Misconceptions and Misunderstandings

Hey hey, welcome back 😊

This week I’ll be sharing what’s been on my heart lately about misconceptions and misunderstandings as it relates to our care recipients. When I think about this topic, there are a few moments that come to mind right away:

-          My care recipient moving in the way they do when they’re happy and content and their doctor thinking it was them being upset and would not change their perspective even though I explained those movements are what they do when they’re happy.

-          My care recipient being asked to leave school for being “sick” when the “sickness” they were referring to was part of their baseline functioning.

Has this happened to you? I bet many memories come to your mind quickly. I bet experiences of perceived misunderstandings come to mind too. Maybe a rough trip to the grocery store where people staired and had judgmental looks on their faces, or maybe it wasn’t even a rough trip, just a typical outing. Being able to connect with other staff caregivers after these experiences has been such a great source of connection and really helped me find peace after these situations. For those family caregivers out there, know that you’re not alone and while these misunderstandings can be so deflating and frustrating, you and your care recipient are not alone in these experiences. I am so expectant and excited for a community to grow, so that you family caregivers don’t have to feel isolated in your frustrations, but can share them with others who understand what it’s like first hand.

Now for those outings to the grocery store when it’s a very rough outing that you just barely make it through, know that there are people at the store at the same time as you that are for you. While it may seem like everyone is judging you or annoyed by behaviors and vocalizations, I guarantee there are people there who understand. In the year 2020, there were 4.5 million paid caregivers actively working in the United States (https://www.ahip.org/resources/caregivers-in-america). Now think about all the people who have been caregivers in the past (personal care assistants, CNAs, group home staff, day program staff, paraprofessionals in the school setting, disability camp counselors, any of the healthcare professions, and so many more). Even more, think how many families have a close or extended relative that has higher needs, while extended relatives may not have a super clear picture of how things go, many of them at least have some more understanding and background for what could be going on. If that number were calculated, it would be extremely high. And that’s not to mention the people who may not have background understanding or education but are simply just kind people who just want the best for you. While it may feel like nobody around you understand or is for you in the moment, there are so many people both present and not present who are for you.

While our world has a long way to go to reduce the misconceptions that happen for our care recipients, we have come a long way, and as we as caregivers continue to bring our care recipients along for the normal aspects of life (to the grocery store, to Target, to church), we’re helping others to grow their understanding and experiences too. I want to encourage you to not shy away from bringing your care recipients along, I know it can be so much more work, but for them to have those typical daily experiences is so good for their mental health and wellbeing, and it is so valuable for our communities to have everyone in our community around and participating.

Sweet caregiver, you are doing great things, and I am so grateful for the work you do to raise the standard for how our care recipients are treated.

Much love,

Rebecca