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Conversations with Dementia: The Leaky Kitchen Sink

The sink is leaking. I stopped Michelle from pointing it out to Mama this morning just as she opened her mouth to repeat what Mama, thank God, didn’t hear the first time. After dinner, Rebecca and I notice there is water puddling in the cupboard under the sink. While Mama gets ready for bed, Rebecca and I clean up it up and take the linoleum liner out to the deck so the cupboard can dry. Mama comes in, and we hustle to get it back together so she won’t notice, knowing she will obsess over it and she has already had an upsetting day. But we inadvertently leave a basket of cleaning supplies in the sink and it’s too late to move it without being obvious. We aren’t worried, she is just heating her rice bags in the microwave and has no reason to walk over to the sink. She walks over to the sink. “Damn it,” I breathe. Rebecca tells her it is leaking a little, but we are taking care of it.

“You don’t know what needs to be done,” Mama snaps, “turn off the dishwasher!”

It is clearly the sink faucet that is leaking, but Rebecca obliges.

Rebecca says she will call her plumber. She tells Mama he will probably call in the morning. She goes home and I go downstairs.

I return upstairs when I hear Mama in the kitchen. Wearing her nightgown and walking shoes, she has her head under the sink peering around with a flashlight.

“You didn’t put the bucket in the right place,” she says.

“We put it the only place it could go and still catch the drip, which it is doing,” I say.

“And the pipe is wet,” she says.

“Yes, that’s why there is a bucket.”

“We should turn off the water,” she says.

“It’s just a slow drip,” I say. “It will be fine.”

“And the bottom of the cabinet needs to dry.”

“That’s why the linoleum is outside and the cupboard doors are open.” I tell her the plumber called and will come on Monday. “He said we did everything right. It’s not an emergency, the bucket will catch the drip until he comes.”

“I thought he was going to call tomorrow,” she says.

Tomorrow I’m going hiking.

Worrying in a Snowstorm

It snowed last night and it’s floating lightly down still. I feel enveloped in beauty and solitude. I haven’t seen Mama since Friday and now it’s Wednesday. I was sick Saturday and I didn’t want to expose her on my way to Seattle for childcare on Sunday. She’s expecting me today and I have no way to let her know I’m not going to venture down the hill. We do need to get her a phone; I’m sure she feels isolated.

I go for a walk in the woods leaving virgin footprints on the trails, but for the deer and rabbit tracks. It’s a wonderland in black and white. In mid-afternoon, though, the weak sun breaks out, melting the sidewalk and steps to the carport; and, according to the forecast—which is not necessarily trustworthy, since it missed the snow event entirely—the temperature is to be above freezing for a little while. I decide to try driving down the hill just before early dinner at the Manor when Mama will be up from her nap.

Rebecca checks in to see if I have been yet. I tell her I’m going shortly. She texts again. Mama has gotten an aide to call Rebecca on her cell phone so Mama could talk to her. She’s “worried sick because no one has come,” Rebecca texts, adding an eye-roll emoji.

Skidding in the driveway, I get to the road. It is not clear, of course. It may not melt for days at the curve under the trees with the temperature in the twenties at night. I have all-wheel drive, but my car is old.  This was a bad idea. When it comes to driving in snow, I’m a worrier too.

When I reach Mama’s room, she practically falls into my arms.

“I was so worried!” she exclaims.

“That’s why I was staying home,” I say. “I thought you would understand I didn’t want to come down the hill in the snow.”

“Have you been home?” she asks.

“All day,” I say. “But you told Rebecca you were ‘worried sick’ so I decided I would venture out. And I wanted to see you,” I add belatedly.

“But I thought you were coming back from Seattle today.”

“I came back yesterday, Tuesday, like always. I left early, in fact, because of the forecast.”

“I didn’t know that,” she sighs.

Rebecca tells me later she told Mama yesterday I would be home last night, but Mama forgot. When Rebecca told her I was “on my way,” she thought she meant from Seattle, so she hadn’t stopped frantically worrying even then.

And she had thought Rebecca was going to the dentist at eight o’clock, twenty minutes away on two-lane roads; an appointment Rebecca canceled. “I had visions of you both stranded on the road, sitting in your cars freezing!” she says.

