grief | Lianne Britnell

A little while ago a friend was sharing a tough day and said how given my husband passing that I had experience with adversity. I took a second to ponder that and said I had been reacting to challenging situations a similar way for a long time. That I go with the Flow. So much of life is deciding whether to go with the Flow or against it. That is how I see it at least.

In the days following I gave some more thought to it. I was a dramatic teenage girl, maybe not as much as other girls, but dramatic all the same. I knew I hadn’t always gone with the Flow. I cruised my memory, trying to figure out when I went from fighting the Flow to going with it. I thought maybe it’s a bit genetic, that it’s just my makeup and over time I’ve honed it? I don’t know whether there is any truth to that, but what I did come to realize was that it mostly started happening about 16 years ago when I was diagnosed with Relapse and Remitting MS. The diagnosis came at a time when I had a toddler and a three month old. I was told one of the ways to reduce the chance of relapsing was to get plenty of sleep and to reduce my stress. With a small baby and a toddler needing to be cared for getting rest wasn’t something I had control over, stress on the other hand was. That’s when it started….going with the Flow. It wasn’t something I chose to do, it just was something I was pretty much forced to do. After a while I think it became easier and easier. I had a few major events that happened after my diagnosis and I had to learn to handle the stress that came along with them. Was I perfect? No. Did I get stressed? Most definitely.

Last week I was dealt with another event and from it’s aftermath I have come to view going with the Flow a little differently. It became apparent that part of going with the Flow is perspective. Our experiences colour our perspective. My perspective is bound to be very different than someone that hasn’t experienced living with MS and my perspective will be different than someone that has MS because of witnessing FTD slowly take my husband away from us. It truly is perspective. We can all learn to go with the Flow. It takes keeping things in perspective and recognizing that going with the Flow requires acknowledging that we don’t have control. Grasping for control is the opposite of going with the Flow. Ultimately, if there is anything I have learned over the last decade or so it is that we don’t have control over much of anything.

That leads to my mantra of late: CG2F – Couldn’t Give 2 Fucks. There is very, very little that I care about these days that can move me out of the Flow. Don’t get me wrong I care….deeply. I just choose to view it through my lens – my perspective. The majority of the time my worries are folded into paper planes and turned into flying fucks.

Andrew was diagnosed with Frontal Temporal Dementia (FTD) in 2013. He had been noticing something was “wrong” since the fall of 2008. By the time he was diagnosed he was having difficulty getting his words to come out. He would struggle to find the right word or to actually pronounce it. To say he was frustrated was an understatement. With that frustration came anger and lashing out at family and co-workers. As time passed he pulled away from everyone except for me. I was his lifeline as far as he was concerned. It remained that way until the end.

He had recently turned 51 when he passed away, but he was unable to communicate or care for himself in any way and for the last month or so was no longer able to walk. He became a shell of his former self.

It’s been a month since Andrew passed away. It’s still so hard to believe. It’s a weird feeling knowing that someone will pass away at some point. He had been slowly fading away for months if not years. I knew it was coming. I just thought it would continue to be a slow, painfully slow, decline. Instead it came suddenly…somewhat out of the blue.

I had gone to the store earlier that week to buy some new winter items for him. Even picked up a couple of things as Christmas presents. Andrew had been having more and more difficulty swallowing, but I was still taken aback when I got a call that Friday morning – Andrew was having trouble breathing and the doctor had said to provide Comfort Measures Only. I had so many calls over the months re Andrew that I wasn’t fazed by the call display reading Care Centre. Those words “comfort measures only” did faze me though. I think my brain actually went blank.

See the thing is, “what are Comfort Measures?” No one really talks about that. Even then it was hard to ask for clarification and when I sort of ventured in to that realm of what it meant there wasn’t much to offer in response. “It’s different for every situation” I was told and more importantly the nurses and care staff had never been in a situation such as this one. Women that had been nurses for 30 years had never come across FTD before. So, how were they to know?

I now wonder if anyone really knows. I certainly didn’t feel comfortable watching my husband lose his ability to breathe and questioning whether the oxygen tube was providing enough. I also did not feel comfortable knowing that he was unable to close his eyes. Unable to blink. No one seemed comfortable with that. I know I wasn’t even though he was given eye drops to help.

Andrew passed away the following Monday after three days of comfort measures.

The comfort I now have is that he is no longer suffering in silence.