It’s the week before Thanksgiving 2022. Mom is adjusting to her new life in Canton. She lives in a 6-bedroom home with 4 other residents who are there mainly for memory care. It’s almost ironic. Thier bodies work fine, but their minds are going. My mom’s mind is pretty healthy, but her body is useless. I wonder which I would prefer to have the least amount of control over, my mind or my body? I use that word control as if it belongs to me. What things in this life do we really have control over? I often think I have more control than I really do. That’s a topic for a later time.

The caregivers at mom’s new place are nice, competent, and willing to learn. There is much to learn when it comes to the care of a quadriplegic. My mom has no feeling below her neck and doesn’t feel sensations like when she has to urinate. So, she has a suprapubic catheter. This a device that is inserted through her bellybutton to the bladder. It allows for urine to flow from the bladder to a bag that is attached to her leg. There is a long plastic tube that runs from her bellybutton down her leg. It is important to make sure the tube never gets crimped like a hose can do because if that happens, the urine doesn’t drain, and the bladder begins to fill up causing her to have an accident that she wouldn’t even know she had. This happened on one of her first days in the facility. She told me that her bag had not been drained all day. When I checked, I found a crimp in the line. Sure enough, when I unfolded the line, the urine began to flow. I had to share with the nurse so that this didn’t happen again. Learning from our mistakes often the best way.

Not only is the catheter care something to learn, but there is also the communication aspect. Like I said, my mom’s mind is fine, but her ability to get help is extremely limited. If her nose is running, she needs assistance. If she wants the TV on, she needs assistance. If she is thirsty or wants a snack, she needs assistance. She doesn’t have the use of her arms or hands and so she relies on someone for her every need. When she is in her room at the back of the house, she needs to be able to get the attention of the nurse. She doesn’t have the ability to pick up a phone. So, a call button must be attached to her body in some way that she can lift the one finger that has some mobility to press the button. Without the ability to call for help, she gets extremely anxious. Imagine seeing a cock roach next to you and you don’t have the ability to move away from it, or your foot fell off the pedal and you can’t lift it back onto your chair. After a few days, the facility worked it out to have a call button that is accessible to her. Mom’s anxiety is still there, but hopefully lessening.

In addition, there is the daily routine of getting dressed. This requires some skill and muscle because mom is lying on her back the whole time unable to help. Lifting her arms and legs is like lifting with resistance. Her body isn’t just a noodle, the tone that has occurred has caused her body draw in and resist movement. Her muscles have atrophied and have no memory on how to perform regular routines. Getting her dressed takes about thirty minutes when you know how to do it well. If you are unfamiliar with the process, it can take up to an hour. The nurses at the facility, who care for 5 other patients, are learning how to manage their time and get mom dressed properly each day.

Once she’s dressed, it is time to transfer her into her chair for the day. This is another long process if one doesn’t know how or has to use the assistance of a Hoyer lift. The Hoyer lift is a cumbersome, yet useful, medical device that helps in the lifting and transferring of individuals. There is a sling that goes under mom’s body. The sling attaches to boom, or metal bar that extends out from the contraption. Once one has the sling under the body and the sling attached to the boom, mom can be lifted by pumping a device on the lift. A good visual is to think of a manual construction crane but designed to lift a body. Using the Hoyer lift is an adjustment for my mom because my dad, siblings and I used a gate belt to transfer her, which is much faster. We strap a belt under her torso while she is in sitting position, bend our knees, count to 3, and heave her up and over from the bed to the chair. Not everyone can do this safely. So, they are using the Hoyer lift at her new place.

Back home in Rock Hill, dad is improving daily and figuring out life beyond caregiving. He will come visit once he is strong enough. Mom is safe and learning to trust someone other than my dad for her care. She doesn’t like the change. My siblings and I are figuring things out daily and doing the best we can to care for the needs of our aging parents. We are all adjusting to this new phase of life.