The end of Carer’s Week being a carer to a child with profound needs

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It’s the end of another Carer’s Week. This post is a shout out to all of the parents who, like me, care 24/7 for their disabled child with profound care needs.

Many of us administer medications on a daily basis which truly save the life of our child. I’m not talking Calpol. I’m talking medications such as epilepsy meds which keep our child from dying in a seizure or going into status or not waking up due to SUDEP.

Many of us monitor O2 levels, heart rate, and lung function throughout the day and night.

Many of us do physio/OT work on our child with hip dysplasia, scoliosis, cerebral palsy, and/or osteoporosis without even blinking an eye.

Many of us give complete bed baths to our fragile child, all the while being mindful of positioning to avoid further complications to an already complex care regime.

Many of us have watched our child turn blue while in a seizure, yet remain calm as we administer the rescue medication and grab the O2 and place the mask or cannula on our child’s convulsing face.

Many of us clear airways, monitor aspiration risks, mindful of positioning while sitting, lying down, being transported or repositioned.

Many of us do this alone as single parents.

Many of us do this despite our own increasing physical and mental health struggles.

Many of us do this work with literally no break, no free time, as our child is housebound or bedridden.

Many of us do this work without any respite or home help.

And we all do this without pay, especially pay commensurate with the level of skilled medical care we provide. Nor do we have a building pension to help care for us when we are the ones who will need the care.

So to all of you who walk this same journey, and as another Carer’s Week comes to pass, I extend my solidarity to you. Let’s keep advocating, keep fighting, until the systems that should be supporting our children’s needs, and indeed our own needs as carers, are reformed to the point we no longer have to fight for even the most basic of needs to keep them alive and thriving. Let’s support each other as best we can while trying to keep our own heads above water. For our precious children.

 

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What we need for Carers Week 2019…and every day to follow.

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It’s that time of year again. It’s Carer’s Week. The week where carers such as myself are put on a pedestal of praise made of sand, ready to get it washed out from under us later today when the tide rolls in.

I can’t speak for anyone but myself, but I dare say I know that I’m not alone when I say the following:

  • I don’t want the praise. I want actions of positive reform to make my life more tolerable…and maybe even a little bit enjoyable.
  • I don’t want the free luncheon or weekend away at a resort as a way to say ‘thank you for your sacrifice.’ Anyway, I can’t get out of the house to attend. I would rather see the funding spend on more overnight respite, in home respite, or put into the special medical and educational requirements for children like my Brendan Bjorn.
  • I don’t want to read a week’s worth of newspaper articles about the mental health needs of carers in crisis, only to see it once again go nowhere when the week is over. I want to see counseling services made available to carers like me, and our family as a whole, and to be available in home if required. 
  • I don’t want platitudes and condescension. I want intelligent, timely dialogue and for our needs to be heard – and then acted upon. 
  • I don’t want others making decisions for me and my family, such as the steering group which discussed Loco Parentis last year without including a parent representative. I want family carers like me to be at the centre of discussions and decisions about such important issues that will impact our daily lives.
  • I don’t want every single day be such a fight, but it is. A fight for services; a fight to organise my son’s needs; a fight financially to survive; a fight to not completely breakdown or give up, worn out from all the fighting, the isolation, being housebound, and having no help with the nursing level care I do literally 24/7 all on my own going on 15 years now. I want the system to see that parents like me need a wraparound service to provide holistic supports, and then for that system to actually provide those supports. 

And I don’t want to continue feeling the way I do: lost, alone, exhausted, broken.

I want to feel whole again. I want to have a social life with friends. I want to utilise my education and experience outside of the home. I want to have people reach out to me because they actually like me, Tracy, not because they feel pity. I want to be free again to go on hikes, go to the beach, take long walks, or wander around a museum. I want to not feel like my life is passing me by and that I’ll die with these same feelings, nothing having changed.

So, no. Please don’t put me on that pedestal of praise built of sand. I know the tide will come in later today to wash it out from under me. 

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Carers and mental health: Why I don’t hold out hope for help.

