When a new year starts and the tree comes down

Standard

I finally took our Christmas tree down today, later then I think I’ve ever left it. But alas, it is down and the empty spot is quite noticeable on the sitting room floor. If I look up from that empty spot, though, I see what keeps me going. I see my centre. I see my family. Photos from the past 18 years cover the one sitting room wall.

Photos of good times only.

The photos of the bad times are emblazoned in the ever-saving “cloud” of my mind.

While I took the Christmas tree down, I was stopped twice by the sounds of Brendan Bjorn gagging, retching and eventually vomiting. (remember I wrote last year that this year I would describe the real and raw aspects of our journey?) He started on a new medication a few days ago to try and help his intestinal system work better and allow me to try and increase his feed volume and rate per hour.

This isn’t going to work.
The medication is making him worse.

I spoke to a paediatrician last week. This was the last medication attempt to see if it is a gut motility issue. We didn’t think it was. And now, I definitely don’t think it is. It looks like it is a gut absorption issue, and with that likely inevitable diagnosis comes a huge discussion to be had with his medical and disability care service team: What are the options now?

And once I have those options in front of me, with all the relevant facts, I will go away and contemplate everything...and I will then decide what to do, or not to do, as the case may turn out to be.

So you see, dear reader, it weighs immeasurably heavy on my mind, my soul, my heart, that this year as I take down our Christmas tree, may have been Brendan Bjorn’s last Christmas with us. Yes, I know it may not be, either, and I’ve wondered this same question the past few years. But this year, it feels different. It feels very different indeed. And despite the self-protective numbness guarding my emotions as of late, I can still sense the devastating heartbreak waiting for that guard to drop its precarious defences.

I think I’ll add a few more photos to the sitting room wall this week.

Those days after Christmas. Those days to come.

Standard

It’s the day after Christmas and the house is quiet…for now. Tomorrow, Brendan Bjorn will spend four nights at LauraLynn Children’s Hospice for respite. But, it will be so much more than that. While there, they will help assess if he is to be transitioned to a new level of palliative care on his life-limited journey as his intestinal function continues to decline and he isn’t getting enough fluids.

And as I watch the sun reflect on the windows of the building across the street from me, it feels like more than just another day to me.

I’ve been numb the past week. Nearly emotionless. And for those of you who truly know me, I’m nothing if not full of emotion.

I think my mind is safeguarding my heart right now.

I’m ok with that, because sometimes my heart does need protecting. I can’t crumble. There’s too much to do, to be responsible for, and to take care of: namely, my two beautiful sons. So, today, the day after Christmas, I will prepare for our short journey tomorrow. I will gently bathe my eldest son in his bed, pack his medications, his specialised formula and PEG feeding supplies, his adult-sized nappies, etc, etc, etc.

And, I will try to breathe.

I will also try to remind myself (repeatedly, most likely) that it is ok to feel numb, to be without emotion right now, if that is what it takes to get through the days to come and to be there for those I love.

And it’s time to start the day.
Here is to those days after Christmas, and those days to come.

so much left unanswered

Standard

The past week has been exceptionally hard. And considering things were hard to begin with, that says a lot.

I’ve always been one to look ahead and have a plan or two, set goals and do what I needed to do in order to see them fulfilled. Practical and self-directed in that way, some would say. At the present time, that core part of who I am is wrestling with the reality that there is so much left unanswered about what will unfold in the next number of weeks and months, that it is causing me untold internal stress. In other words, lack of sleep or, when I do sleep, it’s filled with panicked dreams, and when I’m awake I am exhausted and having anxiety attacks.

In short, this is an incredibly difficult time. Here’s why:

I want answers I simply can’t seem to get. And, I want answers to questions that simply cannot be answered because life just has to unfold and be revealed – the present path Brendan Bjorn is on in particular.

So, I try to plan around what, in part, actually can’t be planned. Then I try to plan around what could be planned, but because of lack of services and answers around his care, I can’t do that either. Enter the exhausted, anxiety-filled state I’m in.

Fact: Brendan Bjorn isn’t getting enough fluids since his formula feed was decreased a few days ago. Unless the new gut motility medication begins working and I can increase his feed again, it would mean he needs IV fluids.

