Worth less, worth more and self-worth

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I’m a Master’s level professional mental health counselor. Or, should I say, I once was. In recent years, I’ve had to leave my career behind me – where it sits in the back corner of some forgotten shelf gathering untold layers of dust. In recent years, I’ve become an unemployed carer to my profoundly disabled, medically complex teenage son. I am now relegated to welfare and living below the poverty line. I hate it.

And much of the time, I feel worth less because of it.

I worked damned hard for my degrees, working full time to earn a living while attending University full time. For many years, I used every ounce of self-direction and perseverance I had within me. I was proud to have done it all on my own. I’m still proud of what I accomplished. But make no mistake, after years of hearing you are worth less than what you think you are, it takes its toll. It seeps into your self-worth reservoir, draining its reserves a bit more each time you fight for an extra crumb at the table of those who would see you remain working around the clock while treading the surface of the tumultuous waters of caring…the waters which could see you drowned in an instant.

I think I’m worth more. At least, I want to believe that I am. 

I want to believe the work I do 24/7 saving my son’s life on a daily basis by providing him nursing-level care is worth more.

I want to believe I was right to ignore the too-often said words of advice to put my son into a care home so I could “get on with life.”

I want to believe that I’m still relevant to society, still have something to offer, which is worthy of respect and equality…and I wish I didn’t ever feel like what I am doing now isn’t.

I want to believe that some year, when my caring days are done, there will be something remaining of the person I used to be, and not just the current feeling of being a mere shadow of my former self.

I want to believe I can make it to the end of those caring days in one piece, not in a million pieces shattered from years of mentally and physically exhaustive struggles.

I started off this piece talking about my professional career as a mental health counselor. I mention it because I understand how self-worth is rooted in one’s own psyche and the influence self-thought can have on self-worth. Having said that, I also understand how factors outside of one’s self can absolutely contribute to the demise of one’s self-worth, especially over time. It is the latter point I address here because how carers are treated, thought of or not thought of, paid or not paid, included or excluded, does indeed influence their self-thought and self-worth. 

I think the work I do for Brendan Bjorn is worth more, not worth less, than being relegated to welfare. And I certainly don’t think the work is worthless, because if it was, that would mean my son’s life is worthless. I can assure you, it is priceless.

It is time that society and government acknowledge that we,
and those we care for, are worth more
and begin treating us as such.

 

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My former self

Would it help if we whispered? 

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A new government. An old fight. This morning I’m contemplating how to best bring this old fight for rights of family carers and their profoundly disabled loved ones to the shiny, new table of just appointed Government Ministers. We’ve lobbied. We’ve met in person. We’ve emailed. We’ve shouted on Twitter. We’ve spoken on the phone. We’ve even WhatsApp’d. Still, the same long-standing struggles remain.

Would it help if we whispered? 

Parents know the old trick of whispering to get your child’s attention. The child looks up…”uh oh, this is serious. She’s whispering her upset to me now.” Is that what we need to do? Let this piece be that whisper. Frankly, it’s about all I have energy for at the moment anyway. Shouting sounds exhausting, because after months home bound caring 24/7 with no break and no relief in sight thanks to COVID19, we (carers) are exhausted. And dare I add that we lone parent carers are beyond exhausted.

Hear our whisper.

Last week, a thought came to me: I’m going to stop saying I care. I’m going to now say I work for Brendan Bjorn. Why? Because I do. How so? Because if he was anyone other than my own son, it would indeed be called work; I would be employed with a living wage, pension, time off, and the rights of any other worker.

The way I see it, there are four different options
to lay on those shiny new Ministerial tables. 

1. Reclassify the Carer’s role from social welfare into a Carer’s employment contract resulting in an income at fair market rate with a salaried wage commensurate to duties performed and the hours worked, complete with payment into PRSI and pension.

OR

2. Establish the voluntary Colorado-model of training and certifying Family Carers as Health Care Assistants where they are employed by healthcare agencies as the HCA for their disabled family member, complete with salary, pension, and all related benefits.

OR

3. Hire a full time nurse to come into the home (or provide nursing level day centres) to take care of our profoundly disabled family members so we, the carers, can go out and work full time, be an active part of the economy, resume our careers, and have a life outside of caring.

