Why I’m making the case for ALS certification for healthcare aides
Patients and professionals would benefit from a designation of special abilities
As I face another 30-day stay in a health facility, what may be a pipe dream keeps bobbing around in my head. I’d love to see an opportunity for health aides to become certified in the care of ALS patients. This appeal is not a call for a formal education course, but rather, a simple set of criteria that addresses the special needs of those with this progressively debilitating disease.
The first criterion is compassion, along with being willing and able to provide all necessary care. Some aides just want to sit with their patients. ALS demands far more than that, including open-mindedness, initiative, observational skill, listening skill, and patience. The aide should learn about ALS and stay updated on new developments and any changes in the patient and the industry.
I have an aide, Jessica, who’s joined an online group to get information and resources to help with her service to me. She reads related articles and posts that are germane to my condition. At this point, she may know as much about ALS as I do, at least on the care side. The great thing is that she wants to learn, because she wants to do her best for me.
She sees my needs sometimes before I have time to ask for help. She’s learned how to operate my eye computer, what TV channels I like, and what music I like to hear on Spotify. I don’t have to ask for hygiene maintenance or adjustments to my body in my chair or my bed; she simply does it. She’s also learned how to operate my external ventilator, which is as simple as a CPAP mask, as well as my Hoyer lift.
Jessica is not only sympathetic, but also empathetic. She sees my discomfort and seems to feel my pain and acts on them without being told. She brings her whole self to her job, and I’m grateful for her zeal and her continued pursuit of knowledge regarding my illness and how it affects me personally.
So what would it take to make a reality of my fantasy of a certified ALS aide? It begins with the aides, of course, and what they bring to the table. Then agencies, facility managers, and patients can provide small incentives for aides who choose to go the extra mile to become a certified ALS aide. It’d give a bit of comfort to us to know our aides have committed to giving the best care.
I believe if a person is enthusiastic and willing to be the best aide he or she can be, it would make life much better for folks like me. I learned a long time ago that recognition and acknowledgment are the main motivators to a job well done; thus, a small token of appreciation would boost the confidence and self-esteem of these health aides.
A button or a badge that shows me the special level of care I’ll receive would be great. With ALS patients, little things mean a lot. A slight adjustment of my arms and legs, turning my pillow over, cleaning my glasses, and other simple comforts are the kinds of things that could be expected from a certified ALS aide.
When I came home from my last respite stay, I wrote a column that contained a few suggestions for nurses and aides. Overall, my time at the facility left a lot to be desired. I’m going back to the same place, and I trust my experience will be considerably better this time.
In the meantime, let’s see if there’s support for a special group of health aides. Despite being such a relatively small segment of sick people in this country, we with ALS can have an impact by starting in our immediate environments and spreading the effort from there.
Who knows? It just might change the way ALS and its patients are viewed and treated.
Note: ALS 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 ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.
I agree with your thoughts on certified ALS aides. It is so heartbreaking to know how little healthcare aids know about ALS, I've read so many sad stories of how PALS are not getting the quality care they need. My husband was diagnosed in August 2019, and passed in November 2021. His wish was to stay home throughout his time with ALS, and I promised him I would never put him in a home, even though Hospice often suggested it. But I wasn't sure he would get the care he needed, and I was afraid of neglect as well. Even though I would have welcomed a break, I knew I would get plenty of break when he passed. He died in his lift chair, with me by his side, just the way he wanted it.
Thank you James, I enjoyed your article. I agree with you, as the wife and caregiver to Will who suffers with ALS I often wonder what I can do to make things easier or better. I can only imagine if I wasn't here for him I would want his caretaker to fully understand ALS and how to help with his needs. Genuine caring, empathy, compassion and a desire to learn unfortunately can not be taught, but I hope that most people that enter the field of caring for people possess those qualities. Sounds like Jessica is an amazing and unique aide.
Very well expressed James
Here! Here! I love your idea. I’ll bring it up to my ALS doctor at my next appointment.
I support your case for an ALS certification for health care aides. I think it's a great idea. I have 4 caregivers and only 1 had with experience with ALS. It sounds like you have a great caregiver! How did you find her?
Amen! Just starting my own journey, but this idea is brilliant, and, as you said, not a formal class or training, just for the caregivers to be familiar with our obstacles and be a friendly face.
i totally agree. Ive had 2 health aides so far and neither had any knowledge of ALS patients. Also EMTs need to be knowledgable. In January when I fell in the driveway and cracked my head open the EMT was warned by my spouse that I had ALS. He responded "What is that?"
Karen Q Goldhirsh
My husband has had ALS for 5 years and he too saw the need for caregivers to receive training in caring for ALS patients. We embarked on a program with Your ALS and the Hope Foundation to develop such a tool. Check out Your ALS Daily Living Guide it provides many helpful suggestions and is organized in such a way that you can easily tap into the area a caregiver needs help.
James - You are SO right! We need more awareness and education on ALS in ALL our healthcare professionals and First Responders!! I love your idea of a “designation” a caregiver could proudly wear on their name badge! I would be willing to pay for that education for our home care provider!! Thank you for the article! Peace and Blessings, Friend!
Thank you for your post! It was spot on. We had a bad experience w/ our first Home Health. They were sent for OT & PT. Both of them were lost. We ended up stopping their services because I could do the exercises & range of motion David needed. HOWER, we now have great care & feel completely confident watching them care for my husband. 🙏🏼
I totally agree. As your friend and minister, who occasionally sit with you, I am clueless to all the “little” things that really are “big” things as they relate to your comfort. Recently, when I visited, I noticed how compassionately connected Jessica was to your needs. How can I help bring this to fruition? Thanks for your insights and courageous tenacity.
James, here's some good news for you and your readers - - the website "Your ALS Guide" has a special section devoted to guidelines and tips for paid caregivers (a downloadable PDF too). Here's the link: https://www.youralsguide.com/als-caregiving.html