After a rather depressing 2013 holiday season, watching my husband Vince slowly declining from his long-term affliction by the genetic degenerative condition FXTAS, I was very relieved to throw away the 2013 calendars and start over again on January 1.

The holidays were lonely for me, and it’s so hard to deal with all the holiday “noise” in the outside world, as it only accentuates my losses. Plus, my husband who could once out-eat anyone while keeping his weight stable, has been showing a marked decrease in eating, which has been breaking my heart even further. So, I felt relief as we made it together into 2014.

I keep five different calendars in different parts of the house, to keep track of appointments, birthdays, the aides’ hours, etc. So now I have five new, clean calendars and a feeling of being able to start over with a clean slate. A key word here is NEW. I’ve become more aware of how my own brain works, through all the years of watching Vince’s brain decline. As an “extreme” caregiver for someone who can’t talk, do much of anything, or show any expression on his face, my brain can get so deadened and depressed.

I recently read that we can be distracted from grief by stimulating other parts of our brains. I have become more cognizant of my dark moods lifting sometimes from the simplest things, like a NEW kitchen utensil or a NEW piece of clothing, however minor and inexpensive. Even going to the grocery store and buying NEW food can give me a lift. When things in my house break, as much as it inconveniences me to have to replace them, I am happy to have something NEW. Conversely, it lifts my spirits to throw away old stuff and clear some space in my cluttered life.

A good distraction for my mind is reading. I don’t get much reading time, but I read TIME and the New Yorker magazines diligently, cover to cover. Not all the stories interest me, but they teach me NEW things and keep me informed of all that is going on in the outside world. I love finishing one magazine and opening a NEW one— each is a fresh infusion of stimulation to my brain.

In the musical “Mame,” Auntie Mame teaches her nephew to “open a new window, open a new door.” She is talking about travelling the world and having adventures. While I’m a caregiver, I’ll have to settle for opening a new TIME magazine, but it works for me.

2 thoughts on “The Spousal Caregiver: Newness”

  1. Elaine Langley says:

    Terri, I hope 2014 will be a better year for you & Vince. It is so hard as we see each year go by with FXTAS taking our husband’s further away from us each year. Brian spent a week in the hospital a few months ago. He now has blood clots in both legs due to his immobility. I guess we learn to take each day at a time and count the blessings we still have. Have a better year! Elaine

  2. Terri says:

    Wishing you better days also, Elaine. I am so sorry about Brian’s extra issues: you would think the FXTAS would be enough, but it never is. It is just so difficult. Keep in touch! Sending you hugs, Terri.

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