Having Spinal Muscular Atrophy and being dependent on a wheelchair for mobility has caused me to rely on caregivers for nearly my entire life. Therefore, I can certainly testify to the fact that you learn early on what to say and not say or do to your caregiver, as your life and well-being can depend on it. Just like any other relationship, there can be stressful days when spending a lot of time together. After many years, I have found there is a main ingredient in making the client-caregiver relationship much more pleasant; it's a must, really. It is something that you cannot survive without, and that is respect. Yes, respect is the key to a pleasant client-caregiver experience. Let's go into more detail to explore how to make this "partnership" work by implementing respect into your daily routine.
Ask, Don't Tell
This goes for both the client and the caregiver. For example, if I need a drink, I will simply say, "Can you please get me a bottle of water from the fridge?" And in response, the caregiver will be much more likely to want to help me than if I had said, "Go get me some water." How you communicate your needs can set the mood and tone of the day. I mean, how would you feel if your caregiver said, "You're going to the post office today to mail my letter with me."? I would be like, "Oh really...I am??" I always make sure to ask for assistance throughout the day if needed and would never tell someone what to do, especially the one who is taking care of me and making sure my needs are met. The relationship between the two of you must always be respectful. Treat one another in a way that sustains a positive environment so that you both can enjoy the day and help each other.
Say, "Thank You"
Just by using these two tiny words, "Thank you," can make your care attendant actually want to help you more. When my caregiver helps me with my shower and clothes, I always make sure to say, "Thank you for helping me get showered and dressed." And she always smiles and says, "You're welcome." Hearing words of affirmation and appreciation boosts our self-esteem and helps to ogive us a positive outlook for the rest of the day. Also, if I sit for too long in one position I'll often ask my caregiver to cross my leg for me. After she does it, I always, always, always say, "Thank you," and I really am thankful. Without the care that she is providing to me, I would not be able to get up, get dressed, and reposition throughout the day as needed. By thanking her, she knows that she is appreciated and that I respect her for her assistance. She has, in turn, thanked me many times for expressing my appreciation to her.
Be Conscientious of Your Caregiver's Needs
I can only imagine what it must be like to care for someone and bathe, dress, cook for them, get them out of bed and back in it, etc. I feel like I would need a break. A few moments of quiet time just to gather my thoughts and get a minute of rest would be nice. I never want to overwork my caregiver and wear them down to a point that they become tired and disgruntled. Let them have a few minutes to themself to look at their phone or read a book or go outside for a quick walk. By respecting them as a person, both you and your care attendant will prosper from it. You must understand that even though you are needing a lot more help than they need, caregivers need things, too. After all, no one wants to constantly work for the whole time they are at work. A break for some alone time several times throughout the day can make the day better for the both of you.
Treat One Another As You Want to Be Treated
I admit, years ago as a young freshman college student, I thought I had the world in my hands. I had just moved out from my mom's house into a dorm, and my caregiver worked for me. I thought I was the one running the show, no longer having to ask permission to do things or go places. But as my caregiver and I began to bump heads, I quickly came to the realization that I must treat her with respect to get what I needed, and to keep her happy. I needed to treat her as I would want to be treated: with respect and dignity. Yes, I was her boss because she was working for me, but I was also dependent on her to even get in and out of bed, so there was a fine line that must be recognized. A give-and-take situation where I treated her in a way that I would in return want to be treated.
Know Your Rights
Even though I may not be able to put my shirt on by myself, I do have the right to select which shirt to wear. I also have the right to choose when I go to bed, when I get up, and what I would like to eat for dinner. As human beings, we all have the right to make choices. We also have the right to a safe environment, free from verbal, physical, and other types of abuse. This, too, goes both ways. I have rights as the patient and by caregiver has rights as an employee. By us both working together to maintain a nice, peaceful atmosphere where we are both respected, we can work together harmoniously.
The bottom line here is to respect one another. Trust me, I didn't always have this client-caregiver relationship thing figured out. I have certainly had my ups and downs throughout the years. But I just want you to know what has finally worked best for me, and that is showing respect to one another. In the words of Aretha Franklin, always remember: to get what you want and need, you must show R-E-S-P-E-C-T.
About the Author
After being diagnosed with Spinal Muscular Atrophy at the age of two, Cory Lee's thirst for adventure never ceased. He went on many trips around the U.S. when he was younger, and then started taking things internationally when he turned 15. Since then, Cory has traveled to 21 countries across six continents, all while managing to start up his travel blog Curb Free with Cory Lee, where he shares his accessible, and sometimes not-so-accessible travel adventures with others. Cory is a member of the Society of American Travel Writers (SATW) and the North American Travel Journalists Association (NATJA). He has been featured in the Los Angeles Times, USA Today, in a nationwide segment for CBS News, Lonely Planet, and many others. His blog won the 2017 Best Travel Blog Gold Lowell Thomas Award. He hopes to inspire other wheelchair users to roll out of their comfort zone and see all of the beauty that the world has to offer.
Cory Lee's ride is a Quickie Q700 M.
Most of the stories here on LiveQuickie.com were submitted by readers. Do you have a story to tell? We'd love to hear it. Submit your story here.