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.

Thursday, July 11, 2013

Summer Reading

Did you ever participate in a reading program when you were a kid? Every summer I can remember, my local library chose a theme and encouraged kids of all ages to read to their hearts’ content. As if owning a library card wasn't thrilling enough, I also got star charts, certificates of completion, and lots of praise from my librarian friends (thank you Kevin, Bonnie, and Jeannie). As a 17 and 18 year old, when I worked for my local library, I helped set up the displays to entice young readers to pick up the latest glossy picture book or newest young-adult fiction. I loved that job (thank you Kevin, Bonnie, and Jeannie).

This summer, I’m creating my own summer reading program. I’ve accumulated some great books over the last year and haven’t read more than two of them. You may have noticed I haven’t blogged about reading in ages.
So! To motivate myself, I designed a little book report template. I'll use it to share my reading progress on the blog. Here’s what is in my to-read pile this year (this will take me longer than the summer, I’m sure). 

I’ll share a book I finished recently in my next post to get the ball rolling. Oh, and new rule: no more book purchases until I make some headway. Seriously.

What’s on your summer reading list?