OR

4. Pay all Family Carers the full Carer’s Allowance without the restriction of a means test.

Personally, I prefer options 1, 2 or 3 for a number of reasons, the most important of which are because:

  • Family Carers are absolutely working (often very skilled work, to be noted – and as such are deserving of the same rights and privileges of any other class of worker)
  • As employed individuals, we would have the ability to obtain much needed lines of credit for the many extraordinary expenses we face.
  • Many of us are genuinely sacrificing our own physical health by the work we are doing day in and day out. We will not be able to survive on a pension which hasn’t reflected our years of dedicated, hard work. If we don’t have that fair pension at retirement age, we will only become more financially dependent upon the State for support, not less.

But alas, this is a topic with many finer details to be discussed and debated. For now, during this continued lockdown for Family Carers and their medically vulnerable loved ones, the immediate – URGENT – issue is providing relief in whatever manner best suits each family individually. For some it will be the reopening of day centre services. For others it will be in home nursing respite (note: it must be without the Loco Parentis restriction which keeps the parent carer from leaving their home during respite!). And for others, it may look entirely different.

This is my whisper to the new Government. I hope you all hear it. Let’s talk.

 

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The longest day of the year

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Today is the Summer Solstice. It is the longest day of the year. It is the longest day of the year in a year which has seemed to be the longest in my life. I’m having a very hard time handling 2020 so far…and I don’t see it getting much better, to be very blunt.

All across Ireland, restrictions are being lifted. The majority of people are out shopping (sans masks, by the way), anxiously awaiting for the hair salons and pubs to reopen, planning their first trip outside of their own county, and acting as if COVID19 is all in the past. And frankly, to listen to the government of the day, you wouldn’t blame people for thinking it’s in the past.

COVID19 is not in the past. 

I’m having a real struggle emotionally the last couple of weeks as I see the world around me – well, the world outside of my house, that is – return to normal. Within my house, nothing has changed. The same 24/7 nursing care is provided to my fragile son by me, except now without even the few hours break that school had given me a few days a week.

I am exhausted.
I am burnt out.
I am worried.
I am lonely.
And I don’t want it to be this way anymore.

It’s the Summer Solstice. The days will now start to draw in, more darkness each night. I actually find that easier to deal with when housebound. Seeing the lovely sunny days which we can’t go out and enjoy beyond our own gates is like a dangling carrot never to be eaten. So, that’s me, welcoming the darkening of the days to come.

It’s the darkening in my spirit that I am not happy about.

And please, don’t tell me to try mindfulness or yoga or have more gratitude. I’m a counselor by trade. I know all about those things. I’m a full time, lone parent carer in reality. You likely don’t know about those things if you’re suggesting mindfulness.

I’m to the point now where I’ve actually debated breaking the invisible safety seal across our front gate, forgetting the advice that it’s safest to remain at home. It would be reprehensible of me to gamble with Brendan Bjorn’s life that way, but what of my own life? For myself, I often don’t care anymore. What I do care about is if I was to get seriously ill and my boys became orphans. God only knows what would happen to them, especially Brendan Bjorn.

So, the invisible safety seal remains…for now…for as long as I can tolerate it.

I will wait and watch to decide about school in September for both of the boys. My decision to send one or both of them back to school depends on how the rates of infection in the community are at that time and what safety precautions both of their schools will be implementing. Right now, I’m desperately hoping school can happen safely for both of them. A few more months of this total isolation.

A few more months. I hope that’s all it will be…

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Carer’s Week 2020

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Are you interested in Workers Rights? How about Human Rights? Good! Read on.

There is a cohort of workers who are forced to work without pay, often around the clock, often with no assistance. These workers aren’t even building up a pension for retirement…if they even live to see retirement years, that is.

These workers do have an option to leave this job, but it would literally require they give up one of their children or their spouse to be free to live a life apart from this unpaid, constant work. Can you imagine that being the only choice?

These workers must perform their duties full time if they are to get any financial assistance from the government, and even if they do that work, they may not receive that (very meager) assistance if they have a working spouse or a decent savings to fall back upon.

These workers go days, weeks, sometimes even months without seeing their peers, without having interaction apart from the job they do often 24/7. Their own physical and emotional health slowly eroding as the years of work continue.

Are you still with me?

These workers are family carers.

