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.

Mid-Winter

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. 

Drugs, Part Two

Here is one of the hardest things we struggle with as spouse caregivers:  When is it enough? When have we done all we can do, fought all we can fight, intervened in the medical treatments as much as we can?

Last week, Pat entered a nursing home, not in San Luis Obispo County as I had hoped, but in Santa Ana. Oddly, it’s the city where he began elementary school, just a few miles from his childhood home in Corona del Mar. It was a defeat in my mind—four hours from where I’m living, from Chris, from our friends.  But I prayed, dozens of others prayed with me and this is the only place that would take him. Skeptics might say, Well, that’s the fault of an inadequate care system in San Luis. And they would be right. It’s not that the Santa Ana nursing home is the perfect God-given solution. But it’s easiest, for Pat and for me—at least for now.  “For now” is the watchword of all caregiving, I think.

The staff seems to be professional and certainly more engaged with Pat than some other places he’s been. They want to know what his favorite foods are, what he did professionally, what kind of music he likes, if he enjoys dogs, gardening, movies, art. Some of the questions are easy; some I have no idea how to answer now, though I could have a few months ago. But at least they ask, and that makes me feel a little confidence in the quality of care he’s getting.

Medically and physiologically, he’d doing very poorly. The doctors from Newport Bay put him on several new medications and he appears to me to still be way over-medicated. He doesn’t recognize me when I arrive—it takes some hugs and jokes and shoulder rubs before he realizes it’s me. He sits rigidly in a wheelchair, his eyes fixed. I duck down and look up into them until he focuses on me. Sometimes he smiles. He has tiny seizures every now and then. He can barely walk with assistance; just two months ago, he could shuffle around unaided.

What has happened? Is it the disease or is it the drugs?

How many anti-depressants does one person need? He’s taking three. And why is he still on an anti-psychotic when I specifically asked that he not be given any more? Why have his muscles completely wasted in the last three weeks and why does he only weigh 109 when he’s eating three meals a day plus twice-daily high protein shakes? What is going on? What?

I still ask these questions, still have the strength to be my husband’s voice in professional caregiving environments. The likelihood is that I won’t receive answers. But I believe our task as caregivers is to ask anyway, and try to refrain from despair and blame. To go on asking, to go on seeking.

The only immediate reward for these efforts may be the rare smile, the squeeze on the caregiver’s hand that lets her know the beloved is happy to hear a familiar voice, is aware that someone—even if he can’t remember who she is—is concerned. The reality is, we caregivers are never going to feel that we’ve asked the right question, done the right thing. Because in truth, no one knows what the right thing is. So our goal can only be to move in the direction of love.

In the meantime, I urge all who are involved with a dementia patient to stay alert for signs of drug reactions in your spouse or sweetheart (or any other family member or friend with the disease) and to ask the questions, even if no one has answers. Doctors who don’t know the patient’s history (and very few take the time to become well-acquainted with it) will tell you it’s the “natural progression” of the disease. Chances are, if it’s notably neurological, it’s not. If it happens very rapidly—in a matter of days—and there are no symptoms of stroke, heart attack, urinary tract infection, bowel shut-down or pulmonary disease, it’s probably a drug side effect.

As Rebecca Mead writes in her magnificent New Yorker article,

“Today, psychotropic drugs are regularly used to sedate people with dementia into compliance, and nursing-home residents who have no diagnosis of mental illness are given off-label prescriptions for Haldol, Seroquel, and other antipsychotics. These drugs were developed for the treatment of conditions such as schizophrenia, not dementia, and are generally intended for young, robust patients; when such medications are given to the frail and the elderly, they induce a lethargy that can mask symptoms of other afflictions.” (“A Sense of Ending.” The New Yorker, May 20, 2013)

One of the worst offenders is halperidol (Haldol). It’s an older anti-psychotic used extensively in hospitals and long-term care settings to control patient/resident agitation and combativeness. Its purported function is to calm the patient and help them be less fearful. However, it’s used primarily as a “chemical restraint” to make the professional caregiver’s job easier.

In a short-term setting, this can be very important, particularly when your beloved needs blood drawn for tests, X-rays for physical injury or CAT scans for possible strokes or clots. Without it, no one could get a needle anywhere near Pat this past year. But in a long-term setting, it’s given “as needed” (also called PRN), primarily for convenience and too often replaces solid professional training for the institution’s care staff. In California, it’s against the law to administer Haldol PRN in nursing homes, but not in board-and-cares, where its use is rampant.

Speaking from Pat’s experience, Haldol and other anti-psychotics creates daytime somnambulance, loss of language comprehension, severely impaired depth perception, gait disturbance, a stooped and crooked posture, inability to raise his head, increased agitation, muscle loss and loss of speech. It also impacts sleep patterns. All the anti-psychotics are implicated in reduced brain volume and loss of higher-order thinking skills.

I don’t know about you, but I think the dementias do quite enough brain-volume and thinking-skill destruction on their own. The only drugs I want my husband to receive are those that will help his remaining brain functions—relieve anxiety, calm fear, support whatever synapses are still working.

To repeat, the antipsychotics aren’t really given for the benefit of the patient (though they can prevent self-harm), but for the caregivers, both familial and institutional. I confess that I gave both Haldol and Zyprexa to Pat when he was living at home. They made it possible for him to stay out of a bad nursing home environment in Santa Fe while I made plans for us to move back to California. I’m not sorry I did it. On the other hand, I was very conservative in the dose, giving less than the doctor’s prescription.

In care facilities that allow PRN dosing, a caregiver can give a drug at anytime if the patient is shouting, is agitated when she or he needs to have clothing or diapers changed, resists eating, strikes out at others or doesn’t want to go to bed. There are other ways to handle these behaviors.

The best method I’ve found is to simply stop whatever is agitating your loved one or patient. Wait a few minutes. Talk about something totally unrelated. Turn of the blaring television set on the ward and turn on some gentle music. Let her walk around a bit, tell her a simple funny joke or offer a cup of ice cream. Step away for a while and let the person have some time alone. It’s not like there’s somewhere they have to be.

When you resume whatever it is that needs to be done, introduce yourself (“It’s Nurse Nancy,” “Honey, it’s me, Bob, your husband”), explain what you are going to do and, as you help your beloved, describe each step of what you are doing and what you want her/him to do. Move very slowly and speak very gently. Exude serenity and love. (I know this isn’t easy, but at least pretend.) Close the door of the person’s room if she is going to be unclothed for a time to give privacy. Step away again if he becomes combative.

The main thing is, don’t persist in doing what doesn’t work.

We modern Americans with our “can do” attitude and our habit of rushing from one thing to the next often make poor caregivers. I notice this especially in some young nursing assistants. They need training in slowing down. We are working with people whose brains don’t even work half as fast as our own. We can’t expect them to conform to our speed of life. Our job is to conform to theirs.

A few nursing homes and hospitals are beginning to get this. Beatitudes in Phoenix, recently profiled in the New York Times, is a national model. There are questions I now ask whenever I interview a care facility for Pat. How are your CNA's trained to deal with demented residents? Do you insist on a schedule? Use behavioral cues and rewards to modify behavior? What’s the policy regarding chemical restraints? These are critically important queries to make. They can mean higher quality of life for your spouse or sweetheart. They can save his or her life.      

