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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Levels of disability. Levels of caring. A question for discussion.

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When a child is assessed for services or indeed in a medical setting, there are a series of questions which determine the level of disability. Some of the areas considered are ability, or lack thereof, to perform any daily care activities such as getting dressed, bathing, or eating. Other areas considered would be motor ability, for example when assessing Cerebral Palsy as there are various types of Cerebral Palsy and varying levels of severity. (ie: can the child sit, walk, roll, or hold an object in their hands.)

Assessments are done for respite, educational services, nursing services and beyond. They assist the care provider in knowing what level of services will meet the requirements of that particular child. As a parent, these questions can bring up a lot of emotions as more and more boxes are ticked noting their child is unable to perform each task. To this day, I dread the assessments because of this, and the repetition of saying “just mark everything as a full assist in all daily living activities.”

But I will say this: Over the years, those questions do get a bit easier to handle. 

This point is where I’m going to bring up being a full time carer. I realise in advance I may upset some carers, but I genuinely hope to not do so!

Just as with the varying degrees of disability, there are varying levels of care work provided. It’s actually obvious, to me anyway, that a fully incapacitated and medically complex child or adult will require more intensive work by a carer than caring for someone with mild disability or indeed without any disabilities at all. This brings me to my point – my question, really:

Should family carers also be assessed (as are their loved ones) on the level of care they provide to determine the supports and possibly even level of remuneration for their work? 

If carers were assessed on the level of care work provided – hours spent caring daily, level of medical knowledge and skills required, level of physical work required, for example – could this lead to more supports for those carers who are providing the more intensive caring work? 

I think most full time carers need more support. I do think, however, that the carers who are working around the clock, literally, caring for the most profoundly disabled, are in the most need of supports…just as their loved one is in need of the most intensive caring because of their level of disability.

Let’s have a discussion on how best to support the carers of loved ones with profound disabilities.

 

 

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Dear consultants, GP and nurses

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I have an invitation – no, more of a challenge – for all of the consultants, GPs and nurses reading this blog piece. I’m doing this because my last blog piece (see here) to the government saw zero responses from anyone in politics. I know, I shouldn’t be surprised. So, I am holding out hope that those of you in the medical professions will come through instead.

Over the past while, I’ve seen countless family carers, such as myself, get behind the nursing strikes and the #CareCantWait campaign supporting consultants and GPs. Carers support all of you because you are the ones who have dedicated your careers to giving expert care to our vulnerable family members, and indeed at times, saving their lives. We could never adequately voice our gratitude for the work you all do. 

Having said that, we don’t want to see you unless we absolutely have to – and I say that with a dash of humour but fully in truth. 

We support your campaigns for reforms and improvements in your various sectors of the health system, and in the health system overall. We do this because we are the *frequent fliers* in the system. We know it forwards and backwards. We live it every single day, but usually at home. And, we know just how important your work is to our fragile loved ones.

What I ask here is two-fold:

  1. Recognise that we, as family carers, are on the very front line of care. We are the ones who often make the difference between a complex case landing at your door or exam room or ED, or being handled at home. We administer life saving medication, suction airways, provide for orthopaedic care concerns, clean and dress chronic skin wounds, provide emergency seizure care…and so very much more.
  2. Support our fight, which is similar to yours, for reforms and improvements. We don’t have a union or a professional body which advocates for our rights and needs, which are also the needs of those we care for – your patients. We need your collective voice, understanding the vital work we do, to join with ours as we advocate for more supports, improved services at home and in the community. Maybe then the government will take family carers seriously and listen to our concerns.

As I discussed in my last piece linked at the start of this blog piece, if family carers can no longer care, or care as well as they would hope to do and are expected to do, the health system that will end up even more overloaded than it already is now. You will see our vulnerable family members more often. You will see us carers more often, exhausted, physically ill and/or hurting with injury from caring with no supports.

We are all connected in this way – your profession and our work as family carers.

Let’s work on this together. 

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Dear government…signed, a full time carer to an incapacitated loved one.

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The other night, as I sat on my couch in the silence trying to find the words to describe how I felt for a blog, I got a notification of being tagged on Twitter. As timing would have it, the tweet was about being a carer. My reply to that tweet began to address how I feel. I wrote:

I was actually just sitting here trying to find the words to say how burnt out I am. Exhausted. Depressed. Not wanting to do this work anymore. Wanting a life outside of this. Wanting to just be his mother, not his nurse. And feeling guilty at having these feelings.

