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  • Writer's pictureBarbara Huelat

Where to Start? Navigating Dementia Caregiving

It's 2:30 in the morning, and I'm wide awake, staring at the ceiling. The past week has been an absolute rollercoaster. My sweet husband of 30 years lies beside me, yet his recent antics have left me bewildered. Silverware falling out of his pockets, sticks thrown at neighbors, and unauthorized midnight drives—it's been one hellish week. As a caregiver for my husband with dementia, the struggle is real, and it's stealing away the life we once knew.

I hate being a dementia caregiver. There, I said it. The weight it has placed on our lives, our health, and the things we once loved doing together are overwhelming. Bills are piling up, my job demands attention, and everything feels uncertain. But here's the thing—I'm stuck with it, and he is my beloved. Friends advise me to take care of myself, but what does that even mean in the midst of overwhelming fatigue, disruptive behaviors, and confusion?

Flashback to years ago—the dawn of my caregiving journey. If you're asking yourself where to start, let me share my story. Start with a care plan, not just any plan, but one you can live with. I sought help from my doctor, therapist, and a social worker. They became my compass in this uncharted territory. I started a notebook, and let me tell you, it became one of the most valuable things I ever did. It wasn't just a notebook; it was my lifeline, growing with resources, suggestions, and activities tailored to my husband's needs.

Building a support team was a game-changer. My doctor told me I needed seven people to care for my husband 24/7. Where on earth would I find them? Little did I know, I had more than seven—family, friends, and even neighbors. I remember asking my neighbor to stay for just an hour, and she ended up staying four, watching TV with him while I made dinner. It was a small victory, but victories matter. Documenting their contributions, contacts, and funny stories in my notebook created a sense of community.

Discovering interventions that worked for us transformed the difficulties into something more manageable. Identifying triggers for disruptive behaviors led me to slow down with challenging tasks, like bathing, to keep him calm. I created rummage boxes filled with old photos and camera gear that brought him endless enjoyment. These were the notes in my notebook, the documented journey of trial and error.

As the difficulties didn't magically disappear, they became more bearable. Friends not only offered suggestions but also volunteered to help. I started experiencing much-needed respite and the joy of a supportive team. Joe, my husband, became happier, and I, too, found moments of happiness.

Looking back on my caregiving days for Joe, I see the growth—from hating it to finding joy in the most challenging tasks. So, to anyone going through this, my advice is simple: create a plan, build a team, document your successes, and share interventions that bring joy. Hang in there, and remember, in the midst of caregiving chaos, there's room for shared smiles and personal victories.

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