We’ve been there!
This site is created by transplanted patients!
Patients are told they won’t receive a transplant without first securing a caregiver and a recovery plan only to find a dearth of resorces or instructions as to what a caregiver is and does. Resources that are available are mostly put together by paid professionals who have never had a transplant, have no skin in the game, and no understanding of what caregivers and post-transplant patients day-to-day needs really are. As patients we know those needs, we have the experience, and are here to fill in the gaps for you. We welcome all patient feedback and will keep developing this site as updated resources are developed.
Caregiver Resources
by state
(in development)
Click on the arrows (right corner) to expand the map. Click your state’s icon marker to bring up a box with a “details” link to click on to be brought to a boatload of caregiver resources
Questions and Answers
New & Free!
People want to help! Let them. Organize your patient’s support with a Volunteer Care Calendar.
Example here-> https://tinyurl.com/4ryn4jnk
Sign up with LotsaHelpingHands for your person, create a community, tasks, etc, and send out invites. Ez.
DOWNLOADS
Prepare to Care
PDF Guide – AARP
Complete Care Plan
– From idaho.gov
Printable form for adding information about the PERSON RECEIVING CARE.
From Idaho Health Care.gov PRACTICAL TOOLS AND RESOURCES FOR CAREGIVERS
New York State’s CARE Act: A Toolkit for Caregivers
PRINT THIS –WORKBOOK FOR FAMILY CAREGIVERS – Has printable forms that help plan and organize everything from diet, transportation, budgets, power of attorney and other legal stuff, insurance coverage, and lots more. Choose the printer icon, upper right corner.
Caregiving can be a family affair – Holding a Family Meeting.
! IMPORTANT! DID YOU KNOW:
You can get paid as a caregiver for a family member.
SSDI and SSI benefits for people with
Liver Issues – you likely qualify.
Disability benefits? What medical conditions qualify someone for Social Security disability benefits? Liver cancer, Advanced Kidney, Heart, Lung, Liver disease and more – Hello! That means transplant candidates!
Help From Other Sources
Questions about Caregiving?
What is it like to be a transplant caregiver?
Family Caregiver Handbook
A guide for family and other unpaid caregivers – Washington State DSHS
Liver Transplant Educational Series –Part 1 | UW Medicine
Liver Transplant Educational Series –Part 2 | UW Medicine
And LOTS of training videos:
Basics from Caregivers.org
Caregiver College Video Series
Pathways to Effective Communication for Health Care Providers and Caregivers
Home Alone Alliance | Treatment of Skin Tears
Home Alone Alliance | Reducing Sodium
Home Alone Alliance | Pressure Ulcers: Prevention and Skin Care
Home Alone Alliance | Nutrition Basics
Home Alone Alliance | Managing Low Appetite
Nutrition Confusion & Our Food Landscape
Moving Beyond the Leakages: Practical Strategies to Manage Incontinence
Caregiver College Video Series
Medication Management Basics (English) | 1. Round Up Those Meds
Medication Management Basics (English) | 2. Talk to Health Professionals
Medication Management Basics (English) | 3. Set Up a Dosage System
Medication Management Basics (English) | 4. Create a Medication List
Caregivers! Want an idea of what the issues are that your patients are facing so you can better help them? Check out our
Transplant Patient’s Video Library.
More resources
Connect with professional organizations and network with other caregivers.
American Society of Transplantation (AST)- Resources for Transplant Patients
Coming SOON!
Caregiver how tos, handbooks, checklists, educational videos and guides, Caregiver message forums and peer to peer tips,and more… Help us get this up and running with suggestions and feedback at Contact Us