“You only have to remember one thing,” I say, knowing she won’t: “neither of us will drive out of town in snow and ice.”

I can’t keep her from worrying, she’s been doing it her whole life. But dementia exacerbates it and I will drive myself crazy trying not to be the cause of it. I don’t know if a phone in her room will help or not. I can think of a dozen pitfalls: she won’t hear it ring, she won’t take a nap for fear of missing a call, she’ll fall hurrying to get to it, she won’t remember how to use it, she won’t be able to hear, she’ll misunderstand, she won’t remember, . . . I don’t know what to do. I guess what we’ve always done, my father too: let her worry. It makes my stomach hurt.

Shopping: A Special Place in Heaven

October 2014

I hate to shop. Mama loves to shop. She’s a 98-year-old clothes horse. She bought “well-made” clothes from places like Frederick & Nelson (Seattle’s now defunct subsidiary of Chicago’s Marshall Field’s, also gone). F&N was Frango Mints, the basement Paul Bunyon Room with hamburgers and ice cream sodas, and the animated windows at Christmas of my childhood. It was the top floor Tearoom with white tablecloths where I met my mother for lunch when I was in college. It was also the home of the well-made if not faddish clothes she bought for me and my sisters on our annual school shopping trip to Seattle.

“They just don’t make clothes like they used to. They don’t last,” she told me the other day, for the 4 millionth time. “No one cares if they last 40 years,” I’d said. Mama keeps her clothes—almost every purchase she ever made—in three large closets, three dressers, a cedar chest, and plastic boxes under the bed. Her closet shelf holds dress shoes in their original boxes, relics of the days she wore anything other than sturdy-soled Merrill’s black or brown walking shoes. The rod is filled with dresses, jackets, vests, and fancy blouses she hasn’t worn in a decade or more. In the guest room, even older ones are in plastic garment bags.

She’s been on the hunt this fall for shoes, a warm jacket, and a sweater to replace the Icelandic knit that fell apart winter before last. She brings her purchases home, then takes some or all of them back. It’s a familiar pattern, dating back to my childhood. Michelle took her jacket shopping last week, putting several on hold, then Mama dragged me to the store to see what I thought. She tried on three styles, three sizes of each, with much discussion of the various colors and hats she owns that might go with each. She bought one. She returned it two days later. It wasn’t warm enough.

She finally decided on a pair of shoes—of the six pairs she brought home two weeks ago. When we go for a walk at the Nisqually Wildlife Refuge, she doesn’t wear her new shoes. Apparently the old ones are good enough. I don’t ask why she got new ones, she can’t answer why questions.

After the walk, we go to REI to look at jackets. It needs to be water resistant, although she no longer walks in the rain. It needs to be big enough to wear over two sweaters, but then it’s too big if she doesn’t need two sweaters, and the sleeves on a jacket that large are too long, which seems to outrage her. She got a down jacket I am sure is warm with modern materials, but because it’s not weighty, I know I will be returning it.

Today Michelle takes her to the outlet mall to look at sweaters. She comes home with one, along with a pair of wool pants. If they aren’t wool, they aren’t well-made. She refuses to have pants custom made because she doesn’t want to pay for it, but every year she drags Rebecca (who has warned me against engaging) in the search and failure to find a pair of pants that fit her specifications, including nothing tight around her abdomen, so she buys them so big they droop around her hips.

“It’s not what I was looking for,” she says of the sweater. “It isn’t warm, and it doesn’t close in the front, except for two hooks.”

“Why did you get it then?” I ask, stupidly, knowing she can’t answer why questions.

“I thought it would look dressy with black pants,” she says.

“It would,” I agree. I should not have asked if she needs another something dressy to wear places she doesn’t go. Of course I do anyway.

“I wonder if I have a hat that matches?” she says, ignoring my question.

“It’s blue and black. You have a blue and black wool hat,” I say.

“But is it the right blue,” she says, more of a statement than a question. “Is it a summer sweater, or a winter one?”

“It’s winter colors and summer weight,” I say, trying to answer her questions now without the commentary in my head, pretending I am a witness in a trial, which it feels like.

