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.