Questions: That fact then brings the questions of where and how that would happen? And when? Would it be a permanent care facility as we’ve discussed for when he turns 18 or is this going to be occasionally topping up his fluid levels somewhere and then he comes home? What of the extended residential respite to give me rest and him to receive 24/7 care as his needs have greatly increased with the nigh time vomiting and choking episodes? Will that happen or will he be left at risk at night with his increased medical concerns? No answers. No answers to any of it.

More questions. Is he moving on his journey into a palliative/hospice level of care now? This is a question which is in the process of being assessed, but as it’s Christmas and as we’ve been waiting over a year for a GI (gastrointestinal) consult, who knows when that will happen. And again, I lose hope. And again, more questions. If he is in rapid decline, how will that transition occur and where and when and…and…and…so many questions. Remember, I like to have plans.

Then there are the practical questions roaming without check in my head.

When/if Brendan Bjorn permanently leaves my care and our home – for whatever above reason – I will lose the vast majority of financial supports coming into our home. Then what? How will Declan and I stay afloat? I’m 56 and in chronic pain and waiting on various consultation appointments myself. How could I work full time, and who would even hire me at this point? My professional career is a long lost cause. What would and could I do? Yes, more unanswered questions.

Christmas, one of my favourite times of the year, is in less than a week. I have one beautiful son who is beyond excited and even at 13 sits at the Christmas tree, looking at the presents, and is filled with joy. I have another beautiful son who is struggling to survive, the quality of his life being slowly taken from him. And here’s me. I’m in the middle, trying to plan and trying to take life day by day.

I look up at the sitting room wall covered in family photos as I write this piece. For those two beautiful boys, that’s what this is all about and why I worry about so much left unanswered.

Keeping it Real and Raw as a Carer in January 2022

Standard

This morning, 4 December 2021, I woke to find Brendan Bjorn had vomited overnight. You see, if you haven’t been following this blog before now, his gastrointestinal system continues to decline. His body grows more frail as his difficult journey finds him now with an Advance Directive to guide his care.

Anyway, not only did I find one side of his neck, shoulder and back covered in vomit, but his face was speckled with patches of petechiae (where the blood vessels under the skin break due to physically straining). The likely scenario is that he was gagging; choking on his vomit.

I was asleep.
I didn’t hear him.
He was alone in his apparent, likely, struggle.

Today I will spend my day monitoring his O2 sats considering the possible aspiration overnight, in addition to his daily complex, nursing-level care needs.

The thing is: I’m not a nurse on schedule with an 8 or 12-hour work shift. I am his mother / carer who must also sleep at night. And so, nights like last night grow more and more common as his health grows more and more fragile.

I fear that one morning I will wake to find he didn’t clear his airway and he will be gone.

Can you imagine that fear? That worry? And even that guilt that resides within me every single day as I feel like I am not – and cannot be – all that he needs? I try to be. God knows how I try to be.

I’ve decided that starting on 1 January 2022, I will begin an awareness campaign on social media to highlight the Real and Raw aspects of being a Carer to a profoundly disabled young adult. It won’t always be pretty, and indeed it isn’t meant to be. I hope to shock some people (public and government) into the realisation of just how complex, difficult, and even ugly (ie: not so pretty) this very high level of care is, especially for a lone parent, aging carer with their own health issues.

So, on Twitter look out for the #RawAndRealCaring hashtag and feel free to follow me at @addressinglife on Twitter and the Profound Ireland advocacy community at @ProfoundIreland starting on New Years Day. Those with the political power to reform the disability and caring sectors of our society must begin to understand exactly how much needs to be changed. Our profoundly disabled loved ones deserve full, proper, equal supports and services. They deserve to have the right to their human rights be met just as anyone else in our society…but they are not. Nor are those of their family carers.

It’s time to change that.

1st of December 2021

Standard

It’s the last month of 2021, a year which, for the most part, seemed a repeat of 2020: Pandemic. Virus. Isolation. PCR tests. Vaccinations. Fighting the system. Not getting services and help. Rinse and repeat.

But, December is a happy month for me. Well, in normal times, that is. I like it.

My birthday is in 12 days and I will be 56 years old. I still can’t believe I am “that” old, but the way I look at it is this: It’s far better than the alternative! Many across the world didn’t live to see another year. I am truly grateful and blessed to still be here, no matter how surreal our world, our lives, have become.

And, Christmas is just 24 days away. I still get excited and feel great joy at the season, all it holds, and all it means. Declan is beaming with excitement, too, anxious to open the presents under the tree. I will cherish this excitement in him while he still holds it in his youth. It’s beautiful.

