Mom is at my place for the afternoon and evening. Her friend Gaby isn’t with us (as she usually is when Mom dines with me), but Mom’s 80-year-old brother Eddy (who has also begun to show signs of dementia), and his daughter Catherine are. They’ve made the three-hour drive from Mont Tremblant to North Hatley for an overnight stay. We have a nice afternoon making small talk, playing a game of “poches” (there are no rules and Mom wins every time), and just being together.
Dinner comprises barbecued chicken from J. LeBaron’s grocery in the village, broccoli with a squeeze of lemon (as opposed to a pat of butter), and honey grapefruit rice (my own yummy recipe). I cut up Mom’s chicken for her; she eats well. After the meal, out of the middle of nowhere, she despairs:
“I don’t know what’s wrong with me. I can’t do anything like I used to. I’m not the same anymore.”
Hold on. Where did those rational thoughts and complete sentences come from? Mom has been talking in alphabet soup recently, I haven’t heard her make much sense in weeks. Clearly this is one of those breaks in the Alzheimers clouds: a moment of clarity amidst the chaos and confusion. Well-intentioned brother Eddy and niece Catherine try to buoy her flagging spirits.
“What do you mean? You’re fine. You won all the games this afternoon. You’re doing great.” Eddy is ever supportive.
“Yeah Patty. What are you talking about? Everything’s okay. You’re amazing.” Catherine chimes in.
“No I’m not. I can’t do anything like I used to. Something’s wrong.” Mom’s voice cracks. She’s about to cry. “I’m not the same. I don’t know why and I don’t know what to do.”
The thing is, she’s right. She’s not okay. Far from it. She’s living and dying with Alzheimer’s disease. That’s the truth of it. And even though she doesn’t know it, at some level she does. Somewhere inside lies a deep pool of knowing, and I’m about to see her reflected in it. I push my chair from the table, and start to get up.
“Come on Mom. You can help me with the dishes. Okay?” I say.
“Okay.” She whispers. The kitchen is familiar territory. The sink, drawers, cupboards, and counters feel safe. She’s helped me with small tasks before; she knows instinctively how and what to do. But she doesn’t head for the dishwasher. Instead, with my help, she lowers herself (turn, reverse, sit!) in the rabbit-eared antique chair I brought from her own kitchen in her big red brick house on the hill to this rented one of mine.
“I’m so tired, Punkie.” Her mouth says the words, but her spirit is at the helm.
I know immediately she’s not talking about being physically exhausted, or about wanting to go to bed. She’s telling me she’s worn out by this illness, and everything that goes with it: the confusion, the indignity, the anger, the frustration, the shit–both literal and figurative–etcetera after crushing etcetera.
That’s what she means; it’s as clear to me as blue sky on a cloudless day. It’s no wonder she’s distraught. She feels like she’s caving in on herself. And all I can do is stand there and watch, helpless. I squat in front of her; take her hands in mine; look her straight in the eye.
“I know Mom,” I say.
“It gets hard at the end.” Her voice falters again.
My heart splinters. I don’t even try not to cry.
“I know Mom.” I repeat and squeeze her hands gently; I don’t want to bruise her. “Mom, you can go home when you want. You and God can decide when. Are you ready to go now Mom?”
“I don’t know. I have to go to the peeps.” Her physical needs interrupt our metaphysical discussion.
“Okay Mom. Let’s go,” I say.
We shuffle out of the kitchen, past Eddy and Catherine who remain at the table chatting.
“We’re going to the peeps.” I state the obvious. “Back in a minute.”
Maneuvering Mom into the bathroom and onto the toilet is a bit like backing up a semi-trailer–it takes practice and patience. I’ve got lots of both under my belt. I remove her soiled “pad” (a euphemism for adult hygiene product/diaper) turn on the tap for inspiration (which produces the desired result), and wait ‘til she’s done.
Then I clean between her legs, help her to her feet again, put on a new pad, and pull her pants back up. I’ve never changed a baby before, but I’ve changed my mom. How ironic.
Bodily functions out of the way, I check to see if her deeper /higher self is still with us.
“All good Mom?
“Yeah.” She pauses. “Punkie, I’m tired. But I don’t want to go yet. I’ll miss you. We still have lots of fun together.”
There goes my heart (for the umpteenth time), and on goes the tap (not the one in the sink). I wrap my arms around her.
“It’s okay Mom, you can decide to go whenever you want,” I reassure her through my tears. “Gran and Auntie Lee and Auntie Jean’o are waiting for you. They’ll be there when you get there. It’s okay. You and God can decide when it’s time to go. It’s up to you.”
“Ok Punk,” she says.
The clouds close ranks, and the shaft of light retreats into the heavens behind them.
“Do you wanna’ wash your hands Mom?”
“My hands? These are my hands.” She holds them out, palm upwards.
“Do you want to wash them, Mom?”
“Where?” She looks at the sink, touches the tap. Neither registers.
“In the sink, Mom.”
“Where’s the sink?” She’s still looking at it, with her hand on the tap.
“This is the sink, Mom,” I touch the cold porcelain. “Can I help you with the tap?”
“Okay,” she says.
I put my hand on hers and together we open the flow.
July 23, 2013
My Alzheimer's Story 
When I read this, i could feel what your mom was saying.
They are some of the same things that Deb and i have been through and will go through again i am sure. Deb has said she was tired, i don’t know what to do, and once said “i going to die”, i don’t emember things, i don’t know how to do this anymore, what is wrong with me. All of which breaks my heart. I just hold her, tell her i love her and will always be with her. I know that they know something is wrong!
I do look for the breaks in the cloud but sometimes they feel harder than when it is cloudy.
🙂 ❤
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“I do look for the breaks in the cloud but sometimes they feel harder than when it is cloudy” Yes, Wilbur, you are so right: it’s a double-edged sword, and a really sharp one at that! But you are doing exactly the right thing by holding her, telling her that you love her and that you will always be with her. What a comfort you are, what an angel! Both you and she are blessed 1 million times over, even though it’s heart-wrenching and heartbreaking. Just being in those precious moments is a great gift. Thanks for everything that you do ❤
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These little breaks of clarity are so very rare precious and heartbreaking and don’t last for long xx
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I agree Yvonne, they are “so very rare precious and heartbreaking,” and that’s why we must really live and appreciate them as their happening. And I think when we do that, sometimes they are less fleeting, and more enduring. I had such moments with my mom until the very end, and was grateful to be with her when she breathed her last breath – also heartbreaking, and precious as well. I wrote a poem about it here. thanks for sharing your experience XOX
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I remember when my dad told me that, with a difference, he was on meds to somewhat keep him alive that he said he was going to tell his doctor he was going to quit taking, only problem was he was mixed up as to which doctor, made for a bad situation
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Yes, sometimes it can be confusing and hard to separate what is “real” from what is imagined.
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Made me cry. My mother’s anguish is all too real, and we often talk about the “clouds” that she feels are closing in on her. Our tools of communication are changing from words to energy, from lips to eyes. Sometimes she just leads me to something and points, or stands there, wishing I could guess what she wants to tell me. It’s not easy to keep it positive, but I’m always glad when I’m able to, because we either end up laughing or crying. Neither is wrong or better; I just want her to remember the feeling of laughter, because laughter feels so healing.
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Yes and the more you can stay positive and appreciate the moment the better because how you feel will increasingly affect how she feels ❤ You are doing a great job and so much good energy/grace is being generated.
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