Being a caregiver is one of the most important and honourable roles in the world. To be entrusted with the responsibility of supporting the care and development of a person who may be completely dependent or not have a voice should be cherished and respected.
But make no mistake. Being a caregiver is hard work. Whether it’s you, a family member or someone you hire, it doesn’t matter.
The role is often stressful, monotonous, physically and emotionally taxing, and any rewards are sometimes slow in coming.
In our experience of hiring caregivers for Ben, the three-year mark seems to be the time when the person needs a break – either some extended time off or a new set of responsibilities.
We try to be sensitive to burnout and making sure they are supported themselves so they can keep bringing their best every day.
This last point is the key. Ben (or your child) deserves to have the right person supporting him every day, someone with the right mindset and energy level....
I have to tell you a story.
It happened nearly 8 years ago but I still remember it well. It was a Thursday, about 7:45pm, when the phone rang. It was Ben’s caregiver, Lisa (not her real name), calling. I rushed to swallow the last bit of food from dinner before answering.
“I’m looking for Mike,” the male caller said.
“This is Mike,” I responded.
“Mike, this is John (not his real name), Lisa’s husband. I’m calling to let you know that Lisa has worked her last day with you. After the way you have treated her over the last few years, she just can’t take it anymore.”
If you can picture my jaw dropping to the floor, eyes popping, and getting short of breath, that was about how I looked. Lisa had just left our house 30 minutes before, in a good mood, telling me and Ben she’d see us tomorrow.
I wasn’t quite sure what to say but responded with, “What are you talking about? Can I talk to...
Figuring out how to bring a caregiver into your life, even for a few hours per day, can feel like a daunting task. Wondering where the money will come from to pay for a caregiver can create a lot of stress, on top of wrapping your head around how you will ever find a way to trust them with your child.
On the flip side, once you’ve come to terms that you can’t do it all yourself, no matter how Herculean you think you are, and you realize that handing off caregiving responsibilities can actually improve your health, you will start to see past all those barriers.
The key here, though, is to find the right person. And that’s not always easy. Whether you try hiring a caregiver yourself or rely on an agency to handle this, there are some really important questions you need to ask before you bring them into your home. It doesn’t matter if this is your first hire or not. These questions still apply.
I’m willing to bet that as a parent of child impacted by a disability, you have had to navigate your way through many unplanned events and crises. Some of them may even have been life threatening or serious enough to warrant calling 9-1-1.
It’s safe to say that during the stress of an actual emergency is NOT the time to figure out your response. Most of us under pressure often make poor decisions if we haven’t prepared ourselves. And if it can happen to you, it can happen to your Caregiver, too, which can lead to some unwanted outcomes that no one wants. Helping your Caregiver prepare for an emergency is really part of the training you should provide after hiring the person.
To help you help them, here are some simple rules of thumb (RT):
DO NOT expect or assume your Caregiver knows what to do. Even though they may have lots of experience in emergency situations, I expect there are specific aspects about your home or your child’s situation that they...
Trusting your child to the care of someone other than a family member is a big step, no question about it. For some, it can be a leap of faith, especially if you’re way too analytic and meticulous like I am.
I have to be honest. I’m never really 100% confident ALL the time that Ben is OK with his caregiver. It gets really close to 100% but it’s never quite there. How could it? They’re not there 24/7 like I am.
But do I worry that something “bad” could happen? Definitely not.
So is it a question of trust? Sometimes, because everyone can have a bad day.
So why do we leave Ben in the care of others?
Well, for lots of reasons. First, he doesn’t want me or Jan in his face all the time. He’s an adult now and no adult wants their parents in their space much of the time. Even if he were younger, he deserves his freedom and independence just as much as anyone. There is no difference there.
Second, because Jan and I can’t do it all the...
It will probably happen sooner or later. The Caregiver you’ve hired to support you and your child will leave. It may be on your terms or on their terms. And it may end badly.
Sometimes there’s nothing you can do about it. Sometimes you don’t even see it coming. Regardless of the reason, you are still left feeling hurt, vulnerable, even angry. You also can feel violated and cheated since the person who was there to help you and your child just get through the day has seemingly abandoned you, and now you’re on your own, again.
Make no mistake. Your Caregiver’s job is hard work. It is both physically and emotionally demanding. The hours are often long. There can be the stress of health events, seizures, emergencies, behaviourial issues, getting yelled at, and not feeling valued. And it’s often the case that your Caregiver is not paid an appropriate wage to meet the demands of the job.
Given all of these factors, it’s not surprising that things...
Figuring out when you should bring a caregiver into your life to support you and your child is not easy. If you’ve never hired anyone before, a lot of questions can swirl around in your head and actually prevent you from making that decision.
Questions like, “Can I afford it?”, “Where do I find the right person?”, “How can I trust someone to care for my child?”
The other factor that gets in our way is that few of us truly like change. And as a parent of a child with a disability, you’ve already experienced so much disruption in your life, you don’t want to cause any more by bringing in a caregiver, even though your life may not be in a good place. Most families become so immersed in the day-to-day things, in the weeds of their lives (because they have little choice), that it is difficult to step back and see what’s really going on.
Believe me, I’ve been there.
However, what is also true is that, as parents, we can't...
When Ben was born, we were told he would never walk, talk, or go to school. At the time, I couldn’t imagine what that meant. I couldn’t imagine how we could live in world that might require 24-hour care. What I’ve come to understand is that this world is more difficult than I thought it would be. But it has also become an important part of my life. Having lasted 24 years, I guess you could say we have somehow figured out how to survive in this ever-changing world.
One Saturday, a few months ago, when it was just me and Ben (Jan was at work), I decided to log every minute of the day to see what 24-hour care actually looked like.
That day began at 9:10am when the home phone rang. I deliberately didn’t answer it. This was my day to “sleep in” since most days begin at 6:30am. I wanted to experience what eight hours of sleep felt like. But with Ben awakening at 4:00am for some unknown reason, just long enough to get...
Somewhere over the last 20+ years, I lost the yearning to dream what life would be like had Ben been born without complex physical and communication challenges.
There was a period when I constantly wanted to press the rewind button to return to a simpler time, to before Ben was part of our world, so that I could understand what I had done so terribly wrong to deserve the burden of raising a child who required 24-hour care.
I am thankful those feelings have evaporated and that my singular focus now is to only move forward, to build on Ben’s successes and help him live a life of fulfillment and happiness.
Occasionally, I do wonder what better progress we could have made if we knew then what we know now. I imagine somehow going back to the day before Ben was born and secretly sending an email to the 29 year old I once was. It would look something like this:
Last week was one to forget. Ben was not himself on Thursday, refusing his afternoon snack and supper. A look of worry and distress was deeply set in his eyes. The flu bug that had knocked him flat on his back a few weeks previous appeared to have resurfaced with a vengeance. It was sudden and violent.
For more than three hours he struggled as wave after wave of pain engulfed his body, forcing him to gag and wretch without success. By 10:30pm, the prolonged stress finally bubbled over into an all-out seizure – something that hadn’t happened in over four years. No matter how many times I witness them, seizures are always scary to watch. And that’s all we could do since we had no meds to calm the convulsions. Those we had used in the past had long since expired. Ironically, only a few weeks ago did we trash our out-of-date supply of valium and, at the time, mused at how long it had been since we had needed them. Plus, we thought, if Ben did have another seizure (very...