This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes, which are fictionalized versions of real events, are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “rise and shine.” The rest of the vignettes are here.
rise and shine
“Annie. Wake up Annie. It’s time to get up,” a voice says.
I ignore the voice. I keep my eyes shut. Go away whoever you are. Go away. I don’t want to get up. I’m comfortable here. It’s warm and soft and dark. I feel sleepy; not awake.
“Annie? Wake up dear. It’s time to get up,” the voice says.
Keep your eyes closed. Don’t move. Maybe the voice will go away. I hear a swishing sound and a clatter. The darkness is a little less dark. Light is coming from somewhere.
“Annie. Wake up.” A hand on my arm, shaking me gently.
“Mmmmmmm,” I hum. I try to open my eyes. I can’t. They’re stuck. Goopy. Oh! I’m cold! Someone has taken the blanket off. Brrrrrrrrr.
“Annie, I’m going to help you out of bed,” says the voice.
“No.” I say “I’m asleep. I don’t want to get up.” My eyes open a little. Everything’s blurry. I shut them again.
“Your eyes are open and you’re not asleep. Come on now. It’s time to get up. That’s a good girl.”
Whatever I’m lying on starts to move. It pushes against my back and my head. I start to sit up. I don’t want to sit up. I don’t want to sit up. An arm reaches under my knees, and bends my legs. Another arm goes around my shoulders; it lifts and turns my upper body. I’m sitting up. I feel heavy. I lean to one side. A hand pushes on the leaning side. I can’t see clearly. I hear a whirring sound. The bench I’m sitting on starts to move. I’m sinking. My feet touch the ground.
“There we go my love. Now let’s walk to the bathroom.” Hands take mine and pull me to my feet. My legs shake. This is scary. I feel my heart beat.
“No. No. I’m asleep,” I say. “I can’t walk.”
“Yes you can. Come on. Let’s go.” The hands drag me forward. My feet scrape the ground. My legs are like noodles, heavy as elephants. I can’t control them. I’m going to fall.
“No,” I say. “Stop pulling me. I’m going to fall.”
“No, you won’t. I’ve got you. You’re doing fine. You’re doing great. It’s a beautiful day. And your breakfast is waiting, pancakes with maple syrup,” the voice says.
I can’t make my legs move. What’s wrong with my legs? The hands keep pulling mine. The voice keeps talking. Everything is foggy. Is that a person attached to the hands that are holding mine and pulling me? What’s going on? The light is very bright now. I’m in a little white room. Everything is white. There’s a hole.
“Grab the bar,” the voice says. “Grab the bar hun.” My arm reaches out automatically. My fingers close around a smooth pipe. “That’s it. That’s it. Hold on to the bar. I’m going to change your panties.” I feel my dress sliding up my legs. Someone is taking off my dress! Cold fingers at my waist.
“No!” I say as loud as I can, just like Mummy told me to. Mummy said those parts are private. No one should ever touch you there. I let go of the bar, and try to push the hand away. I lose my balance and fall sideways. My hip hits something hard. It hurts.
“Ouch!” I cry.
“Grab the bar Annie! Grab the bar!”
Bing. Bing. Bing. Bing. A bell starts ringing, and everything goes black.
- “Resists care” is #1 on the NHBPS
©2016 Susan Macaulay / MyAlzheimersStory.com
https://myalzheimersstory.com/2017/01/08/alzheimer-annie-invites-you-in/
https://myalzheimersstory.com/2016/04/26/waging-war-at-alzheimers-bath-time/
https://myalzheimersstory.com/2016/05/22/stop-in-the-name-of-love/
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My Alzheimer's Story 
I go through this every day. He wants to stay in bed longer and longer. How do I get him up? Do I get him up? Does he want to stay in bed becomes he needs it or because he wants to avoid life? Confusing!
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My mother is difficult to get out of bed as well. I wonder if she’s trying to avoid my father, whom she doesn’t recognize. She says she wants to “take a break from him”. Sometimes she gets up, has breakfast and goes back to bed, this after going to bed the previous night at 7:00 and getting woken up at 8:30. Can a person possibly be that tired and sleep that much?
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Ann, I don’t know if a person can be that tired and want to sleep that much, and I’m sure there may be many potential causes which include (as you say) trying to avoid situations that might make her feel uncomfortable, or feeling depressed, or having nothing to look forward to, or simply generally being afraid of feeling confused and lost. You really have to be a detective to get to the bottom of some behaviour, and it’s not easy, not easy at all!
I recently wrote a blog post for the caregiver network in which I talk about asking 20 questions; it’s a technique I’ve used that might potentially be helpful. The post is here:
https://thecaregivernetwork.ca/20-questions-better-care/
Let us know if you come up with any breakthroughs 🙂
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Rita, it is confusing, and the questions are hard to answer, particularly when the person is unable to articulate what’s happening with them. When I asked my care partner simple questions, the answer I often get is “I don’t know,” which is a perfectly valid and honest response. Sometimes we’re just unable to understand what’s going on with our own selves, even as so-called “normal” states of being. What must it be like for someone who lives in dementia his brain is not functioning at full capacity? My solution was to let my care partner sleep when it appeared that’s what was required, and to facilitate life engagement when it seemed that was required was required.
As I said to Anne, you have to be a really good detective! More on that here: http://togetherinthis.com/better-dementia-detective/
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All too often, residents are forced to follow a prescribed schedule that benefits the facility they live in while all of their normal daily routines before coming to the facility are abandoned. This is only one area where change needs to be made in many communities.
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Lisa, I couldn’t agree with you more. We could start there as one small step and then just keep going…
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