Alzheimer's disease · Behavior · Caregiver · Caregiving

The homemaker always rings twice / May 31, 2006

Except for the biological theme park that we know as menopause, I’ve been having a pretty good week. Until today.

One of the pleasures and rewards of writing this blog is that it has brought me into contact with some super people that I would probably never have met otherwise. I’m feeling connected, supported and uplifted by being able to communicate with these wonderful folks. I might never have taken this particular path had I not been facing all the emotions and challenges of my mother’s disease–sometimes you are shaken into new perspectives, and I thank God for that. I don’t remember exactly how I found Smoke & Mirrors–was it through a Technorati search? Michael had written a particularly beautiful reminiscence of his mother, and I got up the courage to comment on it. I received a warm response from him at a time when I really needed it, and now I look forward to visiting his blog and enjoying his beautifully-expressed reflections on his life, as well as the comments left by the others who visit. There’s a real community there, people who can share Michael’s humor and perspective. Just knowing that people like Michael are within reach is one of the unexpected benefits of my blog.
Even more recently I have discovered Mom & Me Too and its creator, Gail, who is her mom’s fulltime caregiver. Gail is brave and funny and inspired, not to mention a gifted writer. I have so much more yet to read of her archives, but the world Gail has already created for me of her life with her mother is rich and loving and vibrant. Even though I can sense the pain and difficulty of her life, I come away from her writing feeling so hopeful. She has made art from all the loose ends, the disappointments, the successes and the nuttiness. And in the end, she is honoring her mother not only by her care, but by her writing. How much better does it get than that?

And as if this weren’t enough to keep me going, I actually had a night out. Dinner with one of my closest friends at a Mexican restaurant, and then an outdoor, 3-hour Bruce Springsteen concert that took me out of my world for awhile. My sister was staying with my mother and I could just forget for a short time all the heavy stuff (as if…)

Which brings me to today. My mother decided that she would not let the homemaker in today. She just would not answer the door. Someone from the agency finally called her and said: Mrs. P, Eva is at your door, she’s scheduled to work today. Which my mother knew. I had written it on the big board under today’s date. Aren’t you going to let her in? they asked. Why would I do that when I don’t feel well? my mother said.

I know all this because the answering machine captured the call. Do you want to cancel today? they asked. Yes, please, my mother said. When my sister arrived later on, the episode acquired embellishment–there had now been several people at the door, according to my mother, and so she’d decided to cancel the homemaker altogether. After my mother accused both of us of making her feel like an invalid, my sister left in tears and called me at work. I’m fortunate to have a wonderful boss (also with frail parents) and supportive co-workers. They can tell what’s going on just by listening to my side of the phone conversation, and will come over and whisper “Let me know if I can help.” Yet I still want to fall through a trapdoor, never to emerge. So the remainder of the afternoon was spent trying to finish my work (oh, the mistakes that will come back to haunt me) while figuring out how to handle my mother’s defiance.

As I drove home I kept hearing a phrase I’d read often: It’s not your mother, it’s the DISEASE. I had enough time in traffic to calm myself and play out a couple of scenarios. The first one had me screaming at her and then packing my things and leaving with a flourish to return to my house. (I had to do it mentally, just to get it out of my system.) The last one had me thinking about how my father would have handled it–I would come home, hide the anger I was feeling, sit down with my mother and ask her what had happened. Then I would put myself at her mercy–I would ask her to accept the homemaker for MY peace of mind, rather than because she needed any help. Would she do me that favor? Miraculously, she said she would (yes, I know that tomorrow is another day, but caregivers are forced to cultivate a different sense of time. “Forever” lasts until I fall asleep tonight. If I can have just one relatively peaceful day I can savor it.) So I guess we’ll see what happens the next time Eva rings the doorbell. I called the agency and straightened it out with them. And now I will return to the book about Ben Franklin that I’ve been reading. Nothing like the eighteenth century to distract me.

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