Christmas Eve – My Alzheimer's Story

Mom and I had words on Christmas morning 2011, from about 03:30 a.m. to 05:30 a.m. I’d been in my role as care partner for less than eight weeks and hadn’t yet discovered there’s no point arguing with someone who is living with dementia in the mid to later stages. I didn’t know the best way forward was to step into her reality and go with her flow. I had a lot to learn. Three years later, I wrote a play on aspects of my journey with Mom; Scene 4 in Act 1 is based on Christmas morning 2011.

Act 1 Scene 4

Christmas morning; Susan’s bedroom 03:30 a.m. Susan is in bed with the light off. We hear sounds of walking around, opening and closing cupboard doors and dresser drawers in bedroom across the hall. Mom comes into the doorway to Susan’s bedroom, she is silhouetted by the light from her room across the hall.

MOM (Angry, aggressive): Sue? Are you coming with me or not?

SUSAN (Soft voice, rasping cough): Well, I don’t know where we’re gonna go, Mom, because–

MOM (Impatient): I’m going home to Mummy’s, to where I live, on the Georgeville Road.

SUSAN: I know, but we’re already there, Mom.

MOM: (Loud; exasperated): What do you mean we’re already there Sue?

SUSAN: I mean that’s where we are, we’re on the Georgeville Road. At your place.

MOM: Don’t be ridiculous Sue. This is not our home. I wanna get home, so I’m gonna go. If you don’t wanna come, don’t come, but I’m going home. I’m not gonna stay here all night in a place that’s not mine with nobody in it.

SUSAN: I’m here Mom. And the cat’s here. We’re safe here Mom.

MOM: Don’t be so stupid Sue. (She leaves the doorway and goes back to her room. As she does so, her room becomes lit and we can see what she’s doing. She continues yelling from her own room across the hall.) I’m gonna get out of here and I’ll do it quickly. The only trouble is I don’t have any clothes to wear. That’s the only problem. Unless I put them in the cupboard here or put them up here somewhere, but I’ve gotta find something to wear. My pants. Where are those? I’m gonna wear a sweater, if I can find my sweater. I thought I had taken it out, and put it on. I don’t know where it is now.

(Mom continues rummaging, looking underneath the bed, etc. Susan switches her light on. Reaches over the side of the bed, picks up her iPhone, checks the time as she hangs over the bedside, rolls back into the bed exhausted, coughs, checks the iPhone again, puts the back of her hand on her forehead. After a few seconds she reaches over onto the floor, picks up an old galabiya, sits up, puts it on and, gets up and walks out the door and over to Mom’s room; she goes in and sits on the bed.)

MOM (Still rummaging in drawers): OK. There’s my sweater. I’m heading out. I’m not gonna stay here all night and listen to them. They don’t know anything. Now, the only trouble is I don’t have a bra. Must be here somewhere. If not, I’ll just wear–I won’t bother. But I know I did have the bra when I left there. Maybe it’s…no, it’s not there. I’ll find one maybe in here…I don’t know. Here’s one. That’s it. Got that done. But I’m not gonna stay here and just rot, you know? I wanna get home.

SUSAN: Well, maybe it would be a better idea to wait till the morning, Mom, and just take it step–

MOM: NO! I’m going now. What’s your problem Sue? Is there something wrong with you or something? Are you going a little funny?

SUSAN: Mom, it’s dark outside. It’s Christmas Eve. I just checked on my phone. It’s 3:30 in the morning, and it’s minus 16 degree Centigrade. We can’t–

MOM: No it’s not. Don’t be ridiculous Sue. It’s 3:30 in the afternoon, and I’m going, and that’s it. For the last time, are you coming or not?

SUSAN: No Mom. I’m going back to bed. (Susan walks back into her room. Gets in bed with her galabiya on, and switches off the light. Mom comes back into the doorway of Susan’s bedroom in silhouette.)

Mom: So you’re gonna stay here and sleep Sue?

