What is Hospice? Now I Really Know.

What is hospice?

If I were asked this question three months ago, my answer would have been one word.

Scary.

Because until recently, all I knew about hospice was that it was associated with the end of someone’s life. And death has scared me for as long as I can remember.

My first experience with it came with a force so sudden and final when my father passed away that there are days that I still struggle with it thirty years later. He died on a Sunday and still no matter how bright the sun shines or how comfortable I feel, each Sunday comes with a pall. It’s subtle but always there. And has been since 1989.

At the beginning and for what seemed like eternity in the years after Dad’s passing, I was petrified Mom and others close to me would die too. If Mom was running out to the store to pick up milk, I’d grill her on her plans, how long it would take and when she’d be back. When going to bed at night, I demanded my door and hers be left open so I could hear more easily in case something happened. It wasn’t over taking me but it was there–and it was unmistakable.

These days it’s something different. As I approach the age my father was when he passed away, the thought of me leaving Lindsay and the girls, with their whole lives ahead of them, makes me shudder. Who knows, maybe that’s a subconscious reason why I tell them I love them so many times each day?

It is a different brand of fright. Unlike being afraid to fly or scared of heights where one’s fear is acutely tied to a specific act, this is muted in the background. But there. Fear just the same. And all that my pre-caregiving self knew about hospice was that it’s something associated with that.

Now though, I know it’s so much more.

So what is hospice?

The Hospice Foundation of America describes it this way.

  • Medical care to help someone with a terminal illness live as well as possible for as long as possible, increasing quality of life.
  • An interdisciplinary team of professionals who address physical, psychosocial, and spiritual distress focused on both the dying person and their entire family.
  • Care that addresses symptom management, coordination of care, communication and decision making, clarification of goals of care, and quality of life.

All true. Not because I’ve researched it for this piece but because we’re living it. Right now. We’re in the midst of receiving all of these services and they seem heaven sent.

In many ways, hospice has become our quarterback as we’ve entered new and uncharted territory on this journey. When the description says improve quality of life, I’ve seen it by way of Steve’s smile and laughter and very occasional quips. Where it mentions an interdisciplinary team, I picture their faces. Reading how they help with symptom management, coordination of care and communication? I hear their words.

And mercifully in most cases when eligible, these services are covered by the Medicare hospice benefit, Medicaid, Veteran’s benefits or most private health insurance plans.

But there’s more

What hospice does for us is magnificent. Yet how they do it is something more than that. The how is unspoken and intangible, yet felt deeply in our hearts. Their endless empathy and guidance serves as the port we need in this unfamiliar and emotionally world shattering storm.

Knowing what I know now, when I think of hospice I’ll think of Laura’s face. Part hospice nurse, part superhero. Warm but professional with uncanny ability to read the audience and go every extra mile to help. Put simply, she makes us feel safe the way our parents used to when they were able.

When I think of hospice, I’ll think of David as he joyfully plays his keyboard, drawing Steve further out from under Lewy Body’s cloak with each swipe of his keys and smile flashed. I’ll also think of Beth and her violin and her smile and the look on her face when she sees Steve smile at the notes she plays.

Our hospice nurses, aides, social workers and volunteers are kindness and compassion personified. Absolute angels who’ve given us moments that will last forever. A selfless team providing help we didn’t know we needed and that we can only hope repay someday.

So what is hospice?

The best of humanity.

That’s hospice.

Surrounded by Alzheimer’s and Lewy Body Dementia. Founder of Ro & Steve. Working my way through life and dementia caregiving.