One of my – personality quirks – is that I worry. I worry a lot. When I was younger, there were definitely things I didn’t worry about enough. And now that I’m older, there are definitely things I worry about too much. Worrying is something I have carried with me since I was a child.

My father’s favourite expression is, “Prevention is better than cure.” While I think this aptly applies to the state that we’re in given the current pandemic (or rather, we’re living with the repercussions of not behaving like this during this pandemic), it’s a lot for a 5-year old to deal with. As I grew older and hit my teens, it was something I definitely wanted to rebel against. But having my father as a father, it wasn’t something I went very far with. (I pushed limits to try to get to New Kids on the Block concerts. This was the extent of it.)

So while many of my friends and family have a, “Life is short!”, “You only live once!”, or “Live in the moment!” mantra, it’s not something that comes to me very easily. I rarely act on impulse. And if I do, I tend to worry about what I’ve done because I’ve acted on an impulse! I tend to take my time and mull things over. While I don’t necessarily enjoy the monotony, I feel more security in having a set routine. I’ve already thought about all the ways things could go wrong. Subsequently, I have mentally prepped myself for how I would react with each scenario.

When my mom was in the hospital recovering from her stroke, we had no choice but to fall into their set routine. There is a practicality to having set times for ensuring patients are fed, medicated, groomed, gone to therapy and rest.  If you’re recovering from a brain injury, focussed and repetitive actions are specifically part of your treatment plan. You can Google search the science behind it, but basically, it helps to re-access or re-wire the parts of your brain to recall these activities, and re-learn them. It’s really important at the start of recovery. So when you’re released from the hospital or rehab facility, you do your best to try and keep a routine. There is a plan and scenarios and options and alternatives are thought out. This ebbs and flows as time goes on, and as a caregiver, you’re also committing to the routine.

Over the past year and a half, we’ve had many variations to our routine. While it feels a bit strange, given that I wasn’t working and we were in lockdown, I would wave it off as part of the pandemic. Nothing was normal, so why should our routine be? But some of these variations were due to my mom’s changing health.

First off, so as to not cause any alarm, things seem to be fine. There are normal aches and pains and deteriorations that come with age and living with the effects of a stroke. So there are a variety of tests that must be done. But because I’m living this in real time each and every day, it’s tricky for me to manage my level of worry. I have a set amount of worry that comes with my day no matter how hard I have tried to get rid of it. So I’ve adapted and called it my “baseline worry”. 

This includes worries such as ensuring my mom is still breathing overnight while she sleeps (yes, I will shake her if I can’t see or hear her breathing, just to make sure); worry that she wakes up in the morning; I worry about what she wants to eat for the day (she’s fussy, but we also have to be careful as she must eat slowly due to swallowing issues from her last stroke); then I worry about the mood she wakes up in; I worry that she’ll go rogue and decide she can dress herself; worry that she’ll turn on the stove and make tea for herself; and then I worry that she falls (she’s fallen a few times and she’s broken her wrist twice); and the overall worry that she is “ok”.

I also worry that my sister is all right (a general, overall worry on the wellbeing of a loved one), and that my brother-in-law and their puppies are ok too. There is contact at least once a day and if there isn’t, my worry kicks up over my baseline. There is my father’s health. He’s the other caregiver as my mom’s husband, and while he’s in better shape than me, I still worry about whether he will wake up each morning. I have a variety of friends and family for whom I have general worry on their well-being, and then just at the bottom of my baseline, is a little worry for myself. (I can’t let anything happen to me because who will worry about all the things I worry about?)

So while we’re waiting for all these appointments (my mom hates having to deal with doctors and tests) and test results, I find myself worrying a little bit more. We’ll call this “caregiver worry”. Every extra nap she takes, every change she makes in her routine, or any complaint she has about pain has me feeling hypersensitive. I make some notes, I monitor, and then I have to decide if it’s something worth some extra worry, or something that’s normal. And as you can imagine, it’s exhausting. Nothing I’m not used to, after all.

When you’re a caregiver, you don’t really ever get a break. We have many posts on this site (See: ‘caregiving’) which speak to this inability we have, as caregivers, to fully let go in case something happens, and always having to be “on”. The best I can do is to manage to my baseline. I know this seems like an incredible waste of energy for a lot of people, but it’s not something I’ve ever been able to shake. I’m pretty liberal with the “Don’t waste your time worrying until you know you have something to worry about” advice, but damned if I’m ever able to take it.