Sometimes, even after nearly 15 years on this journey with a severely disabled, medically fragile son with profound care needs and a life-limiting condition, thoughts come into my head that surprise me. Today was one of those times.

I was changing Brendan Bjorn’s nappy and re-positioning him this afternoon when he began to shiver. Jokingly, I blurted out “You shoulda been out there mowing the garden with me, mister. I’m still sweating!”

After 14 plus years, where did that come from?!

Talk about a combination of guilt and sadness overwhelming me. While I was saying it in jest, it was certainly something I would more likely say to Declan, not Brendan Bjorn.

I stood there for a minute, shocked that the thought even crossed my mind to joke about him mowing the garden. I’ve no idea where inside of my mind that came from, but, there it was.

Maybe it came from the same place that, on very rare occasions, in a split second, thinks how we should all go for a bike ride on a sunny day.

Yeah. It does happen. Those thoughts of impossible actions that leave parents like me bewildered and heartbroken all over again.

Maybe those thoughts come from the place in our minds, or hearts, that still wants to magically believe all of the barriers that come with severe disabilities can disappear.

I don’t know. What I do know is that it would far easier if my mind and heart would no longer think of things that can never be.

I leaned over and gave him a snuggle, saying, “I know you’d be doing the mowing for me if you could, baby.” And I have no doubt that he would.

The siblings of a disabled child, especially one with such complex medical needs as Brendan Bjorn, often get overlooked. My youngest son, Declan, is no exception. Tomorrow, on May 23rd, Declan turns 11 years old. I will do my best to make it a very special day for him, but with the restrictions centred around Brendan Bjorn, it limits us greatly.

Last night, Declan came up to me while I was in the kitchen. “I bet you’re going to surprise me for my birthday and we’ll go somewhere!” My heart sank. No, Declan, you know Brendan can’t get in his wheelchair. “I know but I bet you’ve got someone coming in so we can go to the cinema or something like that, don’t you?” He had a huge smile on his face. It was all I could do not to cry.

“I’m sorry pet, but I don’t. I’m sorry. I hope you understand that if I could, I would absolutely take you out for your birthday.”

His smile vanished. “I know you would, Ma. I was just thinking maybe. That’s ok.”

And my heart broke a little bit more, as I’m sure his did, too. 

This morning, I was on the phone with his teacher about another matter. I asked the teacher if, considering it was Declan’s birthday tomorrow, could he stay home as he’s asked me if he could. The reply was a firm no. That isn’t done. So, when Declan gets home from school today, I will have to tell him that news. I expect upset tonight and a battle tomorrow morning as I try to send him out the door on his birthday for school.

We have been housebound for the better part of 2 years now. 

Other than the 15 nights per year provided by LauraLynn,
we haven’t had any in-home respite since June 2017. 

Brendan Bjorn hasn’t been fit to go to school the past 2 years, either.

And since his spinal fusion 8 October 2018, he hasn’t had the required custom made wheelchair seating, leaving us all unable to even get out for a walk, let alone drive anywhere.

Housebound.

And in these past 2 years, it is Declan who is often the one that service providers seem to ignore the most. Yet, he is the one who suffers the most. 

I am so damn angry that nothing is done to intervene and relieve this situation! There is no home help. No nurses. There is still Loco Parentis, even when/if funding for in-home nursing respite for Brendan Bjorn gets approved, which will restrict me from leaving the home to take Declan anywhere.

My heart aches for Brendan Bjorn and all he goes through, but what I don’t often write about is how my heart is absolutely shattered into tiny pieces at what Declan has to go through. He is such a loving, wonderful young boy and he deserves all the beautiful things that the world has to offer. But he can’t reach them if he’s housebound. I hope someday he understands just how sorry I am at all he’s had to sacrifice. It isn’t right. It isn’t fair.

I’m so sorry, Declan. I’m trying to make it better for you.

If you ever come to my home, you will find colourful walls and playful pets. I’ll tell you why.

I love colourful walls! They bring life, warmth, joy and vibrancy to what are often days filled with monotonous routine and challenges to overcome. They remind me of places I’ve been. They invoke in me a sense of comfort when otherwise I feel like crumbling.

