Where will I go?

River Road

Sunday morning. We'll go to Easter Church later, just me and Mom. Julie and Niece S left for Appleton a few minutes ago. Julie's mom actually said on the phone she was looking forward to Easter with them -- a startling  admission after having insisted that Julie not come. She sits alone all day reading books, eating fruit and having Rice Krispies for dinner, so I've heard.

We took Mom to Simple for brunch yesterday, after searching for her for half an hour. She had forgotten we were coming, I guess, and one of the young pleasant interns, E, had taken her down to the activity room for a painting session. She painted a church that looked vaguely like her parents' old log cabin.

She ordered a half sandwich and hardly touched it. She talked gamely, but the place was loud and her voice soft, so we had lean close to hear. She was glad to have S and Julie there, as she and I are so often just doing things ourselves. She even laughed at how ridiculous it is. But she fretted when we were finishing up. I asked her if she was OK.

"Where do I sleep tonight?" she asked. "Do I go home with you?"

I said she would sleep at her place.

"Where will I be tomorrow?"

"We'll go to church. It's Easter."

"Then where will I go?" She meant, again, where will she go to sleep, to live, I think.

"We'll go to brunch, like we usually do. Then I'll go home, and you'll stay at your place."

She sat staring. "It's this disease. I get so confused."

When we got back, Julie and S dropped us off, and I went up to her room. It was unchanged, despite her confusion when she'd called the night before. We did our rituals. She went to the bathroom twice in about 20 minutes. She said she'd been up in the night every two hours to go the bathroom.

I gave her a hug. She said several times, "I really feel lost. I really feel lost." She seemed desperate, near tears, in deep emotional pain. I lingered a bit, till she was ready to lay down. I said I'd be back at 9 in the morning for church.

I'd biked there, and I rode 60 miles, up to Cedarburg and back. It was cathartic. Her desire to go to the 60th reunion ate at me. She'd gotten a card from a friend who said she'd seen Mom's childhood friend, Blanche. In small town Minnesota, when she was 9 or 10, she would stand outside Blanche's window and call, "Hi for Blanche! Hi for Blanche!" letting her know she was out there, ready to play.  Just thinking of it made me cry.

I feel unequipped, uninformed about her life, unable to fully measure what seeing old friends means to her. It's been her whole life, job, career -- forging durable friendships, lifelong friendships -- and to deny her access to her friends is like stealing from her or locking her up.

But her whole existence now depends on care. She gets help showering, dressing, undressing, keeping her room neat, doing her laundry, and her complicated meds are given to her when she has to have them. To take her away from there, to be responsible for her every minute -- I just don't think I could handle it.