As Thomas Kitwood, the British social psychologist who first promoted “person-centered” care for people with dementia, wrote, people with dementia call us “to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions, closer to the life of instinct.” (in Mead, op cit) We need to slow down, focus on the moment and be with our beloved rather than longing for a medical solution, for an escape from the burden of care and from the reminder of our own mortality that it brings.

No one does this perfectly. A time comes for most of us when we can’t do it anymore, at least not 24 hours a day. That’s what professional facilities and useful drugs are for. We surrender the person we love to strangers, to imperfect medical science, to a world without answers. We entrust them, at our best, to the Love that undergirds all life.

Drugs, Part One

Autumn again. Fall in California is the time of hot offshore winds, the Santanas (or as we locals persist in calling them, Santa Anas). They haven’t set in yet, but they will. The year is playing out its final act. Leaves are yellowing, farmer’s markets stacked high with red and yellow tomatoes, fall peaches, plums, pears. We used to love this time, Pat and I. Going to open studio tours, bicycling in town, driving up the coast with the turquoise glass sea on our left.

This week, Pat’s in a geriatric psychiatry hospital in Newport Beach, having his medications adjusted. He’s exhibiting major neurological side effects from the anti-psychotics he’s been taking over the past 15 months to control agitation. A sideways stooped posture, an inability to judge distance and the height or depth of surfaces he’s trying to walk across, tiny shuffling footsteps, a complete loss of comprehensible language, an inability to swallow his saliva. Chris and I drove him down to Orange County. He did better than I expected in the car, sitting patiently for four hours. He still likes to go places and notices more than I realize.

Pat grew up in Corona Del Mar, on the edge of Newport Beach. He learned to swim at Carnation Cove, sailed to Balboa Island in the small skiff his dad gave him when he was 10 and surfed up and down the Orange County coast as a teenager. He married his first wife there and it’s where Chris was born. The place used to overflow with memories for him.On the drive down to the hospital, I reminded him every 45 minutes that we were going to Newport. When we got there, I said, “Hey, Pat. We’re in your home town!” He didn’t seem to respond.

Then, as we drove down 16^th Avenue to the hospital, he said “School, school.” I had no idea what he was referring to and couldn’t see any buildings that looked academic from my side of the car. Inside the hospital, the very kind activities director, Kaj, engaged Pat. When Chris told him that Pat was from the area, he asked where he went to high school.

“Harbor High and Corona Del Mar,” I answered for him.

Kaj said, “Harbor’s right next door. You drove past it on your way here.” Pat had recognized his old high school. I was floored.

It's these brief breakthroughs that disorient caregivers. When we think that memory and recognition are completely lost, they suddenly pop up, intact. As if our beloved is on the far end of a static-filled long-distance connection that momentarily normalizes. Out of the garbled nonsense words or the silence, the person we love emerges as if he or she had been there all along, waiting. These moments keep us hopeful that a change in medications, in diet, in supplements or therapies can clear the line a little more. But that hope, being as Emily Dickinson wrote, “the thing with feathers,” mostly flutters away. 

Today, I’m offering a short quiz. If you’re a caregiver, you already know the answers. At least, I hope you do. If you hate quizzes, bear with me.

1. How many drugs are there that cure Alzheimer’s and other dementias? 

2. How many drugs are there that help slow the progress of the disease for some people with dementia? 

3. When did the last completely new Alzheimer's drug to be successfully released in the US enter clinical trials? 

4. Has there ever been a drug released that specifically targets non-Alzheimer’s dementias?

5. How many drugs are used to suppress or control difficult behaviors of people with dementia?

6. What percent of anti-psychotics administered to dementia patients are being used off-label?   

7. What percentage of these have black box warnings indicating that they may cause sudden death in the elderly?

8. How many people in the US suffer from some form of dementia?

9. How much Federal money goes into dementia treatment research? 

10. By how much is the population of Americans with dementia expected to grow by mid-century?

11. How much does dementia costs the economy each year in lost wages and tax revenue, Medicare/Medicaid and unpaid labor? 

Answers

1. None 

2. There are three. Depending on the individual patient, maybe two will work. Maybe none. 

3. 1989. Twenty-four years ago. 

4. No. 

5. Scores of them, mostly anti-psychotics and anti-depressants. 

6. 100%. 

7. 100%. The FDA warning clearly states that anti-psychotics are not for use in elderly demented patients. But they're given to this population all the time. 

8. 5.2 million and counting, twice the number of people who have or have had breast cancer.

9. Currently, $54 million, or roughly $11 per patient per year. The President's budget for 2014 proposed $100 million. The House has cut this back to $45 million, or $9 per patient. (Less than half of the $202 million slated for breast cancer research. I'm not saying breast cancer should have less, just that dementia research must have more, and quickly. Seventy-two million of us are in or entering the high-risk age bracket for this disease.)

10. Six hundred percent--600%.

11. $202 billion. (I keep harping on this number because it's so extreme) 

This is the world-o’-medicine that dementia patients and their caregivers contend with. If there were an epidemic contagious disease that cost the economy over $200 billion a year, NIH would be all over it, Congress would be passing research funding appropriations right and left and the press would be building public fear to a fever pitch. Or if the disease impacted people’s sexuality. In the last twenty years, more drugs have entered the marketplace to treat erectile dysfunction than to treat Alzheimer’s. Far more.

This pharmaceutical reality leaves family caregivers grasping for straws. Or maybe lifesavers. Alternative therapies are out there—amino acids like acetyl-l-carnitine and phosphatidylserine; massive daily doses of coconut oil; organic foods; chelation therapy, marijuana, high doses of EFAs. We’ve tried some of them. Chelation actually helped, but I couldn’t get Pat to take the huge regimen of pills for more than one six-week round and he couldn’t handle IV chelation. Coconut oil also seemed to help, but as Dr. Mary Newport notes in her book Alzheimer's: What if There Was a Cure?, people in late stage who use it may revert to an earlier more agitated stage, which is what happened with Pat. The up side was that his speech improved a little.

My advice from our late-stage vantage point is to work with your spouse as early in the disease as possible to explore all the alternative therapies, especially coconut oil and chelation and whatever supplements he/she can willingly ingest. But don't knock yourself out trying if your beloved isn't willing. Do what you can--coconut oil 50/50 with butter, for instance. Coconut almond cookies (I'll share the recipe when I get my kitchen unpacked). Or the helpful amino acids in powder form, blended in a smoothie. I do believe that we gave Pat an extra year of fairly good cognition by trying alternatives. I wish I had done more. 

All caregivers could repeat that as their personal mantra. I wish I had done more. Please don’t go there. We have almost no human guidance through this wilderness and whatever helpful thing we do is more. Whatever individual researchers can do, struggling to get grants and pharmaceutical company backing,  is more. Whatever foundations, international associations, governments and the World Health Organization can do is more.

We do need to keep our heads up and raise our voices, like the AIDS Act Up people did, like the pink ribbon breast cancer people did. Or if you’re too tired from caregiving to do any of that, just tell yourself that others will do the “more” you can’t do. And if you can, say a prayer, go on a Memory Walk to raise funds for the Alzheimer’s Association, write one letter to your Congressperson. 

You’ve done your part.

Next time: Why not anti-psychotics?

