The Hope Thief – It Wasn’t What I Thought it Would Be

When dealing with a progressive, life-long condition, especially if you’re “close” to the situation (like a caregiver, parent, spouse, or child), sometimes you attribute the loss of hope to the actual disease itself. Over the past two years, I’ve realized that for us, the hope thief is actually the loss of functionality.

My darling husband is the bravest and most graceful human to ever walk this earth. He has handled his diagnosis – and the subsequent wins, losses, opportunities, and challenges – in a way that I never could.

He rarely complains, he is usually agreeable to trying new and different ways to manage the disease and the quality of life issues, and even when he was hospitalized for what seemed like an eternity last year, his goal was to get as well as he could so that he could safely come home.

However – there’s always a caveat when we’re dealing with emotions – the small (and large) losses over the years have done more to harm the belief in better times than anything else.

“Losses” – I know what you’re thinking, “what does she mean?”

The slow (or fast) progression from being able to do something in the way you’ve always done it, to the necessity of having to do it in a more accommodating way – or the need to have someone else do it for you.

For many caregivers, the first “major” loss is the inability for our loved ones to drive. And the loss in the ability to drive is actually the culmination of many little losses before it – a decrease in visual acuity, a reduction in cognitive capacity, a notable drop in energy levels, etc.

There are other losses that are common to the loved ones caregivers help – loss of employment, loss of mobility, loss…loss…loss. Sometimes it feels never-ending – and maybe because the losses are never-ending when a chronic, progressive condition is involved.

When these life-changing moments happen, it can feel like the air has been sucked out of the room, taking with it the hope you were clinging to.

How do you get up and move on after a life-changing loss?

I don’t presume to know how all caregivers move on. For me, grieving, support, and a change of perspective helps.

Grieving gives me time to process what has happened.

Support reminds me that life continues forward, even while I take a moment to process the loss.

Changing my perspective. Some people like to call this distraction therapy. Focusing on what we do have, instead of wallowing in the hopelessness of a situation, has truly helped us center our hearts and minds on forging a path ahead that none of us expected to be on, but are truly grateful to be on, together.

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Wife, mother, writer, and caregiver. If you're here for support and caregiving life hacks, you've come to the right place.

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