Tuesday, February 4, 2014

Walking in the Dark

Dear readers,

I wrote this back in late November. I wanted to keep the sequence of the story in order. But I had to publish the previous post first, so that those of you who know Pat and know that he passed away in December would not be confused. Thanks for reading. The following chronicles events that led up to his death.

Early December, 2013

The slight autumn rains came and left California still in drought. That particular gray of late November rolled in on thick clouds from the sea. Pat and I were no longer in Santa Ana. The good-enough nursing home Pat entered from Newport Bay Hospital in October was not anywhere near good enough.

I will say this:  Something must be done about nursing homes. Especially the long-term care wards which include facilities geared toward elderly dementia patients. Too many of the LVNs and CNAs (and this is not to disparage all of these medical staffers, many others of whom are truly loving, professional and committed individuals) are under-trained and seem disinterested in doing their best for their patients. My fear is that they receive no special training in caring for severely demented and disabled people. If a patient is unable to get a cup of water for himself, or if he cannot use a straw or pick up a cup, or recognize what a plastic tumbler of water even is, he too often will sit all day, day after day, with almost no fluids.

The nursing home staff was not the only grossly negligent player in our situation--so was the doctor. She refused to come in and check on Pat when I asked her, although she had put him on IV fluids because his blood work didn't look good the previous week. She had him taken off the IV after two days and then didn't order new blood work until I got her on the phone the Friday before he went into crisis. Even then, she made the order for Monday, leaving him untreated for the entire weekend.

When I saw how badly he was doing on Sunday evening, I asked the supervising nurse if he should go to the hospital. Her response? "Do you want to send him to the ER?" I said I wasn't a medical professional and wasn't sure if that was the best step. I asked what would be done for him at the hospital. "They wouldn't do anything more than we're doing here," she replied. By Monday morning, he was in acute pain, terrified and near death. The blood work showed huge irregularities in his sodium and potassium levels.

The incomprehensible negligence of the day-to-day nursing staff at Royale Health Care Center (yes, I will name names)--not taking the time to hold a cup of water to his lips a few times a day--caused Pat to become so terribly dehydrated that he collapsed in renal failure. Had I not stood in the hallway outside his room and screamed at the nurse that we didn't have 45 minutes to wait for transport to the doctor's hospital which was another 45 minutes away, that she had to call the EMS now; had there not been a hospital five minutes away; and had the doctors and staff there not turned out to among be the best and most caring I found anywhere in this desperate journey, he would have died then.

When I met Pat's nephrologist (kidney specialist) at  Santa Ana Central Community Hospital's ICU, he commented that Pat's kidney failure was not uncommon in nursing home patients. He said, "You've probably never seen this. I see it all the time, several cases every week. I call it water deprivation syndrome."

I was devastated by this turn of events. I'd been unable to see Pat for several days right after he was admitted to Royale because I caught a bad cold and didn't want to take it into the nursing home. Chris was on fire duty and not available. If we'd known, of course, we would have made arrangements. This was one of the times that I felt like I'd been too trusting, and not covered the care issue as I should have. I'd taken a break, tired, burned out and sick, and, as happens so often, a crisis ensued.

There were also miracles. After the renal failure abated, my family and I found an excellent nursing home in San Diego. I was able to stay with my cousins just 15 minutes away. Pat survived the kidney collapse, though he could no longer sit up by himself, turn over unaided, or use his arms and hands. He still knew me, and Chris, and my cousins, Guy and Sue.

Sometimes he asked me where we were. "We're in San Diego," I answered. "Where our cousins live. You're in a nursing home, doing rehab to help you get stronger." I didn't believe that last phrase. I wondered if he knew that I didn't.

He could still swallow, but had to eat pureed food and drink thickened liquids. Once, as Sue was helping him drink some thickened ice tea, she asked how it tasted. He answered, "Lousy." And smiled. That was one of several times he showed his old wry self to us. The other was when two of the women in his earlier life called in one morning to send love, one after the other. I told Pat, "Now all your women are lined up." He gave me a classic Pat deadpan look. Then a smile. It amazed me that, even in the last weeks, signs of his distinctive personality flashed through.

I reject vehemently the idea that the Alzheimer's/dementia victim disappears in the disease, that the person the caregiver once knew no longer exists or can be reached. It would be easier if this were true. But my experience was that Pat was definitely still there, even up to the last hours of his life. Stripped of all that he had been able to do, to say, to think and to dream, the essential man was still there, reaching through the wall of illness at times to contact me and others he loved.

I can't imagine what it must be like to be trapped inside this disease. My hope is that deep spiritual communication is taking place between the patient and her or his God. When a priest visited to give Pat communion, he was visibly comforted and gave her a smile that lit up the room when she held his hand and said the Lord's Prayer. She said she'd never seen anything like it.