Miracles

 This morning, I went walking alone on the beach. I’ve been taking long walks almost every morning since I got Pat in the board-and-care facility. It’s part of my plan for catching up on self-care.  As I set out, the sun was shining, kicking up glitter from the surface of Morro Bay. But in an instant, a billowing wave of fog rolled through, chilling me, obscuring the landscape. Pat’s disease has been like that. One moment, we were fine, living our middle class lives; the next, we were enveloped in a fog of unknowing, loss and fear. But you know all that from these essays. What I want to write about here is the strange process that brought us back to California, that saved my sanity and made Pat’s life better.

A few months ago, at a battered but well-loved coffee house in Santa Fe, I sat down with a friend to figure out my finances and goals. In particular, I wanted to determine what it would take to get Pat back to California. It was around the same time that the hospitals were saying that he needed to go to a nursing home, while the nursing homes were saying he needed to be in a hospital. What actually happened, of course, was that he came back to our house again. Even though the doctors knew I could no longer take care of him.

A local Hospice stepped in with the first miracle, using Pat’s dramatic weight loss this year to legitimate their involvement. Hospice workers make miracles. They calmed Pat down when nothing short of big doses of drugs could reach him. They got him showered and shaved without resistance. They even provided a harpist to come and play for him. And while she played, his face opened up, he listened intently—the old Pat came back. Hospice bought me time to get a plan and resources together.

When I met with my friend, she told me to look at online crowd funding as a way to raise money for Pat’s long-term care. I’d had conversations with friends in California about a fund-raising event for Pat, but the long-distance logistics were impossible and no one had time to spearhead it for me. So I let the idea slide. But online fundraising—that I could do.

I went with FundRazr.com, because you can get all the money donated (minus a percentage for the website and for PayPal, which manages the donations), whether or not you hit your target. There are lots of others—compare them for yourself if you’re interested.

And you may well be. Caregiving is phenomenally expensive. Have I already said this? Residents in long-term care facilities can easily go through all their savings and most of their assets in just a few years. The fortunate ones provided for themselves in their working years by paying for long-term disability insurance. Medicare covers some things, but your beloved has to be hospitalized first. People without assets can get their state’s version of Medicaid. I think I’ve mentioned that the application process is not for the faint-hearted.

So fund raising--events, campaigns or crowd sourcing--is a viable addition to the mix. Since I’m a grant writer by profession, the thought of it was not perhaps as repellant as it might be to some. Still, I procrastinated; not at all keen on asking family, friends and strangers for money. We believe so strongly as Americans that we should do it all ourselves, both physically and financially, when it comes to caring for our spouses or other family.  “My family, my burden” is our motto. We’re individualists to the death. But please, consider asking for help before that, because who’s going to take care of your beloved if you kill yourself trying?

Here’s what happened when I finally got the nerve to post Pat's FundRazr campaign on Facebook:  Some people actually gave money. They gave a large amount of money--$1,000, $500, $200, $50. I was astonished. 

And then a friend who doesn’t have a lot of liquid assets contributed to the campaign by opening a bank account for Pat’s benefit. She sent a letter in the local paper in our former hometown. The editor printed it with a nice picture of Pat. Deposits to the account skyrocketed. Then someone who neither Pat nor I knew, who lived on the other side of the world, in fact, sent a check for $10,000. When our friend called with the news, I burst into tears. I knew that the long struggle to discern whether or not we should go back to California was over.

Strangers paid forward the prosperity that they had received and we came home. An appropriate place for Pat, near his beloved Pacific ocean, appeared within two days of our arrival. This, after I’d fruitlessly sought long-term care for almost a year in New Mexico. Friends here opened their homes to me. I returned to New Mexico and got the house packed, cleaned, repaired and painted—skilled workers turned out to be just a call or two away. Amazing grace.

As a caregiver, you live by miracles; you live with their absence. You learn to hold on, because if you don’t, you’re not the only one who will drown. And you also learn to let go, because you have to, because you eventually discover that it’s not all up to you. For a month before these miracles came, I heard a voice in my prayers every morning. It said, “Let other people help you.”  I began to look at the ways in which I’d resisted help, even if it was just a negative rejoinder to someone’s attempt to cheer me up.

Let other people help you. The gift of caregiving is that you discover your own limits. You come to the dark edge of what you know, what you can do and you give up. But not to emptiness, not to the death of all hope. You reach out and take hold of a miracle, because someone asks, “What can I do to help? Could I go grocery shopping for you? Could I help you clean the house?” And you say, “Yes, thank you. That would be wonderful.”

It’s an act full of wonder, a seedbed for miracles, this saying yes to the kindness of others. 

Mysteries

(The following was written in July. Pat improved with some medical intervention and by month's end, as the result of other mysteries of love and compassion, we were able to move home to California's Central Coast, where he is, for the moment, in a nice little board-and-care facility. I wanted to post this so that the continuity of our story would stay intact. As soon as I can sort out the tangle of emotions involved in our incredible homecoming, I'll write an update.)

Where does my husband go when a raging and completely irrational being leaps out at me in his body? Over lunch, we were laughing as he made a face on purpose while crunching down on his potato chips. It was a bit of humor that was all Pat. Now, two hours later, he’s making faces full of rage as I try to help him change his clothes, hitting out at me, screaming “Liar! Liar!” And when I say, “It’s Connie. It’s okay,” he looks at me with utter hatred.

It will take multiple doses of sedative to bring him down from this, but right now, I can’t get anywhere near him to administer the medication. I hide it in vanilla ice cream. I hide my fear and grief and rage in the quietest words I can muster. Underneath the words, I am outraged that I am being treated this way. But by whom? A person whose brain is almost gone? A medical system in which hospitals tell me he needs to be in a nursing home and nursing homes tell me he needs to be in a hospital? God who asks me to trust Him in the midst of this horror?

I choose the medical system. Its faceless uncaring, its incredibly stupid and self-contradictory rules, the greed of its executives that places profit before people. Pat should long ago have been admitted to a clean, caring, safe facility that specializes in dementia patients with severe behavior issues. A place where he would get one-on-one care from someone trained and skilled in this kind of nursing. He is not there, not because they don’t exist, because we are out of money. A high-quality care center costs from $70,000 to $100,000 per year. Somehow, you have to go through all the lesser stages of the disease without spending down a huge nest egg so that you can get through the final several months. Or you need the increasingly hard-to-get long-term care insurance that will take a big bite out of your monthly income, unless you are the head of a multi-national bank.

Ah, you say, but what about Medicaid? Well, the trick with Medicaid is finding a place that accepts it and is decent, clean, professional and personal. There are some. They get four or five stars on the Medicare Nursing Home Finder website. And there are many more that get maybe one or two stars. The better centers are usually full. The only way your loved one can get in is if a resident dies. So you develop a rather convoluted prayer: “Lord, let a bed come open. I mean, I don’t want someone to die so that my beloved can have a good place, but, um, you know….”

I’m hoping the soon-to-be-in-place Affordable Care Act will in fact make long-term care affordable. I haven’t heard anything about nursing home or assisted living facilities in all the cannonades of anti-Obamacare verbiage. It would be wonderful if there were to be a mandate, as there is in Oregon and a few other states, that both nursing homes and assisted living centers, the latter being far more likely to take on the challenge of residents like Pat, must accept Medicaid.

In both New Mexico and California, the smaller more individualized care centers are nearly all private-pay. Albuquerque has a Medicaid reimbursement program for assisted living or full-time homecare if the patient has first been in hospital, but not Santa Fe or the state’s other communities. In California, there are 1,500 assisted living beds in a strange mix of rural and urban counties that can be filled by Medi-Cal recipients. Fifteen hundred in a state of thirty-five million. How did that happen and how is it going to help?

