November 11, 2011: “Punkie?” Mom doesn’t wake me when she calls out. A woodpecker beat her to it an hour ago. I get up, put something on, pad across the hall. It’s November 11, 2011; I’ve been back 11 days.
“Are you okay Mom?” I say from her bedroom door.
“Yeah, but I want to get going, or do something, I’m getting sort of tired,” she says.
“Uh huh,” I agree.
“What about you?” She’s worried, anxious, confused.
“I’m okay,” I lie.
“It’s so dark, and I don’t seem to know where I am,” she says as I crawl into bed with her.
“Well, you’re in your house.” I try to make her feel safe amidst the confusion.
“I know, but it doesn’t seem to be bright out or anything.” She doesn’t understand. Not understanding is scary. So is the darkness.
“Because it’s nighttime,” I say.
She considers this. “Anyway, I…. Anyway…” She searches for something to hang on to. Her world is upside down. It’s dark outside when it should be bright and sunny. She doesn’t know where she is. She wants to do something, but has no idea what. She’s afraid. I would be afraid too, if I were her. I remain calm. So far I’m still able to.
“Do you think you can go back to sleep?” I ask.
“I don’t know, I’ll try.” She will. Give her a few minutes.
“Do you want me to get you some milk or something?” A stab at being helpful.
“No, no…I’ll just…I’ll just wait…I don’t know what we’re going to do.” She looks up at the ceiling, the back of her left hand lying against her forehead, palm up, fingers slight curled. Her right hand clutches the duvet.
I don’t know what we’re going to do either.
“I can’t sleep too well you know,” she says in a whisper.
That’s one of the reasons I came back to live with her. She’s been up several times every night since, and I’ve begun to suffer the ill effects of too little rest.
“Did you sleep?” She checks in with me.
“Yeah, except there’s a woodpecker outside.” I try to take us somewhere real and concrete that’s also not dark and scary, and then I half laugh at the irony of a bird keeping me awake.
“What’s he doing?” Her fear evaporates for a moment.
“He’s tapping on the tree. Tap tap tap tap tap. And then he stops. Maybe that’s what woke you up Mom,” I posit. “The woodpecker tapping.”
“I don’t know,” she says.“Where is he? In this area?”
“Over by my room, in a tree.”
“Maybe you’d better stay in here,” she suggests. She’s not concerned about the woodpecker keeping me awake. She’s nervous when she’s alone. Never used to be though; lived in this big red brick house with a cat or two for close to forty years. “It’s hard to know what time it is or anything.”
“It’s almost 6 o’clock in the morning,” I say.
“It should be lighter. It should be brighter out, don’t you think?”
“It must be cloudy. That’s why it’s dark outside. It’s dark outside, because it’s cloudy.” I repeat in reverse for good measure. “Because you’re right, it should be lighter.”
“I would think so.”
“It’s because it’s cloudy.” I repeat again, hoping it might stick. It doesn’t.
“It’s pitch black outside. I don’t know why it’s so dark.” Her mind mirrors the state of the pre-dawn sky.
“I put some night lights in here so you could see better. But they don’t shine outside.”
A few moments of silence.
“It seems as though we’ve been in bed for a long time,” she ventures.
“Does it?” I query.
“That’s the way I feel. I don’t know why it’s so black out. Why is it like that?”
“It could be because it’s cloudy today, and it’s early in the morning. It’s not even 6 o’clock yet. Do you want me to turn a light on?” I ask.
“No. I’ve got the light here.” She motions to her left. The table lamp my brother gave my ex-husband and I as a wedding present sits on an antique pine table. The shade is creamy white and decorated with tiny cutouts; the bottom is fashioned from an old glass oil lamp. It’s half full of dried potpourri: red, mauve and pink petals. The light is off.
“Do you think you can go back to sleep Mom?”
“Well, I’m gonna try. I’ve gotta’ do something.”
“Okay. I’m going downstairs to do some work.”
“Oh shucks,” she says, the worry has crept back in, like the dawn soon will to the day.
“It’s time for me to get up.” I yawn. “If you need anything, just call me, okay Mom?”
“Okay dear. Or I’ll go downstairs or something. I don’t know what’s the matter around here. Anyway, I’ll try to sleep a bit. I don’t know how you can do anything when it’s so dark,” she says as she pulls the duvet up to her chin, eyes wide open.
I leave her alone in bed, and head downstairs to the den, which is underneath her room. I’ll hear the floorboards creak if she gets up. With any luck she’ll fall back to sleep for a couple of hours, and I’ll have some time to myself before she awakens for good.
Click play to hear the first part of the conversation:
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So hard and sad. How does one give comfort to someone who is lost and confused? Just the way you did/do: with lots of patience and lots of love.
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Thanks Heidi. I wish I had known then what I know now…
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Oh this is so familiar to me.
Mom has been with me 3 days shy of a year. I can’t recall exactly when it happened but one night she said ‘I’m afraid’.
Since that time , I sleep with her every night. She and I have ‘story time’ (mostly her !) and , at some point , I either say goodnight or give her a head massage to calm her into sleep. She gets her best sleep from 1 a.m. on and I get up at 5-6 a.m. to feed cats, have time to myself and whatever else comes to mind ! Mom ends up snoozing until 11 or 2 !!!! Some days I just want to crawl back into bed too.
These twilight conversations are the best. You are just there in the moment with someone who is, for the most part, relaxed and doing ‘train of thought’.
It’s a gift that you can’t explain to anyone else unless they have experienced it. When one of my brothers was visiting, I told him to pull up a chair for story time. I think he really touched on an aspect that he had not experienced before.
That was a special moment for him and my Mom. She got to have her time with him….quiet, special, relaxing and from the heart. So much comes from this that one can not explain.
Thank you Susan !
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Natlee! Thank you so much for sharing that tender and loving story.
Yes there is joy to be found amidst the chaos and despair… ❤
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I love you sharing these experiences of what I call “special time”. Relaxed and in the moment…beautiful lucid moments together. Kate Lambert, CEO, Daughterly Care
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Thanks Kylie, I know you must have many of your to share as well ❤
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Wow, so touching, so intimate, so human. I wish I could say more but I can’t find the words. It’s just very special.
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Thanks Lemony. You have captured all that’s important in a few words: “touching, intimate, human.” Nothing more is required, or even desired in the end ❤
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i remember those days well. I don’t think my mother ever said she was afraid-although I knew she was. She did say-I don’t understand what is happening….and, truthfully, neither did I. It is a lonely, scary place when you begin to lose who you are–know where you are—and can’t explain it.
Your mom on the recording sounded so much like my own mother……xo Diana
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“t is a lonely, scary place when you begin to lose who you are–know where you are—and can’t explain it.”
Yes, I imagine it is terrifying. I am full of respect for those who live with dementia. They are strong beyond belief.
Like yours, my mom never said she was afraid in so many words. But I understood she was from what she said and how she said it, as well as what she did. Unfortunately, some of that insight came later. Had I been even more sensitive than I was, and had more knowledge of the disease at the time, I could have done a better job at being compassionate.
I hope the memories these posts bring back for you aren’t too painful.
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