The H-Word (or why I haven't told the whole world my grandma's on hospice)

The H-Word (or Why I Haven’t told the Whole World my grandma’s on Hospice)

Hospice.

The utterance of “hospice” typically unleashes a wave of alarms that pulses through a family’s social network at the speed of sound. 

Being one that works hard to avoid knee-jerk reactions and values privacy,  I have held off on informing everyone that my grandma is now on hospice.

Until now.

That’s because the more I’ve become entrenched in this caregiving journey, I have come to realize that the vast majority of people who are familiar with this word mistakenly associate it with providing comfort care to a person who is in their final days and hours. 

Yes, it’s true that society has the who, what, when, where, and how of hospice all f*#)ed up.

I’m here to set the record straight on what hospice is and what you can expect. 

Who:

Hospice is not just for the patient. Hospice is for the entire network of people that is supporting the patient. That includes not only their close family members and loved ones that are caring for them, but also any paid caregivers. Yes, hospice provides comfort and support to a person who is experiencing a terminal illness or close to the end of life. Hospice also provides relief, counseling, and help with navigating this common rite of passage to those who are close to that person. 

Where & What: 

Repeat after me: Hospice is not a place.

Okay, hospice is not necessarily a place, although there are hospice homes that people may choose if it is appropriate for their situation.

Hospice is a *service* comes to you wherever you are living. If your loved one is in their own home, hospice goes there. If your loved one is in a facility, it enhances the care they already receive. 

Hospice is a service and a philosophy. The philosophy of hospice is providing comfort and making the transition to the next chapter of life easier for everyone involved in a care team.

Hospice is like a hug at the beginning of the end, saying, “We are here for you.”

The hospice we know as a service provides wrap-around support to patients and their families. This includes a care team that offers support with personal care, therapies and treatments, monitoring your loved one’s condition, securing and delivering equipment and supplies, and counseling and emotional support to wade through the grief.

The hospice care team can include:

  • A nurse or nurse case manager
  • A bath aide
  • A social worker
  • A chaplain

Hospice care is covered by Medicare and Medicaid. 
(Learn the specifics straight from the horses mouth.
Medicare & Hospice https://www.medicare.gov/coverage/hospice-care 
Medicaid & Hospice https://www.medicaid.gov/medicaid/benefits/hospice-benefits/index.html

When you sign up for hospice, you accept palliative (that is, comfort) care and waive coverage on treatments aimed at curing illness and prolonging life.

Perhaps the most important thing you should know about hospice is that calling in hospice does not mean you are waving the white flag. 

Calling in hospice is smart. 

It means you realize it’s quality over quantity.

It means you know you can’t do it alone (nobody can) and you want to help your loved one be as comfortable as possible as they experience illness and end of life. 

When: 

Hospice is normally called in when a person is expected to have six months or less to live. Just because you found out that hospice may be appropriate or you have begun hospice, it doesn’t mean your loved one will die this week, this month, or even this year.

People sometimes get better and then don’t need hospice. They may hop on and off hospice for many years. 

Nobody has a crystal ball that can tell you when the right time for hospice is. The best thing you can do is learn as much as you can about it, so when you have even the slightest inkling that you might be ready for it, you can make the call.

How: 

You or your loved one can initiate hospice yourselves. Your doctor has to sign off on it, but your hospice provider can normally help with all of that. You can find a hospice provider by searching on the web or in the phone book, and if your loved one is in the hospital, the social worker can help you explore the providers in your area

I have found asking your friends to be the most helpful approach. Chances are, you know a few people who have been through this before. (And it just might work out that you end up finding someone who can help guide and support you through the emotions and challenges that this season of life can bring.) 

First, your loved one is admitted. If this happens following a hospital discharge, they normally meet you within just a few hours of you being home.

Once you’ve been admitted, then you meet your care team. You might meet them one-by-one, or in pairs. Over the course of the first week, you will have met them all. The first time each of them visit, they will ask you a bunch of questions, take a look around your environment, and get to know your loved one, their condition, and their care needs. 

Once all of the logistics are out of the way, they begin visiting more regularly, normally 2-3 times a week. They will give you a number to call and call it the “new 9-1-1.” They will explain to you that you can call that number if you need anything at all.

If you only take one thing away from this post, store this one away in your memory banks: Hospice does not normally provide around the clock care off the bat.

Don’t assume that because a family has gone on hospice, they have the help they need.

5 Easy Ways to Help Family Caregivers who are Dealing with a Loved One on Hospice

This is the most important time to be helping a family through this experience. Don’t wait until the very end, when we typically start to feel like we are being smothered by all the people who want to help out, stop by, or say goodbye. 

As a person has significant declines and/or gets closer to death, hospice becomes more involved. When a person goes “on watch,” that is, death becomes imminent, hospice is usually on the scene 24/7 to provide support and help with care in the final hours. 

So, there you have it. That is hospice in a nutshell. 

My grandma is on hospice. 

Stay tuned.

2 thoughts on “The H-Word (or Why I Haven’t told the Whole World my grandma’s on Hospice)

  1. Rachel, my Highest Thoughts to you and your grandma, and for the best hospice experience. Yet again, you nailed it with this hospice article. Anyone would hesitate to utter hospice given how people typically react. Well, set the record straight you did. My mom was on at-home hospice care three times starting in 2013 and pretty much has a standing invitation to return. The first time was the hardest for me emotionally, and it also provided the most support coming at a point of major health decline. Thereafter, we benefited from hospice when the services and stringencies balanced favorably, and it’s been reassuring to know hospice is available. A compassionate hospice volunteer still calls to check in with us every few weeks. I offer moral support by thought, by phone or text if you like, and I’ll check in with you. ~Rea

    1. I can’t love this enough, my friend!!! This is definitely not my first experience with hospice, so I have much more realistic expectations this time around. It is really inspiring me. Hospice is so wonderful. Why can’t we have hospice from the getgo?????

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