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This is not such a great day

Most days

Most of my days are felted
in a soft, pliable grief.

I mold it to a sturdy understory.
It holds me up.

Some days my grief
is a diminutive,
fat-bellied troll

who

lurks under the bridge,
clawing at my ankles,
assured he can pull me under,
interrupt my travels.

He cannot.

I am bigger.
And I am faster.

On the very best days,
my grandson throws up his arms
in victory
and exclaims
I-did-it!

That soaring dragonfly of Grace
scatters my grief.

She banks off my smile
and flits along to her next watering hole.

. . . . .

Anticipatory grief

Today, anticipatory grief tears me apart. My heart breaks over what’s been lost and what I am still losing. I wrote the poem above on a walk with Ruby, my faithful CorgiPoo. While she sniffed and cavorted, I quietly cried behind my sunglasses, careful to maintain a mask of neutrality on my stricken face. I did not want to run into anyone I knew. I was embarrassed to find myself in public, overwhelmed with feelings that have been private for so long.

Anticipatory grief is not the miasma of unrelenting, clinical depression that can be triaged and resolved with a 10-minute psychiatric check-in and a prescription for Wellbutrin. Anticipatory grief is a sadness borne of truly tragic circumstances. Robert and I have been an integral part of each other’s lives for 40 years. I am right to feel this sadness. To feel differently would be untrue. Eventually, this grief will be replaced with a more final grief that will have its own rhythm and cadence, its own path.

Dementia tricks you

The manifestation of dementia is often so gradual that it can lay waste to what is good before we even know what is bad. I have experienced Robert’s illness in fits and starts. At first, he made poor decisions.  Slowly, he forgot how to cook and stopped helping with household chores. When he couldn’t remember the PIN to his debit card, I had to give him cash for all his transactions.

On most days I mistook Robert’s behavior as apathy, the result of a too early retirement and not enough to do with his days. Some days I was sure he was willfully butting heads with me, trying to punish me for not being kind enough, for being exasperated too often. I thought about divorcing him. Did I have to live like this with someone who didn’t care enough to participate in the life we’d built? I grew restless, resentful, and angry. Every new behavior taunted me and challenged me to admit I’d made a poor choice in a marriage partner.

Is divorce the answer?

Was I an ogre for considering divorce before I knew what was wrong with Robert? I was relieved to learn that some spouses of those with dementia consider divorce before they understand what has overtaken their loved one. For my part, I cultivated the anger only petty resentments can nourish. Some sainted spouses remain patient to the end, but that was not me. I was a joyless spouse in our final days of living together. My job demanded all my energy, and I was shouldering all the burdens of our life together but received very little in return. This was my truth.

Help how?

After a dementia diagnosis, friends and family often offer to help. “Let me know if there is anything I can do!” “Let me know if you need to talk.” But a caregiver cannot easily lay down the burden of dementia. The distance between the offer and the problem is too vast.

“Can you help me hoist him from the floor so I don’t have to call 911?”

“Can you empty my brain and refill it with explicit and detailed memories of when we were happy?” Fond memories have no chance to surface in the fetid pond I find myself slogging through. I still believe this is a personal failing of mine.

Today my grief is a muddy path strewn with pebbles of guilt. I step barefooted, gingerly, on sharp edges, and wince, but the lumps are not enough to make me turn back. I’ve made what I believe are the best possible decisions for both of us and still, on some days, those decisions rush into my mind and clang about in my skull. They ring on every misstep I’ve taken, every decision I’ve second-guessed, every unkind thing I’ve said. I did not see Robert’s fear as his brain slipped away. I moved him from our family home.

I’m trying to put my life back together, but there are many days in which I am held aloft by an understory of grief stippled with motes of guilt. Today is one of those days.

4 thoughts on “This is not such a great day”

  1. Dearest Sharon,
    This entry into your precious story is the most potent for me. It stops me. Tears flow from my tired eyes. You have described so vividly my own journey with my husband. I could not have written it any better. I am amazed and I thank you. THANK YOU,! Love, fear, care, guilt, longing, shame…I can’t make the pieces fit!

  2. Oh Sharon, I wish I could lift the fog on these dark days. I wish I could let you feel what I know to be true- that your part in Robert’s life (all of it) was a blessing to him. I think it’s less about some people being saintly in the role of caretaker and more about not being tested to the degree that you were. I hope that damn sun comes out again soon! Luv ya.

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