Halt! Who Goes There? Friend or Foe? Time to Find Out! Frontotemporal Degeneration Time.

Time and eye

Sometimes, I get a little panic attack about the places my husband went to after he left our house for the last time.

My chest gets a little tight and I start thinking about the things he and I went through.

Still.  Even a year after his death, I still get anxious about the places I “sent”him to.

Time flies.

But the memories don’t. Good and not so good. They don’t fly. Sometimes it’s hard to remember the good. The not so good were the most recent in time. The good times (and there were many) are further back.

My brain is still ticking over about how he ended up in some of those places. About the other people there. Thirty years older than him, in wheelchairs and diapers with their heads lolling as they dozed. There was never enough time to find ‘the right place’ because the hospital was ready to discharge him and he had to go.

Time. We ran out of time. There wasn’t enough of it to do what we wanted to do, say what we wanted to say, be who we wanted to be.

Fight or flight.

Fight. I did plenty of that. I railed on and on about how unfair it was. About how he was treated in different places. How stupid people are.

I was stalling of course. Making a noise about anything to be heard. To get people to listen how angry I was. How dare they side with time! Helping it to steal away my husband with its partner, FTD.

Fighting until we finally found a place that wanted to understand him. People who wanted to spend time with him.

Flight. When I wanted to run away. When I wished it was all over.

And then suddenly – it was.

Bzzzz! Time’s up. That’s the end of the game. You lost. Thanks for playing.

Suddenly? How could it be suddenly after five years? We knew for five years. But it was still ‘suddenly’. In seven days he was gone completely. Seven days. After five years it was ’suddenly’ all over.

October 30th marks thirty-seven years since I walked down the aisle with my 21-year old groom. Today is the second time I have  been without him for it. Last year, he had died six weeks earlier. The year before, he had no idea of the day, date or time. But we were together. It was three weeks before he was admitted for his first psychiatric evaluation due to combative behaviors. He never came home again after that.

I share this with you to illustrate that time really has no meaning. Thirty-seven years. Thirteen thousand, four hundred and ninety-six days. But it is what was contained in those days, hours and minutes that we shared that is important. Not the time itself. The love, the laughs, the frustration, the tears, the bickering. The kids, the in-laws. The thrills and tragedies. The highs and lows that everyone in a relationship has.

For a while, the most important time was the last two years. The highs and lows were so distinctive. It is hard to get those times into perspective. The FTD time was the shortest part of our lives together but also the most significant. The bastard disease really did a number on us. But we held strong. Even though time rushed forward like a roller coaster.

Time is relentless, but meaningless. Time is just a concept. It doesn’t actually exist you see. So maybe that’s why I still get my little anxious episodes. Thinking of how I could do it better. Only there won’t be another chance.

Being the pragmatist that I am, I am still thinking of ways it might have been different. I hate that I couldn’t fix it. Still can’t accept that time beat us before I could come up with a solution. Even one year on.

In FTD, time doesn’t really exist. For you or them. No-one knows how long it will last. No-one knows when it will get worse. Every day can be different. What was right one day won’t be right the next. Food, schedules, clothes, speech, abilities in general.

So, living in the world of FTD is like living in one of those movie scenes that you see. The ones where the character in the foreground is moving in slow motion but everything in the background is moving fast.

How can time go slow and fast at the same time? I’m not sure. Maybe it’s to do with the fact that is just a concept. Not a tangible thing.

In very basic terms, time in FTD is the slow destruction of brain cells. On the outside, it means that someone you love is disappearing a few cells at a time. With the cells, time and FTD steal life, love, dreams.

So is time a friend or foe?

It is a foe when it partners with a degenerative disease and eats away at everything. Together time and FTD are a fearsome duo.

It is a friend when it gives you moments you will always remember.

A time-out from the horrors of your FTD life.

Time and loveIt is a friend when a cherished moment passes slowly. Sharing an ice cream, a favorite song, a new grandchild.

Even FTD can’t take that away. Ha!

2 thoughts on “Halt! Who Goes There? Friend or Foe? Time to Find Out! Frontotemporal Degeneration Time.

  1. Your posts are so real, so true. I find myself thinking that when my sister’s time is finally up, I’ll be ready. But I know it won’t be that simple. I hope that when she’s gone, the years before FTD stole her away will be what I remember best.


    1. I hope so too Dale. It’s weird what goes through your head when it’s over. Unreal. You can’t believe it’s happening. I still can’t and it’s been over a year.Thanks so much for following 🙂


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