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End-of-Life Care: What to Do When Hospice Isn’t Enough (U.S. version)

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April 5, 2013

At a difficult time, when her father was diagnosed with less than six months to live, Beth ran into a frustrating predicament:

Since Mom died, Sissy and I make regular trips to visit Dad. Lately, his health has been declining and now he needs hospice care, but he really wants to stay in the home he and mom shared. We want to honor Dad’s wishes, but hospice won’t come unless Dad has a full-time caregiver. We live so far away, we’ve got our own kids to take care of, and neither one of us can afford to give up our jobs.

The Limits of Hospice Care
You may be surprised to learn that some hospice programs — about 12 percent nationwide, according to a survey published in the December 2012 issue of Health Affairs — refuse to accept patients who don’t have a full-time caregiver at home. If a hospice provider denies a patient, it’s usually because the provider believes the environment could be unsafe for the patient without an around-the-clock caregiver.

Both the American Cancer Society and the National Caregivers Library recommend that you ask hospice providers if they require a primary caregiver before choosing a service.

If the service does require a caregiver’s presence 24/7, there are options for you to ensure your loved one receives the right care while giving you the flexibility to attend to your own needs and responsibilities.

How In-Home Care Can Help
The good news is that you don’t necessarily have to be the designated round-the-clock caregiver. Non-medical in-home care providers, such as the Home Instead Senior Care® network, can supplement the care given by hospice or palliative care teams by providing:

  • Emotional support,
  • Companionship,
  • Housekeeping,
  • Personal care*,
  • Assistance with day-to-day activities, and
  • Vital respite for you and other family members.
    *Please check your local office as not all Home Instead Senior Care locations offer personal care services. 

Professional in-home caregivers compliment the care hospice provides services up to 24/7 for your loved one when you can’t be there. Caregivers employed by a home care service can work closely with the hospice team to ensure your loved one spends his or her final days with dignity and in comfort. Non-medical in-home care services can be provided in the home or in an assisted living, extended care, hospital or hospice facility.

Practice self-care
Whether you opt for hospice care at home or in a care facility, if you are the primary family caregiver, the Hospice Foundation of America says it’s important for you to practice self-care.  Maintaining a healthy diet, getting enough rest, and exercising regularly can:

  • Give a sense of well-being,
  • Offer a renewed sense of control,
  • Contribute to your overall health, and
  • Help you provide better care.

The Hospice Foundation also recommends giving yourself respite by finding others who can share in the caregiving duties. With the right support system, you can spend critical time with your loved one without giving up your other responsibilities.

Getting In-Home Care Support
If you’d like information about how Home Instead CAREGiversSM can work with your hospice team, please visit www.HomeInstead.com or call the Home Instead Senior Care Support LineSM at 800-640-3914 to locate an office near you.

Choosing a Hospice Provider
Start your search for a hospice agency by asking your loved one’s physician or a geriatric care manager for recommendations. You can also call the National Hospice and Palliative Care Organization Help Line at 800-658-8898.

Download the Hospice Guide

The Truth About Hospice: A Guide for Family Caregivers (PDF 1100k)

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Thoughts and stories from others
  1. June 28, 2016 at 3:33 pm | Posted by Dr. Dawn Davidson

    Hello, I am an active professor of Psychology at The University of Phoenix in Colorado Springs, CO. I teach senior level undergraduate psychology classes. I was the caregiver to my mother during her fight with Cancer, and during the time she was passing. I was responsible for all of the care-giving duties and preparations that needed to be done during that time. She entered hospice care at the very end of her journey and I educated myself on how to manage that transition for both of us. I would love to be of help to others who are caring for a dying loved one. The website address for my book, Exit Strategy, is http://exit-strategybook.com/ if you would like to check it out.

    Reply

  2. April 2, 2015 at 10:59 am | Posted by Ashley Reed

    My mother needs to get hospice care, but she doesn't want to accept that she is sick. I want to make sure she is in a place that will take care of her, and make her last days bearable. It's been so hard on all of us, we just want her to be done with the pain already. http://www.marletteregionalhospital.org/hospice/

    Reply

  3. April 23, 2013 at 1:57 pm | Posted by judy moore

    I am a licensed adult foster care provider and also a LPN. I am able to provide for up to 5 residents in my home. I mostly provide for the elderly, who often progress into hospice care towards the end of their life. I have provided for 78 residents, 28 of these residents have either progressed into hospice or came to my home for the hospice care.. This is also another alternative to the hospital setting, nursing home or the in home care that is avaliable. I work with the direction and interaction of Mayo Hospice and or the other Hospice services in our area. If i can be of use or a reference for you please feel free to contact me. Moore Elderly Care.com (web page) or jlynnemoore @hotmail.com. Thanky you Judy Moore

    Reply

  4. April 23, 2013 at 10:05 am | Posted by jackie russell

    My mom was at home three weeks before she passed and the 24 hour hospice care was not presented as an option so me and my siblings who all work had to take turns to care for all my mother's needs. My parents couldn't afford to pay for care. It would have been nice to have some skilled care for her. I know she didn't want her kids to have to care for her in that way. It mainly rested on the four daughters because of the nature of the personal care she needed. I would imagine this is something fairly common for most families. There is no free lunch!

    Reply

  5. April 13, 2013 at 6:50 pm | Posted by Lawrence Conrad

    My wife went in the hospital on 12-23-12 and in ICU till the newyear then she went to Hospice. after a week and half she came home to be with her family, and on March 22 2013 she past on to be with GOD. the Hospice that came to the house were SUPER GREAT it was the orange team that took care of her 7 days a week.and in my book HOSPICE IS # 1 IN MY BOOK Thank you HOSPICE.

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  6. April 10, 2013 at 8:53 pm | Posted by James Conley

    Thank goodness for hospice care. They were there for us (family) in every possible way from the referral to the very end of dad's life. They supported us emotionally in such a loving and kind respectable manor and made dad so comfortable, in fact he looked forward to their visits. I was so moved by the whole experience that I went and worked as a hospice homecare CNA for close to two years. What a blessing it was to give back. If you choose hospice care in any capacity you will not be disappointed. I am now working for the local, " Home Instead ", agency and found a whole new blessed journey in giving back to our community. It's a blessing to receive in time of need but even more of a blessing to give back.

    Reply

  7. April 10, 2013 at 8:45 pm | Posted by Sherry Bailey

    I am a in home care giver for a wonderful, sweet lady who is now also on Hospice care. I would like to keep up with all information I can receive to keep her as emotionally and physically well as possible in her final days! I cared for both of my parents until their deaths and I know how important this can be for the people who need it. Thanks for your help! Sherry Bailey (Cypress Homecare, Az.)

    Reply

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