Hospice – My Family’s Experience

Did you know November is National Hospice and Palliative Care Month? Most people don’t and most people don’t know the difference between the two either, which is too bad for a lot of reasons. When my mother was dying from metastatic breast cancer in 2008, I didn’t fully understand the differences between hospice care and palliative care either. Hospice care and palliative care are not the same, though of course, they are intertwined and do sometimes overlap with one another. Read more about the differences here.

When my dad became seriously ill this past summer and it became apparent he was not going to be returning to the assisted living facility he had only recently moved into, but could also no longer stay in the hospital, his palliative care team confirmed what we already knew was coming, my dad was entering the final phase of EOL care. It was time to make decisions about hospice care. And btw, this was openly discussed at my dad’s bedside. There were no secrets. Dying patients (and all patients) deserve the truth. Always.

Shortly after that confirmation, the same day in fact, when I re-entered my dad’s hospital room after leaving for a bit, the cart had appeared outside our doorway.

What cart?

The hospice cart.

At the hospital my dad was a patient in anyway, only hospice patients’ families get carts delivered to their hospital rooms – carts with coffee, water, cookies, fruit and other miscellaneous snacks. A couple times I noticed people walking by and reaching out to grab a cookie and then the realization would hit. You can’t take goodies off some family’s hospice cart. That’s not good hospital visiting etiquette.

I now understand hospice vs. palliative care better. I am grateful both exist. I am grateful for the wonderful hospice care my family received. Yes, the care is for the entire family.

What impressed me most about the hospice care team assigned to us was the respect shown at all times for my dad’s wishes, comfort and dignity. The entire team we dealt with was top-notch, highly professional, wonderfully trained and extremely compassionate.

My dad received hospice care in a rehab center, and no, the irony of that didn’t escape me. Rehab was not gonna be happening for him. We were fortunate to have a private room. I can’t imagine it any other way. EOL is not the time for a roommate, unless of course, you’re the sort of hospice patient who would love that idea.

My dad moved into his hospice room on a hot, steamy Monday in mid-July. He lasted there less than two weeks. But for those two weeks, we made that space as homey as possible, lugged in his 52″ TV (so he could keep watching his beloved Twins baseball team), stocked the cupboards with snacks (for us), rearranged the furnishings (probably annoying some of the staff), put up a bird feeder, had a lift-chair delivered (best investment ever), brought in the family pets (one at a time of course), delivered to his beside French fries (one of his favorite foods) whenever he asked for them, and ordered pizza (another of his favs) numerous times. Mostly, we just sat with him knowing we were witnessing one of life’s greatest transitions.

It was an honor and a privilege to be part of it.

One of the best parts about my family’s hospice experience was the We Honor Vets ceremony presented for us. The day after our move-in, our hospice team had the ceremony organized and ready to go. Hospice workers understand time and its limitations. What a great program this is.

Like so many others, my dad belonged to that “greatest generation”. The World War II veterans one. The more modest one. He didn’t like to talk about his military experience and didn’t unless we pressed him to. He didn’t like to talk about himself, period.

Our hospice team made him feel honored and special that day. He beamed (with modesty, of course) as they gifted him with a Navy blanket and a framed certificate honoring his military service. Some touching words about his service to his country were also shared. That day our hospice team delivered the kind of care that had nothing to do with medicine, but everything to do with respect, honor and dignity.

Even after my dad’s death, gestures of kindness kept coming via our hospice team, little things that meant a lot. I can’t speak highly enough of  my family’s experience with hospice care.

So if your loved one needs hospice care some day, or if you do, don’t hesitate to ask for it. Seek it out.

You won’t be sorry you did.

And one more thing, take pictures of this time – if it’s okay with your loved one, of course. You’ll never be sorry you did that either. The memories are treasures and so are the photos.

Has a loved one of yours received hospice care?

Has your loved one, or have you, received palliative care?

Do you know the differences between palliative care and hospice care?

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