I’ve been thinking about these feeling since that night. Here are some conclusions:

  • If government (no matter what country) properly supported carers, we wouldn’t get to this exhausted state of wanting to give up.
  • In any other job – and this is indeed work – an employee would NEVER be expected to work and/or be on call around the clock, let alone for days, weeks, months and yes, even years, on end.
  • In any other job – I repeat, this is indeed work – there would be other workers to come in and relieve a fellow worker for breaks, days off, and as needed when ill.
  • By caring for an incapacitated family member at home, the carer saves the government (again, any government, wherever you live) millions if not billions by providing the care services rather than the State.
  • If the carer can no longer provide care for their incapacitated family member, be it through sheer exhaustion or through their own now ill health, it would cost the government far more to provide residential care for that person. In fact, they may be looking at now providing care for TWO people because the carer’s health has broken down to the point of themselves needing care.
  • If governments invested in proper supports for family carers (ie: in-home nursing support, suitable residential respite, timely access to required services & equipment, individualised care plans based on each family’s needs, just to name a few areas of support), they would be investing in the health and well-being of the carer, which is fiscally prudent in the long term (see above listed reasons). An ounce of prevention is worth a pound of cure, as the old saying goes.

We have to ask WHY governments don’t adequately support the family carer working full time to save the life of an incapacitated loved one.

I think it’s because they don’t place an equal value
on the lives of people with disabilities. Full stop. 

Two days ago I received confirmation that the regional respite centre won’t be able to accommodate Brendan Bjorn’s needs (no special articulating bed and no pressure relieving mattress) and that there is no availability for him. I still wait to hear, 11 months since moving to County Wexford, if funding for in-home nursing respite has even been approved. If and when it is ever approved, I would still be unable to leave the home due to the illogical Loco Parentis rule of the HSE unless I had another adult in the home who would be able to handle emergencies that may arise. I don’t have that. So, in-home respite is basically not respite…if it ever happens.

The cold hard truth is that governments count on the love a family carer has for their child, or other incapacitated family member, to keep them in their place (so to speak) caring around the clock, often alone (especially as a lone parent), often in unsafe settings due to lack of proper equipment, often when physically and emotionally depleted. Governments would never allow medical staff to work in such conditions. Unions would never allow it, either. But alas, family carers do not have this protection, and as such, neither do their incapacitated love ones. Carers are expected to continue on with their work fueled solely by their love.

But sometimes love isn’t enough. 

Governments MUST realise that family carers cannot continue on working 24/7 providing nursing level care for years on end without receiving proper supports, time off of their work (again, it is indeed work) and dare we even hope for a life outside of our full time caring role. We will breakdown eventually, be it physically, emotionally, or both…and then what? 

Dear government, listen… 

 

 

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15 years ago yesterday. 12 years ago today.

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Hindsight is a funny thing. For me, I’ve found that as I grow older, I tend to look back more than when I was young. When I was young, I looked ahead – probably too much so and to my detriment. At this point in my life, I think I’ve got a fairly even balance between looking behind, ahead and living in the moment. Mind you, some days I disastrously dwell too much in one realm or the other. No one is perfect, after all.

Since the day I found out I was pregnant with Brendan Bjorn, I began a journal to him. I kept up the journal writing through Declan’s birth, but over time, I stopped. As I think on it, it was probably about the time I began to spend more time on social media! (Note: I should have stuck to journal writing)

15 years ago yesterday. 29 October 2004.

This was the day that Brendan Bjorn had his 4 week old well baby check up with the pediatrician. It was the day after he had an ABR (Auditory Brainstem Response) hearing test which showed he was deaf in his right ear. I remember sitting in my car outside the hospital and crying my eyes out thinking how my baby boy was deaf in one ear. Hindsight, right? The perspective that the years bring us is priceless.

I remember the pediatrician sitting at his desk, me sitting in the chair next to it, and Brendan Bjorn on my lap. We started off discussing milestones – that dreaded word to most parents of children with special needs. At that time, of course, I didn’t know my son would have any special needs. Then we progressed to the results of the ABR. From there, to measuring his head, which had been noted at his 2 week appointment as being small. It had barely grown in the 2 weeks since his last appointment. Blood work was ordered to uncover the cause of the deafness and the microcephaly. And the journey began in earnest on this day.

12 years ago today. 30 October 2007. 