The brokenness of our broken medical systems is nowhere plainer than in the world of dementia and long-term care. As I’ve said before, this is primarily because our society considers old people to be disposable and the collapse of the mind and body somehow embarrassing, an inexplicable weakness. Put ’em away somewhere so they don’t infringe on my right to pretend I’m never gonna die. And by the way, don’t take my taxes to care for them.

We live in the deathless society. Public images depict the young, the wildly healthy. We make wars that don’t touch us. We have tidy cremations so there aren’t bodies lying around at funerals. We ask the hospital to call when Grandpa is “gone.” Death is reserved for television, film, news broadcasts, where it is ghastly beyond belief and so, again, doesn’t touch us. Death is a horror show. We, the living, fictionalize it.

When you live with someone who is dying by slow degrees, or when you visit them daily in the care facility, the process of ceasing to live grinds away at you, almost as much as it erodes the person you love. Little losses point up how vast and complex the human brain is, how resilient the body.

 One day, your beloved can’t tie a shoe. It will take awhile, but a few years later, he won’t know what a shoe is. Or will he? He sets it in the fruit bowl, but he also dutifully sits down so you can put it on his foot because he really wants to go for a ride in the car. So does he know the meaning of the shoe or not?

The answer is yes and no. If the caregiver is providing context for the shoe, yes. If the demented person has to figure it out for himself, no. And this is one reason caregivers burn out. Imagine taking every act of the waking day and breaking it down into its smallest comprehensible components. Set the shoe on the ground. Lift the foot. Set the foot in the shoe. Wiggle the toes to position it correctly. Pull the tongue of the shoe up so it doesn’t wrinkle and hurt the foot later. Pull the laces tight. Tie a bow (this involves scores of steps in itself). Say, “There, now you’ve got your shoe on.” Repeat with the other foot. Move on to the jacket, the hat, the sunglasses. Do this for every act the beloved needs to accomplish in the course of a day. Repeat every day for as long as the demented person lives at home.

The mystery is this:  that so many people accept this burden and don’t cast their loved ones away.  Something like 40 million Americans are currently caring for loved ones with some form of dementia. Many others reach out to help those who shoulder the task of care. And many of us who give care have felt the buoying effect of love and prayers, even when we were beyond going on, enabling us to go on.

The thing you find in caregiving is how strong love is. Your love for the beloved, and. when he or she has a moment of clarity, his/hers for you. The love of your friends, your family. The love of total strangers, which I’ll attempt to explore in my next blog. The love of God, or the Heart of the Universe(s), that wraps you round when you really truly can’t go another day and carries you and your beloved through to the next.

This love carries you through the idiocies of the medical system, through the times of terror when your beloved attacks you and you try to imagine what it’s like for him inside his brain, through the grief that accompanies almost every task, and through the loneliness when you consider the future, after all the effort is done, the dying finished, the house empty. Love, you find, will still be there. It makes you tough, sturdy, able to pick up the life you’ve been given to live and move into the light-filled world again.  

Anniversary

Today is our 12th wedding anniversary. I'm so grateful that I found and married my sweet soul mate. He's given me so much and this marriage has transformed my life. I'm glad I didn't know 12 years ago what awaited us. But I don't think it would have changed my mind. I love you, Pat Gannon.

Full Circle

Full circle, from home to hospital, three months of trying to find long-term care placement and now, unexpectedly, Pat is home again. I never thought I'd see him in our house again, lie next to him in bed, greet him in the morning with the time-honored, "Want a cup of coffee?"

It wasn't my idea. I thought we'd find the perfect nursing home or an assisted living situation in California that didn't cost an arm, a leg and a few internal organs. I thought I'd surely have found a job out there by now. I thought we'd have packed him into a motor home and safely delivered him to the place we both long to be. But that isn't what happened.

The day I brought him home, I had no clue how I would do this home caring, even with help. The alternative, however, was letting the psychiatric hospital court (yes, these places have courtrooms on site) remand him to the state hospital in Las Vegas, New Mexico. It would have been okay with me, as I've heard their long-term care ward is pretty good. But when I spoke to the case worker there, she told me that, even though I have medical Power of Attorney, am named in Pat's advanced directive, and am his court-appointed psychiatric guardian, I would have no say in his long-term care placement. Since there weren't any beds currently available at the state hospital's nursing home and he didn't need to be hospitalized any longer, they reserved the right to place him in any nursing home anywhere in the state that would take him.

If you've had experience with Medicaid-funded nursing homes in poverty-stricken states, you know how scary that scenario was.

UNM Geri-Psych had given me less than a day to find out what my legal options were. And, of course, all the senior legal assistance people said they couldn't help, given the brevity of the time frame. So, fearing that the court would side with the hospital, I asked for Pat to be discharged before the hearing took place. Our dear Cousin Molly once again stepped in to help drive Pat to Santa Fe and to get him settled a bit at home. The first night, he slept over 13 hours, as if making up for all the sleepless hospital nights.

Since then, he's been sleeping really well, eating like a racehorse and seemingly enjoying himself walking around our backyard in the warm afternoons. We breakfast, then go for a regular walk around the neighborhood, then he sleeps for a couple of hours in what I think of as the miracle chair, a recliner/rocker we got for a hundred bucks. After that, lunch and then about three hours of a combination of pacing the backyard while talking ceaselessly to himself, listening to me read, whistling along with music and, just occasionally, getting really really angry at nothing. Then dinner, another walk around the neighborhood and a gradual dropping off to sleep. Strangely, it's pretty manageable. I'm writing this while he's doing his afternoon rounds of the house and yard.

I treat it as his job, the work he does while I do mine. It's a way for him to use up energy, to get some sunshine and exercise, and to keep busy in his own way. I wish he could do a bit of actual work with his hands, sit and look at pictures or read a magazine. But my acceptance of what he's able and willing to do makes the day much less stressful.

Part of what has shifted is my attitude. This past year has been a profound spiritual voyage for me. At some point, as the result of an entirely (so I thought) unrelated support group, I began to turn my full attention to God's voice. At first, it was just a prayer and meditation time in the morning. Over the months, it's become a more or less frequent conversation with God, punctuated with moments when I haul myself out of whatever mud hole of fear and worry I've slipped into and step mentally into a circle of light I call the Presence of God. Sometimes I just breathe there for a few moments, calming myself before I resume my day. Other times, I ask questions, make requests, thank God for some tender mercy or beautiful bit of the world.

Why this helps, I don't know. I don't need to know. I find that I am cheerful much more often, that I can hold my tongue when Pat inadvertently says something hurtful, that I can be peaceful and supportive when he wakes me up in the middle of the night in a panic. I am caregiving out of choice now, and stepping out of the stress as often as I can. Even though I have less time to myself than I did when I felt frazzled and overwhelmed, I don't feel divided anymore. Taking care of Pat is my job, not something I have to do in addition to a job or job hunting. And because we went through weeks of trying and failing to find suitable placement for him, I'm fairly certain that it's the job God wants me to do right now. Not forever. Perhaps not even for more than a few more weeks. Just today.

Once of the best things about this time is that I get a "do-over." I get to treat Pat the way I wanted to before, but just couldn't. It's a living amends to him for my anger and impatience and it also is strengthening our relationship. I'd actually have to say love is deeper than it's been in some time. So as we approach our 12th wedding anniversary (July 1), there's a happiness I never expected to know again in this relationship. Full circle, indeed.

