Monday, November 19, 2012


The trees are brown from a hard freeze, the Sangre de Cristo mountains are streaked with snow and Pat is home. This time, I think, for good.

I used the time he was in the Rio Rancho hospital to connect with caregiving volunteer organizations, Santa Fe Senior Services and a night sitter so that I'd be ready with support when he arrived. I know now that I can't be caring for him 168 hours a week and setting up assistance at the same time. The organizations, Coming Home Connections and Palliative Care of Santa Fe, are simply wonderful and very willing to help. The Palliative Care director didn't think he's a candidate at this point for their services, so she is instead organizing a corps of neighborhood volunteers (we happen to live in the same enclave in Santa Fe) who will help me with yard work, painting the interior of the house and other odd jobs that I can't seem to get to on my own.

In addition, Pat will be back with Gentiva Home Health. This is a national home care corporation and, if they are as good elsewhere as they are here, I highly recommend them. The nurses and therapists are smart, open-minded, kind and skilled. The care they provide is covered by Medicare and families can, if need be, switch from the therapy-based care to hospice as the patient becomes less able.

The most wonderful piece of this schedule of care that I've developed with lots of help is night sitting. Kevin Long is our night-time helper, referred to me by Coming Home Connections and much praised by Palliative Care. He is kind, generous, practical, friendly and very very calm. Pat accepted his presence immediately, enabling me to sleep log-like in our guest room three nights a week. What an incredible gift! I'm transformed by it, able to be calm myself and gentle with Pat instead of frustrated and exhausted by sleepless nights.

The other profound blessing in all of this has been the loving, amazingly generous and knowledgeable presence of my cousin Molly Kelly. There is simply no one like her. Molly is a medical doctor working for UNM's Locum Tenans program, which provides temporary doctors for rural health clinics throughout New Mexico. She's worked everywhere from Raton to the Rio Grande pueblos, to the Navajo clinic at Pine Hill. She loves her work and sees herself primarily as an educator for people with little access to healthcare information, using the diseases that bring patients into the clinic as a means of teaching them about healthy diets and healthy lifestyles.

Molly helped me bring Pat up from Rio Rancho (my car blew a head gasket last week), then stayed all weekend to be Pat's helper and my support person. We've been close cousins since childhood, when our families intermingled through various life events. I can still remember my mother calling me at the Kelly's to ask if I was ready to come home. The answer was usually, "No!" and so I'd stay a few more days. The extended family lesson that we learned then endures into the present and I am so grateful. My advice to any caregiver is to get an extended family, blood relations or not, a community of people who really care what happens to you and your beloved and will step up, almost without being asked.

This morning, Pat and I were sitting at breakfast. I was spooning oatmeal with dried cranberries and walnuts into his mouth and handing him his coffee cup for each swallow. We were laughing at a Halloween card my mother sent us last month. I found that I could fully focus on him and that, as a result, he was able to respond to me. It felt like we were a couple again, together.

That's the gift of adequate support, for which I'm deeply grateful this Thanksgiving. I went too long without it--I hope that anyone reading this who is or will one day be a caregiver takes this lesson to heart. Get support. It's not just for you, though that would be reason enough. Your well-being has a vast impact on that of the person you love. It is precious.

Happy Thanksgiving, dear readers.

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.  

Friday, November 2, 2012

Stepping Down, and Down Again

It still seems like summer in my head. Not because the trees are green anymore, or the weather is hot and still (it is awfully warm for November, but that's another blog). It's just that I haven't written here for so long and so terribly much has happened since June. There's no quick explanation why it should come as a shock that the cottonwoods along the bosque are flaming yellow, glowing against the smoky blue sky as I drive south toward Albuquerque. So I guess I'll try to patch together some kind of synopsis of this long silence on my blog.

The death of our dear dog Rex sent Pat down a huge step that I couldn't see at first. We traveled to Colorado in June and he did great--got to visit with his old carpenter buddy Dennis in Durango and recall the carousings of yesteryear. After the first day there, I asked if he wanted to go home or go on up to Grand Junction and see our niece, her husband and our utterly adorable grand-nieces. He chose Grand Junction and adorable little kids, of course, and we had a great visit there. On the way, we drove over the pass by Copper Mountain, around Silverton and Montrose and out through the badlands that open up into the amazing green of the valley where Grand Junction sits below the Colorado Monument. It was fun to comment on the beauty all around us, sharing life in an almost normal way.

Back at home, though, things began to fall apart. While he used to enjoy outings, Pat became sullen and always wanted to go back to the house. He began pacing and talking to himself, which he'd never done before. I wondered if it might be the medication he'd started about the time we went to Colorado. Suspicion mounted as he became more volatile and we found ourselves arguing loudly again and again. I called his neurologist at UNM and he referred us to a psychiatrist. The latter was puzzled by Pat's ability to recall recent events and ordered a PET Scan, which provided--after all these years--a definitive diagnosis of vascular dementia, with more recent Alzheimer's development and cortical shrinkage. Somehow, the last was the most alarming to me. The idea that my husband's once-brilliant brain was shriveling, becoming smaller with no real hope of recovery, horrified me and made our situation seem somehow irredeemable.