SUSAN: Yep.

Mom: You’re just gonna stay here?

Mom: Yes.

Mom: Well, Sue, I think it’s a bit ridiculous. I think you should come home.

SUSAN: I think we are home, Mom.

MOM (shouting): What do you mean, Sue? We’re not home. This isn’t our home. You’ve lived at our home. It’s a big house. You had your own bedroom, I had my own bedroom. This is not our home. I can’t understand why you would say a thing like that, you know? I’ve been downstairs. There’s nobody at the desk. There’s no one here. If you wanna stay here and live like that, fine. But I’m not. I’m gonna get in my car and I’m gonna go. Sue, you’ve got a bad cough, and you should be home. I don’t really want to leave you here like this. You should come home with me. But if you insist on staying, well, there’s nothing I can do about it. (Mom picks up a 10-inch long flashlight that’s sitting on the corner of the dresser beside the door.) I’ll take this with me so I can see when I get outside.

SUSAN (calm, monotone): Mom, it’s minus 16 outside. You can’t go outside Mom.

MOM: Sue, I’m going and I mean it. I don’t care if it’s minus a hundred outside. I’m going home and that’s it. (Mom switches on the flashlight and shines it on Susan in the bed.) Well, at least this works, thank goodness. I’ll take it with me. Are you sure you’re not gonna change your mind and come home, Sue? I don’t want to leave you here, but I want to go home and I’m going.

SUSAN: I’m staying here Mom.

MOM: Suit yourself Sue. (Mom turns and leaves. She marches off stage left, we hear her going down unseen stairs. After a few seconds she calls up the stairs.) Sue, the door’s locked. Where is the key to the door, Sue?

SUSAN (coughing): I don’t know Mom.

MOM: Sue, if you don’t tell me where the key to the door is, I’m gonna’ break the window. (Sound of the flashlight hitting the window.)

SUSAN (sits bolt upright in bed, shouts): No Mom! Please don’t break the window!

As Susan says “break the window,” we hear the sound of breaking glass and the stage goes black.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Mom didn’t actually break the window, that’s a dramatic device. But she did strike it with a wooden Christmas statue. And the rest of the conversation is real. It went back and forth for two hours until I finally bundled us both up (with Pia Roma, Mom’s cat, stuffed down the front of Mom’s winter coat because we couldn’t “leave the cat behind”), and drove three miles down the road and back. Here’s a 90-second clip of the tone before and after:

How did we eventually get to the calm in the last bit of the audio? By using the concepts I later used to develop the BANGS model outlined at these links:

Watch the full one-hour BANGS webinar here (it’s free)..

What I learned is that people who live with dementia often respond in predicable ways, and we can calm situations by 1) understanding their responses are normal and 2) de-escalating situations rather than fuelling the fire. Awareness is the first step. Here’s a tool to help develop it.

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Image copyright: szefei / 123RF Stock Photo

Mom’s big red brick house on the hill was like a Christmas card in winter.

In 2010 we spent lots of time in the living room by the fire and the tree, which together created as beautiful a country Christmas scene as might be imagined. I built a snow woman, as I did every year when the weather cooperated. This time I piled too much hair too high on her head, and she was soon decapitated by above-freezing temperatures. She couldn’t be repaired, so I transformed her body into a heart that stood steadfast just outside the window long after I returned to Dubai. The birds sometimes perched there before going to the feeder, Mom told me when I called from the other side of the world.

Who needs a head, when you’ve got a heart? December 26, 2010.

Sometime between Christmas and New Year’s Eve we joined friends for dinner and then dancing – in their kitchen. Mom, as always, was the life of the party.

“Blond and red-haired chicks,” the country singer sang.

“Red haired chicks – that’s me,” Mom said to our friend John.

“You were a redhead?” John replied.

“Oh yeah, I was a redhead,” Mom quipped. “One of the wild ones.”

“I should have known,” John said. Then he grabbed her hands and they started to dance.