be built or acquired by the county council. This is simply not happening, at least not anywhere near the rate required.

Again, at the risk of repeating myself, keep in mind that people who receive HAP, RAS, SHCEP, or people on the transfer housing lists are deemed to have their housing needs met so are not included in these figures. 

It leaves me to wonder…

What would the figures be if these people not included were actually included in this report?

What would the figures be if each county was to state how many are on their specific disability housing lists, regardless of if they avail of other schemes at the moment? (Note: not all councils consider anything other than physical disabilities for their disability housing list)

What does it take for the members of society with disabilities to be treated with the same level of equality, respect and dignity afforded to those who are not disabled?

At what point is our society going to realise that disability is the only minority group that anyone can join at anytime? And if people realised that fact, would it change the way people with disabilities are treated? I would like to think so. 

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

 

Last week, I spent a couple of days in my pyjamas. I didn’t shower. I didn’t set foot outside the door. I shut off social media. I did just what I had to do to take care of myself and the boys. I cried. A lot. And I wondered if my boys would be better off without me. This is depression. This is being in an emotional rut where the walls of that deep-seated rut start to crumble in upon you. Here in Ireland, we are slowly beginning to talk about mental health and depression, but when it comes down to it – when a friend shows all the signs of depression or actually says aloud they need help – do we reach out a helping hand? 

Let’s just say, I think we have a long way to go in this regard.

We need to keep talking about it. And, we need to learn what to say in return.

Two friends contacted me to see if I was ok. No, frankly, I wasn’t. And I’m still trying to climb out of those crumbling walls. But I will, because I must, for the sake of the boys. Having said that, my physical health is also taking a toll on me with anxiety, stress and depression only adding into the mix. I’m often trembling. I’m in chronic pain with arthritis and degenerative discs in my back. I can’t sleep well. I have intermittent chest pains and increasing issues with the PSVT, diagnosed years ago, as it’s getting more frequent and noticeable. My rheumatoid arthritis is kicking up again, and with it, secondary restless leg syndrome that makes it hard to fall asleep at night. (I’m a mess, right?!)

I need to get both my physical and my mental health into shape. And quickly. 

Now that Brendan’s pressure sore has recently healed, I am going to see if he can tolerate attending school a couple of partial days a week. Truth be told, I need it more than he does. Summer is fast approaching and I won’t have any chance of getting out on my own for a walk once it’s here.

Today, though, I went for a walk.

Brendan Bjorn is away for 2 nights of respite at a centre, which, by the way, he will only be able to attend until the end of September. (He turns 14 on October 1st and HIQA doesn’t allow 14 year olds to be in respite with younger children. Seems ridiculous considering the fact my son can’t hold anything in his hand, can’t walk, can’t talk, can’t even scratch an itch. So anyway, that will be the end of that overnight respite.)

Back to the walk…

I took Thor, my wonderful, furry companion, for a long walk along the river today. It was grey and overcast with a cool, soft breeze. My God did it feel great to be outside! Free. Exercising. Breathing crisp, fresh air. Being in nature. I miss it so very much! And as I walked along, thinking of everything happening in my life, I realised I need this as much as I want this. 

Sadly, it isn’t going to be able to happen all that often. There isn’t any in home respite nursing available (haven’t had any since last summer), and even if there was, the Loco Parentis clause is now restricting parents from leaving the nurse alone in their home during “respite” – so there is no true respite. *Feel free to contact your local TD about this issue, please.*

I wonder, how am I going to get this much needed time walking? 

The answer is, I probably won’t get it very often. The walk today left me wanting more. Much more. But like the taste of sweet forbidden fruit, it was just a tease…a cruel tease…and one which I know I won’t be able to taste again for some time to come. And that realisation makes those fragile walls crumble just ever so slightly again.

 

 

It was 10 years ago, on 5th of April 2008, that Brendan Bjorn had his first seizure. He was 3 1/2 years old at the time. Such a little guy compared to the big boy he is today. I was 7 months pregnant with Declan at the time. I thought Brendan had been lucky and avoided epilepsy, despite his brain damage, because he’d made it that far without any seizures. I was very wrong.

