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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A year later

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This week last year, Brendan Bjorn had his spinal fusion after waiting nearly 17 months on the so-called urgent waiting list. What I didn’t know that first week is that it would evolve into 10 weeks in hospital. What I didn’t know that first week is, despite the spinal fusion being a wonderful success in straightening his curved spine which was crushing down upon him, that a year later he’d be left with permanent damage from the inhumanely long wait.

Let me say this: I am extremely grateful and impressed with the amazing work the entire Orthopaedic team did for my son. So, let no one ever say I’m not. Ireland needs more consultants and the system is in shambles. That is the issue.

This day a year ago, he was 3 days post-op. So much was left to unfold over the next 10 weeks. Having my two sons in two different places for so long while I tried my best to divide time in different cities, different counties, put a tremendous strain on our little family. But…we got through it, as we always do. Another thing I’m thankful for: that the bond between the 3 of us could never be broken.

During that 10 weeks of Brendan Bjorn in hospital, he required his first ever blood transfusion. His gut shut down and he was on TPN via a central line in his neck for 6 weeks. He developed a new sore near his old pressure sore, which then developed an infection of pseudomonas, and though healed, that skin remains forever thinner and more fragile than before. He had a lung infection and a small infection on his spinal wound, both thankfully easily healed with antibiotics. He also developed oral thrush.

Also during that 10 weeks of Brendan Bjorn in hospital, we had an offer on a bungalow accepted and began the process to purchase our forever home. And it’s in this home where I sit now writing this blog piece, thankful.

Right now, Brendan Bjorn is down the hall, still asleep as he’s been quite ill and home from school for the past 10 days. Again, thankfully, he’s well on the mend. Yet, he still has those issues to contend with daily as a result of that inhumanely long wait for the required, urgent, spinal fusion. The skin along his waist which broke down due to his rib cage crushing down onto the pelvic bone, continues to break down. It did so again two days ago because of him not being able to tolerate side-lying while sick.

His pelvis, despite the spinal fusion, is continuing to twist, causing more issues for him to contend with; more issues for us to face in the future.

He also has some loose screws in the spinal fusion in his lower back. None of this is helped by the fact he needs an overhead hoist system which HSE won’t cover, so I’m having to manually lift him in and out of bed as the floor hoist isn’t able to be used in his room or with his long body and me just being one person.

Yet another fight for what he needs for his best care continues.

Tomorrow, I will take him out of bed, finally, for a trip to get our flu jabs for the season and run a few needed errands. He’s restricted to 3 hours a day in his wheelchair due to those pressure sore areas, but it will be good to finally leave the house again after 10 days housebound.

What a year it’s been.

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The night before his spinal fusion and the x-ray of the spinal fusion.

 

15 years

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I crawled into bed that night, 15 years ago this day on September 30, 2004, knowing that in the morning, by way of a cesarian section, I would finally become a mother after having had 4 pregnancy losses. I didn’t know the baby was a boy. I didn’t know that his brain had been ravaged by a common virus (cytomegalovirus) sometime during the first trimester, leaving it severely damaged. I didn’t know that all I had dreamt of would have to be let go of…modified, reshaped, transformed…so to fit into a life I had never imagined.

All I knew was that I was scared, but ultimately, I was exhilarated. 

Tomorrow, October 1st, my precious son Brendan Bjorn turns 15 years old. 

Over the last 7 years or so, each year I thought it would be his last. DNRs signed. Doctors telling me it didn’t look hopeful. And then again. And again. Yet, here he is! My first born son who has taught me the meaning of unconditional love, sacrifice, selflessness, and of life. As parents, we could only dream of teaching our children such all-important lessons. But it is he who has taught me all of that, and more. Truth be told, I’m still learning from him.

Another gift he’s given to me? Well, if it wasn’t for Brendan Bjorn being exactly who he is – how he is – I wouldn’t have had Declan. I was only going to have one child and carry on with my career path. That was the plan. But 15 years later, here we are in a place that wasn’t in my plans and living a life that certainly wasn’t part of the plan.

As the saying goes, life is what happens to you while you’re busy making other plans. 

Even though this journey has been, and still is, incredibly difficult much of the time, and even though I know how this journey with Brendan Bjorn will one day end, the ultimate gift given on his birthday tomorrow will be given to me: The gift of celebrating 15 years of being blessed to be his mother.

Happy birthday, angel boy!

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