Finally, New Year. What will 2022 bring for us? We have some plans, and definitely have many hopes, but alas, the pandemic will determine which of those can come to fruition. Hopefully all of them will, because God knows we could use it after the last two years.

It’s been a very, very hard two years.

I know in my heart that if some things don’t change this year, I may not make it in one piece to see next Christmas. That’s the cold, hard truth. The exhaustion of caring has now left me with more health concerns which need explored and treated. I’m waiting – like so many others in this country – for appointments with consultants. I’m actually still waiting for a x-ray of my lungs to happen and it’s been over a month. So, yes, there are some aspects of my family’s life that must change as we hang on by our fingertips, struggling in too many ways.

I’m going to desperately try and hold on to that inkling of hope I feel simply from it being Christmastime. At this point, it’s all I can do.

May December be good to us all.

Questions on rights for family carers and their disabled loved ones in Ireland

Standard

Does a family carer have any rights in Ireland? The right to respite? The right to proper, appropriate support? The right to live a life not in constant pain and despair? The right to a career? The right to time away from caring work just as other workers have the right to?

Another question: Does their disabled, young-adult child have the right to progress in their life with the continued assistance by the State and move into an independent living setting outside of the family home, fully supportive of their individual level of disability needs, when they turn 18 years of age?

Answer: No, it seems not, to both questions. Forget the UNCRPD (the UN Convention on the Rights of Persons with Disabilities) rights as it doesn’t seem to hold much weight in Ireland.

Now I ask, WHY NOT?

Well, you see, Ireland refuses to sign the Optional Protocol. This is the protocol (agreement) which gives the UNCRPD its teeth. It is what enables a person to file a claim that their rights under the UNCRPD are not being upheld.

Again I ask yet another question…WHY does Ireland refuse to sign up to the Optional Protocol?

In a nutshell, and in my opinion, it is because Ireland has not assured it has the proper services in place to fully, equitably, and suitably support disabled people in our society.

Here is an excerpt from an Irish Examiner article dated 30 May 2021: “Markus Schefer, a member of the UN Committee on the Convention on the Rights of Persons with Disabilities (CRPD), said it suggests Ireland is not confident or comfortable enough to open itself up to international scrutiny.” I would encourage you all to read that article hyper-linked above. The fact that “Ireland signed the CRPD in 2007 but the international law, which requires the state to work towards providing full and equal rights to people with disabilities, wasn’t ratified until 2018” says it all.

I don’t have the answers, but I am looking for them as I seek support. Since July, I have been pleading with Brendan Bjorn’s disability team for proper supports but to no avail. I have visited the two residential disability children’s respite centres in County Wexford and neither was suitable for his profound, very complex medical needs. His team should have known this and not wasted anyone’s time and energy in requiring me to view these centres. A quick review on their part of what the centres have and don’t have would have done the trick in literally 60 seconds…no overhead hoists in either centre. End of. Not suitable. And they then could have immediately gone forward in looking outside of the county.

But…no…this is Ireland where it took 11 long years to ratify the UNCRP and where they still refuse to sign the Optional Protocol to give disabled people the legal mechanism to claim their rights are not being met.

And people wonder why Irish carers and the disabled people in our society
so very often despair at the state of things?

Dear Irish government, It is way beyond time for reforms in the disability sector here. Way beyond time.

How many years more? Caring, the pandemic, and life

Standard

I don’t want to be in the press or on social media anymore. I don’t want to be publicly pleading for services, human rights, treatments for my son, awareness of this or that…or for anything, to be honest. But, I know the power of the press and social media, so until I am finally done being a carer, I’ll have to remain.

But to be clear, I don’t want to be. In fact, there are a lot of things I don’t want to do anymore. And there are a lot of things I do want to do, but can’t, because I am trapped in this role I can no longer tolerate…the role which I have no choice but to do, it seems, despite the chronic pain of arthritis and degenerative discs; despite the high cholesterol and being overweight, both which can lead to a terrible outcome; despite the depression and anxiety and related medication that I wish I could stop.

I’ve spent the past 17 years in the public ‘limelight’, via national and local press, both in the US and in Ireland, advocating for all of the above concerns, all related to my son’s numerous conditions and my role as his carer. I’ve no interest in it anymore. Zero. I’ve done my bit, so to speak.