Bodies

When people talk about dementia and Alzheimer’s Disease, we speak mostly of brains, that very specific physical site where the damage is done, where speech aphasia takes place, where motor control and social learning is lost. We don’t talk much about the rest of the body. At least, not until the very last stages when the ill person’s inability to swallow, maintain weight and move about signal the rapid muscle wasting that leads to death.

But just like the rest of us, people with dementia inhabit bodies that were once young and strong. The changes in these bodies may frighten the rest of us. A mom, always sturdy and beautiful, becomes a tiny creature the size of a child with translucent hands and a compulsive need to chew her tongue. A brother, once a hulking funny guy with football player shoulders and feet the size of Manhattan becomes soft, pale, somehow absent. A husband, who once could rouse desire with a sly glance, becomes a frail stooped old guy, his lovely muscles vanished under wrinkled skin that hangs like a worn shirt from his bones.

Still, and this is what is both a saving grace and a heartache for a spouse or sweetheart, the present body of the beloved is like a sheer curtain hung over the past. We look beyond what appears at a changeless beauty in the person with whom we’ve shared such important intimate years. There is still desire in the mix of emotions.

What do we do with that longing? How can it endure the spoon feedings, sleepless nights, sponge baths and changing of throwaway diapers? I don’t know, but I know that it does.

On a website for spouses of people with dementia, I found a number of chat threads that are amazing in their searing honesty and insight. One woman asks if it’s okay for her to date someone who has reappeared from her past as her husband, confined to a nursing home, is unable to recognize her, communicate or interact. She hesitates, because she loves her husband, because they are married, because they have children and a long history together. Even her sons tell her it would be okay. Still, she’s unsure. Another woman speaks of curling up on her husband’s bed in his nursing home room, molding her body to his, so that “their bodies can remember together.”

I don’t think any books have been written for spouse caregivers that include more than a cursory nod to the issue of dementia and sexuality.  The dementia caregivers’ bible, The 36 Hour Day, spends less than a page on the issue. There are books and websites on general caregiving that say a little more. But generally the attitude is that sick people don’t have sex and the people who care for them (unless they’re perverts who prey on the weak) aren’t interested in them “that way.” Nonetheless, recent research in Great Britain shows that married couples in which one spouse suffers from dementia continue to have sex well into the mid- and even early late stages of the disease, an average of eight years after diagnosis. Surprise!

For early-onset dementia patients and their spouses, sex is an even more acute issue. As my husband sagely said, “Well, I’m still a guy.” And I’m still his woman. But when you're caregiving full-time, you just don’t feel sexy. When you do make love on those increasingly rare occasions, you’re still caregiving, because your partner can’t remember the moves. It can be pretty funny, if you let it. “No, honey, you have to lie down.” “Hey, I’m over here!” “Wrong place.” Etc. 

The trick is to be adaptable. I was going to say flexible, but that’s a different kind of sex. You have to do more, give more, take care of both his/her needs and your own more often. The reward is that you can get back that lost intimate connection, that joy, even if just for a few minutes. You can see your beloved's eyes light up, see see his/her face relax in youthful happiness and contentment. It’s worth it.

When your beloved is in a care facility, of course, sex is difficult, maybe impossible. There are usually no arrangements for conjugal visits. But being physical is still important, as much for the caregiver as for the one with dementia. The other day, I walked on to the ward where Pat has lived for nine weeks now. He saw me and his face literally shone with joy. I reached out to him and he wrapped his arms around me, held me for a long time, kissing my hair and my cheek. It was so affirming for me. Pat is still there somewhere, able to remember me and his love for me. Usually I have to say “I love you” first, and then he will say it back to me. Every now and then, he will spontaneously whisper, “I love you.” I delight in those moments.

I give him lots of back rubs because his lower back hurts almost all the time. I don’t know whether it’s disc degeneration or just the bad hospital mattress. I always hold his hand when we are walking, put my arm around him when we are sitting side by side. The other day, as I knelt at his feet helping him put on his sandals, he reached out and stroked my hair. He might have been thinking of our dog, but I took it as a gesture of affection for me.

Caregivers, don’t turn away from these opportunities to touch your beloved or to let her/him touch you. The beloved’s caress will still thrill your heart when you let it. If there is old unresolved conflict that you can no longer discuss because of his/her aphasia, loving touch is the same as forgiveness. Touch replaces words; it can even become a form of prayer, shared bodies that become a shared spirit. If you are willing to forget convention, forget our culture’s views of the elderly and sick as disembodied, if you are willing, despite sorrow and exhaustion,  to be flesh to flesh and heart to heart again. 

Who Reproduces the Reproducer?

I ran across this question when I was a graduate student in the 1980's. Neo-Marxist feminism was a popular theoretical construct at the time. Regardless of what you think of Marxism or feminism, the issue is an interesting one. The idea is this: social groups have producers and reproducers. The producers--traditionally a society's men--are cared for by the reproducers--women--so that they can continue their labor. Those who work in the public sphere are "reproduced" through food, clean shelter, clothing and care provided by those who maintain households and families.

Caregiving is the work of re-production, not in the biological sense, for it can be carried out by both sexes young or old in a pinch, but rather in the social sense. Caregivers reproduce the social order by taking care of those who labor outside the home and by shouldering the burden of those who cannot--children, the ill and the elderly who can no longer do productive work. The problem posed by this view of reproduction is, who takes care of the caregivers? 

Within small close-knit societies other caregivers share this work. The tasks of reproduction, both biological and social, are shouldered by groups of women (post-menopausal, child-bearers and girls) in so-called primitive social groups, and sometimes by men who are too old for the rigors of hunting and farming. "It takes a village to raise a child" and also to feed hunters and farmers, to build houses, to gather wild foods and plant gardens, to tend the sick, to care for the elderly and to watch with the dying.

The problem in modern post-industrial society is that everyone who is able-bodied is pressed by the cost of goods, food and housing into the workforce in order to keep the economic engine sputtering along. Though both men and women are wage-earners now, a number of studies show that women still shoulder the additional burden of social reproduction. How does this impact caregiving for elders and especially for those of us who are dealing with early-onset spousal dementia?

Okay, now I'll take off the academic mask and share with you how it affects those of us in the twilight world of younger spousal dementia. It's a lonely purgatory. We try to work for a salary and to use our real talents and give care at the same time, filling in the gaps with paid help if we can afford it, with willing friends, if they themselves are not wage-earners, with community volunteers, if they remember to show up. 

At some point, this very unstable house of cards collapses and we have to stop working outside our homes. The beloved simply can't be left alone for any period of time. Perhaps there is an interim where employers allow us to telecommute, but at some point the moment-by-moment attention required by our sweethearts requires us to skimp on our work, leading us to quit or be fired. According to the Americans With Disabilities Act, employers must accommodate increasing disability demands on the caregiver. But at some point, no employer realistically can make the necessary allowances for the intensity of dementia care.

Post-employment, we work so hard that we wonder how we ever could have held a job. The disease worsens, the demands grow. Sleep becomes a brief uneasy bout of dreaming that our spouses have wandered off, that we have forgotten to feed them, that they have become abandoned infants. Why is this not like raising children? The simple answer is deterioration. If you saw the film, The Curious Case of Benjamin Buttons, you saw the process. The person starts out intact, but ends up utterly unable. The light lessens month by month, at an accelerating pace in the late stages. 