In Ireland, we save the state approximately €10b annually by providing this care v. if we decided not to provide it and instead put our loved one in residential care (that is, IF it is even available). For many of us, for many reasons, the latter isn’t an option.

This is Carer’s Week. Or as many of us carers call it, Real Carer’s Week.

When you advocate for a better society, please remember those workers who are hidden away behind their doors, often silent, always exhausted, and usually ignored by government.

We don’t need platitudes, and we definitely don’t need platitudes for one week a year.

What we need are reforms.

More services to support our work, both in home and out of the home. Respite services. Day services. A fair living wage that gives us the ability to have credit, the ability to apply for home and vehicle loans, all while we have a pension accruing. We need more disability suitable housing, both social and private. Timely access to required equipment and care.

We need mental health services made available to all family carers, including home based services as many carers are unable to avail of these services outside of the home because of their full time caring work. We need wraparound palliative care for the entire family.

This is just for starters. We need many things, for what we give 24/7 is so much more.

We aren’t unbreakable. We aren’t superheroes. We are human beings who are being exploited because we LOVE and CARE. It’s time for it to change.

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An open letter to all local authorities & the Irish government

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As of Monday 8 June, people will be allowed to travel anywhere within their own county while remembering to maintain the 2 metre physical distancing rule. Vulnerable, at-risk members of our society are still being advised that they need to remain home to be safe from COVID19 infection possibility.

In my last piece, I spoke about having taken my two sons – one of whom is profoundly disabled and very medically vulnerable – to the beach. Specifically, we went to Curracloe beach in County Wexford, which is our closest beach. As he is restricted to his own custom moulded wheelchair seating system, he can’t use the handy beach wheelchairs which are (thankfully) available for other people with disabilities to use.

This all has me thinking and I have a few ideas.

The vulnerable, at-risk population deserve to regain a bit of their normality, too.

Has anyone really stopped to ask how fair it is to ask them to remain locked away in their home while everyone else returns to their normal lives, even the new normal? Do only the younger and/or healthy members of society deserve to enjoy the parks and beaches?

Here’s a proposal for the county councils around Ireland:

What if we reserve a couple of days each month for only the medically vulnerable, at-risk members of our society who have been and are still cocooning to visit select beaches and parks?

I think it’s a very doable idea. I also think it’s fair and the least we can do to help those that are “cocooning.” Surely it’s not asking too much?

As for accessibility to beaches, I’ve been doing some research online since our visit to Curracloe last week and have discovered a few amazing accessibility items that I would strongly encourage county councils to consider purchasing for our disabled members of society to use so they can have equal access.

The first item is called a beach access mat. This enables people to remain in their own wheelchair to access the beach. Can you imagine the freedom that would provide wheelchair users? They could get close enough to feel the mist off the waves rather than stopping at the end of the boardwalk looking on at a distance. It would allow families to stay together on the beach and not leave their disabled loved one elsewhere. Imagine the beauty in such a simple solution.

There is also an item called a beach wheelchair dolly which enables a person to remain in their own wheelchair, be rolled onto this dolly, then tying down onto it securely as a beach accessible base. This would be used if no beach access mat, as described above, is available.

 

Can we do this small yet tremendously meaning thing for those who can’t readily access the beautiful beaches around Ireland?

Can we set aside a mere couple of days for those who are otherwise restricted to their home to visit a local park with only their family carer and others who are in the same situation as medically vulnerable members of our communities?

I know we can. The real question is, WILL WE? Let’s work together to see this happen for our country’s most vulnerable who will be isolating in their homes until a vaccine is found…and that may be a long time to come.

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Where the boardwalk ends

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He’s 15 years old and he deserves to be able to see the world around him, even amidst a pandemic. The past week, I’ve seen teenagers up and down our street. Laughing. Carrying their hurley. Coming back from the shop enjoying a 99. There is no social distancing. There is no thought of COVID19.

I remember being that young and thinking I was untouchable. Immortal even. 

Yesterday, for the first time in 2 months, I lifted my fragile son out of his bed and put him into his wheelchair so we could leave our house. I couldn’t take being trapped any longer. Modification works on the house are another thing shot down by COVID19 and it has left me without the overhead hoist system that would have otherwise been in place by now. There’s no telling when it will be done. At the very least, I’m hoping to get the outside works done, but am meeting resistance from the builder. A ramp and paved drive so I could finally take my son out to the back garden would be amazing, but it’s another fight, it would seem.

