Pre-pandemic I kept asking what it was going to take for our Provincial government to make medical supports in the community a priority. Sadly, I knew the answer: that it was going to take a catastrophe. But would that even work, or would it only dig a deeper hole for the system and all of its patients to get swallowed up in? We’ve been discovering that answer in the last 18 months since the start of the Covid-19 pandemic here in Canada.
It was already hard enough to attract and retain nurses in the community before Covid invaded our lives. Now, like hospital nurses, community nurses are burnt out and leaving in droves as well. They are overworked, severely underappreciated, underpaid and have less job security than their hospital counterparts. Some are leaving the profession altogether, some are being snapped-up by hospitals to fill their critical staffing shortages.
Hospitals are pushing patients out faster than ever and often before they or their caregivers are ready to take on the necessary medical care at home. You can’t blame the hospitals really. They have staffing shortages and those who are left are exhausted, burnt out, and waiting for the other shoe to drop with the next wave of critically ill Covid patients. (It’s also safer in many cases for patients to receive care at home so they can be protected from the potential of acquiring illnesses in hospital, especially Covid.) But how can the required medical care be delivered in a safe and timely manner in homes when some regions have a one-year wait list for care supports in the community? If patients don’t receive the care required once discharged from the hospital, they can often end up re-admitted days or weeks later. This is hard on everyone: patients, doctors, nurses, children with complex needs, caregivers, staff, and the system to name a few.
So let me get this straight. We have nurses leaving hospitals in droves. We also have nurses leaving the community in droves. So, if patients are being sent home earlier than ever before from hospitals and there aren’t enough nurses in the community, who is taking care of the patients?
Rosalynn Carter said it first and she said it best: "There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."
Every single person reading this article will fall into one of those categories at some point in their life so this should be of interest to everyone.
Some family caregivers are ill-equipped to handle a sudden increase in responsibilities. Some, like myself, become experts in our own rights. I’ve been caring for my daughter who is severely disabled, medically complex and technologically dependent for 28+ years. I am her expert. But even though I’m an expert, that does not mean I can do it all, nor should anyone expect me to. I’m only one person. There is so much more to caregiving than meets the eye. Without taking the direct care needs into consideration, there is an unreal amount of “behind the scenes” paperwork and coordination that can often equate to a full-time responsibility and takes an immense amount of time and energy. Not to mention the endless hours of time spent in appointments, hospitals and navigating very confusing systems. Many caregivers already have other full-time commitments outside of their caregiving roles.
Hospitals have teams of people to meet patients’ needs: doctors, nurses, all sorts of therapists, pharmacists, janitors, unit clerks, HR and finance departments, and many layers of leadership right up to the CEO. In a caregiving role it often lands on one person. In my home, that person is me. The only way a family caregiver and a patient can survive and live to their full potential is with extra support in their homes.
Now suspend ALL the support that patient and family caregiver receive, like what happened when Covid hit, and you have a perfect storm. Suddenly, these family caregivers took on so much more. Many lost all the supports they had in place for the ones they care for and took all of that on their own shoulders. Personally, my daughter has lost over 4500 hours of support since the start of Covid. There is no end in sight to that either. Eighteen months later, families are stressed to the max, burnt out and physically and mentally depleted. It's more than anyone can bear yet they keep taking on more and more and more. Vacation? What the heck is that?! Sick time? No such thing! They can’t leave. They must persevere, even to their own detriment, because if they don’t, it will negatively impact the life of the person they are caring for.
So that’s one domino effect of community nursing shortages.
Here’s another: according to the attached article (https://www.cbc.ca/news/canada/toronto/medically-fragile-children-shortage-nurses-ontario-school-supports-in-person-1.6157869), there are not enough community nurses to meet the needs of children who are medically fragile in schools in some areas of our Province. As a result, those children are being denied access to school next week. Let’s get something straight here: education is not a privilege in this country. It is a right. Our children have rights, and those rights include equal access to education. Being denied the right to an education based on disability is a human rights issue. Plain and simple.
But when the dominos keep falling and there simply are no nurses to support these children in their schools, what happens next? Who is going to care for them and educate them?
Yep. The parents/family caregivers. Again.
Spend a day in my home or the home of any child with complex needs and you will learn very quickly that our homes are just as equipped as a hospital. Without formal medical training, we are performing life-sustaining medical procedures on our children that we thought were reserved only for those with medical degrees. Now, us parents are doing those specialized procedures after a crash course at the bedside. The procedures we perform on our children would cause many of you to cringe, some to pass out. They are not for the faint of heart but we do them because our child’s survival depends on them and the system depends on us to do them. We’re talking needle injections, wound site care, tube feedings and medications via a feeding tube, replacing feeding tubes and trachs, suctioning of trachs, bladder catheterizations, ostomy care and more. You name it, we do it and we’ve become specialists in our own rights. We can do them in our sleep. That’s not what we envisioned parenting would entail though. And believe me, we do not want our children to associate us with the trauma of all the poking and prodding and pain but what choice do we have? It is enough to induce PTSD in us! We won’t even touch on the fear we face every day making life and death decisions for our children and watching them struggle to stay alive on their sickest of days. We want to be the parents who provide solace and comfort to our children, not the ones causing the pain. It’s extremely taxing on us, physically and mentally, to have to be it and do it “all” for our children. We do it because we love them and want to provide the best possible care for them so that they can reach their full potential and have the best quality of life we can offer. If you spend time in our lives, you will also see all the unfilled nursing/PSW shifts that happen, many of which are overnight shifts. That means that the parent just spent the whole day awake, now must spend the whole night awake, AND still be able to function for their child, their job, their families, or all of the above the next day. This happens more often than you can imagine. With Covid, these parents have not been able to let their guards down once. They have been isolated more than anyone else. They are ready to collapse, yet they are being asked to do “one more thing” again. They and their children desperately need school and all the supports that school offers.
