Sunday, July 28, 2013

"How's Your Mom?" Various Answers to a Difficult Question

Lately, when I'm asked how Mom is doing, my answers fall on a spectrum between "no detail" and "lots of detail," depending on how vulnerable I'm willing to be.

She's fine [change the subject].

About the same, no change this week.

[Big sigh] She seems peaceful and comfortable; still in good spirits.

She's minimally responsive: she smiled when I visited her briefly last week, but she can't say more than a few sporadic words.

She was moved into a new room about a month ago, outside of the special care unit. No more locking double doors between her room and the nearest exit. She doesn't have a roommate, so it's quiet and easier to visit. Mom's bed is next to a window; the room is bright with natural light. Her room overlooks a grassy area behind the nursing home and there's an oak tree outside her window. All the colorful artwork we've given her makes the space cheerful.

She's still losing weight. The nurses gave her an air mattress a few weeks ago so she doesn't get bed sores. To keep her from rolling out of bed, there are inflatable guards on either side of her (like bowling alley bumpers). With her sheet and cotton blanket spread over her and both the guards, her body disappears under the bedding. When she moves, her arms and legs look so, so frail.

It's been a month or more since I could help feed her. She having more difficulty chewing and swallowing so her food is ground up ahead of time and fed to her by a nurse. She can't drink from a straw, so even giving her a sip of water is tricky. I keep extra napkins nearby and apologize every time I spill cold water down her chin onto her neck. She giggles.

She still loves to have her hair touched. When I visited last week, I combed her hair. Without moving her head from the pillow, I pulled gently through tangles, moving her hair away from her neck so she wouldn't feel so hot. I kissed her forehead. I blotted her collar bone with a wet paper towel, dabbing at dried ice cream or pudding from an earlier meal. I held her hand. She flinched and twitched often (some kind of tic that began early in her diagnosis). It's hard to tell if skin to skin contact is soothing or startling (or neither).

This stage of Alzheimer's, the bed-ridden, hanging-by-a-thread stage, seems to be lasting a long time. I agonize over saying goodbye after every visit, wondering if it will be my last. I hold her eye contact if I can, and repeat "I love you," hoping she'll say it in return. She doesn't. I know that doesn't mean she doesn't love me, but I miss hearing her say it. I wonder if she recognizes me, or thinks I'm a nurse who's really clingy and won't leave the room after making my rounds.

It's hard to be patient. I'm no longer wishing for recovery. We passed the point of no return years ago. But I know I take it for granted that I can swing by the nursing home, visit for 30 minutes (long, painful, tearful minutes when the only voice I hear is mine) and then leave her world and reenter my own. Visiting is never a neighborly chat over the garden fence; I brace myself to see a very old woman who vaguely resembles my mother.

I feel very superstitious. If Mom comes to my mind in a strong way, I wonder if she's breathing her last breath. But I know more than likely, there will still be multiple visits as her body slowly, slowly, slowly succumbs.

It's not her time yet. I don't believe she's suffering, I don't think she's in pain, but I also don't think she's aware of the sun rising on another beautiful summer morning. It's hard to imagine that she's happy or content. She's not dead but it's hard to call her current existence "living." She still has visible reactions to voices, faces, words and sensations.

What constitutes LIFE?

It's all sacred. An infant is no less precious when all it can do is eat, sleep, cry, repeat. The difference, I suppose, is that a baby is relying on instinct until learning begins (fine motor skills, language, reasoning, spatial manipulation, etc.) Pregnant mothers love their sons and daughters long before they hold them in their arms.

And I will love my mom long after I can hold her in mine.

1 comment:

  1. As we enter yet another stage of the "Long Goodbye" with my Nana I am painfully facing the reality that she is no longer just "cute, forgetful Nana." This new stage is the hardest for me so far, and I have to admit to you, Em, that I've been in denial for years that my story would mirror yours. I've always been drawn to you, empathized, and admired the beauty of your writing as your take your journey on this uncertain path with an open heart. But I felt distant, knowing that I could not fathom the heartbreak you were experiencing.

    But Sweetie, today - at this time in my journey, on a day where my heart is breaking with the loss of yet another piece of my beautiful grandmother and I struggle to answer "How's Nana" even to myself, this story has made me realize that God has put you and your writing in my life as a significant part of His divine design. You have walked this path before me and your gift of transparency through struggle and grief feels like a lifeline to me this morning.

    Thank you, Emily. Thank you. I thank God for you...remembering you in my prayers..."that the God of our Lord Jesus Christ, the Father of glory, may give you a spirit of wisdom and of revelation in the knowledge of him, having the eyes of your hearts enlightened, that you may know what is the hope to which he has called you, what are the riches of his glorious inheritance in the saints, and what is the immeasurable greatness of his power toward us who believe, according to the working of his great might." (Ephesians 1:16-19)

    So so much love to you, your mom and the rest of your family. Xoxoxoxo