So, if you ever come to my home, you’ll see the places on the ceiling where my brush went astray, no longer having the youthful hands of the artist I once was. I don’t mind, for life isn’t always neat and in between the lines.

You’ll see occasional the drips of paint on the baseboards where I just couldn’t have cared to wipe it off at that point in time. I don’t mind, for sometimes it’s better we don’t try to seek perfection.

And, you might even see a long black dog hair, once belonging to Thor, embedded in the paint that I missed along the way. I don’t mind, for someday I’ll find one and have a laugh thinking fondly on a dog I love.

If you ever come to my home, you’ll be greeted by that same dog, along with his new canine companion, Sif. They will jump and lick and look for love from you. I don’t mind, so I hope you don’t either, for this house is full of love – shared and given. You may also have one of the three cats cross your path, jump on your lap, or rub up against your leg. Again, it’s all about the love. Forget the shedding fur. Just remember the love.

So until we can escape the confines of these walls (and God knows I hope it will be soon!), I will try to keep on painting to bring us more joy. I will let go of frustration at puppy puddles left in the hallway when training isn’t successful and I will play with her instead.

And I will try to keep my spirits up. 

This is an open letter to the current Irish Government regarding the in Loco Parentis rule as it pertains to in-home nursing respite care of disabled, medically complex children and their parent carers who are restricted from leaving the house during the time the nurse is present.

On 27 March 2018, there was a Private Members’ Business Motion on Disabilities in the Dail. Brought forward by Sinn Féin, the motion was unanimously agreed upon that evening by all political parties. Within the Motion was the call to abolish the in Loco Parentis rule. Since that Motion was agreed upon over a year ago, nothing has been done to abolish the rule which restricts parents from leaving their home while a respite nurse is in the house to provide respite. 

The entire Motion proceedings in the Dail can be seen here starting at 6:10.00. The discussion about in Loco Parentis begins at 6:17.45. The debate transcript can be found here.

Here are just some of the comments from that Dail debate:

Deputy Caoimhghín Ó Caoláin – I also call on the Government to immediately abolish the in loco parentis clause in home care nursing contracts. The current requirement for the parent to remain in the home while clinical staff are in attendance, or to appoint another competent adult to attend in their absence, is causing significant and unnecessary stress for already stretched parents coping with the care needs of children with complex medical conditions. For whatever limited period that the parent could have to go about the ordinary out-of-home chores, to visit a shop, to call on a friend or to walk in the rain, surely the presence of a trained nurse or a qualified health care assistant offers the chance of a badly needed and well-deserved break. In these cases, where parents are providing 24-7 care to their very sick child, invariably faced with life-limiting conditions, any small respite is a godsend. We are talking about intervals of rest and relief that will help parents to face all that their child requires of them again. Why must we compound their already difficult days and nights? They are heroic. They are true bearers of pure love. Let us scrap the clause and show some little appreciation and kindness.

Deputy Pearse Doherty – I want to focus on one part of the motion, namely, the in loco parentis clause contained in the contracts for home-care packages for children with complex and life-limiting needs. This policy is shameful and uncaring and it mandates the families of sick children to stay in their homes during nursing visits. It has rendered home-care packages ineffective.

Deputy Margaret Murphy O’Mahony – How we look after and engage with people with disabilities is a hallmark of a caring and compassionate society, and in this House we must set a lead. Fianna Fáil will be supporting the motion.

Deputy Thomas Pringle –  I echo the call in the motion for the removal of the in loco parentis clause in all contracts for home nursing care.

Deputy Mattie McGrath – On the so-called in loco parentis clause, I raised this issue with the Minister for Health, Deputy Harris, last November and I have also submitted several parliamentary questions on the matter but the HSE has refused to change its position. I ask the Minister to review this clause immediately as it is an excessively restrictive provision in the HSE home care day hours support system. At the launch of the Jack and Jill Children’s Foundation service evaluation report by Coventry University and Trinity College at the Royal College of Physicians of Ireland last November, we heard that the HSE in loco parentis rule is having a disproportionate and damaging impact on the families of the sickest children in this state. 