I wrote: “Dearest Brendan and baby, today I had my first ultrasound with this pregnancy. I was so scared and nervous, but what a relief it was when the doctor said ‘and there’s the heartbeat.’ I could see it on the monitor! And then she turned on a volume switch and I actually could hear the heartbeat at just 7 and 1/2 weeks pregnant! You’re going to be a big brother, buddy! I love you both!” 

May I never forget that moment or the feeling of sheer joy at hearing Declan’s heartbeat for the very first time.

Today. 30 October 2019. 

As I turn the pages of that early journal, I am reminded at how so much happened in the 3 years between those dates. And as I look around me today, seeing life as it is in this moment, I am reminded at how so much has happened in the 15 years since that pediatric appointment with the 4 week old baby Brendan Bjorn on my lap.

I’m going to keep striving for that balance of looking ahead, remembering what has been, and living in the present. I might not always get it right, but one thing I do know is that those moments which are to become cherished memories will continue to present themselves along on this special journey of ours. And isn’t that the real beauty of life?

 

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CAGED

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Yesterday, 16 October 2019, there was a protest outside of Leinster House here in Ireland. The protest was organised by Family Carers Ireland to advocate for the much needed reforms in support of full time family carers such as myself. The hashtag #CAGED aptly describes the world in which many of us find ourselves. Ironically, the majority of carers weren’t able to attend the protest because – you guessed it – they were busy caring with no one to relieve them of their 24/7 duties.

What does it mean to be CAGED?

My son, Brendan Bjorn, was unable to attend school for the past 2 years due to health reasons and/or having no wheelchair for transport. As a lone parent, full time carer, with no family supports, this left me – and his younger brother – CAGED for those 2 years.

I care for Brendan Bjorn literally 24/7. While he does now attend school again, he goes 3 days per week, for a total of 16.5 hours. That means I am caring for him…hands on, complex medical care…151.5 hours per week. It’s important to note that the hours he’s in school, I must remain within close proximity to the school in case he gets ill and I need to pick him up. This actually happened 2 weeks ago where I was 40 minutes away. I’ve since been told I need to be more readily available. This is CAGED.

When Brendan Bjorn isn’t at school, the most he can spend in his wheelchair is approximately 3 hours do to pressure sore risks. Longer day trips out are not possible. Even a film and lunch would be pushing the time limit for him. Still, I try to get out…despite the fact I have no overhead hoist to safely lift his 5ft long, over 40kg body from bed to wheelchair. Instead, I’m resigned to manually lift him – a danger to both of us. This can’t continue to happen and there are days I simply decide it’s not worth the risk. This is being CAGED.

We get 15 nights respite per year thanks to the wonderful LauraLynn Children’s Hospice. The demand is so great, that this is the most nights they can provide for any family. We all get 15 nights per year. There are families who don’t even get that, it should be noted. Families of profoundly disabled children, of all ages including adults, are CAGED in their own home, with little to no break away.

What does it feel like to be CAGED? 

I can only speak for myself on what it feels like. For me, it feels like I am drowning. Suffocating. And in some respects, dying. My social life is totally non-existent outside of the often toxic social media realm. My professional career is so long on ice that I’m beyond redundant. I’m depressed. I have anxiety. I’m lonely. I’m isolated spending so many hours, day, months, and now years, caged inside the home caring 24/7. The only time my phone rings is for medical related business. I honestly can’t remember the last time I (we) were asked over to someone’s house for dinner. I’m exhausted…physically, mentally, spiritually. I find myself feeling done. Just done. I’m ready to not be a carer anymore. I wonder how long I can go on like this, day in, day out. This is what if feels like to be CAGED as a carer. 

Understanding is needed, not pity.

I’ve shared my journey, and indeed today’s post here, not for pity. That is the absolute last thing I want! What I want is understanding, and with that understanding, I want to see change – REAL CHANGE in how carers are treated.

I want to see the medical community get behind the fight for change, knowing that it’s family carers on the front line of care for our vulnerable loved ones that help keep the medical system afloat. It’s no exaggeration to say that if we didn’t do the work we do, the medical system would collapse.

I want to see the politicians with the power to reform policies of support and the related budgets actually make those reforms – and make them before carers are unable to cope any more.

I want to see the public – local and nationally – get behind carers across Ireland with their support by raising their collective voice, contacting their local TDs, and taking to the streets in protest. If you aren’t a carer now, you will either be one some day or you will need care yourself. That is the way of life. This affects everyone.

Ultimately, I want to see all carers have the freedom to experience their own life, fulfilled, hope-filled and active, without the unnecessary confines of the invisible bars surrounding them because they are being CAGED as a carer.

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