Monday, November 12, 2012

Two Months, Four Facilities

Pat stayed at UNM Psychiatric Hospital for 24 days. By day 17, his sense of humor had come back. By day 19, he could use a spoon or fork, kick a ball, shave himself and help me dress him. By day 20, he had peaked in terms of recovery. Talking--not too intelligibly but cheerfully, laughing at the jokes of others and every now and again coming out with a quick verbal jab and that beautiful, familiar sly grin.

His son came from California to see him a few days before Pat was discharged to a nursing home in Santa Fe. He was so so happy to see Chris. Something I've seen with dementia patients is how a joyful experience involving other people will bring them out of the dark for a time. They seem to try harder, to reach for communion and connection. Pat does this often, trying harder to be sociable, kind and communicative when he's around people he likes.

Our drive back to Santa Fe was uneventful, even fun. But it ended at the nursing home, the place I call the home of horrors. It was nice looking with a big pleasant lobby and an open patio with plantings and shade structures. That seemed hopeful. We arrived after hours and there was no one to direct us to Pat's room. The four of us--Pat, Chris, my cousin Molly and me--trooped down a hallway and found a person in scrubs who seemed to know that Pat was coming. She ushered us into a room with two beds, one already occupied by a very sick elderly man with gentle brown eyes.

And there we sat for the next three hours, waiting for someone--anyone--to tell us what to do next. The officious nurse ignored us. I would later learn that the night nurses had to give meds to as many as 64 patients, so her harried attitude was justified.

I could write a dozen tales of terror about the place, but will focus on a few and how they affected Pat. The day after he arrived, Chris and I both noticed a marked decline in his sociability. This happens with dementia patients in new settings, so I didn't think much about it at first. The next day, they switched him to the locked ward. There was a fear that his constant pacing could wear him out and cause him to collapse.

In this unit, there was an outdoor patio adorned with a chain-link fence, a very large laser cut metal sculpture and an ornamental olive tree with a branch sticking out over the path at head height for anyone taller than 5 feet. My cousin discovered a bag of Spectracide lying by the patio wall. She also saw a patient pick up pills spilled by the nurse and had them back to him with a smile.

By Tuesday, Pat had multiple cuts and abrasions on his head, legs and hands. The nurse mentioned that he seemed to run into things a lot. Since Pat had been alone out on the patio, the nurse had no idea where the injuries came from. Nor did he seem interested in putting any antibiotic/antiseptic ointment on them. I brought in a camera the next day and started recording every visible injury. There were lots of them. One bruise wrapped around his arm and included nail marks etched into the back of his wrist.

I also started inspecting Pat's chart every evening and that's how I discovered that the attending doctor had put him back on the drug, Seroquel, that initiated his sojourn at UNM. I think I might have screamed. I insisted that the nurse not give him another dose until the doctor contacted me and to my surprise, she complied.

This was the first salvo in a running battle between the doctor and myself. She never discussed Pat's case with me, even when I tracked her down in her cramped little office near one of the nurses' stations and gently suggested that I might be able to help her understand Pat's case, since I'd been working with his doctors since 2005.  She appeared to take this as a personal affront.Two days later, checking his chart with the nurse, I found that his Alzheimer's meds were being given at the wrong dose. When I asked the doc about it, she said, "Oh, it was a mistake."

Meanwhile, Pat was losing weight faster than a jockey before the big race. The food was hideous (try a pale pink hot dog in a dry bun with no condiments), so he simply refused to eat. I was bringing in hamburgers, yogurt, ice cream, anything I could think of to keep the fat on him. He lost 12 pounds in three weeks at the nursing home, on top of 10 pounds lost at UNM. In August, he had weighed 142. By mid-October, he weighed 120.

One day, I walked onto the ward and found Pat walking with a strange lean to the left. I asked the nurse, the physical therapist, the PA, but no one seemed to know anything about it. The next morning, early, a nurse called to say he had come out of his room bleeding from multiple cuts and abrasions, but she had no idea what had happened to him. When I got there, the listing was worse and he had cuts and bruises on his arms and hands and a very sore wrist. I spent the day trying to get the doctor to just come and look at him. When she finally did, she shrugged and said that she couldn't tell what was wrong but she would send him to the hospital if I wanted. Unsure what to do, I said I would watch him. After dinner, he complained that his back hurt a lot. I ran my hands down both sides of his spine and discovered a huge knot on the right, near his kidney.After the nurse checked it out, she called the doctor and Pat was off to the hospital, free of the dreadful place at last.

Why did I leave him there so long? Well, back at UNM the social workers had told me that he had to be institutionalized for 30 days in a nursing facility in order to be eligible for Medicaid payments to cover the part of his hospitalization not paid for by Medicare. What they didn't tell me was that the 24 days in the senior psych ward counted. In actuality, I only needed to have him in the Santa Fe facility for six days. He was there for 20.

By October 19, he had spent enough bed rest time that his back had healed. I took him home. So sweet to see his head on the pillow next to mine again, to sit on the patio in the sun and talk, or not. We listened to music, took walks, did grocery shopping, even went out to dinner one evening. It felt like we'd reached a tiny island of normalcy in the crazy sea we'd been negotiating for months. But we hadn't.

After two days at home, Pat just stopped sleeping. He paced, he swore, he sat on the bed, half lay down and then got up, over and over again. One night, he spent the entire night standing in the bathroom, staring at the bathtub. Six hours. My sanity evaporated, too. I didn't realize how fragile my regained strength was. By Saturday, he was violently sundowning and I was reacting out of a sleep deprivation that made me completely irrational.

Back to the hospital and two full days in the ER waiting for a slot at UNM  which never opened. St Vincent's finally admitted him on Monday and we spent the day watching Hurricane Sandy devour New York and the Jersey Shore. At that point, Pat understood what was happening and asked where the storm was. Finally, a bed opened up at UNM Rio Rancho, a brand new hospital north of Albuquerque. It sounded like a dream come true. He could get his meds adjusted, begin relearning how to sleep through the night and come back home in a few days. Except that they drugged him up to transport him, then took him off all medication for four days. God only knows why. He has not really come back.

The doctor, who haughtily informed me that he was following the Harvard protocol for titration, is gradually adding Pat's regular course of drugs back in. I am praying that it brings him around to something like where he was when he left the other UNM hospital. The doctor tells me not to hope for too much. He tells me to consider hospice. My hands are suddenly freezing cold.

I don't know what too much hope might be.  

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I welcome comments on the content of this blog, especially stories from other husbands, wives and sweethearts caring for spouses/partners with dementia. It's a hard road and we need to walk with each other along the way. Thanks!