In the final reaches of illness, it becomes very hard for the caregiver to communicate the condition of his or her spouse or sweetheart. I really didn't know how to reply when friends asked, "How's Pat?" Which doesn't mean at all that I didn't want them to ask. I just didn't know how he was. He was far beyond thin; the bones in his arms reminded me of chicken wings. He slept more and more, ate less and less. He often gazed at something I couldn't see, his eyes following movement, his face lit most often in a smile of beatific delight. Once I asked him if he saw something. He nodded. I asked, "Is it beautiful?" He replied, "Yes."

By late November, after he suffered several seizures, my guess was that Pat was dying, but I didn't especially want to tell that to concerned friends, because I didn't know if it was imminent or months away. His doctor said he had sustained profound and probably irreparable neural damage, although a CT showed no evidence of new strokes. Just a culmination of all the TIA's, a soaking with sodium during the renal failure and the relentless ravages of beta amyloid plaques.

The strange thing, though, was that his mental state seemed to become more clear as his bodily systems collapsed. My theory is that, once he was no longer eating much, the burden of digesting and metabolizing was lifted and his energy could divert to recognition. When I spoke to him, I felt that I could use regular speech again, instead of the slow, short sentences I'd tried to employ for the last year, and that he was understanding me. Even on the last day of his life, he recognized me, turning his eyes toward my face. He recognized his friend Bill, who drove all the way down from LA just to say goodbye.

And he knew Chris, his son. It was Chris who was with Pat when he died. I had stepped out to nap, anticipating a second all-night vigil. This was, I recognized later, just as it should have been.  Pat was with his baby son when he took his first breath and it was fitting that Chris was with his dad when he took his last.

I arrived just a couple of minutes afterwards. I knelt by the bed to stroke my husband's face, his hands and chest, to say those hard farewells, while my cousin's wife read Psalm 139:  "Oh. Lord, you have searched me and known me. You know my sitting down and my rising up. Darkness is not dark to you; the night is as bright as the day. Darkness and light to you are both alike."

These are the mysteries of our human mortality.

Friday, January 10, 2014


First, let me apologize for not writing recently. The last phase of Pat’s illness cascaded so rapidly, beginning with a nursing home calamity in October and ending with his death just five days before Christmas. There was no time or energy for writing it all down. He died on the solstice, as the dwindling light gave way to the new lengthening of days.

In future entries, I will try to catch you up, dear readers, on what transpired for us during those weeks. It’s important, because it’s the last part of the dementia/Alzheimer’s journey and I learned a great deal. Not only about the end stage of the disease and the difference between dangerously poor “skilled” nursing and excellent professional care, but also about the spiritual transition that my dear husband made in that time, and the emotional stress, wonder and exhaustion that I experienced as a caregiver--my own spiritual journey through the last days of our marriage.

“This is life. Beautiful and terrible things will happen. Don’t be afraid.”
--Frederick Buechner

Writing the words, My husband Pat is dead, makes it real. It’s no longer a possibility or even a probability; it’s what is.

I am in a strange spiral of feeling and not feeling, of not knowing whether to cry or hide or be with people or act as if I’m okay or actually be okay, or fall apart. The problem is there’s no real way to process death except through time, a long time. You know death has happened, it’s unmistakable. The body on the bed is the empty container and the bright spirit has gone away.

But your beloved has been imprisoned behind a wall of loss and fear and frustration for years because of dementia. You are grateful he is finally free of confusion and terror and pain. You are so relieved to be done with the terrible burden and hopeless decisions of caregiving. Joy for him and a kind of gladness for yourself complicate your grief.

As people share their wonderful memories of Pat—his ready wit, his far-ranging knowledge, his energy, his remarkable artistry and skill as a designer and builder—I feel sometimes like they’re talking about someone I knew a long time ago. Or else, the memories of how much I admired and loved him in the early years of our relationship overwhelm me. I lost so much of Pat before his body finally gave up.

It’s been a very long time since I’ve been truly carefree, truly happy—years and years. Part of me—most of me, honestly, doesn’t want to go through the long months of grief’s stages—denial, anger, depression and acceptance. I’ve been through them again and again and again, every time Pat took a step down. I just want to be happy, to live something like a normal life once more. But I can’t be happy in a way that doesn’t take into account the reality that I love this man and I can no longer touch him or converse with him or take his hand.

So far, grief isn’t quite what I thought it would be. It’s more of a daze, a confusion, a disorientation. For two weeks over the holidays, I nestled in at my cousins’ house in the joys of their Christmas, trying to be part of it and yet separated from them by the strangeness of a holiday following hard on the heels of death. As if I were a foreigner dropped into the midst of a celebration I know a little about, but don’t really understand. That’s not quite it, either. Because I understand it; I just couldn’t feel it. Or I felt it for a moment and then remembered Pat’s still form on the hospital bed.

