Resources for Caregivers and Extended Family

You have surely heard someone say “You have to take care of yourself before you can take care of someone else.” As a caregiver, you know it’s true, but it can be so very hard to do. When someone you care about is sick, you want to be there when they need you. Learning to balance their needs with your own health and emotional needs may be the biggest challenge you will face.

One of the great things about palliative and hospice care is that it really focuses on making sure caregivers and families have the resources they need to cope with their loved one’s illness.

“Just when I had no idea what to do next, the cavalry arrived! KC Hospice & Palliative care came to the door and started solving problems. They took care of mom just as if she was their own family and they always made sure I was doing okay too.” — daughter of a former patient

It may seem intimidating at first when you hear that an entire care team is going to come, but you get to pick and choose what services you want and they work with your schedule. Many of the services we offer are for the family. Even if you don’t live nearby, we’ll make sure you are part of the process.

Every situation is unique, so we’ll tailor services to fit your family. If there are children in the home, our child and teen specialists are available to make sure they have the support they need. If the primary caregiver needs a break, we’ll help match you with a trained volunteer who can help out. If your loved one or family members don’t speak English, we can provide translation assistance.

Here are a few resources that might be helpful to you:

Guide to Hospice Care

An online version of the handbook given to each family at the time of admission is available. CLICK HERE to read.

Guide to Carousel Pediatric Care

An online version of the handbook given to families for our pediatric hospice and pediatric care services at the time of admission is available. CLICK HERE to read. 

Dementia Care patient and caregiver resource guide

We want to ensure you and your family are well supported and informed so symptoms can be managed under our care. The National Partnership for Healthcare and Hospice Innovation (NPHI), along with the Center to Advance Palliative Care (CAPC) and Aliviado Health, has developed a special Dementia Care Program to support the home care of people living with dementia. KCH is a proud member of NPHI.

Safe Passage Series

The Safe Passage series is a collection of information on topics that are most requested. You may view them here, ask your care team to provide them, or call to request them by mail.

Safe Passage – Simple Facts About the Control of Pain 

Safe Passage – Decisions About Artificial Foods and Fluids 

Safe Passage – Restlessness at End of Life 

Safe Passage – When Death Nears: Signs and Symptoms 

Safe Passage – Talking to Children and Teens About Illness or Death 

Safe Passage – Understanding Grief

Online Resources

Questions to ask when choosing a hospice provider – a consumer resource from NAHC and CMA

Anticipatory Grief — Dealing with the emotions of serious illness

Saying Goodbye — Preparing yourself and your family for a final parting

Articles of Interest

Talking to Your Kids About Your Terminal Illness a Guide for Parents by Amanda Menard, LPN 

Caregiving: A Burden So Heavy, Until It’s Gone by Margaret Renkl, August 8, 2015, The New York Times

Hospice: What is it and when is it for you?, July 26, 2015, CNN,

 This is how you feed a dying personSeptember 10, 2015, Huffington Post


Misouri Hospice & Palliative Care Organization — Information and resources about hospice and palliative care in Missouri.

Hallmark Channel video Value of Hospice — Home and Family

GiveForward  — Empower friends and family to send love and financial support to people as they face a medical crisis. Create a page to spread hope and contribute to a loved one’s out-of-pocket medical expenses.

Get Palliative Care  — A site to provide consumers with information about palliative care for people with serious illness.

Center for Practical Bioethics  — A Kansas City based not-for-profit that raises and responds to ethical issues in health care, offering resources for making end-of-life decisions, help for conversations with your loved ones, and forms to download for health care directives and durable power of attorney.

Cancer Action  — A Kansas City not-for-profit dedicated to providing comfort and practical assistance for those living with, through and beyond cancer.

Turning Point  — A center offering comprehensive programmming to address the psychological, social, emotional and physical needs that come with a serious or chronic illness.

Care Pages  — Free personal, private web pages to help family and friends communicate during a serious illness.

Caring Bridge  — Offers protected websites for connecting people when it matters most. Extensive privacy setting.

Mesothelioma — General information helpful to caregivers.