‘Who are you?’ ‘We are sisters.’ ‘Who am I?’ ‘You are our mom.’ ‘Oh sh*t.’

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Sunday means we do breakfast with the family at a local restaurant. Mom seemed to be in a good mood which always makes it a better morning for everyone. My sister, Mary Ann, and I sat across from Mom. While waiting for our food to arrive, Mom began asking a few questions. These are the ones I remember…

Mom: “Who are you? (pointing at Mary Ann and I) You look a lot alike.”

Mary Ann and I:  “We are sisters.”

Mom: “Who am I?”

Mary Ann and I: “You are our mom.”

Mom: “Oh shit.”

Mary Ann and I couldn’t stop laughing. My mom was never really one to swear but that seems to have changed over the last few years.

Our food arrives and all the chatting slows to a word here or there as everyone enjoys their breakfast. After breakfast I walk mom home. Dad and my aunt, Ann, are going to follow in the car. We get to the house and go inside. Immediately Mom asks where Carl (her husband) is. I say, “He’ll be home soon.” She heads back outside to be in the sun and wait. She wheels herself across the parking lot to a section of soil that is a mix of flowers and weeds. She wants the weeds pulled so I start that project while we wait for Carl/Dad. I get that whole section weeded and once again Mom asks where Carl is. Once again, I say he’ll be here soon.

Weeds being pulled by man for his wife with dementia
Becky Gacono/Our Journey Through Our Mom’s Dementia

We head into the yard and she finds another strip of weeds she would like pulled. I start on those. In the meantime cars are pulling in for lunch at the pizza shop next to their house. She heads back to the driveway to wait for Carl. I tell her to stay at the edge of the driveway as I continue to pull the new weeds she discovered moments ago. Of course she doesn’t listen. I see her through the hedges sitting in the driveway calling to all the people walking towards the Pizza Shop – “CARL,” “CARL.” I walk around the hedges and ask her to come back to the yard. I tell her Carl will be in his car, not walking. I tell her not to sit in the middle of their parking lot (where tenants pull in). She ignores me before asking me where the heck (not the word she used) is Carl?

I finish my 2nd weeding section and head over to see if I can convince her to wait on the porch with me. She refuses. I collect the huge pile of weeds I pulled so far and dump them into their garbage can. She is behind me. Oh look at that, she found another spot that needs to be weeded. By now the sweat is dripping off my head, down my face and burning my eyes. She wants to help with this section and leans so far out of her wheelchair I am sure gravity is about to take over and I will be picking up weeds and mom. I tell her I will pull them. I start making my third pile of weeds for the day. She rolls back to the parking lot – “CARL.”

Trash bin full of weeds for woman with dementia who says she wants them
Becky Gacono/Our Journey Through Our Mom’s Dementia

Finally, they pull in (they were talking with my nephew and his girlfriend at the restaurant). She is trying to express her frustrations that he is late but it is a jumble of mixed up words. He is trying to tell her he was talking to Matthew and Sarah – she doesn’t even try to understand. She tells him to go get changed (he is in his Sunday clothes). She tells him to hurry. I ask her why he needs to hurry and she says, “So he can do this.” (meaning the weeding I am doing). I tell her he cannot weed or do yard work. I tell her he has a bad heart. She decides to follow them inside (Thank God!). I pick up my 3rd pile of weeds and realize I have all but filled their garbage top to bottom with my weed collection. I also know I am about to explode in the heat. (Have I mentioned how much I hate to sweat!) I head inside too.

It is not much cooler inside since mom loves living in a sauna. I wash my hands in cold water and splash my face hoping it will cut down on the steam escaping my head. It does not appear to be working.

Mom followed dad into their bedroom while he is changing. I wait in the living room until I am sure he is changed. Mom has his dresser cabinet open and is rearranging things. Dad is sitting on the bed exhausted. I tell him I will bring her out to the living room and he has a sudden burst of energy as he slips by me heading there without her. HE KNOWS! I try to move mom’s chair and she slams the breaks on with her feet. She is not done rearranging. I make their bed while she works on her project. I head back to her and try for movement once again. This time it’s a go, only instead of turning around to head out of the room, she is pushing her wheels forward heading for their walk-in closet. NOOOOOO… not the walk-in closet. I pull backwards, she pulls forward. She says she wants to see something. I wasn’t born yesterday, Mary Jane. I know what that means. I am about to enter the abyss.

