Tag Archives: Alzheimer’s

red

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The last place my Mom and Dad lived in before he died was out in the country, near Lake Fork, Texas. There was a big plate-glass window in front of which Dad had hung bird feeders. Among the many birds who winged in were cardinals, crimson feathers startling, vivid, unforgettable. Whenever I see cardinals, real or otherwise, I think of Dad, I think of that place, a home place for him, a vision he’d worked toward all his life. And I think of my mother, too, acquiescing to him, sharing his dream. What was hers?

In Pier One yesterday, caught like a magpie by all the Christmas glitter and glow, I saw LED candles with tiny red cardinals on them. I had to stop and touch the glass. My throat got tight as I thought of my father, but also of my mother, 13 years down with Alzheimer’s, bedridden, incontinent, unable to turn over or ask for what she wants, able only to croak sounds and smile her occasional but still lovely smile. I didn’t buy the candle. I bought five small, red clip-on cardinals, glitter on their tails and shaken like salt in among their color. Foolish, I thought as I checked out. She won’t see them.

But today I go to place them in her room, among the bits of holiday tinsel I put up even though she doesn’t know. My heart hurts, my throat is tight. I think I summoning Dad to bring her on home.

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dark mother

leavesm

Why do I not write here anymore, someone kind asks me in a comment. I lost energy in the too-long journey of writing the current novel (not finished). I lost a little hope about life (regained). I thought, what does it matter what I say (whine).

Today, I want to share a lovely, deep piece about winter from Dunya. One line of it reverberates in me…..a last savoring of our mother. Her mother, too, has Alzheimer’s. My mother, in her 12th year of it, lives and breathes, but little else.

I share this with you in an embrace of the dark and fine, fine writing……leavesm

 

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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nellie

indexI can’t cry for Mother anymore. I can’t remember her when she wasn’t this shell. I can’t remember her when she loved clothes and shopping, always kept chocolate somewhere, would go off with me if I needed a partner, was a natural engineer at repairing just about anything, loaned her money without a backward look to her loved ones.

She has a friend from forever. Their fathers were best friends. Nellie has always called Mom several times a year and always sent cards. She calls on Mom’s birthday, and this year, my mother can’t even parrot hello into the phone, doesn’t recognize what the phone is, or realize I am asking her to speak into it.

Nellie tells me she has breast cancer and that she is going to the doctor. Later I find out from her son she has 4 to 6 months and is refusing chemo. A fair choice, I think, cool in my analysis like autumn rain, and wishing my Mother’s end was as clear. I go about my day the day I learn the news, and I feel sadness gathering in some far distance in me. It’s pushing zinnatears up. I sit in the car after some errand and weep for a long time. Hard tears. Ones that tear. For Nellie. For life. For its inevitable end. But also for Mom. Somehow I can weep for her through Nellie.

birthday

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I hostessed a birthday today. I’ve put together a birthday for Mom for more years than I can remember. I even used to fly to Reno, when she lived there, to do it. Today, the flame on the candle burned brighter than she did. She’s in her 10th year of Alzheimer’s. We woke her from her morning rest to have lunch and birthday. She started to go back to sleep as we sang the song.

DSC_1854night,lt. exp_3462So I packed away candles and food and the table cloth I brought to the place where she resides now. And I watched the aide put her down for a nap, having to diaper her like a child. And my daughter climbed into bed with her to soothe her, for she’s brittle now, must be moved by others.

Her oldest friend called, a quaver in her voice, as she wished Mom happy birthday on the speaker phone and told her she loved her. My son-in-law said, you still have best friends. She didn’t answer. I’m not certain what of the conversation she heard or if she realized it was for her.

What is the meaning of a life? How small it burns at the last. How small we become, feeble ghosts in our own bodies. I do not complain of this. I simply DSC_1854night,lt. exp_3462observe. I’m glad my daughter climbed into bed with her. That’s a meaning of a life, isn’t it?