The next day I’m at lunch with a friend when Mama calls to tell me about more sweaters and pants she and Michelle found that morning. She asks if I could take her back to the Pendleton store to look at another sweater she hadn’t gotten. Two days in a row? I groan soundlessly. “Yes,” I say, brightly.

“I don’t know if I look good in stripes,” she says when she tries it on for me.

“It looks nice on you,” I say, “but what do you want it for? This is more like a jacket and I thought you wanted something warm and cozy for in the house.”

“That’s right,” she says, remembering her mission.

She tries on a burgundy cardigan and the sales woman points out the mirror. “I can’t see it,” Mama tells her.

“Well, how does it feel?” I ask.

“I never liked red,” she says.

“What matters is how it feels,” I say. She takes it off.

I feel amazingly patient. She likes to shop. She likes to buy stuff she used to need. I will get my reward: there will be no shopping in my heaven.

I find a wool cardigan she hadn’t been shown this morning. Zippered. Pockets. Even has an Icelandic-type design like the worn out one. “It’s perfect,” I tell her. She decides to get it. As the sales woman puts it in the bag, Mama says, “I can return it, can’t I?”

From now on, Rebecca—cut from the same cloth—is on shopping detail.

________

You can listen to me read this here!

“I’ll Eat the Chicken Wing”: My mother the martyr

November, the first year

Mama’s back has been hurting again this week. She’s been in bed for two days—days neither Jill nor Michelle were here—and suffering in nothing near silence.

After finally agreeing to a Tylenol with codeine, she feels better when I help her out of bed for breakfast this morning. Once up, though, she plunges into pitiful again, lest I forget she isn’t feeling well. She asks if I have made coffee.

“I’ve had mine,” I say, “but I will make some for you.”

“The instant is in the freezer door,” she says.

“Would you like to have real coffee?”

“Mix it half decaf and half regular instant. It will taste better.”

“Would you rather have brewed coffee?”

“It will take too much of your time.”

“So you would prefer instant?”

“Not really.”

“Then I make will make you real coffee.”

“It’s too much trouble,” she says.

I make it anyway.

 

After breakfast I suggest a shower. “I don’t want you to spend your time doing that,” she says. I sigh. Graceful, enthusiastic acceptance is not a burden, these conversations are what consume my time—and me. I read that when a person feels like a burden, they make sure they are one.

“I want to,” I say.

“Maybe I’ll lie down.”

“Wouldn’t you feel better to be clean?”

“The bathroom isn’t warmed up,” she counters, daring me to back down.

“I can turn the heater on.” I want her to feel good and I know it’s what she wants too. She can’t allow herself to be cared for, except on her own terms.

“Thank you for making breakfast,” she says, ending the battle.

 

When I go to the bedroom to check on her after cleaning the kitchen, thinking she is lying down, she’s sitting in her chair in the corner. She asks if the bathroom is warmed up. I don’t bother to remind her she didn’t agree to a shower.

I turn on the heater, and she bathes.

“Oh, that felt really good,” she admits, showered and in a clean nightgown.

“It’s okay to say yes to pleasure,” I say. “Maybe 96 years of self-denial is enough.” She laughs.

“Shall I wash your sheets?” I ask.

“Weren’t they washed not long ago?”

“I don’t know, but you’ve been in bed a lot. Now you and your nightgown are clean. Wouldn’t you like fresh sheets?”

“It’s too big a job,” she says.

“Fine,” I say, “you win.” I can’t fix her.

My Smiling Daughter

These years here with my mother have not brought the connection I dreamed of when I moved across the country. But today, as the sky lightens, I lie in bed realizing that my love for nature, and even for adventure, is born of my mother. The recognition is a beginning, and time is not up.

I rise and move to the chair in the corner of the living room. My coffee mug on the table beside me, I pick up my journal to write from a prompt to start the day. As it usually does when I follow the pen, the words come around to Mama and wondering why, for so long, we didn’t see each other. The pen travels back in time with a force that transcends conscious thought.

For decades, in cross-country phone calls, Mama greeted me with, “Is that my smiling daughter?” I don’t know why it began to irritate me several years ago, but it did.

