The Second R: Hospice Respite*

restI’m not practicing what I’m about to preach on respite* in hospice.

But I have good excuses! (Doesn’t everyone?)

In hospice, a family should consider Medicare’s respite benefit when the patient—when your loved one—has been receiving care for an extended period of time.

Respite is rest. Respite is taking a break from the intensive and extensive support of a beloved family member or friend who is dying. Respite, based on the guidelines of the Medicare hospice benefit, can be for up to five days.

But taking a break is the proverbial easy to say and hard to do.

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Let me give you a trivial personal example of the need we can have for respite.

When I first wrote these words, my wife and I were at Day 17** of post-surgical recovery for our sixty-plus pound golden retriever puppy. She had an arthroscopic procedure for elbow dysplasia. Because of genetic weaknesses, a small percentage of golden retrievers (along with Labradors, Rottweiler, and other “large” breeds) develop flaws. Kynzi, our puppy, had bone fragments in her left front elbow. The vet who did the operation was all good news about the procedure. But then comes eight weeks (56 days!) of recovery. The dog cannot “play, jump, or run,” and should be confined as much as possible in the first weeks.

Kynzi, a few days after surgery . . .

Kynzi, a few days after surgery . . .

56 days of keeping a dog literally and figuratively on a leash!

Every part of our lives is impacted. Our cute and cuddly cats are often kept behind closed doors so Kynzi won’t chase them. Now the cats are grumpy. My wife and I have to communicate constantly about our schedules. Someone always has to be with the dog. We have to keep finding new ways to “entertain” Kynzi so she won’t become bored and destructive.

We need respite!

But who could help? Our dog loves to greet new and old friends. Anyone entering our home would inspire three or four minutes of “happy feet.” Those seconds of excitement could wreck the surgeon’s work. And so we slog on, sleep-deprived and trapped by a relentless obligation.

But we will survive. It’s only a dog. It’s only for two months. And there’s a light at the end of the furry, four-legged tunnel: my puppy and I will be out walking again.

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Do you need respite as you care for a loved one?

No!

Well, maybe?

Yes, you probably do . . . but there really isn’t anyone else who could help.

There is.

Hospice’s Medicare benefit includes a 5-day period respite for families. What does that mean? For five days, your loved one can enter an inpatient hospice home or a skilled nursing facility and continue to receive the essential medical support she or he needs. The chaplain, social worker, volunteer, home health aides, and nurses you’ve gotten to know would likely follow the patient—your loved one—to whatever facility they temporarily go to.

Caring for a dying loved one is a tender act of compassion. The adult child supporting a parent often feels like they are giving back to the one who raised them. The spouse supporting their beloved is literally honoring the ancient vows of “in sickness and in health.”

But people get exhausted.

Do I need to repeat that? Exhausted . . . and that’s on the good days. Often, before entering hospice, there have been months, if not years, of supporting a loved one during treatments, hospital stays, and so much more. Entering into hospice is not the start of care for many, but a continuation of a demanding commitment to the person you love the most.

But it’s not only exhaustion that leads to considering respite.

  • A family reunion is coming up.
  • Your daughter in another city will soon give birth to her first child.
  • Your best friends have invited you to their 40th anniversary celebration.
  • Two of your grandchildren are graduating from college in different part of the state.

The person you are caring for encourages you to go to the reunion-birth-anniversary-graduation, but how can you leave them for other loved ones?

And maybe you can’t or won’t consider leaving.

I get it. With my silly, trivial example, I have a hard time imagining (or—let’s be honest—trusting) that anyone else could “handle” our recovering and irksome puppy. How foolish to think that! But for every rational decision I’ve made, I can match it with an irrational one!

In spite of an opportunity to celebrate a special event, or “merely” to rest from a relentless schedule, many will choose to continue their demanding commitment to a loved one. But please remember the benefit is available. And also remember, when other voices you trust encourage considering a respite . . . maybe you should listen to them.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

*No, the 3 Rs aren’t the olde reading, ‘riting, and ‘rithmatic (ha!), but the hospice-based 3 Rs of Revocation, Respite, and Recertification. I’ve already written some thoughts about Revocation. And also Recertification.

**And this essay was posted on Day 37 of our dog’s recovery . . . yeah, we’re still exhausted and stubborn.

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