There we were – me, Declan and Brendan Bjorn – in the van together once again. Joyous!

First stop was at the local shop. I put on my mask and gloves and readied my debit card for touchless payment. Inside, I ended up looking like a rabbit bouncing around trying to avoid everyone shopping as they had no mind to practice any physical distancing whatsoever. It was clearly up to me to protect myself. There was no group effort to be found. 

We drove to a spot next to a river and had a picnic. No, don’t worry, we did not follow the example set by Ireland’s Taoiseach, Leo Varadkar.

We had our picnic in the van. 

It was actually lovely just to get out of the house, see a different sight, open the doors and feel the breeze on our faces, while Declan and I shared some chicken and cheese and then some cheeky biscuits. We just sat there watching the herons and the geese. People walked by us consistently. Traffic was steady. It was like last year…you know, before all of this happened…except it wasn’t. It wasn’t the same for us.

It isn’t the same and we wonder when, if, it will ever be the same for us again. 

We weren’t ready to go home yet, so we took a drive. Now, before anyone says we broke restrictions, you can click on THIS to see how we didn’t. People with disabilities and their carers are allowed to go for a drive beyond their restricted zone. Anyway, off we went, ending up at the beach. I knew it was closed but it was such a beautiful drive and Brendan Bjorn was beaming ear to ear, as was Declan, so how could I go home yet? We were stopped by 2 County Council workers (who kept their distance, thankfully) and I said how I knew it was closed and where we live, I pointed to Brendan Bjorn, and said we were just taking him for a drive.

Pleasantly surprised, we got the green light. He was allowed to enter! 

As we drove to the car park, there were handfuls of people walking to and from it. We parked. I sat there debating whether or not to take him out of the van. I looked at Declan, and his 12 year old, smiling, freckled face looked over at me and I knew he was desperate to get out. OK, let’s go. With that, we unloaded Brendan Bjorn and set off across the car park to the boardwalk that goes up the hill and then slightly back down the other side toward the beach.

White sand and a gently rolling ocean awaited. 

Brendan Bjorn could go no further, which meant I could go no further. We had to stop where the boardwalk ends. I stood there next to my 15 year old son as I watched other teenagers walking along the shoreline, swimming, and lounging in the sun. There was only about 30 to 40 people on the beach – far less than would normally be for a beautifully sunny day – but more than I was comfortable with as they would walk by us with no distancing at all, adults and youth alike. I thought, do they not see my son and realise how vulnerable he is? Do they not take COVID19 seriously? 

Declan had walked down to the ocean. Oh, how he loves the ocean! I stood there, where the boardwalk ends, stroking Brendan Bjorn’s hair…and I cried. My heart ached to be with Declan, to feel the ocean lapping at my legs and the sand between my toes. To smell it and feel it and just be with it. To be with him.

Sometimes, it hits me harder than usual to remember that as Brendan Bjorn’s carer, I too always have to stop where the boardwalk ends. 

I let the tears fall as I watched Declan be happy.
The tears of sadness turned to bittersweet tears.

We only stayed about 20 minutes. The lack of social distancing while people walked past Brendan Bjorn was more than I could handle. As we drove back home, I thought about the requirement for the most vulnerable in society to be the ones to isolate away from the public. And then this morning on Twitter, reading comments on something I had posted, I thought about it again.

It’s now dawned on me that the right to enjoy being outside, to go to the beach and feel the ocean mist on your face, to go to the park and sit in the grass having a picnic with friends, is a privilege given to only some in society: Those who aren’t vulnerable.

Why should the vulnerable always be the ones to hide away?
Does my 15 year old son not have the same right to enjoy the ocean as other teenagers?

What if I said that maybe he and other children with life-limiting conditions should actually have more of a right to see the ocean and be able to enjoy the outdoors?

It’s the majority who always have the rights. The minority in society are often an after-thought. Disability is no different in that regard, is it?

It’s heartbreaking that my son always has to stop where the boardwalk ends. 

 

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Where the boardwalk ends

Ramblings from solitary confinement

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I’m in solitary confinement. At least that’s what it feels like lately. Yes, I thankfully have my two beautiful boys to keep me company, but to be very clear, they are all I have. There are no phone calls coming in from friends, or what little family I have, to see how I’m doing or even just say hello and pass the time. The only phone calls I receive are service or healthcare related for Brendan Bjorn. The last casual call I received was a couple of weeks ago from one of the Spinal Team nurses at Crumlin just to say hello.

