“There’s nothing anyone can do to help you!”
That was more or less the message we were given when Ben arrived in our lives, having been born with severe, complex disabilities.
No one actually said those words, of course, but that was what we were left with at almost every turn.
The conversations were mainly focused on all of Ben’s “problems” and how there really wasn’t a fix to those problems.
It was easy to get caught up in all that negativity, to believe that’s all there was. For a long time, we had no idea what path to follow, or if a path existed at all.
With so few giving us much hope, we relied on brute force to get things done and help Ben succeed.
After a few years of that exhausting pace, where it was just me and Jan against the world, so-to-speak, we realized we needed help. We couldn’t do this all our own.
It wasn’t good for our health.
It wasn’t good for our relationship.
And our kids were certainly not...
So you’ve just hired a caregiver ...
Or maybe you've had someone for a while ...
Or you know someone who relies on a caregiver ...
How do you keep them bringing their best?
Well, consider this obvious fact. Everyone loves to be praised and told they’re doing a good job.
I think that goes without saying.
Some of us might feel a bit uncomfortable when we get a compliment, not really knowing the right thing to say. But we love receiving them, nonetheless.
The problem is that many employers are not really good at giving compliments and pointing out when things go right. And don't forget, you (or your friend) is an employer in this situation.
The tendency is to expect that people will do a good job which means you wind up ignoring those things and focus only on the gaps in their work performance.
If you’ve ever read any of Ken Blanchard’s writings, you’ll know what I’m talking about.
One of his books is rather brilliant. It’s...
“Hey, Gladys! Get me a beer!”
A friend asked me what would I do if someone in my extended family – let’s call him Uncle Ralph – talked that way to Ben’s caregiver, Gladys.
I was stumped for a moment, since that has never happened.
But it was a good question and highlighted the importance of knowing where the line should be drawn between keeping the relationship with your caregiver friendly but also professional.
Of course, “get me a beer” is way offside regardless of where that line might be.
So, first things first. At the end of the day, you need to remember that Gladys is an employee of yours even if you’re not directly responsible for paying her.
This sets up the dynamic of an employer/employee relationship as well as the responsibilities and respectful behaviours that go along with it.
Hopefully, it’s a wonderful relationship where Gladys loves her job, she actually DOES a wonderful job, and your child or...
When Jan and I were thrust into Ben’s world of 24-hour care with no preparation and, of course, no training, we struggled a lot … which really isn’t surprising.
We were off-balance nearly all the time and had little confidence on what to do next.
Strangely, we thought we were the exception. An outlier. So different from the rest of the world.
After all, people weren’t lining up at our door to help us figure things out. We were pretty much left on our own.
When it came to providing round-the-clock care, it all fell to us. And I would say, that’s probably how we wanted it.
He was our son, after all. Our responsibility. It was up to us to provide the care needed.
But as Ben got older, his level of care remained high. Needless to say, that just goes with the territory in the world of disabilities.
It took us a long time to figure out that we couldn’t do this on our own (or maybe it took me a long time).
What we didn’t realize...
The statistics1 are staggering when it comes to unpaid, family caregivers. Whether it’s providing care to your child with a disability, your aging parent, or some other loved one, the numbers are mind-numbing.
Here’s the deal:
On top of that, unpaid family caregivers in the U.S. give up $3 trillion (that’s 12 zeroes) per year in wages, pensions and other benefits.2
The scary thing about this is we fell into most of these categories when Ben was young.
We did everything ourselves. 24/7. 365 days/yr.
We didn’t ask for help. We were his parents. His care was our responsibility.
Whenever it was suggested that we should bring in a caregiver to help, we had a million reasons why that wouldn’t work.
Weird headline, I know, especially coming from me ... when every blog post I’ve published on caregiving has been upbeat and positive about why you absolutely need to bring a great caregiver into your life.
And how this is the key to creating more balance, energy and freedom in your life.
I mean, we even created a best-in-class training program on how to find, hire, and train a great caregiver and nurture a wonderful relationship with them. (Learn more about The Caregiver Support Formula).
So why would I focus on the downside to all of this?
Well, with just about everything in life, there are trade-offs. There is a cost and price related to everything that we do and every decision we make.
The question becomes, is bringing a caregiver into your life worth your time and energy?
Here’s a hint: the answer is a resounding YES!
But you need to be prepared, to understand these “costs” (and I don’t mean monetary), and what you’ll be...
Having a caregiver in our home brings a certain dynamic to our lives and Ben’s life. Some of it’s good. Some not so good.
One of the things we’ve learned is to “pick our battles” since everyone comes with strengths and weaknesses … and baggage.
It’s a balance. As long as Ben’s caregivers are focused on him and treat him well, that’s really the only criteria. We can live with just about anything else that comes with it.
One of Ben’s caregivers – let’s call her Savannah – had been with us for about 7 years. That’s a long time in “caregiver years”.
Savannah’s greatest strength was her reliability. She always stepped in to fill the gap when other caregivers didn’t work out or quit without notice. And she was willing to do consecutive overnight shifts – a big plus if we ever wanted to get away for a few days.
But she often strolled in late for her shifts, and she...
Earlier today, a friend of mine posted on his Facebook page, “Cruise booked!”
I scoffed and rolled my eyes. The only way that would ever happen in my life would be if all the planets and stars aligned.
First, we’d need to book caregivers to cover each day we were away, and that means 24 hours per day, along with a backup plan if one of them couldn’t keep their shift or we got delayed coming home.
Second, we’d need Ben to be healthy leading up to our departure. No seizures. No strange behaviour. Obviously, it would be impossible to predict any of that months in advance.
Third, we’d need a way to get home quickly in an emergency. Floating on the open waters would make cruising just about impossible.
And last but not least, we’d have to be able to afford it. Or rather, is a cruise where we want to spend our money and do we want it bad enough to go through all this prep work?
I have to be honest. My first reaction to reading about his upcoming...
Keeping your child safe is a no-brainer. As parents, this is front and centre especially when our children are young.
Safety is also a trump card. How can you argue about not being safe? But if exploited, it can be used to create fear and uncertainty.
When Ben was in his second year of high school, we pushed to have a structured schedule in place to help him develop his physical skills.
We believed that if we didn’t give him every opportunity to stand and walk, he would never learn how to do either.
I mean, that’s just common sense, right?
How can you learn a skill if you’re never taught and given the opportunity to practice?
But including standing and walking into his daily routine required the expertise of healthcare professionals to assist the school staff.
Unfortunately, most of the therapists we encountered didn’t believe that Ben could ever learn how to do either.
And when it came time to provide any recommendations...
I remember going to our very first appointment to talk about getting a wheelchair for Ben. It was with the Remedial Seating department at the IWK Children’s Hospital in Halifax.
I remember feeling rather unsettled that we had reached that stage with Ben.
The simple Perego stroller and ethafoam insert wasn’t doing the trick for him anymore. The only realistic option was to transition to a paediatric wheelchair.
But I didn’t want to go there since it was an admission that Ben’s physical disabilities were becoming more complex, and we were losing control.
I didn’t mind our weird looking stroller. Sure, some people stared. But having to use a wheelchair took weirdness to a whole other level, and it would mean just about everyone would be staring at Ben and us, no matter where we went.
We were presented with different types of wheelchairs along with a list of add-ons and options and needed to make some decisions.