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.

TO BE CONTINUED

Bad News and Somatic Therapy

This morning, Pat went out to breakfast with his caregiver, Sandra. Pancakes and bacon at his favorite breakfast place, The Pantry. While he was gone, I sat and cried. Our dog is sick and the doctors hadn't been able to figure out what was wrong, but while I was trying to enjoy a solitary breakfast, he started bleeding from the nose. Not profusely, but definitely not normal. When Pat and Sandra got back, he and I loaded Rex into the car--the big old dog actually jumped in by himself--and took off for the Santa Fe Emergency Veterinary Hospital. Kudos to them--I told the doctors that Pat has Alzheimer's and they were wonderful with him, very kind and gentle as they told us that Rex most likely has a rare neurological cancer.

There was the usual rundown about confirming the diagnosis with an MRI ($2500) and the possible benefit of radiation therapy (nearest available center is in Denver or Phoenix, cost would run into the several thousands). My mind first went to the "whatever it takes" place, not for me, but for Pat. Then I calmed down and remembered that we are dealing with a twelve year old dog who already has Addison's disease. Pat wept and wept, and so did I, because he's my dog, too. In the end, I told the doctor that we wouldn't be taking any heroic measures to treat Rex. I was afraid that Pat would push for treatment, but he didn't. In fact, the crying seemed to help him accept what is happening with his dear companion.

By the time we got home, Rex was perkier, eating toast treats from the table and wagging his tail. We relaxed the way you sometimes do during a crisis; not because it's over, but because there is a brief break in the unfolding drama. By four o'clock, Pat had forgotten that his dog has cancer. I had to explain it again and he had to be sad again. This is what I fear most of all--that I will continually have to remind him and that every time it will cause new grief. This time, though, he didn't cry, just got very quiet and sat still on the bed for a long time.

It's really hard for people with dementia to deal with uncertainty. Not that it's easy for anyone. But that feeling of being unmoored that's upsetting to all of us is catastrophic for someone whose mind doesn't process well. Ever since I told him ten days ago that I suspected that Rex is seriously ill, Pat has been less "here" than before, more given to night terrors and sudden terrifying loss of awareness of familiar surroundings. I worry that Rex's illness and death (probably in the next few weeks or months) will undo too many of the fragile synapses that hold Pat's brain together, plunging him into one of those rapid and steep down-steps that have marked his disease process.

I'm doing somatic therapy right now to keep myself together. Today, because of the emergency trip to the vet, I wasn't able to get Pat home before my session, so I dragged him along. The therapist is a wonderful earth-mothery French woman whose yoga practice has created a vast circle of calm around her. While Pat couldn't follow the relaxation directions she was giving us, he still was able to shift into a deeper state of peace. It made me wonder if there's some way to adapt such therapies to work with dementia patients. I will certainly take Pat with me to therapy again as Rex worsens and his decline in turn impacts Pat's dementia. I'm also going to try doing some of the breathing exercises with him, maybe get a relaxation tape to play to help him through the trauma. I'll let you know if it helps.