(My own son, Brendan Bjorn, was mentioned that evening as part of the Motion, as I was fighting then, as I am still, for a home care respite package for him. I haven’t had in home respite since June 2017 and he has been bedridden/housebound the majority of these past 2 years.)

Minister for Health, Simon Harris, was not present in the Dail during this Motion. Minister of State at the Department of Health, Deputy Jim Daly, gave the response. Regarding the in Loco Parentis rule, he concluded by saying this: “The HSE is already looking at respite care as part of the national quality assurance process and this will help to inform a review of the operation of the loco parentis rule by the national steering group for children with complex medical conditions.”

My questions, which repeatedly go unanswered despite raising the issue of in Loco Parentis on 3 different radio programs last week and on the Claire Byrne Live tv show this week, are as follows: 

1. Why was in Loco Parentis not immediately abolished as part of the Motion on Disability 27 March 2018?
2. Why has the report from the national steering group for children with complex medical conditions, as mentioned by Jim Daly TD on 27 March 2018, not yet been released?
3. Why were there no parents of children with complex medical conditions included as part of the steering group?
4. Why was in Loco Parentis implemented in the first place?
5. If nurses are trusted (as rightly they should be) to care for children with complex medical needs in hospital without the parent or another adult there, why are they not trusted by the HSE to do the same in the home, especially considering the child is likely to be in better health at home than if they’ve reason to be in hospital?
6. In some cases, such as with my own son, he would have both an HCA (home care assistant) and a nurse present together to provide in-home respite. I have asked that, considering there are TWO qualified staff together, could one of them qualify as the in Loco Parentis. This request has been refused. I ask, why?

Carers such as myself save the State over €10 billion per year by providing 24/7 in home care for our disabled loved ones.

The Government must begin to understand that if carers are driven to the point of no longer being able to care (which, by the way, many of us are at that point), it is the State who will ultimately end up paying a higher price in the way of residential care and increased healthcare costs for the carer’s own failing physical and/or mental health issues, as well as those of the siblings in the home who are having their own well-being adversely affected by being imprisoned in their own home by the in Loco Parentis rule.

The Government must begin to truly hear that they are systematically destroying families across Ireland with this policy – and with what is indeed an overall lack of wraparound support services and care for families with children who have disabilities and complex medical needs.

The Government must recognise that the well-being of carers and their families needs to be safeguarded by allowing them to leave their own home for the mere few hours per week that is to be respite and abolish the in Loco Parentis rule immediately.

If we can no longer do the job of caring because we have collapsed, or worse, from exhaustion, who will take our place? 

 

 

 

I’m tired of fighting. Strike that. What I’m most tired of is being intentionally ignored by those in a position to help, to make reforms, and to actually make a difference. Their apathy makes me sick. And being innately sensitive, it literally makes me sick. The panic attacks where I find myself running out to my back garden, even in the rain, and telling myself to just breathe. The bouts of depression where I cry for no reason, but for every reason imaginable. The anger where I find myself yelling at the dog or the cat or anyone within earshot because, well, there is no justifiable reason.

I am so incredibly angry at the bullshit (pardon me) we see nearly every day in the news of billions of euro being wasted on projects that will see the rich get richer – all masked in the idea that it’s for all of the people’s benefit. But I know full well who will pay, at the end of the day, for those wasted billions. It will be the most vulnerable of our society. It will be children & adults like my son. So, to those making these decisions at the expense of vulnerable lives, I can honestly say that I hate you for it. I hate what you are doing to me, my family, and my fragile son. I hate what you are doing to all of those in need across this beautiful island who are equally worthy but who you, apparently, find unworthy. And I hate that I feel hate. But at least I feel something rather than have the apathetic soul it must take to dismiss the most vulnerable among us.

Lately, I have been saying aloud the 7 words I never thought I’d say about being a carer to my beautiful son.
“I don’t want to do this anymore.”

And I hate myself even thinking those words, let alone ever speaking them.

I’m exhausted, drained, tired. I need to re-charge but I can’t. I’ve tried every tool in my bag of tricks from my former life when I was a therapist. There’s 2 expressions from the therapy world for us who worked in the field: 1. Therapist, heal thyself. 2. You can’t be your own therapist. I know, they contradict each other. Don’t be surprised by that one. So, I’ve been trying the first one but to little success, so it seems.