I cried after we hung up, I was that moved she rang me. 

Being a lone parent can be challenging in the best of times,
but being a lone parent carer to a medically fragile, profoundly disabled teenager in the midst of a pandemic
is another realm altogether.

While the world is slowly coming out of quarantine from COVID19, some of us remain confined to our home trying to escape the worst fate possible if the virus struck our vulnerable loved one. I sit here, alone in this room of solitary confinement, and wonder – how long can I do this and is this really what I should do? Should we tempt fate and break quarantine? I then wonder if fate is predetermined. If it is, I wish I could know it, no matter how awful it may reveal itself to be, because the waiting, worrying and isolation is wearing on me.

Maybe I should roll the dice when school reopens and send Brendan Bjorn back in, taking the chance of his limited life being even more limited if he was to contract the virus.

Sounds harsh and cold, doesn’t it? That’s our reality.

No one else can answer this question for me. And the powers at be certainly aren’t answering the question as to if it will be safe for children like Brendan Bjorn to return to their special needs schools this Autumn. No one has the answers. There are no guarantees. The decisions are mine to make.

The current advice from the HSE is, and most likely will continue to be until a vaccine is found, that the most at-risk in our society should remain “cocooned”, as they’ve coined the phrase. I’ve used it myself, I must admit. Today I’m using solitary confinement because that’s how it feels. Cocoon gives hope of a beautiful butterfly soon to emerge.

I’m not visualizing any butterflies at the moment. 

Instead, I spend my days providing nursing-level care to my precious son. I’m up at least twice a night with him, too. The past couple of months, I’ve also tried – and failed miserably – to be a teacher to my younger son, Declan, while schools are closed. I take out the bins then bring them back in. I pull the weeds and mow the lawn. I paint the house. I care for the pets. I cook and clean and do endless daily laundry. I hold my son’s hand as seizures suddenly take him to a place only he can go, reminding him that I’m right here. I brush his teeth and wash his body and shave his handsome face. I look out the window and dream about the trip I was to be taking this summer with Declan back to Norway to see our newest baby cousin.

And I lay in bed at the end of a long day wishing my body was 20 years younger so it wouldn’t hurt as much as it does.

I’m ready for freedom from this solitary confinement, but I know that it’s not yet to be. So, those are my days and weeks, waiting and watching, hoping that everyone out there who is free to be back within their world does so responsibly. From the photos I’ve seen on social media the past few days, I have my doubts. What is that they say about youth being wasted on the young?

Just some rambling from solitary confinement. I’ll keep searching for the key to unlock the door and release those butterflies currently still wrapped in their cocoons. 

 

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The most vulnerable in what are certainly uncertain times

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The entire world is in quarantine measures of various stages. It’s as surreal a thought as they come. Some countries are beginning to lift those restrictions – slowly, carefully, uncertain of what will happen as a result. Ireland is at the stage of deciding what to lift, what to re-open, and when.

There are only a few certainties in this very uncertain time: 

  • If restrictions are lifted too soon, we could see another surge of infections which would result in a reintroduction of quarantine measures.
  • Until a vaccine or treatment is developed for SARS-CoV-2 (COVID19), the most at-risk groups will have to continue to quarantine, or as it’s coined here in Ireland, cocoon.

One thing not being openly discussed by Irish officialdom is that the older members of our society are NOT the only high risk group who will also need to continue cocooning. 

There are questions which now need answered:

  1. What of children and adults like my son Brendan Bjorn? Profoundly disabled, incapacitated, medically complex and fragile loved ones who depend upon full time nursing-level care to survive are at great risk from this devastating virus.
  2. How will they be best protected once quarantine is lifted?
  3. How can they be protected in their own home when other family members are no longer in quarantine?
  4. Is it even possible to have one family member back out in society, even in the germ-zone we all know schools to be, coming home daily into the same environment as the family member who is cocooning?
  5. And what of the family carer in this scenario: What are carers to do as they go between family members – cocooning and not – to protect the most vulnerable? What are they to do to protect their own health in this scenariofor if they go down, the entire ship will surely sink. 

