In April I did a post about my 82-year-old mother—who is in a nursing home due to Alzheimer’s—called “A Right to Fall.” It was about restraints, and the reasons they aren’t used for many patients in wheelchairs. Fortunately, my mother has never figured out how to undo the “lapguard” that slips under the side bars of her wheelchair, and most of the time, the guard doesn’t bother her. She doesn’t seem to feel “trapped.”
When my daughter and I visited Mom in August (see “A New Take on Eldercare”) she still seemed fairly content in her wheelchair, but she wasn’t moving herself around much anymore. In fact, when we wheeled her down the hall to the front lobby to visit, I had to keep reminding her to pick up her feet.
Yesterday’s visit was a difficult one for me. When I arrived, I looked for Mom in her usual “place”—parked in the hall with several other residents, right in front of the nurses’ station near her room—I couldn’t find her. I looked in her room, and she wasn’t there, either. I was about to ask one of the aides if Mom was in physical therapy when I spotted her. She was around the corner from her usual spot, parked (with her wheelchair wheels locked) on the other side of a laundry cart, with no one near her to visit with. I approached her slowly, observing that she was slumped over in her wheelchair, reaching down with her right hand, trying to pull herself forward as she held onto the cart next to her. She couldn’t move, and no one was paying any attention to her. I fought back the tears as I approached her. She couldn't see me, because she was looking down at the floor.
She didn’t lift her head or let go of the cart, but her eyes looked up at me, and she offered a subtle smile. “Oh, hi.”
“I’ve got some cookies for you—let’s go up to the lobby and visit, okay?”
“Cookies?” A bigger smile, but still not lifting her head.
“Yeh, those big chewy ones you like, from McAllister’s Deli.”
It took us a while to make our way to the front, as she dragged her feet most of the way. She continued to slump forward in her chair. Once I parked her next to one of the couches with a view out the front windows, I got out the cookies.
“Um, what are those?”
“Those are the cookies I brought, Mom. Let’s see if I can sit you up straighter so you can eat some with me.”
I walked around behind her, placed my arms under hers, and tries to lift her up a bit in her seat. Then I pulled her shoulders back until they almost touched the back of the chair. As soon as I let go, she returned to her slump.
“Mom, look up at the ceiling. You’re looking at the floor. Can you look up at me?”
Only her eyes looked up. I physically tried to move her head up and it wouldn’t move, so I just sat down on the couch beside her and opened the cookies. I broke off small pieces at a time and handed them to her, wiping the drool from the side of her mouth and her chin as she ate. It has increased quite a bit since my last visit. Finally I had to get up and get some wet paper towels. When I returned, she said, “my back is hurting.”
“It’s probably because you’re slumping down in your chair, mom.” I repeated my earlier efforts, but she continued to return to a slumped position. At one point I noticed her reaching towards the floor (which she couldn’t reach) and I asked what she was doing. “See that?” Her hand shook a little as she pointed at the carpet. There was a tiny speck of cookie. Later she was picking at the fabric of the couch, which had a busy upholstery pattern. Picking at things is a common behavior among people with dementia. According to one book on Alzheimer’s, "Picking" is the inexplicable fixation to touch, handle, or work at and remove small items bit by bit….” I’ve noticed Mom doing this more and more, but at least she’s not picking at her skin. Yet.
Over the next hour or so, we at the two large cookies together, bit by bit. Once I cleaned up the table I commented, “boy, those were good cookies, weren’t they?”
“What cookies? Did you bring cookies?”
I’ll remember not to mention them after they are gone next time.
Claire, another daughter who was visiting her mother, Emma, sat near us in the lobby, so I introduced myself and Mother. Mother didn’t acknowledge her presence, and as Claire and I visited, Mom would occasionally turn her eyes towards me and ask who I was talking to. Claire’s mother no longer speaks. She just sits in the wheel chair, looking out the window at the trees.
“Do you live in town?” I ask Claire.
“Yes. I come about twice a week to get her laundry, take it home and wash it, and return it. We usually just sit here by the window for a while—she likes the view.”
I fought back tears as I watched this loving daughter sitting with her silent mother. I wonder how long it will be for Mom and me. I thought about the documentary I watched a while back about how “Emotions Outlast the Memories” and I prayed that Emma, and my own mother, could tap those stored emotions—the happy ones—as their memories are being erased.
Before leaving, I tried to find the head nurse to mention my concerns about Mom being “stuck” in the hall alone, and about her slumping, but she was rushing to a meeting, so I waited and called her from Memphis this morning. She had been out of town for a week, and hadn’t noticed Mom’s slumping yet, but she said she would have her assessed today—probably with a physical therapist.
“It’s normal for her to start slumping at this stage—she’s probably reaching for things she sees on the floor, even a tiny speck. If she’s reached the point where she can’t, or won’t sit up straight, we might need to get her a reclining chair, to relieve the pain in her back.”
I cringed, as I thought about the other residents that I see at the nursing home in reclining chairs, or even in beds permanently.
Leaving the nursing home, I found myself in tears, just overwhelmed with sadness. And a little anxiety for my own future, since my mother’s mother also had Alzheimer’s. (That’s my mother, feeding her mother, at the same nursing home, back in the 1980s, when she was about my age, and her mother was about the age she is now.)
I stopped at a favorite watering hole before leaving Jackson, to get a gin and tonic and something to eat. Sitting alone at the bar at Julep’s, I felt a little of the pain starting to numb as the Tangueray and tonic slid down my parched throat. I ordered a sashimi tuna salad and stared at the flat-screen television above the bar. A middle-aged man sat next to me, ordered a pink-ish martini, and tried to start up a conversation. I wanted to move to a different seat, but I didn’t want to be rude.
Right about then three young woman came in and sat in a booth near the bar. I recognized their voices and looked up to see two precious young friends whose mothers I had known for over 40 years. And then Wisdom, another dear friend’s daughter walked in. They waved me over and we all hugged as Laura and Sarah Anne introduced Wisdom and me to their nursing school friend, Whitney.
Laura and Sarah Anne were best friends with my Goddaughter, Mary Allison, who was killed by a drunk driver almost twelve years ago. (That's Sarah Anne, Mary Allison, and Laura, at Mary Allison's high school graduation.) These girls and I share a lot of wonderful memories. As we drank, chatted, and laughed together, I felt the sadness lift, even as I shared with them the difficulty of my visit with my mother. Friendship and fellowship really do lighten the load, and I’m so thankful for that brief encounter at Julep’s.
As I drove home to Memphis in better spirits, I found myself thinking, I only hope the emotions will outlast the memories.