That evening 10 years ago today is one I will never, ever forget. 

He was sitting in his special needs comfort chair after dinner, happy as he always was. Suddenly, he went into a full body, tonic-clonic seizure. He began vomiting out of his nose and mouth while convulsing violently. I was terrified. Absolutely terrified. I rang for an ambulance, which only took a few minutes to arrive, but which felt like a lifetime. I had been fired from my much loved job only a few months prior (because I was pregnant and unwed, working in a Catholic school). The pregnancy was full of complications including gestational diabetes and pre-eclampsia. But there I was, heavily pregnant, holding on to my precious boy while praying for him to hold on, unsure what to do for him. Unsure what the future would hold now.

The ambulance trip to the hospital was also one I will never forget. It would be the first time Brendan would be taken by ambulance to a hospital, but it certainly wouldn’t be his last time. The paramedic was working on Brendan, monitoring his O2 and heart rate, while also asking me if I was feeling ok physically. Honestly, I didn’t know. I was worried about both boys at that point.

That day would end hours later with Brendan being sent home with orders for me to just observe him and call the paediatrician if there were any more signs of seizure activity. Fortunately, I had the most amazing paediatrician who had given me her mobile number the first day she met me and Brendan. She answered her phone day or night, and in the weeks that followed, I rang her a number of times as his seizures continued – usually in the middle of the night. I had him sleeping with me so I could feel his body if he seized, and it was a good thing that I did, because otherwise I wouldn’t have known.

Fast forward 2 years to the day – 5 April 2010 – and Brendan Bjorn had another major seizure, stopped breathing, and turned blue. It would be the second time I had to call emergency services for him. (Today, I can’t count how many times, it’s been that many.) He was non-responsive. The paramedics had to suction his airway and bag him. It would be another trip in the ambulance, but this time it would be me and Declan, not even 2 years old, following behind in our van. And with that, Declan began his life seeing paramedics rush into our house, work on his brother, carry him out on a stretcher and take him away with lights and sirens going.

Today…10 years since his first seizure.

In that time, Brendan Bjorn has been diagnosed with 2 rare syndromes in epilepsy: Lennox-Gastaut Syndrome (LGS) and Electrical Status Epilepticus of Sleep (ESES) (he’s in it 75% while awake, as well, which is rare). He is also at high risk for SUDEP – Sudden Unexpected Death in Epilepsy. Yes, death.

His complex, intractable epilepsy is one of the likely ways I will end up losing my precious angel some day. And that fact sits very heavy in my mind and on my heart.

Emotionally speaking, I’m having a tremendously difficult night. It seems all of the struggles of late – mainly Brendan’s poor health with the pressure sore and our continued fight for the urgently needed fully suitable home – have now been made too much when thinking of today’s 10 year mark. Please, don’t get me wrong. I cherish every single day I am blessed to have Brendan Bjorn in our lives! I am so fortunate he has gifted me with being his mother the past 13 plus years, for he has taught me the most incredible of life’s lessons. But tonight…tonight I am worn out…my spirit exhausted. I am just so incredibly tired of having to fight for everything he needs. He deserves the world, but I can’t even give him a shower where we live. A simple shower, for God’s sake.

Tonight, my heart truly aches as I think on the last 10 years since that first seizure and everything he has been through and continues to go though.

My beautiful, gentle warrior…Brendan Bjorn.

 

 Brendan Bjorn, 5 April 2010

I’ve often thought that the way to get any Government to listen is to put it in terms they understand – MONEY. So, I will discuss here the costs – and the savings – to the Government when it comes to full time family carers such as myself.

May they actually listen…and then begin to make much needed reforms to help the carers of Ireland.

THE COST: 

The most a carer on Carer’s Allowance receives per year is €10,868. There are very important points to highlight regarding this payment:

• Only 25% of Ireland’s unpaid carers are in receipt of Carer’s Allowance
• To receive this allowance, the family carer must be working full time (35+ hours per week) providing care.
• This is the only social welfare payment requiring full time work in order to receive it. Mind you, that work is in the home, unpaid, and precludes the carer from working outside the home and as such restricts them from contributing to a pension via employment.
• Carer’s Allowance is means tested.
• 1 in 10 people in Ireland is a family carer.
• The State spends €11m less on homecare compared to 2008.

