Hey! I Need Some Light in Here!


Hey! I Need Some Light in Here!

ceiling-lamp-335975_640This diagnosis my husband has -- frontotemporal dementia -- is calling me to re-create my self, to search out a new identity, to find meaning in living another way. The disease has been evolving for many years in my husband. It seems a slow process in his case. On the seven-point scale he's been at stage four for about six years since he was forced to quit work at 58 years old, unable to perform his job.

There's this thought that sneaks in when I'm not looking. I turn around and there it is, snout in my face with its rank breath and snarling fangs. At the rate it's been going, by the time we are through this, I will be too old. There will be no opportunities  left for gainful employment, no time remaining to develop rewarding relationships. This is it. Life is over.

At first this notion that I'll be too old takes me to a dark place.  It's like running full speed into a brick wall, bouncing off it to land face down, battered, bruised, and left with a concussion. After finally getting a definitive diagnosis last year, I've dragged myself up to sit dazedly against the brick wall. Instead of knocked for a loop, I'm now reeling in bewildered consternation that ... here we are already at the end of our "productive years." While I lean against this rough, nasty wall catching my breath, I discover I'm bleeding, my life energy going down the drain. I'm so tired and we have hardly started.

The shock of it is fading now. I'm on my feet and stumbling around in a gray world that moves in and out of focus, flickering between reality and an odd sort of conscious denial. I wonder if the blurry fog will ever dissipate. I wonder what's lurking in the dark corners of this claustrophobic room. Hey! I need some light in here!

I catch a glimpse of what my task will be. It has something to do with getting comfortable in the murky shadows and dark corners, learning a new skill getting through sticky, cloying cobwebs and taking musty sheets off strange pieces of furniture. I get to know their shapes as I dust off their surfaces, feel my way as I become familiar with where everything is. Instead of a wide, bright world to go rambling in, I have this complex room to learn to navigate. I just have to change my focus from the horizon to this room. I can get to know it. I can learn to re-create my self in this room....

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Thank you for sharing Helen!


I went through a fog (never saw it coming) when I moved to move in with my parents. It lasted longer than I thought it would. I did what Denise recommended -- I stole back some time. Some days it is in very small increments, sometimes zero, sometimes several hours. This may sound trivial, but I bought a few new shirts even though I didn't *need* them (well honestly I had gained weight, but I wanted something colorful). \r\n\r\nI hope you will find ways to treat yourself! You deserve it!


There are many who have come out the other end of FTD, stronger, wiser and more compassionate. There is a whole family of us here on caregiving.com that support each other weekly in our FTD chat on Mondays at 7:00pm ET, join us and meet your extended family!


I love this post, Helen, because you write of giving yourself a chance, a possibility, an opportunity. I know a diagnosis seems to steal all of that. We can steal it back, I think. And, as you note, we just need a little light, lots of support and someone else to say, I believe in you.\r\n\r\nI believe in you, Helen. And, I believe life continues to unfold for you with new opportunities.


You have an awesome talent and way of expressiing your feelings!\r\nI hope you find the needed support to help you with this challenging disease.\r\nThe FTD chat group here is a good place to connect with others dealing with this.

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