I need a break from caring. I’m waiting on funding approval for in home respite. (I haven’t had any since June 2017.) And you all know the fight regarding Loco Parentis where parents are restricted from leaving their home during that respite, so assuming the funding is approved, it won’t be what I truly need. Some people say take what you can in terms of in home nursing respite because it’s better than nothing. But part of me doesn’t want to take those crumbs which I know won’t nourish me, because taking those crumbs is like being on a diet: If you have a small taste of something you desperately want, it only makes you want it more. And so, you find yourself not even wanting to taste it again and, instead, you just want to give up on it altogether.

And that’s me growing apathetic towards life.

Carers should never get to this point. Where we just don’t care anymore. If we do get here, it’s a failure of support systems, not a failure of us personally. If we do get to this point, that’s when apathy sets in. Can you imagine thinking that if you had a heart attack, the time in the hospital actually sounds like a nice break? I had this very conversation last week with a fellow carer! If you’re not a carer and you’re reading this, let that line sink in. That is exactly how low many of us are. 

I won’t give up, because I can’t give up.
I’ll probably keep on fighting, because I have to.
But the cost is high.
The cost is my overall health.
The cost is what my son requires.
The cost is a happy, functional family.
And that is why I feel such hate.

 

 

Brendan Bjorn has missed the last 2 years of school due to being bedridden with pressure sores or because, as is the case since he got out of hospital in December 2018, he doesn’t have the custom moulded wheelchair seat he needs after his spinal fusion in October 2018. In those 2 years of missing school, no one has batted an eye.

“It’s not like he’ll ever go to University, anyway.”

No, he never will. But does that mean my son, or any other child in his position, are less worthy of the time, effort and indeed the financial investment which would see him able to attend school? He is a child who loves going to school and interacting with his peers!

He is being robbed of a basic human right
because he is profoundly disabled and thus considered less worthy.

Brendan Bjorn has not had an in-home respite nurse since June of 2017. In these past 2 years, I have provided 24/7 nursing level care for my son without any break, bar the 15 nights per year provided by the wonderful charity LauraLynn Children’s Hospice. Last year, because of him being in hospital for 2 1/2 months, we only got the chance to avail of about half of those 15 nights.

“If the funding is approved for in home nursing respite, you won’t be able to leave the house due to the Loco Parentis rule.” 

No, that’s not respite. That is still me trapped in our home. That is still my other son trapped in our home. Isn’t Brendan Bjorn worthy of having a parent-carer who is recharged, focused, rested, not so depressed, feels like her own self again, in better shape, happier and healthier? And isn’t Declan worthy of having a life of activities outside of the home in which he can grow as a young boy?

Brendan Bjorn is worthy of having me at my best so that, in turn,
I can provide him with the best care possible.
Exhausted, no parent can provide that type of care 24/7.

I have heard it all over the past 15 years…
Put him in care and get on with your life.
It’s not like he has any quality of life anyway.
Can he even learn anything at school?
School is really just a break for you, it’s not for his benefit.
He’s really just a burden on the taxpayers.
You don’t pay taxes; you only take benefits.
Do mindfulness training and you’ll be grand. 

WE NEED TO HAVE A VERY SERIOUS, RAW, OPEN CONVERSATION IN IRELAND
ABOUT WHO WE SEE AS WORTHY
AND WHO WE SEE AS UNWORTHY…AND WHY.

It has become very clear to me that those with the power to bring about equality, fairness, and the basic human rights deserved for our children with disabilities to thrive, find my son, and those like him, as unworthy. 

Have they said as much? No. But unlike all those comments I’ve heard over the years, some of which I just listed above, the silence from those who do have the power to change his life for the better speaks volumes. But guess what? It speaks volumes about their character, not about my son’s worthiness for a life filled with what he needs, wants, and deserves.

And I won’t be silent, because MY SON IS EQUALLY WORTHY. 

And if you, dear reader, agree that my son – and all of the other children with disabilities whose parents are fighting day in and day out for their basic needs, equal rights, fairness, and the fullest life possible – deserve better, than I ask that you, too, don’t remain silent.