Tag Archives: living with Alzheimer’s

goodbye

index-002To three who caught my inner eye in Mom’s world this past year at an Alzheimer’s unit. [I moved my mother a few days ago to skilled nursing.]

Goodbye, Ruth, silver hair pulled back in a ponytail, pacing the circle the halls make, eternally looking for your husband. He’s late, darn him. I’ll give him a piece of my mind when I see him, you bet ya. Have you seen my husband? Where is that stinker? From somewhere up north in the center of the U.S., a schoolteacher I think I remember her saying. Quiet. Dogged. Determined.

Goodbye, Peggy, once an interior designer, mannered and southern to your core, kind and thin and nervous as a whippet, dressed beautifully, but more and more showing the ravage, dark lipstick spilling over outlines of lip, roots showing in dyed hair. Talking full sentences which make absolutely no sense. Well, the beans didn’t come in. They were red, you know. We tried. Did you see him? I told him it wouldn’t work. Lovely. Loquacious. Flailing.

Goodbye, Kay, whom I think of as my ghost. Vampire pale, clothes always mussed, a limp, standing in place marching or out everywhere endlessly walking with that uneven pace, latching onto people with your hand, following me, taking my arm and bumpily gliding along with me, in silence, never, ever speaking. Sometimes a fleeting smile. Eerie. Odd. Lost.

The last sight of my three is Kay draped as she is when she isn’t walking, foot forever shaking, across a couch and beyond her, Ruth and Peggy, hand in hand, tentatively heading to the lunchroom, Peggy pushing at any opening that resembles a door.

My ghost, my whippet, my schoolteacher from the extraordinary madhouse that is Alzheimer’s.

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tuesdays

It’s our usual day. She dozes on the couch most of the morning. I dress her for our outing. She’s as fragile as cracked glass, gasping and moaning at the putting on of socks, befuddled at the pulling up of pants, completely lost at the pulling over of a shirt. She can still tie her shoes.

We go out for lunch. It’s what we do on the Tuesdays when I visit her. It’s also become one of the ways I most see her decline: the inability to choose a utensil, know what a straw is, cut her own food anymore. She jabs at what’s on the plate and then opens her mouth, and it is a gamble that the food gets there. She has no preferences about what to eat, though she won’t eat what she doesn’t like. She couldn’t tell me if she did have a preference. It’s been a year or more since she’s collected enough words together to make meaning.

She still laughs. She still smiles. She is still more beautiful than any woman her age. She is willing to do what I ask if she understands it. That’s where I fall down so often, thinking she’ll understand. I’m always exhausted by my lack of acceptance as to what has happened and is happening to her and by my expectations, always too high.

Later, I make dinner, keep an eye on her as she does her rounds, from hall to dining room to den and around again. She walks carefully, so carefully, often reaching out to the wall or a chair. She runs her foot along the creases of the joined tiles. She doesn’t step, she shuffles.

I put her in pjs early, sit in a rocking chair, emotionally battered by our day, by what I see. I always try to prepare myself. I remind myself of her decline, but I am never, never ready for it. And so my mood dips in the afternoon. I hate myself for its dipping.

Are you tired, I say, more to make conversation than anything else. So often there is silence between us. She can’t talk, and I seldom chatter, but chatter is what is needed these days, a light ongoing constant from the only one of us who can do so, but I’m bad at it. She looks at me. She answers with stunning clarity: You’ll never know how tired I am.

It’s the first sentence I’ve heard in over a year. And before I can even respond, she’s back to her shuffle through the hall, the dining room, the den.

I sit where I am in shock. Yes, everything is hard for her, isn’t it? Moving, dressing, eating, getting up and down from a chair, walking, recalling, associating, living. All hard now.

I must remember this, I tell myself. But I won’t. I’ll be as surprised and upset next week as I am this week. Later, I think of the poet Mary Oliver:

Wild Geese

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting
over and over announcing your place
in the family of things.

 

The family of things….her place in it and mine, her despair and mine, her love and mine…………….

I miss her vanity

 

We’ve come to see the movie Sex and the City. She is enjoying it. I am, too. She had a hard time, like she always does, climbing the movie theater stairs. Too dark, and she’s lost her sense of depth perception, so that every step is a slow, careful, am I falling over the edge one. Later, we’ll go eat dinner, and we won’t talk much. The light from the screen is strong enough that if I turn to my left, I can see her. I turn and think, I don’t want to lose you. Now that we’re all losing her mentally (she has mild Alzheimer’s), I am much more aware of the bigger and final loss to come. All the old hurts and grievances on my part just don’t matter anymore. I miss her vanity. She could never pass a mirror without admiring herself. I miss her dedicated shopping. She could shop in high heels, going through every store in town, until I, in flats, had to beg for mercy. I miss her lies. She would just out and out lie about the oddest things. I miss her orderliness. She could fold a circus tent into a thimble and always sniffed at my messiness. I miss her coldness. My sisters and I always swore that if we murdered our husbands, she would come over and calmly cut up the bodies and put the pieces in freezer bags and tell us to stop sniveling and get the blood cleaned up. She holds my hand now when we go out into the world. She had another side: charming, warm, fun, curious, practical, generous. But it’s her faults I miss so much.

Later, I think about the movie and its final reunion scene with the four friends and various husbands and children. There are no parents at the table. No siblings. Just these resilient four and their loves. I realize that Sex and the City always cut out the family in the telling of the tale, except for Miranda’s mother’s death and a scene or two with Steve’s mother. Oh, and Charlotte’s mother-in-law, Bunny. It’s like these four sprang forth fully formed from Zeus’s head, enscounced in New York, living the dream. Here I am in my hot humid city down south far too plump for designer clothes with my patchwork career and surrounded by family and sitting in a dark movie theater with my dotty Mom. Living my dream.