I have heard the story of my babyhood many times over the years.

Your crib was in our bedroom. When you woke up—early—you stood motionless in the crib until one of us moved a muscle. Then you jumped up and down, rattling the crib, laughing. She decided my identity back then and she was sticking to it. I didn’t have permission to be in a funk, so I chose not to include her in my life when I didn’t tell her over the phone I was ready to strangle one or the other of my children, that their father was out of town again and I was tired of doing it all, that I was lonely, that my period had started and I felt like shit. I wanted empathy, I wanted compassion. But had I told her how I really felt in that moment, she would have been worried about me, given me unwanted advice, and sent me magazine articles, dragging my bad mood farther into the future than its natural life dictated as she tried to fix it.

One day, a few years ago, I had had enough. I couldn’t live up to her expectations and I angrily asked her to stop calling me her smiling daughter. And she did.

As I write this, I realize with a start that when I walk into her room at the assisted living facility now, and she asks who’s there, she doesn’t know what I look like. Me, her smiling daughter! Her eyes see light and dark against the opposite background, and that’s all. I’ve heard her say countless times to visitors: “I can see your shape, but not your face,” but it hadn’t crossed my mind that she can’t see my face. She doesn’t see that my face is aging, that I’m looking more like her every day. Whatever static picture of me she has in her head is all she has. I don’t know what that picture is. Am I smiling?

She did see you, my pen writes. Of course she knew I had bad days back then; but I am generally a happy person, an optimistic person. That is my identity. She has known you from the womb, watched your ebb and flow, and seen you return to your Self again and again. “Is that my smiling daughter?” was her way of reminding me of who I am. It was her way of telling me she had faith that no matter what was going on in my life that I probably wasn’t telling her, I would reach into my core and find my strength. Just as she does. It was her way of being my cheerleader, the mother I wanted.

“Is that Gretchen?” she says, unsure of her accuracy in distinguishing my voice when I enter her room and greet her. I wish she would ask if it’s her smiling daughter.

 

All the Time in the World, Part 2

All the Time in the World, Part 1

I try to remember my mother wasn’t always old. When George returned from Europe in 1946, he and Stellajoe could finally begin their life together. The world was their oyster, waiting to be discovered. . . . (Continue reading)

Part 2

December 2015

My mother’s hopes and dreams of the future are all far behind. She has no projects, save sorting her clothes—or thinking about sorting her clothes—and trying to record her mother’s story. During my childhood, she never took time for herself, developing her own interests and hobbies. “I don’t have time to read,” she would say, when my sisters and I urged her to go sit in the living room with our father after dinner so we could do cleanup without her telling us how to do it. I don’t remember ever seeing her read a book for pleasure. She dabbled with a variety of crafts in her 70s, but the idea of engaging in anything for shear pleasure wasn’t ingrained in her over a lifetime, so she didn’t stick with it then and she has nothing to sustain her now.

Her interests remain confined to the kitchen and obsessing over her health. And she can’t do much in the kitchen anymore.

“I was lazy,”or “worthless” she says when I ask how her day was. Relaxing is not okay, even when listening to a recorded book. She sets the kitchen timer for 20 minutes for a nap, as if she has something to do, places to go, people to see when she gets up. She berates herself when she sleeps through it, getting up two hours later. “I wasn’t asleep,” she tells me, as if sleeping is a personal failure.

I didn’t know that young woman, but now I know this old one better than I ever dreamed I would, and yet I can’t figure her out. After my father died, she reclaimed her fierceness, caring for herself with no one’s help. She never asked her daughters for assistance in making decisions. From across the country, I had no idea what she was up to. I read about studies, based on Maslow’s theory, showing that as people age they focus on being rather than doing. Not Mama; she still wants to do, and here I am doing it for her. I wonder if she is stingy with expressions of gratitude because she resents me for being able to do what she can’t. Telling me how to do things is a desperate attempt to stay in control; and to remind me—and herself—that she is competent.

