Before deciding to buy our historic home in 2002, Emma and I drove an hour from Wilmington, Delaware, south across the Chesapeake and Delaware Canal, to see the Victorian home a second time. We got to the historic district of our town and then couldn’t find the house. I looked at a map and drove around and around, but couldn’t find it. We pulled up to ask directions of a guy raking his lawn. He smiled, leaned on his rake, and casually spent ten minutes describing the layout of the town and providing a choice of routes to get to the house. The house was just around the corner and a couple blocks over, it turns out.
This house with its high ceilings, large rooms and bay windows feels so always safe and warm. It is welcoming. It loves to be filled with people. When we moved in, I wanted to place a plaque above the front door with Bob Dylan’s words, “Come in” she said “I’ll give you shelter from the storm”. Now, I just want a sign that says ring the doorbell, dumbbell. Otherwise, when I’m upstairs in the back of the house, I cannot hear visitors knock. The ones who knock do set off the dogbell, but she barks at people on the street, too. Nevertheless, I go and look through the door window and, frequently, see no one, because the visitor is hunched over beside the door, rummaging through an unwieldy purse she has set in the chair there.
Indeed, residents of our town are open, warm and welcoming. Even the ghosts are friendly. Of the latter we have many; they simply integrate themselves among the rest of us. Those of us still in human form are familiar with them and speak of them (some, even to them). A number are celebrities, having been written about.
Yesterday afternoon I walked to our annual wine-tasting garden party downtown to benefit our Main Street association. The plates of food, warming pans, flowers, utensils, all were laid out beautifully, as usual, down the long, white-clothed table sheltered by a canopy against the gray sky; the food deliciously prepared by members of our organization; the wine donated by our local liquor store (one that is too far for me to walk to) superb and enticing.
I would not have been able to get out and taste the wine, savor the camaraderie were it not for Emma’s recent acceptance into the state 30-hour a week Attendant Care Services program. To cover an additional hour or so yesterday, I had a Hospice volunteer come to sit with Emma until the aide came. The volunteer brings her Kindle, so she is set for a while.
At the party, one of the women, a friend near my age, learned that I do not own a car and tried to sell me one like hers, a red Smart car. She took me out for a ride in it. She drove onto a back road and pulled over. “You drive,” she said. I got out, walked around the car, and took the wheel. It’s a cool car, a two-seater, but big on the inside so that you have the sensation that you’re riding in a big car and forget that you have nothing behind you or in front of you to protect you from, say, an oncoming big rig. But it handles well; the rear engine reminds me of the successive three early VW beetles I owned. “Step on it,” she said. “Let it out.” “Oh, you don’t know me,” I told her. “Cops pop out of the bushes at me.” But of course, I gave in, checked all the mirrors, bushes and hillocks three times and accelerated into a splendid Thelma and Louise moment.
Before we went out in her car, she said to me, “Now that you have help, you can get yourself back. And yesterday and with nearly full-time help, I find it good to begin to feel and see glimmers of myself again.
Yes, that’s it. That is exactly it. I have realized over these past six plus years, since Emma began losing her mind, that I have been gradually losing myself. I had begun to wonder if I weren’t one of our town’s resident ghosts come back to find some lost love. This is especially so this last year when Emma’s care took most of my time; and social services, healthcare entities, utility companies and business organizations I dealt with acted like they were the ones with dementia. Already on the razor’s edge, a slight nudge could push me over.
Antithetically, even with the few words Dr. Patel and I have spoken, I find that our coming together for our brief minutes each visit every 60 days is like coming to meet an oasis of the mind.
The portent of losing myself made me feel the floor of my chest open and my heart plunge into my stomach when that day in 2001 I made the decision that I needed to stay in Delaware and help Emma. All of my belongings were in storage in Southern California, where I had intended to return – my library of books, my writings, my thousand phonograph records, my guitar sheet music, and of course, all my household goods and my clothes. Everything is still there. Nearly all that is here is Emma’s – all her furniture, her china, crystal, and flatware. When you enter our house, you don’t see much of me. You see Emma, the human being she once was, where now remains only the sheltering shell.
When Dr. Patel came for his visit the other day, I had to go out and find him. His GPS didn’t bring up our street and, coming from a direction different from usual, he couldn’t find our house. And maybe he was exhausted by a business trip from which he had just returned. I gave him directions over the phone and then walked out front to the sidewalk so that as he drove by, he would see me and I could bring him in.
Our visit was brief as usual. He checked Emma’s blood pressure, and since it has trended low again, even after discontinuing most of her blood pressure medications, he halved the dosage of the one remaining. He explained that Emma could remain on her current plateau of getting up in the morning for bathing and eating breakfast, sleeping all afternoon and being fed dinner at a table over her bed at night for up to six months, or maybe only a few weeks. He said that the next change might be some sort of infection, because as her body shuts down so does her immune system.
Then, he stood up, said, “It’s really good seeing you again,” extended his hand and I gave him mine. He told me to call him if any sudden change occurred, that he could come by if need be. And, then, he was gone.
“Come in” she said “I’ll give you shelter from the storm”.
–Samantha, September 19, 2011