The stress is somewhat alleviated if there are adult children nearby, helpful relatives, altruistic friends, a close-knit neighborhood, an involved and committed church group.If there are not, or if their numbers are few, the primary caregiver--wife or husband--ends up in a squirrel cage of chasing outside help, overworking, exhaustion and self-recrimination, even when going far beyond the boundaries of normal endurance. And what advice do we hear from dementia caregiver counselors, websites, books? "Be sure to take time to care for yourself." Reproducer, reproduce thyself. 

When I see or hear this, I always think of a cartoon I saw years ago. A disheveled young man is asked the question, "Would you do what you're doing now if you were going to die in six months?" To which he responds. "Oh, thanks, of course not. And if I don't die, will you pay my rent?" So thanks, helpful books. And will your authors come over and stay with a husband or wife every afternoon so the caregiver can get out and exercise, have fun with friends and pursue her/his life vision?

This advice is predicated on the assumption that every caregiver has the financial and community resources and family/friend networks necessary to leave their charge for hours at a time to "reproduce" their own energy and well-being. It's notable that almost none of the writers or websites suggest how the caregiver might actually do this self-reproduction in the absence of lots of money, adequate daycare facilities and family or buddies. 

In reality, with senior day care centers over-enrolled or oriented toward calm elderly women who like to play bingo, and truly adequate assisted living and nursing home care costing upwards of $5,000-$8,000 per month, not so many real-life people can follow the self-care advice. We are left with the difficult choice of trying to care for someone at home who is utterly incapable of even a few minutes of self-directed activity and placing them in publicly funded nursing homes that provide care that is less--too often far less--than optimal. 

I face that choice today. I'm meeting with hospital staff to discuss Pat's discharge from the Geriatric Psych unit. I know that I can't take him home again. He needs 24-hour care. There is one good nursing home here that accepts Medicaid, but their long-term beds are full. We've searched at least a dozen in San Diego and San Luis Obispo/Santa Barbara, but have been turned down by all of them because Pat is ambulatory and has a history of agitation. One in LA said yes, but they asked for $11,000 up front while they waited for Medi-Cal reimbursement.

 The hospital case worker and the attending physician may insist that I let them put him in a nursing home on the impoverished south side of the city. It's based in an old motel that looks like a rabbit warren. Or in another, where a dysentery-like disease sweeps through periodically. And I will resist, stand my ground for my husband and incur their hostility. But it's my job to see that Pat gets the best care possible. Until that's available, he's safe and comfortable where he is and still making progress in recovering sound sleep and a calm alertness. That's enough for me. I hope it's enough for Medicare to continue paying the bills.

You know, I'm really trying to make these essays less of a downer for you, dear reader. They're intended to be educational as well as personal. And they're also written to help other caregivers know that they aren't alone, but facing a common problem. One nursing home reform advocate I spoke with in California told me that it isn't that I'm not trying hard enough to find placement--the truth is that very very few facilities anywhere in the country will take patients like my husband under Medicaid. He's at once too healthy and too sick for their services. The reality, I think, is that they don't want to pay the insurance costs of housing people like Pat, because Medicaid reimbursement is so much lower than the monthly fees they get from private-pay residents.

Pat certainly isn't the only relatively young, ambulatory and healthy-from-the-neck-down dementia patient in the United States. Many thousands fall through a hundred holes in the safety net. These cases are where reality bites in national healthcare reform. I hope you'll join me in talking to your Congress-people about real systemic change  and compassionate services for former producers and current reproducers. Changes are afoot and, though they may not help the current generation of dementia patients, I do believe we'll see transformations in treatment and care in our lifetime.

Blessings.   

The Road from Home

It can be terribly bumpy, this road. A couple of months ago, there were still pleasant nights, happy mornings. Then, in the space of a few weeks, Pat lapsed into longer and longer sessions of not knowing where he was or who I was. He became increasingly agitated, combative and violent toward me and toward friends and caregivers. He once was a man who always knew how to express his strong temper without violence, to be moderate, kind and fair. What triggered this major step down?

Did he sense how difficult it had become for me to spend all my time, day and night, in caregiving? How exhausted I was, how worried about money, how inwardly resentful at times? Did he somehow, underneath the disease. make a choice to act out so that I would have to hospitalize him again, so that I could catch a break? I think that may be the case, because he calmed down right away after he was admitted. It would be like him to do something, in whatever way possible, so that I wouldn't have to sacrifice too much.

But, as I knew it would be, the hospital environment has been very hard on him. He sleeps on average about three hours a night. He's often so weary that he can barely speak; his blue eyes, if they open at all, register mostly confusion. But he does recognize me and Cousin Molly who brings cookies and is so kind. The nurses and techs seem to think Molly and I are caregiving wizards. Actually, it's just that we're familiar to Pat, and that we take the time, however much time it takes, to help him eat or get ready for bed. We walk with him when he can only walk, we read to him or tell stories of our childhood when he's able to sit and listen. Sometimes we can make him laugh. Still, he often tells us earnestly that he needs to "go home."

Where is home now? Pat lives on a hospital ward with strangers, where family can only visit certain hours. I sleep on Molly's aerobed two nights at a time so I can see him three afternoons and two evenings in a row. Then I drive back to Santa Fe, through the wild spring winds that sweep gales of dust up the arroyos. I come home to a chilly house that's slowly getting packed up and emptied out. A year ago, we were a family still--my husband, our dog and me--in our warm house where a fire burned on the clay hearth. Now I'm by myself in this space that feels like a theater after the play ends. Ticket stubs to sweep out, footprints to mop from the stage floor.

I make time almost every day to cry. I recommend it to all caregivers in the late stage of any long-term illness. This is grief just as surely as it will be when your loved one has died. It's just that you are hit by shards of loss every day. A thought will suddenly hook your attention--some event or thing that you will never again share with your beloved--a trip to the beach, a holiday at home, the bed you bought together. If I'm in the house alone, I just collapse and wail and let God hold me. If I'm in the car, I pull over into a deserted parking lot. If I'm at the hospital, I duck into a restroom. I never know when the storm will hit, but I think it's important to honor pain when it comes, not to shunt it aside and try to soldier on.

It doesn't matter if the nurses see me red-eyed. I'm sure some of them cry at times--working with older psychiatric patients is grueling and heart-breaking. I learned this week that one of the med techs was a political prisoner during the Pinochet regime in Chile. How must that experience inform the care she gives to people like Pat, imprisoned by their brains through no fault of their own?

On the ward, Pat shares a room with a man who was probably self-centered and annoying even before he developed dementia and seizure disorder. He follows us around, talking loudly and getting angry with me if I don't pay attention to him. Another woman clutches at me, crying and insisting that I do something for her that I can't understand. She, too, becomes enraged if I turn away to help Pat. I have to remember that they are living in an unfathomable loneliness, that anger may be the only language they have to tell their stories, to ask for love.

Why are they here? Is this some kind of purgatory for past misdeeds? Of course not. The geriatric ward, unfortunately, is a place where older mentally disabled people may get dumped by desperate or uncaring relatives. A nurse told me that many people linger in the hospital for months because they have no one to advocate for them and there are too few publicly funded beds in local nursing homes to serve all the wards of the state.