In the midst of all this, I made the fatal error of agreeing to pet-sit for a friend's pitbull, a charming dog named Whitey, who I thought might cheer up Pat. Pat somehow got Rex tangled up in his mind with Whitey and decided that our friend had stolen Rex. His intense confusion worsened when Whitey, who himself suffered from enormous separation anxiety, began to misbehave--chewing holes in our gate and window sills, battling a skunk in the backyard. I felt that I was coming unglued and finally told our friend to come while we were out and take the dog. I kept Pat away all day, and he seemed not to miss Whitey/Rex when we got home.

But the pacing and muttering and combativeness increased exponentially and I found myself emailing both doctors weekly, finally pleading with them to do something. One afternoon, after crying hysterically on the phone the night before as I tried to explain the situation to my mother and screaming at Pat to stop the pacing and muttering, I tricked him into going to the ER. I said we had a doctor's appointment and he didn't guess the truth till it was too late. So much for honesty and integrity in marriage--this disease takes all.

I had arranged with his psychiatrist to admit Pat to the  UNM Psychiatric Hospital's Senior Behavioral Health unit. Or so I thought. Instead, we spent twelve hours in the ER waiting for admission to be granted, most of them trapped in a small room without any medical intervention for my husband who was now in full-blown psychosis. It was as if the two hospitals were communicating via tin cans with a 60-mile long string tied between them. I thought they would be admitting two of us before it was over.

When you are a caregiver, you become more mother lion than rational advocate when the well-being of your beloved is in jeopardy. After three hours of utter neglect, except for being told we couldn't leave the tiny room, Pat wet his pants and I leaped out of the room, hollering at whoever was in the hall that WE NEEDED HELP--a bathroom, dry clothing, food and water to drink!!! ER nurses probably hate people like me. I often feel like they've never seen anyone like me. In this instance, I didn't give a flying poo that they seemed to prefer patients who quietly suffered and died on their watch. And my histrionics got results, though I immediately experienced a huge attack of shame at being so loud.

Finally, the ambulance arrived and we careened off into the August night. Following them at a brisk 85 mph, I gripped the steering wheel to stave off exhaustion and prayed to God to keep all the coyotes and feral cats off the freeway. Pat meanwhile was sleeping off a massive dose of Haldol in the back of the ambulance, injected in the ER to calm him down enough to draw blood for myriad tests.

That night should have warned me of things to come. After a blurry conversation with the admitting psychiatrist, whom I never saw again, I crawled into bed in a nearby motel and fell into a troubled stupor. In the morning, I dragged myself over to the hospital and submitted to body wanding and purse lock-up for the first of probably sixty times over the next 28 days. You cannot take your purse onto a psychiatric ward, or your cell phone, or anything sharp, or a pen, or stuffed teddy bears, or magazines.

I did smuggle in photographs of Pat in his childhood, youth and adult years, of his son Chris, of his parents, sister, first wife, best friends, of us at our wedding, of several building and fine finish projects he'd done over the years. I had to write his name on the collar or waist bands of his clothes, the soles of his socks, the liners of his shoes. As if he were a small boy heading off to summer camp for the first time.

He was still drugged and completely groggy when I saw him in the morning, but he recognized me and held my hand for a long time. The doctor was a young resident who once lived in Monterey and knew about Cambria and the Big Sur. Pat liked him. Dr. Jones added an anti-depressant to the drug regimen and took him off the problematic anti-psychotic and sleeping aid.

I stole away after a couple of hours, afraid Pat would get frantic if he saw me leave. That would become my pattern for the next two weeks. The rest of that first afternoon I spent wandering around a huge mall in Albuquerque. I hadn't been in a real mall in years. The utter triviality of it, the colors and the noise were distracting, almost comforting. I bought a sleeveless top in my favorite dark green. I ate sushi and drank a diet coke and chewed through three pieces of See's candy, one of which was free. I called a friend in Santa Fe on my cell phone, walking up and down the mall, crying into this flat plastic rectangle. She was very consoling.

And then I went back to the hospital. It just didn't seem right to leave Pat alone there. I fed him dinner, walked him around the ward about a million times--pacing had become his new hobby--and got him into nurse's scrubs in lieu of pajamas. I helped him climb in bed,  stroked his hair and said the Lord's Prayer over him. It was all I could think of to say. That and "I love you." He didn't respond. Later on, he would say it back to me every night.

Afterwards, I drove to my cousin's house in the dark. She was summering at the Jersey Shore in a cottage that may not exist anymore as I write this. Her home is a lovely shell of aged fir or pine with windows that open out over the Rio Grande, the city lights beyond and the dark outline of the Sandia Mountains in the far blue distance. For the next three weeks, it would be my refuge and sanctuary, the place where I tried to learn that God is enough, that I am, that Pat is, carried down these hard shadowy steps in invisible loving arms.