by Beth Whitman
All is not roses.
The other day I got a call from the Alzheimer’s facility. They told me that Mom was having trouble “transferring.” In nursing-home language, this generally means moving from the bed to a wheelchair or from a wheelchair to a commode. This is usually accomplished with a physical assist from an aide, or, if someone is wheelchair-bound and cannot maneuver on their own at all, hospitals and related facilities use an assistive device called a Hoyer Lift, which is a hydraulic sling. When Mom first went into the facility, she could still manage to move, with the assistance of an aide, from wheelchair to toilet, but for about six months now, she’s been at the point where she no longer knows how to stand up, even with someone helping her. So they had switched to using the Hoyer Lift.
At first, it had worked like a charm. But now the Alzheimer’s facility informed me that physical therapy was going to work with Mom to see if they could help to make transferring a little easier for her. Apparently there were issues with Mom and the hydraulic device.
This did not surprise me. The other day when I went in to visit, I happened to show up when a couple of aides were toileting Mom, and I saw that she was not grabbing the handles of the Hoyer Lift, nor putting her feet in the proper spots. She was held in place only by the band around her upper torso, sort of just hanging there.
I asked what was happening, and they said that they were waiting for the nurse to come give her a suppository. Mom was not yet highly distressed, but she was getting close, so I asked the aides to put her back down and skip the suppository.
They did, and while they were finishing with Mom, I went to the nursing station to ask about the suppository regimen. I was told that the protocol was to use a suppository when a patient has not had a bowel movement in three days, and it had been three days for Mom. I asked them to hold off, and then went and got Mom and hung out with her a bit more before leaving. But something was still bugging me.
A few days after getting the phone call about the new physical therapy plan, I went to visit Mom again. We walked the hall, hand in hand, her in the scoot chair pulling on the railing with her other hand. She was in a pretty good mood. She was talking, such as it were, as we walked along. Her verbalizing now sounds like this: “Bu, b, b, bu, bu, bu . . . ” I call it bubbering.
This is Mom’s current default state. She is either bubbering like this, or asleep. I can usually gauge her mood by the volume and tone of her bubbering, as well as by the furrowing of her brow.
We got some ice cream and ate it in the rec room, and then I wheeled her toward the window. She likes to look outside but there was a bunch of equipment blocking the view. I went to move it out of the way, but her volume and distress level started to increase.
“Bu, b, b, bu, b, BU, BU, BUT, BUTT, BUTT, TUP, UP, UP, UP . . .” She was pushing away with her feet.
I turned toward her and asked, “Is someone putting something up your butt?”
“YES!” she said, staring at me.
“And you don’t like it?”
“NO!” Her stare grew more intense.
I put my hand on her shoulder. “Well, then I will tell them to stop. You stay here. I will be right back.”
She was completely quiet as I left the room.
I was furious. I had discussed all of this with the doctor when Mom first entered the facility. I walked down to the nurse’s station. I asked again about the suppository protocol. The nurse on duty was very helpful. I told them that Mom had always gone a long time between bowel movements, that it had never been the result of digestive or intestinal issues, it was just her way. I insisted that they not give her suppositories every three days. I made it eminently clear that, unless Mom went seven days without a bowel movement, I wanted them to forget the suppositories altogether. I explained my belief that the difficulty they were having with transferring Mom in the Hoyer Lift was probably her way of rebelling against the suppositories and that they needed to stop using them as a matter of routine. I was angry because I had given this information to the doctor when she entered the facility and didn’t know why she was now on this regular laxative schedule without my being informed about it.
The nurse said she was glad I intervened. She herself had been concerned. There had been a change of doctors, she explained, and somehow the earlier orders had been remanded. The nurse acknowledged that sometimes it takes the intervention of a family member to put things right.
I thanked her and went back to see Mom, who was now asleep. I gave her a kiss. She opened her eyes sleepily and gave me a big smile, then fell back asleep.
A week later when I went in to visit, her primary aide sought me out. “Your mom had a bowel movement without a suppository. It took five days, but everything was fine.” I asked if things were going better with the transferring.
“Yes,” she said. “She still isn’t placing her feet correctly, but she is no longer waving her hands in the air trying to push us away from her.”
I can’t say enough good things about the staff at the Alzheimer’s facility. They are very caring and responsive, but still there are times when things slip through the cracks. And with an Alzheimer’s patient, unless you have time to just be with them on a regular basis, and pay very close attention to their motions and emotions, it is easy to miss what they are trying to communicate. I wonder how long my mother had been trying to tell me — trying to tell anyone — about her discomfort. Sometimes all we can do is guess. But guessing with the full weight of knowledge and experience of the person is definitely a little easier. And guessing in a way that includes them, that involves them in the communication, even in the limited ways they are able to communicate, is critical.
Beth Whitman lives in Maine and is a member of Belfast Cohousing and Ecovillage, a developing community on the coast of Maine focused on multigenerational living and sustainability.