I woke up this morning and everybody was moving slowly. I sat up in bed and through the open window I could see in the hazy sunshine people walking along the street as if slogging through a puree of butternut squash soup. Even the big and little dogs in the backyard of The Circus People – that’s what I call them; more on them another time – on the corner two doors up seemed to be running and playing with each other slowly. Two of the circus women had blown up a kiddy pool and were filling it with water. Then they inflated the water slide. The temperature is already 78 degrees at 9 a.m. and threatening to be 92 with humidity around 97 percent, probably. It is only May 26, and it is already soupy summer.
Emma moves as if through thick soup all the time now. I thought it would pass. Her condition has precipitously declined in the past two weeks. Even with her walker, she steps gingerly and slowly as if she were navigating slick cobbles in a forest brook. She leans heavily on her walker – the kind with two wheels in the front and two legs in the back to which we affixed tennis balls – and drags it when she turns, scrapes it across the wood floor – aiyeee. I checked the wheels to make sure they were turning freely; they were. I was thinking of adding ball bearings.
The handsome young Dr. Patel visited Emma two weeks ago. “She will move more and more slowly,” he predicted, holding a crystal ball on his lap – well, so it would seem, for his prediction pulled into the station with accuracy and punctuality. Her engines were already slow, had moved at that speed of slow for months; she was on a plateau. That’s how it goes. She’ll be the same for a long time and then something happens – no one seems to know what – and she declines: she may fall, or a sudden decline may trigger the fall – it’s the chicken vs. the egg thing. In any event, she is cruising for a fall now, so I have to watch her closely. She is more confused about what to do next, or which way to turn, which foot to place first. She wants to sit down everywhere. She takes longer to process instructions and actions, if she completes the action at all, if she even receives the impulses. She is hard of hearing: “Did she hear me?” I wonder. Or, more likely it appears that her brittle and crumbling synapses are taking longer and longer to toss the message across the void, that forest brook, as it were, so the one on the far side can catch it; or perhaps the forest is empty – no birds singing their messages, no nerve impulses, no neurotransmitters released, the synapses have disintegrated. I cannot reach her.
As you might have sensed by now, often I feel as if I am drowning, submerged in this thick soup, the yellow roses Emma loves that I cut from the flower bed out front and place in a vase for her, may be roses sprouting from my grave. I have Hospice and nursing agency help about 10 hours a week, but the rest of the time is my responsibility; plus there is the responsibility of running a household. Call me Eurydice – hot as it is this morning, after I took my shower, I found all the radiators in the front of the house, upstairs and down, hot as blazes. The airflow regulator or some such part on the heater sticks sometimes so the heater won’t shut off, our plumber says. Last winter he went down into the cellar and banged on it a couple times and it helped somewhat. When that happens, I turn off the emergency switch for a few hours. The heater must run to heat the hot water. But the system needs to be drained and the part replaced, he says, to the tune of $250. Meanwhile, this morning, I closed the windows and fired up the window air conditioners, thus the A/Cs were blasting and so were the radiators.
We’ve lived in a Victorian house since August 2002. Until the past few days, to the amazement of most who know her, Emma has been able to negotiate the stairs, 16 of them and they are narrow and steep. Like most women of her generation, she has amazingly strong arms – all that laundry scrubbing on the washboard and dough kneading for those homemade buttery, flaky piecrusts. She gets a good, tight grip on the balusters to support herself and carefully climbs up and down. Today, though, I had nervous moments watching her come down, and then when the aide came, Emma wouldn’t go back up for her bath; she kept wanting to sit on the steps. Until now, I felt she was safer on the steps than wandering around the house with her walker. The balusters are the one place she can get a good grip.
My Hospice nurse, Tess, and social worker/bereavement counselor, Geri, came today. They both are so deeply compassionate and supportive. Geri visits once a month, Tess twice a week. Happily for me, they listen patiently. We decided today that Emma is going to have to remain on one floor – safer down than up. This is something Emma, my brother and I discussed when Emma and I bought this house, noting that this wonderful house would accommodate such an arrangement, with one bathroom up and one down. The nurse and I will rearrange living room furniture Monday to accommodate a hospital bed in there.
So much for having parties. And this house with its big bay-windowed dining room, high ceilings, intimate living room and big, square kitchen loves parties and having lots of people in. I need to engage in innovative thought here (on more platforms than one, obviously).
–Samantha, May 26, 2011