 

THE SAVINGS:

Family carers provide 16 million hours of unpaid caring each week in Ireland. Imagine if family carers were to stop providing those 16 million hours of unpaid caring each week in Ireland. What would be the consequence to the Government and our healthcare system?

• Our healthcare system simply could not handle accommodating the care needs of tens of thousands of people currently being cared for at home by family carers if family carers were to choose not to provide, or were no longer able to provide, in home care. As such, family carers save the State billions each year and keep the healthcare system from totally collapsing.
• The average daily nursing home care costs €167 vs. average daily in home care costs of €45.
• Public nursing home care cost average €1,407 per week. Compare that to the weekly cost of a home care package which would range on average from €350 – €500, depending on the level of care required.
• Inpatient, public, acute hospital care costs average €6,365 per week.
• As I stated above, family carers provide 16 million hours of unpaid caring each week in Ireland.  If those services were purchased, rather than provided by unpaid carers, it would cost the State €10 billion per year – a figure that is 10 times what the Department of Social Protection pays to carers.
• In other words, a family carer who receives the full Carer’s Allowance at €10,868 annually, provides €66,500 worth of services annually.
• (note: many of us, like myself, only receive half-carer’s allowance, and 3/4 of carers do not receive Carer’s Allowance at all)

 

HOUSING: 

Many of us who have a family member with disability are stuck in unsuitable – and often dangerous – living situations. Our loved ones are often left without many basic care needs such as access to proper hygienic bathing equipment, safe methods of transferring, proper sleeping arrangements or systems, and much more. I know parents who sleep in the kitchen or dining area just to be near their child with disability. I know parents who receive no in home help or respite at all. I know parents who are trapped in homes that are a danger to not only them, but also to their disabled child.

• Modification grants only apply if you are fortunate enough to own your own home, but as you remind yourself of the above financial figures, you can see why homeownership is but a dream for many carers like myself.
• HAP is an utter failure for families with a disabled family member who require a specially modified home – the homes simply are not the type found in the private rental market which is in crisis, over-priced, overly-competitive and lacks any security of tenure.
• Social housing finds families like mine waiting years, clawing up the waitlist against other families who are also in desperate need of specially modified housing (and what a cruel position to be forced into against each other, might I add).

County Councils are acquiring homes for social housing, but at what rate? And, when it comes to those of us who need those specially modified homes…most likely bungalows, an even harder find…how often are those type of homes being bought?

I look back to just 9 months ago when the Dublin CoCo purchased 19 luxury apartments in Marianella to be used in their social housing supply. The prices of each apartment ranged from €270,000 to a staggering €480,000. EACH. While I understand that housing prices in that area of the country are more than in the area I live in, I still have to question the rationale for such an expenditure.

And in turn, I have to wonder why I was told that the already modified, disability suitable bungalow for sale only 5 minutes away from where I currently live, is “over the allowed acquisition price” when it is barely over the €270,000 figure paid for a 2 bedroom apartment in Dublin. WHY? I must ask why, especially considering that families like mine require these modified homes for the safe care of our disabled loved ones.

Specially modified, fully suitable, homes should be considered
as necessary medical equipment for people
with severe disability and profound care needs. 

For the price of one 2-bedroom luxury apartment in south Dublin, the same funding amount could purchase a modified, forever home for a family like mine so that they can safely and humanely care for their loved one with disabilities.

To any Government officials who just might read this humble blog post, I ask you to remember that the tens of thousands of unpaid family carers across Ireland are indeed saving the State billions of euro each and every year.  We deserve far better, as do those beloved family members we have dedicated our lives to caring for, day in…day out…

 

* Credit for all statistics regarding carers, Carer’s Allowance, and related figures, goes to Family Carers Ireland via their report entitled Economic Value of Care – Why Carers Count. Many thanks for allowing me to utilise their report for the writing of this article.