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caregiver-burnoutI probably composed a 2,000-word post in my head earlier this evening as I drove home in tears – and now I’m having a hard time putting together a sentence! My eyes are burning, I’m exhausted, nauseous, and I wish I could run off to a deserted island until February.

It was this time last year that really marked the final decline for Mom. We’d hit a low point in September, but then she came back just a bit – enough to give us some hope. That, however, didn’t last long.

Detour Ahead – or Not

Over the past couple of months, I’ve tried so hard not to get weighed down with sad memories and heartache. Now that November is here I think it’s catching up with me. Each day, I find my thoughts wandering to last year at this time, and to be honest, I’m not sure that continuing to push the thoughts away is the right thing to do.

All of the grief experts seem to agree that the only way to heal is to walk through the pain; they say continued attempts at taking detours will fail.  I imagine it’s true; after all, it makes sense, doesn’t it? The more you try not to think about something, the more prevalent the thoughts become.

Strength, Weakness, Life, and Purpose

I want so badly to be that strong, in control, (mostly) put together person that others admire, but damn sometimes it’s hard – hell, sometimes it’s downright impossible. Today, despite my best efforts, a major meltdown ensued.cropped-temp-collage-001.jpg

There are times when I get annoyed with myself for not being “over it” by now, but in thinking about that today I realized something.

Mom was sick for almost ten years and had most assuredly started to decline even earlier. That’s a long time to live with the fear, uncertainty, and stress that come with this disease. It’s years and years of living on edge and constantly walking on eggshells. It’s all consuming…  so, no – 11 months after her passing, it doesn’t all just fade away. I guess I’m still trying to figure out what my life is, post-Alzheimer’s.

Now more than ever, having a purpose is vital to me. The status quo just doesn’t cut it.

A Long Road

Truthfully, I don’t miss Mom any less; in fact, I think I probably miss her more now than ever. It occurred to me that I don’t even remember the last time I was able to sit and have a real conversation with her.

me-mom-xmasFor my entire adult life, she was always the first person I’d call when something great happened – or when something was wrong. Whatever it was, she was there – to celebrate, to console, or to provide words of wisdom.  And then as I approached my late 30’s, she wasn’t there anymore, at least not in that sense – she ceased to be my rock and I gradually became hers… or tried my best to be.

That’s what makes dementia such a unique and particularly cruel disease; you lose them over and over and over again. And oddly, you’re fooled into thinking when the end comes, you’ll be fine because you’ve been grieving for years.

One day you realize that was all a giant fallacy. The new grief – the “final” grief – is fresh and real, and it leaves you raw for a very long time.

A Word on Sympathy

In short – I don’t want any. Sympathy, that is.

One thing I’ve found in the past year or so is that the caregiving community is much larger than I could have ever fathomed. We’re a club of sorts – as I like to say, it’s a club we didn’t necessarily seek out, but here we are.  I write for myself and I share in the hope that someone may read my story and feel a little less alone…

At the end of the day, that’s what it’s all about.