Person holding out a plate of food, another person holding grocery bags, and a person Facetiming

What a Caregiver Means to Me

I talked with an old friend from high school who just found out he has a rare disease about how much our partners and caregivers mean to us.

First, we talked about how much our wives do for each of us and how guilty it makes us feel that they have to do so much for us. We also talked about how they don't feel like they are caregivers. They feel like they are our partners. That is true, but they can be both.

We also talked about how they feel they don't do enough to be caregivers. Many people in my life wouldn't consider themselves caregivers. But I don't agree with that at all.

Why is there a certain limit to being a caregiver and another to being a partner?

What a caregiver means to each of us

The second part of the conversation was about what a caregiver means to each of us. It brought to light our different meanings of caregivers. We all have our definition of a caregiver. Even caregivers themselves have different ideas of what a caregiver means to them.

One thing we both agreed on is that caregivers come in all different ways. To us, a caregiver isn't just someone who is always there. Caregivers can be someone who happens to be there to listen even if they can't be there physically. They can be someone who does certain things for you at different times. It doesn't make someone any less of a caregiver if they are there for less time or only when you call for help.

My definition of 'caregiver'

Oxford Language’s definition of caregiver is a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.

I don't buy into that at all. I believe a caregiver is someone who is there for you in their own way. I say this because many people emphasize that 1 person who always looks after you. To me, a caregiver is someone who has helped you when you need it. Yes, there are different degrees of caregivers, but each caregiver in your life has meaning and serves a purpose.

I understand that some caregivers may mean more to you than others. That is just life, but that doesn't diminish other caregivers in your life. Each person in your life is there to help in their own ways and the best way they can. We, as patients, can't and shouldn't expect more from others than they can give. I know as a patient, we need help. I know we need love, care, and physical and mental help. But who are we to tell someone else what they need to do or that they must be the dictionary definition of a caregiver?

Caregivers in my life

My wife

I have different degrees of caregivers and try not to push them to be something they can't be. My wife has been my partner and caregiver since I was diagnosed with sarcoidosis. She does so much for me. As big as hospital stays and doctor visits and as small as not letting me lift anything over 10 pounds, per doctor's orders. She is my primary caregiver, but not my only one.

My daughter

My daughter is a caregiver in her own way as well. When she was in school, she would check on me to ensure I was eating and caring for myself. She would make my meals if I couldn't and do what she could to ensure I was doing well.

My brother-in-law

My brother-in-law is a caregiver to me too. He takes me to doctor appointments, drives my daughter to her events, and does our house chores when needed.

My friends

I also have friends who I consider caregivers. Some call, some write, and some are there for me in different ways. Either way, they are caregivers. Without them, I would have had an even tougher time and may not be here at all.

There are always people who believe they don't do enough. But to me, I wouldn't be alive if not for each one of them. I am forever grateful for each person in my life. I am not saying my way or meaning is the right way. But I want to ensure that all of those who are caregivers, even those who don't think they are, are needed in a patient's life.

Don't underestimate the power of caregivers

I think caregivers are a group that is always taken advantage of or thought that they should be there or have to be there. They are the forgotten ones in the healthcare community. But without them, so many patients would not make it as far as they do. Please don't underestimate the power of a caregiver. They are so important in a patient's life. Please don't forget to show your love and support for caregivers – whoever they may be – for what they can and will do for you.

Remember, each person handles life differently. Don't be hard on them. Not everyone is the same, and not everyone can be there in the way you would like them to be. So, enjoy the ones that are there for you and the ones who aren't may be later. Caregivers come in all different sizes, genders, and parts of your lives. Some people may even surprise you.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RareDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

How many diseases do you have?