Now they have less than a week to figure out care for their child, accommodations with their jobs and many may risk losing their livelihood altogether. Meanwhile, they also have to muster up the energy to advocate in a system that seems so set against them. It’s an arduous and lonely journey. Families are at their brink, and they seriously can’t take on one more thing. They can’t take the desperation of feeling let down by the system one more time. They can’t take one more minute of fighting and justifying needs for services that should have been implemented already. They don’t have the energy to go back to the drawing board. I personally know that running to the media was their last resort because they are falling on deaf ears everywhere else. Seriously, what is it going to take to get the government to treat this with any priority?
Our children need their nurses in school. They need the social environment of school for their developing brains. What school gives to our children for their physical, social and mental well-being, it also gives to family caregivers.
Oh, but the Government does promise to help:
"Our government is incredibly grateful for the contributions of Ontario's health care workers, including nurses, and the critical role they have played throughout the COVID-19 pandemic, providing patients with timely, safe and equitable access to high quality care," Alex Hilkene, spokesperson for Health Minister Christine Elliott, said in the email. "We will continue to work with the sector to support the recruitment and retention of nurses in Ontario."
We’ve heard this before. These are just words and empty promises.
Many patients are even now on a one-year wait list for home/community support. How is that timely? How is providing these parents with less than a week's notice that their child can't go to school timely?
These parents work non-stop 24/7, 365 days a year without a break, without help, often working jobs on top of that. No employer would be permitted to expect that of any of their employees. In fact, the Government would be on the employee's side to protect them from such harsh working environments. Who is there to protect the parents who are killing themselves with no time for rest or self-care? (Sometimes not even enough time for bathroom breaks!) How is that safe?
Community nurses are paid lower, have poorer benefits and less job security than their hospital counterparts. Family caregivers: nothing. How is any of this equitable?
Kids with complex needs don't get to go to school like all the other kids? How is that equitable?
“Article 24 of the UN Convention on the Rights of Persons with Disabilities prohibits discrimination against children with disabilities and mandates the right to inclusive education. This provision is focused on removing barriers to participation in typical classrooms in public schools and thus promotes inclusion in the community and society as a whole. State parties (countries) are specifically charged with the obligation to ensure access to inclusive general education with non-disabled peers. The Parliament of Canada and each Canadian province have ratified the Convention and thus accepted this as law in our country.” (https://inclusiveeducation.ca/learn/right-to-education/)
Our children have a right to school, by law, but they are being denied because they are disabled and require nursing care. That is not equitable.
“Working with the sector to support the recruitment and retention of nurses.” That will take years. These families have less than a week!
Covid has just exposed the ugly truth and it was time for it to be exposed. Exposing it doesn't make things happen though. Words don't make it happen. Actions do! So come on Government, show us some action! These families need support and they need a collective here to support them. A solution is needed NOW, not years from now.
Some families have come up with innovative solutions, but bureaucratic red tape still prevents them from sending their children to school. The Government and school boards need to open their minds and think outside of the box. Waiting for a new cohort of nurses is not the answer - that will take far too long. These families need help NOW!!!
SHOW the families your appreciation in ways that really matter and get them the support they need. I can assure you that not one government official has reached out to any of these families and thanked them for all they are doing to save the system’s ass all these years.
While you’re at it, show some appreciation to the frontline hospital and community nurses here as well. Give them equality. Give them the pay raises that you are giving all the other frontline responders. Give them incentives to stay. Give them better working conditions. These people are literally saving lives while risking their own.
I truly do appreciate the privilege we have as Canadians to universal health care. I honestly don’t know how my daughter could have survived without it. But it has always been reactive, not proactive. Covid has exposed devastating gaps in the system, it is costing us greatly and failing us big time in many areas.
My heart goes out to all the nurses and medical professionals who just can’t take their profession anymore and have had to leave. I appreciate all of you. And if anyone reading this played a part in caring for my daughter over the past 28+ years, I appreciate you even more because all of you have left indelible marks on us. You enriched our lives. Many of you have been our life saviours, my daughter’s Angels.
I fully support and value the nurses who lovingly care for our children in our homes and in schools. They become a part of the family. We appreciate you.
To all the families out there who have children with disabilities, I hear you, I see you, and I will continue to fight for you. I appreciate you!
This is the domino effect of the nursing shortages.
So I ask the Government again: “What is it going to take?”
By Brenda Blais Nesbitt, Founder/CEO, Coaching for Caregivers Canada