She called me a "good wife" because I hadn't abandoned Pat. It made me sad for the ones who are left to wander this hard road alone, with no one to retrieve their stories when they lose them on the way. Think of them, pray for them when you have a moment, because we're walking the long way home together, all of us.

Paper

Like you, I try to avoid paper accumulation. I love having the trash barrel between the mailbox and the garage door and the office paper recycling bin just inside.

Since Pat became eligible for Medicare last spring, however, paper has become the stiff crinkly enemy, massing along the edges of my desk, hiding out in the bunkers of my manila file folders, resupplying, if not actually reproducing, in great heaps all over my office floor. I've filled my Medicare Parts A, B and D files with letters, forms, duplicates of forms and pamphlets that hang out sullenly like POWs smoking cigarettes and plotting escape or mental mayhem. The Agency on Aging and Medicaid file folders, too, hold heaven knows how many sheets of partially read and less than partially comprehensible directives, letters of welcome, and obfuscated applications for the (actually!) six types of Medicaid in the state of New Mexico. There's even a survey that asks me to evaluate a program to which Pat hasn't been accepted.

In my efforts to find low-cost help, I've been engaged in long-term trench warfare to get Pat into a program called, with a Sinatra-in-Spanish flair, Mi Via. I wish. My way would be to conjure up one of those jolly cook/maid/nurse/second mom/best friend characters who used to populate the kitchens of American screwball comedies and sit-coms, apparently celibate, living in and working round the clock for free.

The battle with Pat's paperwork began with reconnaissance more than two and a half years ago--this is a true story. A social worker I know told me that the husband of a friend of hers had something mysteriously called the "D&E Waiver." I had no idea what it was or which agency administrated it, but I learned that it could enable me to hire regular help for Pat without forcing us through the doors of the Salvation Army. However, rumor had it that someone high up in New Mexico's human services department had neglected in 2010 to apply for the federal money that funds the waiver. And, as it's a biannually funded program, that cut out any new recipients for the next two years. When I called the Agency on Aging and Long-Term Services to add Pat's name in October 2010, we were 647th on the wait list.

A few weeks ago, we finally rose to the top due to the wondrous intervention of our Medicaid social worker, God bless her. However, the process of applying for the waiver was daunting at best. I was told that it would take six weeks to get boots on the ground, i.e., care givers in our home who were getting paid by the waiver program. Well, I don't know too many people in the profession who can wait around for six weeks to even begin working under the waiver--they first have to apply for certification--and then another four weeks for their initial paycheck.

Then I discovered that the organization that was actually coordinating Pat's care was not the group I'd signed him up for, but a subcontracting group, and that they didn't do the required initial home visit, but subcontracted it to Goodwill Industries in Santa Fe. AND that neither group actually employed the caregivers. THEY work for, of all places, Xerox Corporation, which has a little check writing gig for the state alongside all its copy machine sales, leasing and repairs.

The Goodwill people finally called, only to let me know that the home visitation would take at least three hours. Have you ever tried to get a severely demented person to do something for three minutes? I told them I didn't think Pat could handle three hours of total strangers examining him and his home. They said it was mandatory. I told them I'd get back to them.

That was five weeks ago. Ultimately, we gave up our place in the Mi Via waiver line. Pat became more and more agitated and unable even to work with his existing caregiver or to tolerate my brief absences from the house. I was certain that he couldn't have strangers coming in to care for him. In short order, it became clear that he would not be able to live at home anymore, even with full-time help. The time had come and gone for that, well before we reached the head of the line for Mi Via.

I haven't gotten any mail from the Area Agency on Aging or Medicaid in a month. I sent in a simple waiver-decline form and the mighty flow of letters dwindled away like the Rio Grande in our current drought. The paper in my office has quieted down, too. Just an uneasy rustling from time to time as I stack it for recycling.

What Remains

This is not a question. Because after eight years of pushing back against dementia, I'm constantly surprised at what does remain--the memories, sense of self and humor that Pat still can muster. Tonight, he wanted to be in the kitchen with me. I'd usually push him out into the living area, telling him that the very small galley's not big enough for two, which it isn't. This evening, I let it be. He hovered over me while I mixed a batch of peanut butter cookies and heated baked beans and sausages to make the night seem warmer. We admired three perfect bell peppers together, and then admired them again in the salad, bright squares of red, yellow and green nesting among bronze lettuce leaves.

We lingered over dinner, looked at a photograph of Pat, his father, his son Chris. He knew the picture was taken in Cambria, recognized everyone and knew that it isn't how Chris looks now, that he was much younger in the photo. We talked a little about what was happening in Pat's life at that time.

We spoke of the music that was playing on the radio, a Schubert symphony, and agreed that neither of us had ever cared much for Schubert. We could both hear the bass viol. Pat used to play the bass and can always hear it, but I can't. After dinner, he walked around for a while. He wasn't agitated or unhappy. I checked in with him, we listened to a little more music together and he fell asleep to James Taylor singing "September Grass."

These are such ordinary things, not the stuff of important reflection, unless they are all you have to make a relationship. Then they become precious, vital. When I think of Pat going back into a nursing home so that I can work full time, these are the things I must weigh against my great need to have a normal life. If his experience this past fall is any gauge, he would again, and probably permanently, lose these simple abilities and memories. He would no longer be able to  identify the past as past or talk about the present with anything but unhappiness and terror of the unidentifiable.

But here at home he is mostly himself. His sly comments and half-smiles, his offers to help me with things he can no longer do, certain ways of commenting on ordinary activities like getting dressed. Holding each other, resting my head on his shoulder. These moments are what I have of Pat now. I'm very reluctant to give them up. It's true that I can sometimes draw them out in a hospital setting, but there he must do without that sense of security, of himself, when I'm not available.

Am I taking too much credit for maintaining his well-being? I don't think so. This intimate knowledge of the other is one of the areas where spousal caregiving is very different from parent caregiving. Parents want to maintain their independence from their children--there is much that we don't know about our parents' inner lives and histories. Spouses are bound together by choice, by constant communion, by whatever that mysterious connection is that love and sex create. I call my husband back to himself in a way that I don't think I could call my mother back if she were living in dementia.

Today, I read through a Christmas letter I wrote ten years ago. It included pictures of our dogs who have both died in the intervening decade. I wrote of work, of Pat being so busy with contracting and carpentry jobs that he was having trouble scheduling everyone in, of the beautiful garden gate and courtyard door he made that year for clients, of house remodels, of trips to Big Sur and Pacific Grove, of bicycling around San Luis Obispo, of walking the dogs by the sea. None of that life remains. I'm glad to have the letter to prove it ever happened. It all seems now like a dream I had, years ago.

No. It's not true that none of those things remain. I wrote about a table that Pat was designing. It's sitting behind our couch right now. In a few minutes, I will go and lie down by my husband as I have for so many nights, so many years. I will kiss his cheek, tell him goodnight, tell him I love him and he will reply, if he's not soundly asleep. Just as we always have.

It's not the relationship we planned or the one we actually had for a few years. Sometimes he calls me by a name that is made up of the names of several women he's known. Sometimes, not too often, he asks who I am. But there are these other moments, these glances, these few words. And they do matter.

Indecision

We're in the deep midwinter now. Icy winds actually are making moan around the house today, just as in the carol. A bright unforgiving winter day, reminding me that my favorite thing about southern California is that right after Christmas, it's spring. I am not a fan of winter.