Happy Birthday, Mom.

i keep saying good-bye

IMG_0277_2I’m straightening Mom’s room at the place which cares for her. She’s in year 10 of Alzheimer’s, healthy but unable to do a single thing for herself or communicate clearly. I’ve made her room pretty, but more and more I take things away and store them: the costume jewelry someone gave her to play with, the received cards she so loved to tear to pieces and then rearrange, clothes which are too difficult to put on her. If I bring a plant, she doesn’t notice it. I gaze at the things I’ve selected to comfort and define her. Without her zest and vitality, their definition is less and less clear. cameilla

promising

Some days are hard days, lost days where I feel I belong nowhere. They usually occur the day after I go out and visit my mother, who has Alzheimer’s. The push with which I begin the week stops still that day I visit, and the next day is hard. I sat out in my back deck recently, feeling things that don’t feel good, straining to remember various spiritual mantras, this too will pass, etc., and I remembered the one about finding things to be grateful about. This day, it seemed there were only things very small: 7 limes on the lime tree, a slit in the agapantha pod promising the purple blossom would show eventually, and carpenter bees, who love the cedar trim on the garage, and every spring lumber in and drill the perfect little holes in which they live. I like watching these bees. They’re big, but they are peaceful. They  remind me of sightless helicopters when they come home to their hole, humming around it, many false forays before somehow they climb in.

False forays, like this day when I can’t find meaning in my life. I can’t find the entrance to my inner home. I can’t summons passion, but counting the limes, seeing the agapantha, the bees,  quietens discontent enough to go inside and sit down to write at these stories I make up about a family that lived in the late 16th and early 17th centuries. Joy cometh in the morning, the prophets say, and by afternoon, the mood has passed. There isn’t joy, but there isn’t despair. I guess our lives are designs only seen later. My mother’s life has impacted many, her pebble thrown into a pond, the ripple outward. Does the ripple stop? For I am impacted by her, and I impact others who impact, on and on it goes. The hum of bees comforts enough to bear all I don’t understand. And I know joy comes some mornings.

love stories

There are three love stories around me…..

Second Grandson, 15 months, has fastened onto a white bear with a soft, soft fur and dangling legs and arms. He carries the bear around everywhere, tries to share food and water with it, wants it in the crib at night for sleep. He talks to it in the not-quite understandable burble that is definite conversation,  has all the tonal inflections and facial expressions of  conversation. It makes my heart glad that his little heart is large enough to love something tenderly already, to take care of it, to need it……

Second Cat has a cat’s fishing pole with a hodgepodge of old ribbon and who knows what that I’ve fastened on the end when the feather died a grisly death. Now there is a definite hierarchy in our house. First Cat decides who gets on the bed to sleep with us, and it is seldom Second Cat. But I’ve been noticing that Second Cat stretches out in the hallway nearby, and in the morning, the fishing pole, which had been propped up against a corner, is under her. She often brings the fishing pole with great yawls for us to play with her, and she keeps it by the food bowl, where both cats keep all important toys, so I know fishing pole, whom I call Baby, has importance in her life. But it struck me the other day that she was sleeping with Baby because she wasn’t allowed on the bed with everyone else. She might not have us, but there is always Baby.

Finally, Mother, who has Alzheimer’s, has a white long-haired chihuahua named Zoe. Zoe goes with Mother wherever she goes, and Mother shares food and kisses with her all the time. Zoe will stand guard while Mother putters around and will come to fetch one of us if Mother is too long out of sight. How Mother loves that dog, frets and fusses with her. Mother knows the dog’s name when she doesn’t know any of ours. There is real caring between them. I feel like Zoe is a little animal spirit sent to oversee. It gentles me on days when I don’t feel gentle.

We all need things to love and fuss about, don’t we? We need to feel cherished and to cherish in return. I often write about kinds of love in my novels. My conclusion is: tenderness is best. What’s your love story? What’s your conclusion?

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…………….

shepherd

They tell me she’s using the pillow that hung from a cord on her doorknob as a purse these days. That, and the zipper case that holds her Bible. Since the pillow has a Bible verse on it, the news comforts me a little….I like to take it as a sign that the Lord, whom she always believed in, is looking after her. She likes to have both of them with her. They have a wheelchair for her on excursions. It tires her so much to walk very far now. Otherwise, they tell me, she’s healthy. I’m on a kind of sabbatical, so I won’t see her until August, when I return to Houston. I left her easily, the on-going changes in her having made me tired and impatient. The Lord is my shepherd, says the pillow. I hope so. And I need some shepherding, too….

Do you have a family story, maybe lovely, maybe not? What an interesting and often exacting conundrum life is….