For whom the pain tolls


It amazes me what we (I) let our (my) LWA (loved one with Alzheimer’s) get away with in the name of the disease. Not only are we chauffer, cleaner and go-fer; we’re also expected to morph into the occasional doormat-ter.

I (thought) I learned how to let comments roll off my back like water off the proverbially duck as advised by all the doctors and everything I’ve read but after the tongue-lashing Miss Cathy unleashed with such fury a few months ago I was left feeling emotionally eviscerated.

The details of which I’m hoping my best to forget and have repeated enough so suffice to say my entire purpose for being came into question. Unfortunately, it’s something that I don’t think I’ll ever forget (and I’m someone who never says never-even though I just said “ever”).

After it happened I was confused and shell-shocked. We’ve had arguments and disagreements in the past but her reaction to the situation was so much bigger than the size of the incident and it was just too much.

I don’t know (which adds to the confusion) if it’s the Alzheimer’s, old age, fear or a combination of it all but emotional boundaries were crossed and her filter (which at best was barely there) was completely gone so she said things I never imagined I’d hear, the venom viscous with hate.

The only thing I could think to do was to get in my car and drive. I stopped at a park nearby and sat there trying to take in what had just happened. I got on my phone and first turned to my brother, who listened and was some comfort but could offer little else.

It was my friends, Brian and William that really came through for me. They gave me the words that turned into actions that helped me go back (which in and of itself was pretty powerful because every fiber in my being was screaming for me to just drive; where I didn’t know-anywhere but back there).

But, what they said (each in own way) has kept me and keeps me here/there to this day.
Brian reminded me that I’m not alone and that I’m not “stuck”, I can always get professional help for her and leave. William told me, “much will be said” (and he should know-he has challenges of his own caring for both his parents. He shared some of the things that have been said to him and he’s still there, everyday caring for them both.) He also told me to just get a thicker skin, “apologize to her” (even if I didn’t mean it or understand why it was important) and to just……“go on”.

So, I took their advice and went back.

Oh, don’t worry; Miss Cathy is fine (she hasn’t been stuffed and propped up in a rocker somewhere waiting to be discovered in the last reel like Norman Bates’ mother) in fact, she’s better than ever actually. She unleashed, I “apologized” and now she seems all the better for having gotten (whatever) off her chest.

I haven’t shirked my obligations either. I go through the motions day to day but something has shifted in me and when my day is done (more often than not) I find that I question my role as caregiver and my continued commitment to stay here. I have tried my best to show up for my duties (both as son and caregiver) but my heart (what’s left of it) isn’t into it anymore.

It’s humbling but I’m almost ready to concede that the Alz wins.

I confess I thought I was made of stronger stuff; having survived heartbreak, the death of friends to AIDs, domestic abuse, bankruptcy, alcoholism and career suicide…to name a few) but I guess I’ve met my match.

I was thinking I might have some more fight left in me (or at least a few more ounces of blood to give) but that changed the other day when it happened again. While it wasn’t the bloodletting that occurred before, once again Miss Cathy vented her anger. But this time I wasn’t taken totally of guard, the surface was sliced, old wounds were re-opened and there was a little pain, an emotional paper-cut if you will.

Unfortunately, the people closest to us can hurt us the most because while they love us for our strengths they also know our weaknesses and have to power to turn that against us. Alzheimer’s has a way of releasing the person suffering with the disease from the responsibility of keeping that trust.

Sometimes, you can see that the LWA knows they’ve over-stepped and are remorseful and other times they seem to know not the destruction they’ve wrecked and the emotional damage done. They seem just as pained and confused as the person they’ve hurt.

And while it’s forgivable (hopefully) to the one who’s boundaries have been broken, it’s like the bell that once rung cannot be un-wrung and they are left to decide for whom the pain tolls.

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