Training a new caregiver is easier with a seasoned one at your side

It is always an interesting and fun challenge to navigate my limits and needs while living on my own with SMA. I have a wonderful community of friends and caregivers who come to my house throughout the day and night to assist me. Still, I am constantly on the lookout for new recruits to prevent caregiver burnout and care gaps. Whenever a new person joins our crew, there is an inevitable learning curve as we get used to each other.

I am a teacher by trade and have developed a strong ability to articulate and explain new concepts to students. This applies to new caregivers as well, and they regularly give me positive feedback on the ways I teach them to help me. But there are limits: I cannot physically show them how to do things like put the sling of my Hoyer lift around me, arrange my hips in my wheelchair seat, or dry my hair.

And no matter what I do or say to try to reassure them, they are initially afraid of hurting me, nervously and tentatively handling me as though I will break like glass. While I can appreciate their caution, it slows our work and makes it more difficult. “I’m not that fragile. Be more aggressive!” I tell them. But they don’t really believe me. So I find that it is helpful to have a seasoned caregiver show the newbie the ropes.

Recommended Reading

December 2, 2025 Columns by Connie Chandler

The sweet stuff my caregivers do that enriches my life with SMA

We don’t have to go it alone

We recently added a new weekend caregiver to the roster, and I needed that friend to give me a shower. She was very sweet and willing, but had never done anything like this before, and I could sense her anxiety about doing it “correctly.” My friend Lisa has been giving me a weekly shower for the past three years, so she is very comfortable and familiar with it. I asked her to come over to demonstrate the whole routine.

“First, you need a shower uniform, because you will probably get wet,” Lisa instructed playfully, modeling her own old CrossFit T-shirt and leopard-print gym shorts. “Then just be brave and get in there and scrub!” Lisa and I laughed and chatted while she worked. She’d occasionally point out a specific, important detail, such as how much shampoo to use or how to keep me balanced so I can sit up straight.

The new caregiver stood by, trying to take it all in. Lisa could be intimidating because of her athleticism and Olympic-level capabilities, except that she is very down-to-earth and a little goofy, and often asks me, “Is what I’m doing right now too weird?” (It never is.)

The following week, the new caregiver showed up for her shift wearing a bulky hoodie and a big grin. Excitedly, she said, “OK, I’ve been working on my shower uniform all week. Are you ready for this?” She took off her sweatshirt and revealed an old T-shirt with “Super Clean!” printed in bold and sparkling letters across the front.

I cracked up. “It’s perfect!”

For her first time giving anyone a shower, she did great. She was so much more relaxed and confident than she had been before. “I’m gonna try to do this like Miss Lisa told me,” she said a few times, “but tell me if I’m doing it wrong or if it’s too weird.” Not only did she go through the motions correctly, but she also laughed and chatted with me like Lisa does, so I could rest and enjoy the process, too.

Training new caregivers can be hard and overwhelming, but adults with disabilities don’t have to do it alone. My advice is to introduce the new person to an experienced caregiver you love, and let that old friend set an example and serve as a mentor, helping develop more caregivers at that level of excellence.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.