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 course 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.
We’ve hired a lot of caregivers over the years. I guess when you’re looking at a 25-year run, that’s pretty much how things go.
Some have stayed with us a long time. Some too long. And some haven’t lasted 6 months. Unfortunately, turnover is unavoidable despite best efforts mainly because caregiving is a tough job.
Looking back, I would say that each of Ben’s caregivers brought a slightly different set of skills to the role. They, also, portrayed different levels of confidence, and brought a different feel to the role.
Some have had a really strong work ethic. These are the keepers. They anticipate what needs to be done and just do it without being asked.
Some have brought a high level of positive energy that is contagious. These people can pick up anyone’s spirits.
Others have faked their way through it. They are good at looking good but they aren’t really engaged or interested in making a difference. They excel at doing the bare...
I admit, this is a strange title, but I wanted to get your attention.
It seems obvious that the reason you bring a caregiver into your life is to help with the care of your child. And that can take on many forms – physical care, personal care, or medical care.
No question, all of those are important tasks that need to be done every single day. And relieving you of these hands-on responsibilities, if only for part of the day, is one of the reasons you should definitely bring a caregiver into your life.
But the “care” part is only part of the equation … and the need. Life is way more than just “care”.
Here’s the thing. Your child is not his body (or her body). He HAS a body. He is not his personality. He HAS a personality. And, he is not his disability. He HAS a disability.
What he IS, is a life force who purpose and dreams need to be realized. We all are!
Maybe that sounds a bit over-the-top, even unrealistic. But consider this: the way we...
Tomorrow, I get to present to a large assembly of high school students – actually at the same high school that Ben attended. The topic is about how to build an inclusive world.
It’s part of the school’s “Saints in Action” programme which gives students the opportunity to serve their community in different ways and give back. It’s a great programme to help them develop more holistically.
I’m going to show the short film of Ben’s Story as a shining example of the power of an inclusive community. If you haven’t watched it yet, click here and prepare to be inspired :)
Following the film, I’ll be talking about 3 ways the students can help build an inclusive world.
The first is to change their worldview. That’s because how they see the world and the language they use will determine how they will live their lives. We all live in the language we speak.
Second way is to develop a belief system that every life is of equal value...