When my caring role is done, I simply want to fade away from any press or social media, and just live out a quiet, simple life focused on what is before me. Watch my younger son grow into the man he can become and leave the nest to soar on his own. Maybe finish those books I began writing ages ago. Maybe take those long dreamt of trips on my bucket list. Maybe spend my latter years quietly soaking up some peace and beauty tucked away on a spot of land far away from what life is like presently.

Tears roll down my face as I type that, thinking of what could be and terrified it may never be.

The pandemic has tipped me over the edge of that caring abyss which many of us as carers try to keep our balance on every single day.

I’ve been a lone parent carer to my beloved firstborn son, Brendan Bjorn, for nearly two decades. And when I look ahead for my own life, it’s about that same amount of time I figure I have left in good years. About 20 years. I’ll be 56 next month. My mother died when she was 60. Her mother died when she was 67. And yes, that scares the absolute crap out of me. That, and knowing I have a young 13 year old son who needs more from me now than ever before. I must take care of myself now, with my own numerous health conditions, or I likely won’t be there for him for very long.

So, now what?

Four months ago I wrote to Brendan Bjorn’s disability team telling them I was breaking and I asked for what I needed. I was met with a very matter-of-fact letter stating there are no services presently – talk of waitlists, talk of future reviews. As I tend to do, I didn’t let it drop and replied with more direct questions asking why there were no available services and reiterated my plea for help. It went nowhere. Nowhere, that is, until the social worker came to see me. The result was a wonderful 5-page letter supporting all I had requested. As well, there were letters of support from his school nurses and principal and from his paediatrician.

Those that see what I do daily understand and don’t know how I do it.
Those sitting behind their desks can’t even begin to imagine.

Again, now what? I don’t know actually. More waiting. More breaking down. More worry about what happens if (or more accurately, when) I am to the point of not being able to keep going on caring. The point of where I am broken beyond repair.

Why are carers be left to get to this point?

Because those with the power to reform needed services don’t care enough to do so. There isn’t the political will. Simple as.

photo from 2017

Maybe you can tell me why?

Standard

Why are family carers expected to settle for crumbs when a majority of them are working more hours per week than typically-employed people?

Why are family carers thought of as ungrateful or greedy if they believe they deserve more than 10, 15 or even 20 days off per year, even though a typical worker gets 104 days off just in weekends alone, not including holiday time, sick time or national holidays?

Why are family carers considered by some people as ‘welfare scroungers’ when in fact the skilled work many carers do is nursing-level care which saves the State literally billions of euros every year?

Why are family carers left with no chance of earning credit toward a full pension, left only to scrape by day to day, trying to keep an extraordinarily expensive household with disability costs afloat on what equates to less than a euro an hour pay for their 24/7 work?

Why are family carers constantly having to fight for basic rights for themselves, as well as for their disabled loved ones, despite those rights supposedly being protected and enshrined in various conventions or laws?

Why are family carers forced to give up their careers and be relegated to poverty on meagre social welfare payments rather than full, proper services being provided for the disabled loved one which would thus enable the family carer to continue with their career, to continue being an active part of society, and to have the full life they indeed have a right to live?

Why are family carers allowed to continue struggling while their physical and/or mental health declines to such a point they can no longer care, or maybe even worse yet, no longer care about caring for themselves or their loved one?

Why are family carers left with no options but to provide the care work, even if they reach the point of burnout and breakdown and just don’t want to do it anymore?

Why do our politicians, who could so easily see the lives of family carers and their disabled family members change with the stroke of a pen pushed simply by political will, do nothing to change our desperate situations?

Why do our fellow members of society, who march in protest together in the thousands for other causes time after time after time, fall silent when it comes to the plight of carers and the disabled, even though one day odds are they too will be one or the other, if not both at different times of their lives?

Why do advocacy organisations ask for crumbs for carers rather than asking for what carers truly deserve and in fact need?

Why does anyone think any of this is in any way acceptable?

Maybe you can tell me why no one seems to care?

Flipping burgers at McDonalds pays four times more

Standard

I’ve come to the conclusion that society as a whole simply doesn’t give a damn about the plight of carers like me. I include governments and politicians in that assessment. Because if society did care, there would be protests on the street helping advocate for our rights and indeed those of the disabled, incapacitated, family members we work around the clock to care for and keep out of hospitals (note: which in turn helps keep hospitals free for you and your family members).

