Manor Musings

Caregiving. I hate this word. It conjures up frail, older people on their way to an impending death. This can’t be me, it can’t be my husband. We are young-ish. Our kids are young. Stephen is the strongest man I know; he doesn’t need or want caregiving and there is no way his death can be impending. But our language doesn’t seem to have another word for it. There is no literature on caregiving of or for younger people.

So I wrote a guide, with checklists and to do lists – all the practical things that must be done and looked after but you’re too overwhelmed to even begin, let alone plan it all out.

Except that I was able. I even gave myself a title – The Logistics Director – and planned it all out through to a happy ending because I’m good at that, always have been.

I was frustrated at being thrust into this situation and let down by there being a lack of practical steps and things to do when your world is imploding. Sure, sure there were things about making meals or getting meal services and the like for people during times of stress but no meat. So I thought if I could make these lists and plans and make them available to those caregivers like me in the future, maybe they would have a better experience than me.

When you have kids and they play hockey and do dance and soccer and ski and hang with friends and, and, and all that, the last thing you want is for the rest of their world to crumble around them when their dad has cancer. You want structure and sense of safety maintained for them but how do you make that work when you have to be at your spouse’s bedside during 4 – 10 hour chemo days in a row every 3 weeks and then week and half recovery, if that’s what you can call it. You need details and practical plans.

When you have to keep working full time to pay the bills but obviously your don’t want your spouse thinking about money or anything to do with stress at all, you need a plan and multiple back up plans but how do you do that while your world implodes? Checklists apparently. And blinders. By blinders I mean you have to make a conscious decision of what to focus on. I chose my husband and loved ones instead of myself and I guess now looking back I can write about the impact on me as “the caregiver.” I still really dislike that word but there it is, again.

So I put my blinders on and remember telling myself consciously to just put one foot in front of the other, day-by-day and focus on Stephen and the kids and getting through whatever our cancer journey was going to be and it would somehow work out – I wasn’t going to sweat it, all the myriad of little things that can get in everyone’s way when you’re not dealing with life and death on a daily basis. I guess that’s literally happened – I didn’t “sweat it” or anywhere close to it for 2 years it’s been now – add in the stress hormones running rampant and likely peri-menopause and you’ve got 50-60 (or more!) pounds than you ever thought possible for your frame to hold. See, cancer doesn’t just take, it gives. Fuck. And yet I realize when looking in the proverbial mirror that I let it happen. I allowed it. Because my husband mattered more to me, because my kids matter more to me, because I needed the job to pay the bills but I couldn’t allow myself to suck at it and just show up – I still needed to achieve and because of these things here I sit. I allowed everything to matter more than myself because I knew I could get through it. So, shouldn’t I? Just do it.

Did I know rationally it wasn’t healthy? Sure. Did I hear everyone say “you’ve got to make sure you take time for yourself too.” Sure. But if you think that’s actually possible when the love of your life has cancer, then you’ve never been close enough to it. That, or you’re a way better person than me. Holy man has it been hard. I will say that. I hope you never have to go through any of this, ever. But if you do, I’ve got checklists. Haha. Seriously though, maybe reading about my experience will let you know that you’re not alone. I know it can’t be the same as I’ve learned everyone’s experience with cancer is so very different. I guess mostly, it feels like I’m just starting to get my head out of fight or flight mode and I’m impatient. I don’t understand why I can’t be “better” right away now that I’ve decided I’m worthy of health also. So I guess that’s it – there is a large scar in my heart, my head, my everything and I am trying to move past it all and reestablish my health, my mental wellbeing, me in version 2.0. What a ride this reboot is! Not for the faint of heart that’s for sure.

The Manor is clearly Musing!