How do you break the vicious circle of dementia’s guilt?
We didn’t invite dementia into our lives but it’s here to stay. The wretched disease is an unwanted house guest that refuses to leave. As if its presence wasn’t enough dementia has given our family, and close to 6 million others in the United States, a multitude of unwanted gifts. The biggest of all for us?
A vicious circle.
Right in front of our eyes, dementia has made our lives, well, circular. Joy and fulfillment make occasional appearances but Steve’s life with Lewy Body, Mom’s with Alzheimer’s, and ours caring for them have become undeniably and viciously circular.
All thanks to Alzheimer’s, Mom’s days are largely the same day after day (after day after day after day).
Breakfast > exercise (if she can) > lunch > rest > dinner > bed
Her friends visit and there are slight variations some days, but for the most part it’s the same drill on repeat. An undeserved and unwanted circle.
Life is similarly circular for Steve courtesy of Lewy Body Dementia.
Breakfast > perhaps a game > rest > lunch > rest > another game > dinner > bed
Some days he’ll get outside for a bit or have a visit here or there but for the most part, each day is a carbon copy of the previous one. A dreaded, undeserved and viciously unrelenting circle.
It’s only when I step back that I see (and feel) that dementia has done the same to us. In some ways it’s out of necessity. After all, routine is our friend in caregiving. We’d be lost without it while at the same time it suffocates us. The routine is a blessing and a curse and most definitely circular.
Then there’s the nature of Dementia’s steady march forward with Mom and Steve. While the progression itself is linear (we’re only going in one direction, the only question is at what speed). everything surrounding it has become circular.
With each mile marker in the progression of their respective Alzheimer’s and Lewy Body Dementia, we become slightly more rundown. When the rundown feeling fades into the background and is temporarily replaced by some semblance of stability, it seems to be just in time for us to hit another mile marker on the progression. Another shoe drops. On and on we go, seemingly hopeless to ever break the unforgiving cycle.
The most vicious circle
The most acute and vicious circle of all though is the guilt circle. It’s the most brutal for me because it’s always there and cannot be stopped. A playlist on repeat in my brain.
I should have been more patient with Mom.
Did I give her enough time to respond to my question or did I cut her off?
I should have chosen my words more carefully.
Why did I have to correct Mom?
Should we have gotten a second opinion?
Why does giving Mom a ride feel like such a hassle? How could I think that?
I am doing the best I can as a caregiver. The guilt I feel is unearned. I believe both of those facts in my soul. Yet the guilt comes with me wherever I go, persisting like some unbreakable chain. Sometimes dormant but always there. And as soon as I pay it any attention, there’s no way to un-pay my attention. I’m circling the drain of the guilt circle.
It looks like this
Last night was a perfect example. As I sat with Steve at the dinner table and found myself out of things to talk about, I caught myself feeling sorry for him. As I recognized the thought, an unmistakable wave of guilt rushed in.
Don’t feel sorry for him.
He wouldn’t want you to feel sorry for him.
Sorry for him? No.
As I sat there, silently working through that conversation in my head, in came the next thought. Overarching sadness and fear. His vacant eyes and lack of expression triggered it, but I wasn’t sad or afraid for Steve. I was just sad. And scared. About all of it and for what’s to come. In that moment, I was sad for us. Not Steve. And with that came a fresh round of guilt uglier than the first. Around the circle I go.
You’re sad and afraid for ‘us’? Are you kidding me?
How could you think that and not think about how sad and scared Steve is?
He’s the one living with Lewy.
How must he feel?
When I caught up with my inner dialogue, I felt despicable. The guilt for thinking the thoughts transcended the sadness and fear of the original thought itself. As this dialogue continued, the thoughts became more than thoughts. I could feel it in my chest, I was being physically pinned down by the guilt. I was circling the drain of guilt faster and faster now.
Guilt upon guilt upon guilt upon guilt. My own precious guilt boomerang. A vicious circle indeed.
It rears its head for me multiple times in a given day. I know it’s coming. I know it isn’t justified. Still, I feel powerless to stop it and foolish for even thinking (hoping?) it could be stopped.
So how can I break the vicious circle of dementia’s guilt? I can’t.
But (I think) I can learn to live with it. I have to.
Otherwise, it will consume me.
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