What is dementia? To me, dementia is sh#%. It doesn’t matter which part of the umbrella–Alzheimer’s, Lewy Body, Vascular, Frontotemporal or some other form we haven’t even heard of yet–you’re standing under. It is sh#%. No wonder there’s a blog out there with the tagline punching dementia in the face one day at a time.
All forms of dementia are indiscriminately cruel in their own unique ways–to the people living with dementia (PLWD) and their loved ones– and it deserves to be punched in the face. Lickety Glitz, the author of Stumped Town Dementia and creator of the aforementioned tagline, is onto something.
If caregiving blogs are your thing, I highly recommend checking out Stumped Town. It’s real and relatable. You’ll laugh some, you’ll cry some, but if you’re caring for a loved one with dementia, you’ll feel identified with.
We all should be doing our best to punch dementia in the face every single day. By helping the PLWD that we love live their best life (whatever that may mean to a specific person) in spite of it all.
The onset and diagnosis of Mom’s Alzheimer’s and Steve’s Lewy Body Dementia have been 100% life changing. First and foremost for Mom and for Steve. But for us too.
There’s more stress, guilt, tears, fear, frustration, and plans put on hold. No doubt about it. And for a long time, I let myself be paralyzed by it. Stuck in a never ending wait for the next shoe to drop, letting life pass me by while I was at it.
Going through the motions of kids’ activities, because I’m waiting for the next call about Mom. Or mailing it in at work because you can’t focus on anything other than the next batch of paperwork that needs doing for Mom. Even missing a Mom smile or laugh when she’s standing right in front of me because I’m so wrapped up in my own head about what needs to be done next.
That might be a way to get through life– caregiver or not–but it’s not living it. It’s taken me a couple of years to realize but I see that now.
So What is dementia?
It’s a loaded question and if you’re looking for a clinical answer, I’m afraid you’re in the wrong place. The question at hand here is what is dementia to me as a caregiver?
What is dementia to me? It’s part of our life. Nothing more, nothing less.Part of the story but not the story.
Granted, it’s a big part. But it’s not everything. It can’t be. Mom and Steve don’t let their respective conditions define them. And they don’t want their care defining us. So how could we go on letting it?
What’s That Mean?
It means that we don’t deny the stress or fear or anger or sadness. We acknowledge the feelings, make sure we’re not bottling them up, and let them run their course. But we don’t wallow in them either. And we damn sure don’t sit around waiting for the next sad or angry or stressful shoe to drop.
The shoe is going to drop regardless and we’ll deal with it when it does. But why should we sit around and wait for it? That doesn’t do Mom or Steve or us any good. It wastes time.
“Worrying is like sitting in a rocking chair. It gives you something to do but doesn’t get you anywhere.”Author Unknown
I don’t recall exactly when I had my dementia rocking chair moment, but I’m glad I did. Instead of my paralysis by what might be today or tomorrow or next week or next month, we search for smiles and cherish laughter. They are the measuring sticks that tell us how we’re doing and serve as the fuel that keeps us going.
With smiles and laughter as our measuring sticks, I know days like yesterday were good days.
Spending a couple of hours talking with Steve about everything and nothing, and seeing him smile at my commentary of the U.S. Open and laugh and counter my stupid jokes–was a win. Seeing him partake in a Sunday night game of charades with his grandchildren was a double-win.
Just like my evening conversation with Mom was a win. Hearing about the lunch conversation she had with a new friend, the walk she went on, and the movie she watched left me smiling. Because she was. I could feel it through the phone.
Not too long ago I would have been reflective that I heard no ‘Happy Father’s Day’ from her or that she forgot this or that. Not anymore.
Her smiles and laughter, fleeting as they may be, are more than enough. These little moments have big impact.
So what is dementia (to me?)
Dementia is sh#%. There’s no sugar coating it. But it is life– full of ups and downs and twists and turns like it always has been. Just in different proportions now.
And Eleanor Roosevelt was right. It is what we make it.
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