Attending the National Caregiving Conference in Chicago

Posted by Reeve Staff in Daily Dose on November 27, 2019 # Caregiving

By Freddy Perez, Community Outreach Associate for the Reeve Foundation Paralysis Resource Center

This month, I had the opportunity to attend the 4th Annual National Caregiving Conference ( in Chicago, which gathered caregivers from all parts of the country under one roof for an informative, heartfelt, and incredibly energetic event. I was attending as an exhibitor for the Paralysis Resource Center, but there were opportunities to attend sessions around a variety of topics such as self-care, advocacy, navigating the ever-complex healthcare system, and even ways to plan for the holiday season as a caregiver. It was a great opportunity to learn and connect with people who are part of a valued caregiver community.

Denise Brown, FounderIn honor of National Family Caregiving Month, I would like to share a concept that stayed with me from one of the very last sessions on the final day. Denise Brown, founder of, introduced a concept called, “The Caregiving Years.” The idea behind this concept is a sort of guide that explains what to expect during your caregiving journey. Like any journey, there are high’s and low’s, moments of triumph, and unexpected events. This guide is divided into six sections, each with a reflection on a keyword, coping strategies, and information needed to make the experience as meaningful as possible, not only for your care, but for your family and yourself. Below are just a few of my notes for each stage.

  1. The Expectant Caregiver
    • Starting from the very beginning of your journey, whether planned or not, it is important to take time to prepare for the role of caregiver. This includes taking the time to do research, identifying support, gathering information, and allowing yourself to get to know your caree’s feelings and values through open and honest dialogue. The keyword is ask. Ask questions of your caree, of healthcare professionals, and of family members who may be involved in providing care. Although it may be overwhelming at first, you are laying the groundwork for the future.
  2. The Freshman Caregiver
    • In this stage, the caregiver is testing the waters to see what works. It’s very experimental in that you are looking to identify specific solutions that are unique to you and your caree. There will be moments that will be trying, and you’ll need to go back to the drawing board and revise your routine – that is ok! The keyword is find. Find services that help you and your caree. Identify support in friends, family, or an online community. And last, find ways to enjoy your hobbies and interests – which are super important. Your schedule should include moments that will allow you to enjoy the things that make you happy!
  3. The Entrenched Caregiver
    • So your journey is off and there is so much happening around you. You need to develop a routine that helps both your caree and yourself to not get lost. You need to find the support and strength to continue being the best caregiver you can be. Discuss your worries, stresses, and concerns with your supports, and remember that you are doing your best. The keyword is receive. Receive help whenever possible. Receive breaks from caregiving. Receive support.
  4. The Pragmatic Caregiver
    • Understanding yourself during your caregiving journey may be a little confusing. There are days that you are upset, angry, and conflicted. During this journey, the mixture of emotions can cloud the judgement of your purpose. Remember that it is important to develop your relationship with yourself and your caree. Find common ground with your caree, by highlighting the relationship the two of you share – the moments that the two of you have cultivated. They keyword is welcome. Welcoming the good that can come from being open, honest, and engaging with your caree can take your relationship to a better level of mutual understanding.
  5. The Transitioning Caregiver
    • Towards the end of your journey, you are now walking with your caree during their last months and weeks. They keyword is allow. The natural cycle of life includes allowing the time to mourn and grieve. Caregiving is a part of your life and it is something that will live on with you forever. Allow your journey to remain with you and reflect on the experience. Finding new ways of support and asking yourself what changes need to be made to start the next chapter of your life, is all part of the journey moving forward.
  6. The Godspeed Caregiver
    • The keyword is treasure. The purpose of this stage is to share your lessons learned from your role as a caregiver. Remember the moments shared with your caree, value your dreams of being able to do what you want to do, and treasure the opportunities to help expecting and unexpecting caregivers, prepare for their own journey.

It was a pleasure visiting the National Caregiving Conference and talking to so many individuals who shared their experiences with me. Visit to find additional tools and resources specific to your journey as a caregiver. And just a reminder - there is an incredible amount of people caregiving around the country. You are not alone!

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.