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8 Things That Happen to You During a Hospice Care Journey

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1. You will convince yourself that hospice care isn’t all about dying. 

Despite anything you’ve ever heard or experienced about hospice care, you will think that your loved one is going to be the exception. They won’t need visits three times a week or sitters to come for you to go to the grocery store. The heavy medication that has been explained to you and that you’ve signed for and locked up on a high closet shelf will be there to collect dust this time next year because they might pull out of this and not even need hospice anymore.

2. You will second guess calling in hospice in the first place. 

While your loved one is still mobile and seemingly doing OK, you will second guess the oxygen you’ve brought in or the need to even stay in the program. At some point, you will even consider making the call to cancel so you don’t have to make sure you are home to see the nurse or so you can visit the doctor on your own. (Don’t do this.)

3. You will have a sinking feeling the moment you realize you really need hospice for your loved one.

Perhaps it is after intense pain hits in the middle of the night or a new wound appears or your loved one falls. Whatever the case, you will have a bittersweet moment where you are thankful that there is always someone on call to help you 24-7 without an ER visit, but also a sinking feeling that the end may be closer than you’d like to think.

4. At some point on your hospice journey, you will find the hospice nurses have become part of your family and are there to care for you as much as your loved one.

Maybe it’s on a day when you feel particularly down or a day you just want to scream. Maybe it is the day your loved one slips into eternity and they are the shoulder you cry on or maybe it is just a voice on the other end of the phone when your world is falling apart. Whatever the case, these caring well-trained ladies and gentlemen that come into your home when you are at your lowest are often the very ones who hold you up.

5. At some point you will make a call like you’ve never had to make and you will use those medications you thought would only collect dust. 

Yes, at some point along the journey even the strongest of narcotics aren’t going to be enough and you find yourself calling the number you’ve been given and handling medication that makes your hands tremble. You’ll keep precise records of doses and times that come closer and closer together and you’ll shake your head in disbelief that this is really happening, but it will.

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6. You will find yourself surprised at something. 

Surprised perhaps at how calm you are in the midst of the storm.  Surprised that your loved one has seemingly rebounded only to fall into a coma and slip away. Surprised to find that someone actively dying can have a high fever instead of cooling off as you’d expect. Whatever the case you will find yourself surprised at something; a symptom, a circumstance, a reaction, just something.

7. You will be thankful for hospice when it is your loved one’s time to go. 

Thankful for their knowledge, compassion, attention to detail, access to health resources and much more. Whether you are in hospice for two days or two years, the program will never mean more to you than in those long final hours when you are grasping for what to do and then again when difficult arrangements have to be made.

8. You will find your relationship with the hospice program lasts long after your loved one is gone.

You will receive cards, information on grief support, invitations to attend a memorial service, etc. all after your loved one has passed away. Though they serve so many people each day, they remember those who are grieving. They take time to reach out and even to thank you for caring for your loved one at the end of life.

My experience with hospice care for my grandmother was brief; 36 days in fact. Yet, in that time, my family and I went through all eight of these things and so much more. There were ups and downs and it was such a heartbreaking season in my life, but a blessing all the same. I don’t know how I would’ve traveled her journey to the end of her life without hospice care. It gave me the ability to give my grandmother a final gift: a peaceful passing in our home surrounded by family instead of a cold hospital room perhaps even alone. That is something you just can’t put a price on.

Getty image via galitskaya

Originally published: July 16, 2020
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