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“We Plan, Mom’s Dementia Laughs”

–English translation of the Yiddish proverb, adapted just for us 

My day-to-day caregiving plan generally consists of only a few priorities. Stay positive. Actively listen to Mom. And stay positive. I focus on these basics and fill in the blanks based on what a given day calls for.  I’ve found this works best for me, and more importantly, for Mom. 

Mom’s Dementia Was Laughing

The problem recently was that my plan wasn’t working. I was beaten down by Mom’s dementia. Little tasks seemed like climbing Everest. I didn’t have the capacity I normally do to listen (really listen) to Mom. I felt emotionally drained and physically defeated. Mom’s dementia was laughing at me.

I’m still not sure why I was feeling that way. For now, I’ve settled on thinking of it as a brief spell of caregiver burnout. Understanding what the trigger was would be helpful but more important to me was recognizing how I was feeling, which in turn set me on a path to try and do something about it. Once I recognized it, I took some personal inventory.

What kind of sleep was I getting?

Was I exercising?

Was I feeling guilty about something?  

I talked with her doctors and community about their observations.

I figured out what people could help with and asked for it.

Mom’s dementia was still laughing at me because my personal inventory wasn’t any help. I didn’t feel any better. I was still drained and still defeated.

So I ramped up my go-to moves for snapping myself out of a funk. More time with the kids, more exercise, and more outdoor time. Yet I was still coming up empty. Feeling frustrated, I went back in time to the beginning of Mom’s adventure with dementia.  

Thinking along the lines of things are never as bad as they seem, my intent was to force myself into thinking about the positives. The result was unexpected and sweet!  Without knowing it, I was painting a picture of what I love most about supporting Mom on her dementia adventure.

As I continued, I began jotting my thoughts down. I now had a list of what was most fulfilling to me about caring for Mom. And the whole experience– thinking, reading and writing it– left me feeling lighter. Refreshed. Renewed.

The top of the list went something like this.  

Perspective

Seeing the sheer and unrelenting cruelty of the disease, it’s impact on Mom day-to-day, and the way she chooses to fight it in pursuit of living her best life, gives me perspective.

When I stop and think about it, suddenly whatever’s weighing on me at work, at home, or in my caregiving role seems trivial. If I’m nervous, scared, or angry about something, thinking about what Mom is faced with (and how she handles it) snaps me out of it real quick.

This evolved perspective has given me a more compassionate and empathetic view of the world. I’m a better person for having it.

Repaying a Debt

I owe everything to Mom. She brought me into this world and has given me more than I can ever repay. Before Mom’s dementia, in some ways I viewed raising my own children with as much love and devotion as she showed me, as one way to repay a little of the debt I owe Mom. And honor her, too.  I still feel that way, but now I have another way to repay.

My role in Mom’s journey now is an opportunity for me to repay a little more of what I owe her. I know I won’t have the debt paid in full, but the feeling of fulfillment it gives me is unmistakable.

Bond

Four years ago I wouldn’t have thought the bond Mom and I share could have become any deeper or more solid. I’m an only child and she’s a kind and loving single parent. How can it not be as strong as it gets? But I would have been incorrect.

Our present dynamic, where Mom relies on me for everything, has evolved our relationship in previously unimaginable ways. Some of those ways are really sad. But lots are beautiful.

As dementia has tightened its grip on Mom, I’ve had a window into her soul that I don’t think I would have had if it weren’t for us walking this dementia path together. I wish we weren’t on the trip to begin with but am thankful for the infinitely deeper bond I share with Mom because of it.  I’m (more than) fulfilled by the thought that I’ll feel it until I take my last breath, whenever that may be.

We’ll continue to make plans. Mom’s dementia will continue to laugh. And I’ve pinned my list to the wall above my desk just in case, because it’s another tool I can use to stifle the laughter. And support Mom with all the vigor I’ve got.

_________________________

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