This photo was taken last summer, and it's typical of a visit with my sweet Mama. During the day she sits quietly in the lobby with the other residents. I can no longer get her to look at up at me, so I get down on my knees to look into her eyes, to talk to her.
I usually start with "Hi, Mommy," over and over, until she will finally look at me, for a split second, before she looks away. She grabs my hands, and holds on very tight, then starts talking. She's incoherent and agitated, almost yelling "Dah DAH DAH DAH." It sometimes comes out as "DOD DER" and it is my own imagination—and flicker of hope—that she is saying "daughter-daughter-daughter."
She becomes increasingly agitated, usually, and starts with a few choice words that she picked up from the other residents. "No! Dammit!" Yikes, she'd be mortified if she knew she was swearing.
So, I get her into a tailspin, and then I... don't know what to do. She's off and rambling, and we watch for awhile, and then I kiss her cheek and tell her I love her, and we wander away, leaving her, safe with the nursing home staff, hoping that she'll calm down pretty soon.
Sometimes the idea of riling her up and then walking away is too much, and I just go look at her. I may pat her shoulder or head, and stand around for a few minutes, kiss her cheek, and leave.
While I don't discourage friends and family from seeing her—I would never deny someone from visiting her—I also no longer encourage it. I have watched her progression, and developed a certain immunity to feeling devastated every time I see her.
On a selfish note, it is very painful for me to witness loves ones visiting her. While I can say, over and over, "she will not recognize you," or "she no longer talks," people will inevitably tell me they understand—and then tell me to tell her hello, or to ask her if she remembers this or that, that happened when they were kids. I've walked loved ones through the nursing home corridors so many times, giving them stronger and stronger warnings on the way in, "This is going to be bad, ok?"
And then, I stand back and watch them try to talk to her, and I watch understanding dawn on them. I stand there and I see myself in the circle of their understanding, and I see how damned sad it is, and I gather them up, and we cry all the way back out.
"How is your mother" is a painful question to me, now, and a big catch-22. I want people to care about her, but I don't have a lot of nice answers. I have a stock of generic responses: "Physically healthy," "Pretty much the same," and "She's fine."
I know they're all misleading answers, but she was diagnosed with this disease almost 15 years ago, and it is exhausting to hash out how she really is every time someone asks, for a decade-and-a-half. There's rarely anything new to report, and never anything positive. I begin to feel like I will suck out your soul if I give you an honest report every time I'm asked how she is. So, "the same" is what I hand out.
You know, my mother always taught me not to say anything, if I had nothing nice to say. I'm finding it even more difficult to immortalize these truths in writing. The truth of the matter is that while my mother is "the same," Alzheimer's runs its course, and her condition declines. I am preparing myself to face some difficult decisions on her behalf.
I will be respectful and kind and ensure her comfort and dignity when it's time to make those calls, because she taught me no less.
