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PSA: Hyper-vigilance Kinda Sucks the Life Out of You

2015.March.31

Caregiving fosters hyper-vigilance, which fosters a normal state of negativity because you’re always thinking out worst-case scenarios. It’s taken me three years to realize this. It’s devastated my once-positive perspective during years that were already hard many times over. It’s cost me friendships. It’s cost me hope. It’s cost me love. I can’t imagine how much it’s hurt the perspective of people who only (or primarily) know me online.

Now that I’m aware of it, I can work on balancing things out, but that doesn’t mean it can’t still get worse. Combine this with ambivalence about Facebook profiles on the longer side of a decade old, and most days, I can’t tell the difference between friends naturally drifting away due to life circumstances, friends who merely flake out or stop using social media, people who have written me off because they think I’m a flake (sorry, buy Maybes are the best I can manage for the vast majority of impersonal event invitations), and people who hate me.

Leap in logic? Sure. Something I can stop or reverse at this point? I doubt it. I’m doing everything I can to take care of myself, up to and including therapy and changing how I define friendship and purpose. Four months ago, I had to put an all-stop on activism because there were too many hard truths coming from the outside world to keep up with the hard truths afoot in my own home. (If you see me post something even remotely activist-y, you should know that I’m hurting myself doing it

I used to post often about what my needs would be as a caregiver so I could keep the feeling that I am a positive, accepted, and respected human being. I didn’t stop posting about those needs because I stopped needing them, I stopped posting because no one was listening. Why? I dunno (see above).

The point is I often feel forgotten, and while my pride probably needed the jolt of reality, this has more than once swung too far and too fast in the other direction. Depression, illness, and exhaustion are common in caregivers (check, check, check). So is early death (uh…).

My caregivee spent most of the last three years doing better than expected, but he is firmly in the middle stages of Alzheimer’s now. There are more appointments to keep, more decisions to make, more aberrations to track, but I still have time to twiddle my thumbs and ponder the perpetual now. Those moments have become rather empty.

I have the minimal support system I need to get things done. We have food, income, housing, stability, and back-up for when one of those things flounders. What I need are gentle reminders that I am still a human being and I am entitled to an at least occasional affirmation of my humanity.

So here’s an updated list of only five things YOU can do to support me (or another caregiver you know):

Say hi (preferably not on Facebook). I have a dozen apps, sites, or other interactions where we can chat, including text and meatspace. Most of them have become specialized for affirmation during my time as a caregiver, but Facebook is weighed down by the 500 friends and years of algorithms that predated my caregiving days (to say nothing of their admission that negative posts get more traffic, so it’s in their best interest to make our days worse).
Connect me to new friends. I don’t really get to meet new people. No coworkers, no classes, no dates or parties… If you think I should meet someone, just connect us. If you know any other caregivers (not necessarily Alzheimer’s, but especially them; not necessarily young, but especially them), connect me.
Stop telling me about Alzheimer’s breakthroughs. The next person who posts a link to an article about an Alzheimer’s breakthrough on my wall is going to get snail-mailed a copy of last week’s local Greensheet; that will do you just as much good as those articles are going to do me/us. Yes, there are exciting discoveries afoot, but they are already too late to do my caregivee any good and that makes them just one more distraction.
Face-time. Come see me! Invite me over! Does anyone just hang out any more? Special props to anyone who lives within a 20 minute drive, wants to drop by because they’re “in the neighborhood”, or is willing to accompany me on one of my numerous errands!
Share your joys with me. Little or big, I don’t care. I missed a half-dozen weddings last year, but the ones that hurt the worst were the ones I wasn’t even invited to. So send me a postcard, post a cute meme, tell me about your new favorite movie. Even if it’s something I wouldn’t appreciate in the way you do, I WOULD appreciate how much it means to you. Celebrating your humanity will help me hold onto mine.

Thank you, sincerely, just for reading this. Any small or large effort would be appreciated, especially in the weeks and months after this post has waned. Hopefully, other caregivers can use this, too, so share it with a caregiver you know and ask them to customize a list of ways you could support them, too. Remember: our society is aging fast. Some estimate that up to 1 in 3 of all Americans alive today will be a caregiver at some point in their lives. I’m just one of the first you know.

*posted without edits or links, because I’m trying to develop a stance of Imperfectionism*

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3 comments

  1. Don’t have anything insightful or anything to say, just wanting to extend hugs and sympathy.

    (and re: “does anyone just hang out anymore”… I’m annoyed at how everything seems to have to be planned out and scheduled in advance these days. I have most loved the friends who would just show up at my house randomly)


  2. Thank you for sharing with us. I enjoyed the experience of learning what a friend is feeling, needing, wanting and experiencing.


  3. This has probably been the clearest, cut and dry, non-whining, interpersonal empowered writing I have seen from you in a very LONG time. I may not always comment and I may not always get through all that you have written, but when it is written like this…short, sweet, to the point, neutrally self-reflective, and imperfect (as you labeled it)…there is not a lot of room for mis-interpretation, pity, or reason for avoidance (due to my own emotional unavailability and inability to be compassionate). You should write like this more often. It reminds me of the old you, before you went to college to ‘learn’ how to write and how to ‘better’ communicate. <3 You



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