Hey Government, Men Can Be Caregivers Too

If you had told me just a few short years ago that I’d be raising a child that wasn’t mine, who would then be diagnosed with a debilitating disease, I’m not sure I would have believed it. That’s so much sacrifice!

But when things broke down with my nephew and his paternal aunt, it was me that Family and Children Services contacted, asking if he could stay with us for the weekend. Of course, I couldn’t say no. On May 3rd, 2019, he came to stay with us.

At the time, we were aware of the epilepsy diagnosis. This was not a concern as my brother suffers from epilepsy. My father had a handful throughout his life so far. And I was recently made aware that my grandfather was also epileptic. I had a friend in high school who also had seizures. So, I was used to it.

I already knew that you should never hold someone down who is having a seizure. Let them thrash. You are more likely to do more damage than good. Still, keep them safe.

You may need to remove nearby furniture or objects to avoid hitting them. You may need to put down pillows, or other cushioning, and maybe even take a few hits as well. This I could handle.

That weekend, my wife and I had the biggest discussion of our lives, knowing full well that we would be meeting only a few days later, on March 6th, with Family and Children Services and other family members, on both sides, to discuss his living situation going forward.

How do you ask someone to put their life on hold to raise a child that isn’t theirs when they never wanted children in the first place. While my wife has come around to the idea of having children now, raising someone else’s child is still a lot to ask. It was clear, at the time, that she wasn’t ready.

There was only one solution. If, and only if, there was no other option, nowhere else for him to go, then, and only then, would we take him in. And it would only be until he turns 18. Furthermore, I promised my wife she did not have to be involved. I would be the one to take care of him.

And when it was clear in the meeting that we were his only option, our journey began.

But on September 28th, 2019, my nephew began to hallucinate. Things became very terrifying.

You can read all about it in:

Seizures Are Easy, Hallucinations Are Terrifying
The devastating truth behind CLN3 Batten Disease Part I

He was eventually diagnosed with CLN3 Batten Disease. There is no treatment and there is no cure. But I wasn’t going to give up on him.

As a new parent, I filed for the Canada Child Benefit. After patiently waiting for their response, I was denied. The Canadian government did not believe that I was his caregiver. He was living with me, I was raising him, and I was dealing with all of the symptoms that came with Batten Disease… yet they did not believe me.

Of course, I appealed the decision, and we went back and forth for many months arguing about whether or not I was his caregiver.

After the official diagnosis, the hospital helped me file for the Disability Tax Credit. And because the hospital submitted it on my behalf, after I was denied when I submitted it myself, they finally, and reluctantly, agreed that I was his caregiver.

… but not his Primary Caregiver!?

They had placed my wife as the Primary Caregiver for my nephew even though she was not involved. All the paperwork involving him would forever be sent to her? I had promised she would not be involved.

I argued that my wife was never included in the filing of the Disability Tax Credit. It was I who was listed as the Primary Caregiver on the forms, she was not mentioned, nor signed any of the paperwork.

But regardless of how their forms are filled out, regardless of who’s name is written as Primary Caregiver, regardless of who deals with the hundreds of medical appointments and support agencies, regardless of who actually does the caregiving, the Canadien government automatically assumes the wife as the Primary Caregiver.

What kind of sexist crap is that!?

Only women can be caregivers?

And it made me wonder, what would happen in a same-sex marriage? Would their systems crash? Would their heads explode? How would they know? Who would they choose?

What upset me most, however, was that thanks to a sexist government, I had to break a promise I had made to my wife. And now, to resolve a situation I vowed she would not have to participate in, her participation would be required.

Let the mountain of paperwork begin!

She would then have to fill out all the paperwork required to forgo any and all rights as his guardian. I would have to fill out all the paperwork to claim all these rights. It was quite an ordeal. One that had to be submitted more than once.

After 8 months of fighting, back-and-forth, with our government, I was finally made his official Primary Caregiver and we finally receive the Canada Child Benefit and Disability Tax Credit.

To this day, it still boggles my mind that our government has a sexist, old-school, mentality about caregiving. To automatically assume that the woman in the relationship is the Primary Caregiver is an insult to all the men out there who are the primary caregivers.

The world is changing. Men are capable of caregiving.

But this isn’t my first rodeo in caregiving.

One of the main jobs I had as a teenager, other than the popular corn detasseling, was babysitting. I’ve probably changed as many diapers in my life as full-time parents have. I turned homework into fun activities. I care.

When I was 21 years old, I became the guardian of a 15-year-old. He was like a little brother to me. To this day, I still consider him my brother. We talk almost daily even though he’s in Alberta and I’m in Ontario. I care.

I also work at the Crystal Ridge Dream Center where I am a mentor/tutor to many children and youth. I am working on a program to help them through everyday issues like bullying and racism, using Dungeons & Dragons as the fun roleplay backdrop to do so with. I care.

Everyone’s mental health is declining because of Covid. Adults are struggling to navigate the world today. How much worse is it for our youth? I care.

I always say, “There’s too much love in my heart, I have to share.” There is a massive deficit of love in the world today and I aim to replenish it as much as I can. I have so much love to give. I care.

The world is changing. Men are capable of caregiving.

I am a man… and I am a caregiver!

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Previously Published on medium

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