By Penny Shaw
November 21, 2023
I have Guillain-Barre syndrome – a neuromuscular disorder – in my case with quadriparesis: paralysis of the legs and weakness of my upper extremities.
I have no control over my legs. I cannot stand or walk. I cannot bend or straighten them. When I am in bed I cannot turn or move myself in any way. Aides who provide my care must do all the positioning I need.
On the 7-3 shift I must be turned back and forth to be washed, and then turned back and forth to be dressed. Finally, to be transferred safely to my wheelchair – I must be positioned completely flat. This is important because I will be positioned in my wheelchair exactly the way I am in my sling. If straight up in the sling straight up in my chair. If tilted in bed then tilted in the sling and in my chair. This latter would cause my right leg to be twisted painfully on the footbox.
CNAs complain about positioning me. They make comments like “It’s my shoulder.” or “It’s my back.” I realize that my care is demanding physically. Boosting me. Turning me. Pulling me flat. All these tasks require my aides to use their muscles. But this care is essential to my safety and comfort.
Once, near the end of my 7-3 routine – when it was time to position me flat for the transfer to my wheelchair – one CNA pushed me so hard to the right I was flipped on my shoulder and not flat at all. My primary CNA then had to start the whole process over – pulling me flat again. Unnecessary extra physical work for her.
This CNA, who had to pull me flat again, was really nasty to me – telling me I liked injuring my CNAs! I told her it wasn’t true. That I have no choice. That I am paralyzed and cannot position myself. That – if I am not transferred correctly – my right leg will be twisted in pain. She responded that I have a choice. I can choose to be in pain so that she will not be in pain from pulling me flat. She told me that I don’t care about my aides.
One morning – when none of my regular 7-3 CNAs were working – a CNA who knows me well was asked to come to my unit to provide my care. She worked alone going from one side of my bed to the other. Only when it was time for my transfer did she get another aide to assist her. She never complained about any part of my care. So, personality has a lot to do with how I’m treated.
In the evening when I am put to bed I need to be positioned completely flat, not tilted to the right at the edge. If I am not flat my whole body is turned and my right leg will slide off my bed. One night two agency CNAs did not understand this – and left me in bed, hanging off the right dangerously.
I grabbed the side rail on the right and hung on so I wouldn’t slide off. I turned my call light on for help but no one answered. Luckily, I was able to reach my cell phone and called my local police for assistance. An officer contacted my nurse who came in and rescued me.
One evening I was being put in bed by an aide who knows me and provides excellent care. Assisting was a young inexperienced fellow that many of us – residents and staff – had previously had problems with. I asked him politely to push my legs over a little – so they’d be straight and I would not be in pain. Instead of doing this he walked out of my room and did not return. Being a 2-person-assist, my aide went out and got my nurse to help her in finishing my care.
My worst experience with an aide – who didn’t like positioning me – is the following. I was in bed and asked her to push my legs over to the right. She angrily yelled at me “Push yourself!”. “Push yourself!”. While yelling at me she pushed both my legs off my bed – such that they were hanging off at the knees. If the aide on the other side had not grabbed both legs – and put them back on my bed – I surely would have slid off to the floor. I could have been injured or worse.
I considered this an assault. So, the next day I emailed my contact person at our local police station. He replied he could send an officer to come to my facility to write up the incident. He also told me I had the option to press charges. I decided not to. Instead, I informed my director of nursing that I would never permit this aide to provide care for me again. My DON made sure she was no longer assigned to my unit.
What can I do for my aides? I cannot stay in bed and not have a life – getting pressure sores. I cannot have unsafe transfers. I cannot be left flat in bed at night and slide off onto the floor. CNAs have a choice. They can ask to be assigned to a different unit. But I personally have no other choices. I need this care and have been getting it in my facility for 21 years now.
The purpose of this piece is not to malign my caregivers – but to point out that CNA training should include the needs of individuals like me with paralysis.
And in closing I share that – in spite of my paralysis – I have a good life. I drive an electric wheelchair to go outside into my community. I can feed myself. I eat out in restaurants with friends. I read. I use a computer. I shop with only a little assistance from store staff or other customers – who hand me merchandise I can’t reach.
Penny Shaw is a nursing home resident, a national advocate for nursing home reform, and Dignity Alliance Massachusetts supporter.