Woman with dementia holding up a nurses top with mickey mouse all over it
Becky Gacono/Our Journey Through Our Mom’s Dementia

And so it begins, again! I desperately do a quick search for the box full of batteries but it appears dad learned his lesson and moved them to where she can’t see them – High five dad! On this day it is the two suitcases and the vacuum. She wants the suitcases stacked and the vacuum moved. I stack the suitcases on top of each other. Now she wants to zip and unzip them. She does this a few times before moving on to the vacuum. She pulls the vacuum out and turns it 90 degrees and pushes it back. Yay, we are done! No, no we aren’t. Pull it out again and turns it another 90 degrees. OK, you get the picture. This happens until we have made a 360 degree turn twice with the vacuum with breaks after each 90 degree turn to see if it is the way it is supposed to be. Once again, sweat is burning my eyeballs.

Woman with dementia stacking her suitcases as she says it's the way she wants them
Becky Gacono/Our Journey Through Our Mom’s Dementia

After one of the vacuum turns she hesitates for a moment and I seize it. I try to pull her chair backwards to roll her out of the closet. She slams on the breaks (her feet digging into the floor) and says, “You’re mean.” Wow, for the words that have flowed out of her mouth on this lovely Sunday, those seem so mild. She reaches for something else which took some of the weight off her lead feet and I saw my window to escape and rolled her out and into the open domain of their bedroom. She tries to say something to show she is ticked off but I keep talking about the living room, Dad, getting a drink (she didn’t know I meant for me because after this morning I need one). We roll almost past their bed before she grabs the quilt on the corner to straighten it. I have to pull it from the other side until it is exactly how she wants it.

Woman with dementia sits in wheel chair adjusting corner of bed to the way she likes it
Becky Gacono/Our Journey Through Our Mom’s Dementia

NEXT! I make a slight turn to head out the door but she sees a shirt of hers and a pair of Dad’s pants on a trunk we pass before I can get to the bright light beckoning to me from the living room. “What’s this?” she says as she holds it up in front of her. “It’s your shirt mom.” Mom – “What should I do with it?” Me – “Let’s hang it up.” I grab a hanger and we slide it on. I hang it in her closet (her cabinet closet – I am not about to open that walk-in closet door again because I know if I do and I turn around she will be right behind me). I hurry so I can get her into the living room. Too late! “Whose are these?” Me – “Those are dad’s pants. He might want to wear them later. Let’s leave them there.” She straightens them out and says, “OK.” (Hallejuah!)

Woman in wheelchair with dementia leaning over adjusting something on floor
Becky Gacono/Our Journey Through Our Mom’s Dementia
Woman with dementia holding up shirt on hanger
Becky Gacono/Our Journey Through Our Mom’s Dementia

A few more steps and we are in the living room. Dad is pretending he is asleep but I know he isn’t because when we arrive next to his recliner he is smiling. Not in a “Nice to see you two” kind of way, but in a “Hey, Becky. How was that quality time you just had with your mother?” kind of smile. She looks at dad and asks if he’s OK. I told her he is now, and ask her if she wants to sit in her recliner so she can hold his hand (as I mentioned before, that seems to be one of the only reasons she wants to sit in her recliner). She says yes. I help her from her wheelchair and she gets situated and reaches for his hand. I wipe the sweat off my face one more time, put on a Hallmark movie, give my kisses and hugs goodbye, and look at the two of them sitting there, holding hands and I realize my life is pretty darn good.

Woman with dementia asleep on couch holding husband's hand who is asleep next to her
Becky Gacono/Our Journey Through Our Mom’s Dementia

This story was submitted to Love What Matters by Becky Gacono of Annville, Pennsylvania. She is chronicling her mother’s dementia journey on their Facebook page and in a series of posts for Love What Matters:

‘Umm… your mom is sitting on the floor. She tried to get up by herself.’ ‘I’ll be right there.’

‘I see Dad wiping his eyes. I realize he is crying.’ Elderly man devastated his wife with dementia thought ‘everyone left her’

Wife with dementia ‘listens’ to husband’s story for 15 minutes before cracking a joke, which ‘gives him a sliver of hope she is still there’

‘His love for her is palpable’: Doting husband’s explicit instructions for wife with dementia’s morning routine

‘I’ll get to her outfit later’: Daughter’s humorous attempt getting her mom with dementia to the doctor

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