It's Mother's Day tomorrow, and at two her time I'll call my mom and wish her happy Mother's Day. I'll tell her I'm really, really glad she's my mom, because last week I realized that even with the terrible disease she suffers from, I wouldn't want it any other way.
She and I actually exchanged mother-daughter roles many years ago, when Huntington's Disease robbed her mind and she effectively became a three-year-old. Now it's robbing her body of the ability to move, but her mind, surprisingly, is still as bright as any child on the playground. I joke with her, and her face breaks into laughter. This encourages me—there's nothing like an appreciative audience to keep me going.
But for a while last week she couldn't laugh, didn't even seem know I was in the room. The day before I arrived in Baton Rouge, the GP who was treating her at the nursing home changed her meds—without discussing the changes with me. He decided to treat her movements (chorea) with Ativan, a tranquilizer. Two days later, she'd turned into a zombie. The new nursing home, not knowing what she normally was like, thought she was just tired from the four hour journey. I knew better, and finally, got them to check her meds.
We straightened that out, but then one of the nurses happened to mention she'd also been removed from Zyprexa, an anti-psychotic she's been taking. I almost hit the roof. About 10% of HD patients suffer from psychosis, and my mom is one. The last time she was taken off Zyprexa (by another uninformed nursing home doc, without my knowledge) she began having strange fantasies. One day I arrived at her nursing home and found her by the nurses' station, her socks and nightgowns piled on her walker. She was waiting for a plane to take her to Memphis, where she was going to marry Billy Ray Cyrus. A few days later, it was Bill Richardson she was planning to marry. All these "fiction stories", as we called them, were entertaining, but distressing.
I hate it when doctors try to play doctor. You have to watch like a hawk if you have a loved one in a nursing home. Legally they cannot change meds without notifying the responsible party, but it happens. She had excellent neurologists in Albuquerque (one of them was actor Christopher Reeve's sister) but even they had trouble getting the nursing home docs (I changed to a new one when the old one wouldn't return my calls) to follow their care plan.
We signed her up last week with hospice, which many nursing home patients are on. They provide an extra layer of support: nursing staff, CNAs, a medical team, social workers, and a chaplain. (It's also paid for by Medicare and Medicaid, fyi.) They'll advise us when the time comes to consider life-prolonging intervention. (Advise us against it, most likely.) She's not in pain, so we try to keep her happy. That's easy to do, most days.
Her new nursing home is actually her old one, where she lived before I took her to New Mexico to be with me. She has friends in the area, including a church. When I called the minister to tell him she was back, he said that was good news, since they'd heard she'd passed away.
I told her what he'd said, and then said he was busy preparing a new sermon on the "Resurrection of Pat." She howled with laughter, each time I told her. (When a joke works, stick with it.)
So call your mom tomorrow, if you can, and make her laugh. I don't want to sound maudlin here, but a mom's laughter is priceless. I realized, when Mom was a zombie those two days, that if she can't laugh, life's not worth living. There is no plug to pull, but I would have pulled it on Monday when even I couldn't make her laugh.
Anyone got a good joke for when I call her tomorrow?