Chapter Six

Clinging to a Rope

May 2002

I've been thinking about gravity. Both kinds of gravity.

Being in a hospital room is a "grave" situation, no matter how cheerful and cordial and relaxed we try to be for the patient's sake. Injury and illness frighten us; they seem so beyond our control. We cannot see the bones knit themselves back together or the antibiotics attack the bad guys.

And then there is the other kind of "gravity"--the pull of the earth's forces that keeps us on this planet. This kind of gravity is increased a hundredfold in a hospital room.

It pulls my shoulders forward, rounds my spine, compresses my lungs. My breathing becomes shallow. It sucks the blood from my brain, diminishes the flow of oxygen, impedes my thought processes, makes rational and logical thinking impossible, leaves only confusion, anxiety and dread. There is a chunk of the heaviest lead where my heart should be.

My feet seem stuck to the floor with Velcro. I find it hard to move, impossible to find a place to sit comfortably. Gravity saps me of energy.

All around me there is confusion. The nursing staff’s schedules are made so no one nurse will have the same patient two days in a row. This obviously is for the benefit of the nurses. It certainly cannot be for the sake of the patient.

Even I am confused by the array of hospital employees who visit my husband's room. Everyone is uniformed, but in all colors of the rainbow. There is no consistent coloration according to position that I can discern. The registered nurses, the certified nurses assistants, and all the others dress according to their individual tastes, making it impossible for me to tell who is the RN, or the CNA or the oxygen saturation reader, or the physical therapist, or the menu taker, or the custodian.

They wear name tags, but old eyes cannot always read the small print on name tags, especially when those eyes are red and swollen from lack of sleep, crying and worry. If it is confusing to me, I cannot imagine how monumentally confusing it is to my husband with dementia.

I spend as much time in the hospital room with him as I can bear, trying to have a familiar face there that can ground him. The few flashes of lucidity bring questions: "What happened? What's going on?"

I lie to him: "It's okay. You're just having a reaction to the medication. You'll be okay. Try to get some sleep and it will get better." I have no idea if there is truth in what I just said. None of the hospital staff can explain to me in terms that I can understand what is going on in his brain. They don't seem to know either, or don't care to impart the information. Perhaps it would be irresponsible of them to do so.

These are lies meant well, but lies of commission nonetheless. My many lies of omission weigh more, and contribute to the pull of gravity.

After a couple days, a nurse we have never seen before comes into the room. She is friendly, out-going, comforting. She is my idea of a nurse–one who connects with the family and the patient. She tells me it is common for patients to have these kinds of reactions after surgery, especially patients with dementia. No one knows how long it will last. I grasp onto this explanation. I am grateful to her for giving me that much peace and hope, for giving me that rope to cling to.

***

Three of Lee's children are with me at the hospital: Meredith, Rick and Debbie. All are middle-aged, with families of their own. The two girls have come from Arizona; Rick from a town north of Anchorage. We make sure someone is with :Lee all the time, though we aren't sure he realizes who the girls are. I have rented a room on the top floor of the hospital, in a section called the Alaska House. For families from out of town who want to be near the patient, or for those needing long term treatment, it provides low-cost rooms and a common kitchen with refrigerator and microwave, and sitting area. It is a godsend.

We take turns using the room for naps and moments of escape. I notice the same pull of gravity extends to the top floor, though.

There is one single bed in the room, a small refrigerator, and a bathroom. The girls have squeezed a folding bed into the room, so that two can sleep. Once the girls arrive I choose to drive home at night. I do it for several reasons. I've already been there for several days, and need to escape the over-whelming sadness, to go home and recharge my internal batteries. Often it is necessary--I need clean clothes, or something else from home, or there is no room for me. Driving home is no small jaunt down the road.

I live almost a hundred miles south, along one of the state's most dangerous highways. Frequently it is the scene of fatal vehicle accidents, so much so that the first thirty-five miles, from Anchorage to the ski resort village of Girdwood, was deemed a "safety corridor" and speeding violations result in double fines. In the 1950s. my mother dubbed it the "Suicide Highway" and hated to travel it.

It has been rebuilt since then, but traffic is much heavier and it remains a dangerous stretch of road. With water on one side, rock wall from the cut-away mountains on the other, there is not much room for dodging accidents.

Most of that stretch of highway is unpopulated but for three small enclaves called Rainbow, Indian and Bird. The last place gasoline is available is Girdwood. After that, there are no services between Girdwood and my home, another fifty-five miles over two mountain passes.

Usually I enjoy this drive. Not today. I am too numb. There could have been a parade of wild animals up and down that highway and I wouldn't have cared. Today I am crushed with the weight of gravity.

***

I find little respite at home. I am far too preoccupied, too worried about where fate is taking us to relax. I get clean clothes and supplies ready to take back to the hospital the next morning. I wander about the house, feeling as if it's a stranger's house. I cannot relax. I don't know what to do. The house feels empty. It echoes. My stomach is too knotted to eat anything. I take a hot shower to relax, and go to bed.

In bed I stare at the ceiling, tossing, turning, throwing the covers off as menopausal hot flashes torment me. It's been ten years so far--how long is this supposed to go on? I am on hormone replacement therapy, but the really bad ones get through. I didn't react well to an increased dosage, so I must bear these . The very worst one of the day consistently hits when I snuggle in under the covers, ready to go to sleep. Within the minute I feel that familiar pang of anxiety and quickly I am drenched from head to toe. My hair is wet, the over-sized tee shirt in which I sleep is wet. The bed sheet is damp. I throw the covers off, exposing as much of my skin to the air as I can , hoping that evaporation will cool me. Sometimes I get out of bed and walk out onto the upstairs deck, letting the cool evening air cool me. Sometimes I have to take a shower and don a fresh tee shirt. Whatever remedy I use, I know I am awake for at least another hour.

Lee's troubles are enough to make me lose lots of sleep. Tears scald my face. My eyes become sore and puffy, my nose is congested, a headache ensues. I am miserable, both physically and emotionally.

The hot flashes contribute in a most negative way. I am awakened frequently during the night by hot flashes and nightmares.

Too soon it's time to go back to the hospital. I don't take time to eat, have a cup of tea, or look at the newspaper. I'm up and off. I have an hour and a half of driving ahead of me, lots of time to think about how everything has gone wrong, to wonder how on earth this is going to play out. Is he going to come back to a state of lucidity? How can I deal with this if he becomes violent as so many Alzheimer's sufferers do? How can we afford an assisted living home for him? A nursing home? What am I going to do? How do I get through this? What else is going to go wrong? How can he possibly have Alzheimer's? Not him! Not a man so capable!

Within minutes after reaching my husband's hospital room whatever relaxation and recharging I had gained are gone. I can feel the ton of concrete settling on my shoulders, and gravity once again stoops my body.

***