The past few weeks have been dark times for many of us. Some of us can thankfully see the light at the end of the tunnel as the talk of lifting restrictions begins.

But for those of us living in the world who are at high risk, nothing will have changed with the lifting of restrictions for society. If fact, we may feel more isolated and forgotten as the world carries on without us while we hide away in our homes, afraid, worried, trying to avoid an invisible foe which could easily take what is most precious to us. Please don’t forget us.

Yes, the above questions must be answered, fully, in detail, and without political spin or condescending vagueness. And once answered, help needs to be given for all members of society.

The most vulnerable must not once again be left on the sacrificial altar. 

 

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The disabled, their family carers and COVID19 in Ireland

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I mowed around the bright yellow flowers in my back garden yesterday. I’ll be helping the bees, was my first thought. My second thought was my father’s voice transporting me back to my 5 year old self. “Why are you pulling the flowers, Dad? They’re so pretty!” The annoyed voice replied telling me how they were weeds that didn’t belong in the lawn. More were ripped out as his sweat dripped down upon them.

I continued to mow around the bright yellow flowers in my back garden. Who’s to say they’re weeds, I then thought. Are they still not a lovely flower that brings beauty to a world which so often has too little?

I looked in the window to check on my precious son laying in his bed. His smile beamed up at me as I waved at him. A beautiful, bright flower in a world which would often consider him of lesser importance than the familiar green lawns finely manicured to perfection.

And then I wondered: Would my own dad consider this grandson, whom he never got to meet, as a weed to be discarded as other family members have suggested, or would he see him as I do, as a happy blossom of love and light?

I went back to finish mowing the back garden, more determined than ever to fight for the dandelions of this world. 

In this surreal and challenging time as the world tries to make its way though a pandemic, historically marginalised communities such as the disabled in our society are continuing to be ignored. What’s so pressing about it now is that it’s an urgent matter of life or death as the needs of the disabled community in residential care homes are being overlooked.

In Ireland, dozens of people in disability care homes are now infected with COVID19. As of last night’s (14 April 2020) Department of Health briefing, no figures were available on if any of those precious souls have died.

There should be data.
If there isn’t, why isn’t there?
If there is, why isn’t it being released?

There should have been a care plan in place weeks ago for any of our disabled members of society and for their family carers should they contract COVID19. There wasn’t. 

My son lives at home with me, but so many other people’s disabled sons and daughters, brothers and sisters, don’t. These residential care homes are just that – homes. We should all be completely safe in our own homes. Disabled people – more vulnerable to the adverse affects of COVID19 than the majority of the population – in these settings aren’t as safe as my son is in our own private home…

…and that is a fact I can’t ignore. I hope you, kind reader, won’t ignore it either.

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Mother’s Day during the COVID19 pandemic

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It certainly is a Mother’s Day like none of us could have ever predicted. For me, I’m spending it trying to avoid my two sons. No, this is certainly not how I expected Mother’s Day to unfold. I’m sick and awaiting testing to discover if I have contracted COVID19.

On March 18th, I rang my GP with my symptoms and was then referred for testing. Now 5 days later, I’m still waiting to hear when I’ll be tested.

Until I know if I have COVID19, I need to self-isolate – something which is impossible to do as a lone parent carer of a disabled child. So, until I know one way or the other, and since I can’t self-isolate, I’m limiting my time with both of the boys – something that is tearing me up as a mother and is particularly difficult for my youngest son who wants nothing more than to snuggle with me on the couch and watch a film together.

On March 18th, it was also the 30th anniversary of my mother’s death. Now 5 days later, missing my own mom hits me hard as I can’t spend the time I want with my own children while I await that test.

Until I know if I have COVID19, I feel like I’m walking on hopes of a future as fragile as egg shells, wondering if I’ll have another 30 years with Declan; wondering if I actually do have COVID19, and wondering if have I done enough to spare Brendan Bjorn from contracting it, too, knowing such a deadly virus would be more than his fragile body could fight off.

Yes, it’s a Mother’s Day unlike any other for all of us. We just need to keep holding out hope for next Mother’s Day that we will still have all of those around us whom we love more than life itself. For me, it’s my two precious sons…those two sons down the hallway, isolated in their own rooms.

Stay well. Stay safe. Stay Home.

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