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.

Here’s a quick example …

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.

Somehow it seemed like we had failed.

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...

When I look back on some of the decisions we made concerning Ben’s caregivers, I have to shake my head and say, “Wow, were we ever stupid!”

With each decision, I was sure what we were doing would be the best for Ben and us. But the problem was that we were totally immersed in the grind of Ben's support, and all the stress and confusion that came along with it.

We were too close to each situation to really assess things objectively. Sometimes I wonder if we had asked for help earlier, would the outcome have been better.

#1:

The first, big, mistake we made was thinking we didn’t need much caregiving help at all. We were fairly young when Ben was young and believed we had the energy and drive to do all of it (or most of it) ourselves.

If I had to rely on someone else and give up that responsibility, it would be admitting defeat. That I would have somehow failed in my role as his dad.

It was really pride and a weakened self-confidence that got in my way. But...

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.