I get half-rate Carers Allowance. I can’t get full rate because as a lone parent I get that social welfare payment. Let me stop at this point and say how humiliating and degrading I find it personally to be on welfare. I did not put myself through university to earn a BA and then a Master’s Degree, all while working full time, so I could give up my career and live in poverty on welfare.

I hate it.

But, back to my point. Half-rate Carer’s Allowance in Ireland is €109.50 per week. That is what I get paid to provide nursing-level, around the clock care to my profoundly disabled, medically fragile, life-limited teenage son who is now considered an adult.

€109.50 per week.

If I were to break that down to 40 hours a week of work – which by the way is completely unrealistic as it is literally 24/7 – that would equate to €2.73 per hour.

Let that sink in: €2.73 per hour.

Now consider the average starting pay at McDonald’s is €10.51 per hour. (see here)

My first job at 16 years of age was at a fast food place. Never in my life did I imagine that at nearly 56 years of age I’d be “earning” a fraction of that at this stage of my life. I’ll mention again the humiliation.

I have 17 years experience as a carer now and am a Certified Nursing Assistant (CNA). The work (and yes, it is WORK) I do every day is nursing-level work. End of. In hospital, it is only a nurse – or actually, two nurses – who are allowed to carry out the work I do at home…alone.

So let’s talk pay. I’ve written countless times about carers and pay, but it clearly needs said again: We work, we are drowning financially (and other ways) and we must be recognised with proper, fair, equitable remuneration.

There are a few ways this could happen, but the most ideal way in my opinion is to have carers like me, who provide nursing-level care, be trained and certified as Health Care Assistants, then employed by the HSE and paid a salary complete with the benefits package of any other HCA in a hospital setting. (This is the model program from Colorado where I was trained and certified as a CNA mentioned above). The starting salary here is €30,921 annually (see here). That breaks down to approximately €14.87 per hour for a 40 hour work week. Time for the reminder that carers like me “earn” €2.73 per hour for nursing-level work.

If carers were employed, not only would it provide more financial stability, but it would allow us to pay for necessities which we can’t currently afford, everything from hiring someone to mow the lawn because we can’t get to it, to house and vehicle repairs, to paying for the mental health counselling we need for the depression the majority of us are challenged with, to saving for our hoped for one day retirement years. And as employed people, we could apply for credit, for loans and build a more secure life for our families.

As it stands now, carers live in poverty, unable to do any of those things…which even someone flipping burgers at McDonald’s can far better afford to do.

I started this blog piece saying society, governments, and politicians don’t really give a damn about the plight of carers. I’ll end this piece by saying this: If that statement offends you, if you DO give a damn, then please help advocate on our behalf. Contact your local TD. Contact the relevant Ministers in government. Organise a protest (because so many of us carers can’t get the time away from caring work to do that). Share this piece on social media.

But please, if you do give a damn, do something.

26 August 2021: It’s been a long time coming

Standard

Today I sent off my application for Irish citizenship. Having first moved here way back in 1995 (yeah, I’m old), it’s been a long time coming. But, here it is! Or rather, there it goes via registered post.

And now the anxious wait begins.

Preparing the final packet last night and this morning has me in a very reflective mood. For anyone who follows this blog or who knows me personally, it doesn’t take much for me to be reflective (you can stop laughing at me now).

Anyway, this morning my thoughts are with my Grandmother, Mae. She was the child of immigrants. English was the second language in her childhood home, not the first language. I wonder now, how did that shape her and, in turn, how did it shape my Mother, her daughter?

Being only a couple of generations from an immigrant, and being one myself, I then wonder how does that shape me as a parent and my sons as young adults in the world?

Surely it impacts our worldview, both in a smaller community context and the world at large.

And I think that is a good thing indeed.

My Mother had asked her mother to teach her the native language she grew up with, but my Grandmother told her no, you are to speak English. And so it was, my Mother never learned Norwegian. It’s taken years but I’m still trying to make up for that by learning the language of my Grandmother. After all, it’s never to late to learn new things, right?

So, here I am in Ireland, my closest relatives are those in Norway, I’ve just sent off my application for Irish citizenship, I’m learning and teaching my son Declan how to speak Norwegian while he also learns Irish and Spanish in school, and I’m reflecting on all of it; reflecting on my Grandmother and my Mother, both long passed away now and wondering what they would say to me about anything and everything? Like I said, a lot to reflect upon today.

What a day it is.

Me with a photo of min bestemor, my Grandmother, Mae