I’ve known for some time now that I would be a widow before 2013 ended—when my eldest sister died in 2011, I told my other sister that Pat would die within the next two years. Was that foreknowledge or self-fulfilling prophecy? I think it was the former. My tenure as a wife was so attenuated by this utterly hateful disease, this destruction of Pat, of “us,” of life as we knew it.

A cousin said, “You’re a widow now. Your status is different.” Widow is an ugly word, with its connotations of lifelong grief, shriveled prospects and withdrawal from life. I don’t want that label. I got to be “wife” for twelve years; I don’t want to be “widow” for the next forty. Call me a woman who lost her beloved to calamity. But still a woman, still living and warm and filled with passion—for life and adventure, for enjoying the destiny that God will unfold within and around me. I need to live fully again—it’s what Pat wants for me, what I want for myself.

First, though, the dark midwinter. The rest and the nurture of those who love me. Sleep. Walks alone on the beach. Riding a beautiful horse as the day draws down. Good food and gatherings with a score of relations. Preparation for the celebration of Pat’s life, with all the hilarious and touching stories that will be told about him. Preparation for the next part of my life. The acknowledgement of this moment, this turning point, as the “pearl of great price.”

I really must live through this holy liminal season, allow it to have its transforming grace and not rush the future. There is a weird kind of peace and goodness to be found here. To just stop and breathe and for the moment, do whatever I feel like doing and nothing more. 

Mornings are usually okay. I wake up fairly early and walk. The Southern California sunshine bathes my eyes with an energizing light. It feels good to walk, to greet other runners and walkers, to admire architecture and flowers. Sometimes I don’t want to stop walking. It would feel good just to keep moving all day, to keep sorrow and memory and the hard jobs of memorial plans, obituaries and burial options at bay.

But I come home after a mile or so, eat, read, meditate and pray.  Then I try to face the day. Some mornings, I just can’t, so I crawl back in my warm bed and sleep till noon. But most of the time, I launch into dozens of calls to plan Pat’s memorial, deal with banks, make an appointment with Social Security, contact the hospice that took two weeks to get the death certificate signed. It’s not like there was any question about why Pat died. But it took two weeks to get the doctor’s signature so the cremation done.

Note to reader:  Try not to die during the holidays, especially if Christmas and New Year’s fall mid-week. Getting bureaucratic things done when four holidays and two weekends intervene is almost impossible. For that period of time, I tried not to think about my husband’s body lying in a refrigerated space somewhere in the city. It’s not that I thought he still occupied it, but it just seemed awfully disrespectful. Even at the end, nothing is easy. Expect this, if you can. I understand now why our forebears had the body in the ground in three days. This modern limbo is unnatural, stressful. 

By evening, I’m usually exhausted. I find myself sobbing in the car on the way home from the grocery store. Or in the grocery store itself, hiding behind displays of canned goods, when I realize that Pat and I will never again buy coffee together, or oranges, or vanilla ice cream.

Week before last, I went with my cousin Sue to a New Year’s Eve Labyrinth walk at the cathedral. We entered the high shadowy chapel where the gothic arches were still decked with garlands and wreaths. A man handed me a white rose. I set down my purse and stepped into the circle of votive candles around the labyrinth. Based on the medieval labyrinth on the floor of Chartres Cathedral, it’s an intricate pattern that doubles back on itself, loops around in broad curves, doubles again and again, and finally guides you into a central space shaped like a six-leaf clover.

At first, I was aware primarily of the flute and violin music, live and a tad too loud. And of bumping shoulders with other walkers who were ahead of me in the narrow doubling lanes. I wanted to do it right, to feel something—who knows what? It wasn’t till I reached the center that I realized I would have to walk out again by the same convoluted route. If the walk to the central medallion symbolized this past year with its terrible and miraculous twists and revelations, the center itself was the moment of Pat’s death, the moment when my identity changed from wife to widow.

The thought of walking back out into the world, of leaving behind the comfortable and comforting identity that’s been mine for twelve years, of leaving life with Pat behind, glued me to the floor, there in the middle of the labyrinth. Taking the next step seemed unbearable. I clutched my white rose, trying to look like I wasn’t crying as tears rolled down my face.

And then I took a deep breath and began the journey out of the labyrinth. This is my choice, the only choice that can lead me back into life. I have to trust God that I am not lost in a maze of grief, running up against dead ends, unable to move back into the river of the living.  A spiritual labyrinth has a plan; its purpose is to get you deeper and deeper into the heart of God, so that you can then walk out knowing that each twist and spiral ahead is mapped already, guiding your feet into a future that Love has created for you.

This is what I learned on New Year’s Eve, the year my husband died.