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There was media focus last week in Ireland around the mental health struggles of family carers such as myself. The focus was prompted by a study on the same by Family Carers Ireland and the College of Psychiatrists Ireland (see information here). I’m going to apply a bit of “tough love” in this blog piece. And, as always, be brutally honest with my emotions. First, some statistics:

  • 1 in 3 family carers is diagnosed with depression.
  • Approximately 2 in 3 are providing over 100 hours work per week.
  • 4 in 10 are diagnosed with anxiety.
  • 2 out of 3 carers have suffered ill health and feel it is linked to being a carer.
  • 71% of carers loved ones have NO access to respite.
  • 72% of carers worry about not having enough money for the future.
  • 40% suffer from back injuries.
  • 74% worry about what will happen if they die or get ill and can no longer provide care for their loved one.

Read the above linked report for more data.
Please. Read it. 

Ok, so, now what? What will come out of this important and eye opening report?

As I sit here before giving Brendan Bjorn a bed bath, having read the news this morning that homecare packages are frozen until November, and contemplating the €180 I will spend tomorrow for a mere 4 hours of nursing respite so I can finally leave my house with my other son, Declan, after being housebound for months, I have to ask…what will come of it?

I’ve been writing about the mental health struggles of carers for years now. The last time I was brutally honest about my own depression and anxiety, for which I am on medication, I wrote about having hit a low point one night where I experienced suicidal ideation (but came out the otherside). Brendan Bjorn’s social worker called Tusla to report it. There was no direct contact with me by the social worker about it. No reaching out to discuss options for intervention such as counseling. Just a terribly misguided report to Tusla – which thankfully went nowhere because they realised I was not going to actually go through with the ideation of ending my own life.

So again I ask, what will come of it?

Let’s face some more facts:

  1. Here in Ireland, there are plenty of platitudes thrown around about supporting mental health, but when it comes down to actually taking action, very little is done to support the most vulnerable, such as the carers statistically highlighted in the above report.
  2. We don’t have enough mental health professionals in Ireland.
  3. The waitlists are years long, especially for paediatric services.
  4. There are, from what I can determine, no home based counseling services, either.
  5. Then there’s the budget. Will the government actually increase funding for such services? I have little to no hope of that happening.

As a former mental health counselor, and as someone who has received in home family counseling supports, I cannot emphasize enough how vital this service is to families like mine who are housebound and/or who are dealing with a palliative care scenario. I would advocate that there needs to be a wraparound, paediatric palliative care service in Ireland which would include in home family counseling. One thing the above report doesn’t address is the mental health impact on the siblings of families such as mine. I can tell you, there is great need but no support. I advocate for Brendan Bjorn’s needs all of the time, and for those of carers, but what I seldom speak publicly about is the equally important – and urgent – needs of children like my son Declan.

Can you imagine what it is like growing up knowing you will one day lose your only sibling? I can’t even imagine that.

Can you imagine knowing that you care 24/7 for years on end, fighting day in and day out for the required treatment and services for your precious child, knowing one day you will have to bury him? That, I can imagine. That, I live with. Every. Single. Day.

I said at the beginning of this piece, I would apply a bit of tough love and be brutally honest. Well, there it is. Unless you have walked on this very journey, you cannot even begin to comprehend what that fact does to your mental health. It’s not the same as losing a parent. I’ve done that, twice, and in my opinion, it’s the natural order of life. But your child? That brings what I have is no doubt the hardest emotional, psychological, stressor one could ever go through: When you would do anything, give anything, to trade places so that your child could live, but nothing –  absolutely nothing – you will ever do could see that desperate desire come true.

And yet, there are no home based mental health counseling services for families with children who have a life-limiting condition. 

Family carers have countless stressors that are out of the norm compared to other typical families. I again refer you to the report above. Carers are truly in crisis, left with little to no supports to continue their 24/7 work, which saves the State €10 billion per year, trying to keep their loved one alive. We have extraordinary financial concerns, fight broken systems on a daily basis, sacrifice our own mental and physical health doing everything required for our loved one, while going relatively ignored in our pleas for help and reform, including of mental health services.

And many of us do all of this knowing that one day we will no longer have the child we love more than life itself, and we will be left a shadow of our former self, broken physically and shattered emotionally, by a system that didn’t care enough to help those who care the most.

Who will be there to pick us up off the ground when there aren’t even mental health services to help us in the midst of our struggles now?

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Where did that thought come from?

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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.

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Brendan Bjorn’s brother

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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.

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Colourful walls and playful pets

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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. 

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Open letter to the Irish Government re: the in Loco Parentis rule

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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?