Her dreams now are nightmares. She struggles to dress herself. She slowly stirs on the stove the maple-favored Malt-o-Meal I measure out for her the night before. She doesn’t go outside alone. She pushes her walker through the rooms of this house she has lived in for 55 years, running into furniture she once used as markers as she walked with fading vision through the rooms. She won’t move them or eliminate them to make space for her current needs; she can’t imagine anything other than the way it’s always been. The walker bumps through doorways not built for such conveyances. I smile as I see three-year-old Rebecca in my mind—who never walked but ran—racing on her short legs down the hall through the same doorway into the kitchen, running into the same jamb as she wheeled around the corner. It’s a house of ghosts, dead and alive.

My mother is utterly alone in spite of those of us walking this journey with her. Her love is gone again, forever this time. Hope is gone. All that is left is the waiting. Waiting to leave this good life she has had and has no more. And stubbornly hanging onto control, even when it doesn’t serve her. Maybe it’s what is unwittingly keeping her alive beyond her desire to be here.

This morning, as I transcribe another letter from 1944, I watch Mama over the video monitor, fumbling in her bedding to find her talking clock to see if it’s time to get up or still the middle of the night. Getting up for what? How does she keep going?

Someday I won’t climb mountains, travel alone, dream of the future, either. Like my mother, I am stubborn and independent. I have the opportunity right now to choose how that manifests itself. If I hope to be more grace-filled, more accepting of the way things are, kinder to those who care for me, I should start practicing. I probably won’t lose my vision, or be as anxiety-ridden; but whatever life throws at me, I hope I will be as brave as my mother.

“I have seen in you what courage can be when there is no hope.” May Sarton

The Unreliable Narrator

Mama has cognitive dysfunction, or brain fog. As the years go on, gradually more of her brain succumbs to the fog, while other parts continue to fight it—and me—in every way it can. While dementia is advanced cognitive dysfunction, and Alzheimer’s a type of dementia, I still don’t believe she has those more debilitating diseases. But the synaptic failure she does have brings those of us who care for her to our knees in frustration.

Arguably, the most frustrating thing is her invention of facts to help herself over the fumbling for what is lost in her short term memory. The cognitive dissonance between what she has made up, erroneously perceived, misremembered, or pulled from distant memory, and what I am telling her is truth, stresses and agitates her. She fights to reconcile them and come out on top.

“I don’t think the nightgown I had on last night is mine. It didn’t feel right. I couldn’t sleep.”

“The one hanging here is yours.”

“Which one is it?”

“It’s pink, with bright flower fabric sewn on the bottom.”

“There’s a new night aide. She said it was bright purple. I don’t have a bright purple gown.”

“You do have a purple gown, two in fact.”

“It’s lavender. Maybe she’s colorblind.”

“Maybe.”

It’s impossible to know if this conversation even happened, let alone what was said. She tells many tales I know are not true, though, and her insistence that they are decreases her happiness quotient. It’s not possible to talk her into the truth. Add to that the stories that may or may not have happened and she’s a very unhappy camper. And it’s all because she is living in a place she doesn’t want to be. It happened when she lived at home too. She doesn’t remember that.

The food is swill, though she liked it when she arrived three months ago. Everything has gravy. She hates it. We were walking the halls the other day and passed her table mate just before lunch time. “See you at gravy time,” Mama said to her. In fact, at my request, she (supposedly) hasn’t been served gravy for the past three weeks unless she requests it. But I can’t know she’s not getting it unless I attend every meal with her; I can’t rely on her to tell me. She didn’t like the food at home, either. She doesn’t remember that. True, it had no gravy, but she wanted gravy then, or sauce of some kind.

“Lorrayne told me the dessert at lunch was pumpkin pie,” Mama tells me. “It tasted like gravy.”

“The menu says it was applesauce pie,” I say. (I’m quite sure her table mate didn’t tell her it was pumpkin.)

“It tasted like chocolate cake,” she says. I roll my eyes.

I don’t know how to fix this. I know she wants to come home, because life was perfect at home. Except there was her bratty daughter, she had no visitors, she couldn’t do anything except sit, her caregivers irritated her. And she didn’t get what she wanted to eat prepared the way she wanted it, which was based on her unreliable memory of the way it used to taste.

I feel sure people think I am a terrible person for not being able to keep my mother at home.