But writing about the seasons does help me work my way into these essays. Like the ancient Japanese haiku writers, who wrote about the weather almost every day. Weather places us, gives us an orientation toward our surroundings. When, as a caregiver, you are constantly inhabiting someone else's head and your own at the same time, it's good to have something like a snowstorm to remind you of the world outside.

My mother just visited. One of her few comments on my care for Pat was, "It's just so constant." Yes, it is constant. I am constantly responsible for making not only medical choices, but ALL the choices that keep my husband in health and safety and some degree of happiness. Like a single parent with no co-parent to consult, I must choose well for the person, in this case my spouse, who depends utterly on my wisdom for his life. And I'm also supposed to make good choices for my own.

Scary enough. Then add exhaustion and meager resources that have to cover a range of expenses including paid caregiving so that I get a few hours away each week. Mix in government agency red tape and un-returned phone calls to potential nursing homes and dementia resources. Beat thoroughly a myriad of Medicaid and insurance forms that seem to have directions written in a language I never learned, ordinary house cleaning, bill-paying, car repairs and grocery shopping. Stir together with job hunting, resume crafting and online applications and cover letters. Then fold in constant (at least every ten minutes) unintelligible yet urgent questions from my husband, and there it is: A recipe for profound confusion and indecision.

The problem is, I'm indecisive to begin with. I spend inordinate chunks of time weighing alternatives, writing checklists, and examining pros and cons. In the end, I almost always choose what my gut told me at the start would be the way to go. But the process is an attempt to mollify my fear. Fear that I will choose the wrong path, that it will lead to some unalterable error that will negatively impact not just my life, but Pat's as well.

This has, in fact, happened more than once, though almost always, the negative was at least balanced by positive experiences and life lessons. But to have to choose for someone else, especially to make choices that will have health or happiness, even life or death consequences, is paralyzing. My self-doubt is like the predator transfixing the gaze of the prey. My response, like any good prey, is to hold perfectly still. It's called procrastination. But it, too, has consequences.

Right now, the salient question is whether or not to put Pat back in the hospital for a few weeks and then transfer him directly to a nursing home in California. On the surface, it seems straight-forward. I am getting worn down; he is increasingly agitated. Answer: commit him for three weeks and get a nursing home lined up meantime. Simple. Only it's not simple. And for once, it's not just me making it complicated to forestall choosing.

First, getting him to the UNM psychiatric hospital from Santa Fe is a complex process, as I've written before. Then there are major issues involved in transferring someone from a hospital in one state to a nursing home in another. Second, I'll have to pack up the house, sell items, clean, paint and have repairs done so that it can be rented--and find a rental agency to manage it. Third, there's the actual drive (flying is out of the question--they wouldn't let him on the plane) from here to there. How do I manage a fairly robust man with severe dementia for two days in a car?

And of course, all of this is contingent on me finding a job. That actually has to come first, because where I find work determines where Pat will end up in long-term care. I have a dream, which I'm happy to share, that I'll somehow find a wonderful couple who can be live-in caregivers, and a great place with a separate living space for them. And a terrific job that can support home care--my current understanding is that MediCal won't separate assets for anything but institutional care.

But logistics aside, the greater issue is Pat's health and happiness, and mine. I've seen how he fares in hospitals and at least one nursing home. Granted the latter was the barrel's bottom, but there is something about Pat that can't thrive in institutional settings.

Other dementia caregivers must have this experience--I hope they know something that I don't. So many resources talk about mom just settling right in after a couple of weeks of pouting, or dad loving the attention from attractive young CNAs. And I did see people at Casa Real who seemed fairly content--they had friends, the nursing assistants spoiled them with attention, they enjoyed bingo and paper crafts. They were all older women.

Pat is still who he is, somewhere deep inside. That confined passive world doesn't suit him. He's like a wild free creature who wastes away when caged. So how can I do this to him? How can I put him in a an institution where he will wither? On the other hand, how can I go on with caregivers dropping out like tired pitchers, Pat getting more erratic and too many things like bill paying and income generation left undone?

The answer to both questions seems to be, "You can't."

So what is the third option? What is the divine surprise? I don't know. I hope it shows up very soon. Hope is the relevant word here. The belief that all comes right in the end. As Julian Norwich said, "All will be well, and all manner of thing will be well." Indecision wears down hope. And I need a full measure.

Outside our warm home, the wind has died down, the stars are sparkling. It is very cold this winter night.



/

What does it mean to serve?

Stepping out of the world of normal employment for the past seven months has given me time to reflect on the pace, relationships and quality of the work I've done in the past, and my motivations in doing it. My goal in caring for Pat is to help him feel safe, happy and loved. Having never raised my own children, I don't think that this objective has ever been even a minor motif in my daily work before. It gives me pause. What matters more than serving another human being? Than using one's energy and talent to make another life or lives better?

I've never been very excited about the word "servant." My mind automatically goes to adjectives like servile and subservient and the vision of menial work done at very low wages for domineering egotistical employers. Recently, however, I've been thinking a lot about work as service, as an exchange between people who are in a relationship, however momentary or long-standing, one that has the potential to create mutual benefit and joy. It seems to me that work in the post-modern world too often lacks joy. The service in many "service industries" is hurried and harried, even bitter, rather than personal and fulfilling for all parties.

Work today seems to involve so many negative elements--catering to superiors (which is not the same as serving them), ruthlessly competing with co-workers, friction among laborers and between labor and management, self-promotion and aggrandizement, over-working to qualify for promotions and raises, sudden and inhumane firings, low and stagnant wages that do not reflect the true value of work done, fear of being outspoken or too inventive (especially in bureaucratic and "top-down" organizations), unwillingness to work hard, the "dumbing down" of workers who are not supported for participating in knowledge-building education. The top complains about profits and the rest complain about wages. But who talks about service and actually walks their talk?

When I was working, I sometimes tried to speed through my workday so that I could get back to my "real life." My home, my husband, our garden, our dogs, our community and my writing--these were the parts of living that really mattered, where I wanted to serve. Work was an interruption. I'm afraid this is true for a large percentage of the employed and it strikes me as very sad.

The contemporary world of work isn't usually integrated with the rest of life. Either it is an afterthought, or it is all consuming, pushing family, community, recreation and health to the margins. Some people love what they do so much that they don't mind this lopsided life. And perhaps they are called to it, given to a life of service through their business or their workplace. But I think a lot of us do not view work as service; rather, we see it as compulsion, to which we alternately give in or offer resistance. So how do we right-size our work life, make it more like the kind of service we do gladly for family and friends?

I've learned a great deal from caregiving for Pat about the wrong way to serve and hence, the wrong way to work. For several years, I've been his primary and at times only caregiver. The whole weight of his safety, happiness and well-being rested, I thought, on my shoulders. Several people told me I was his angel, but much of the time I didn't feel in the least angelic, scarcely even loving.

I burned out this summer, just when his condition worsened and he needed me most. I had lost my job, my sister had died a few months earlier, our dog died suddenly in June, we had only a few friends in Santa Fe. I ran out of internal resources. It was as if God had to drive me to this extremity to get me to stop trying to handle it all myself. As a friend kindly said, "You're doing a great job of trying to be Pat's Higher Power, but, you know, you're not."

Her words struck home. I had to sit down and examine how I'd been "serving" Pat and the harm it had done him and me. I'd been trying for months to get him to be more like my memory of Pat--relaxed, funny, accepting. Not so that he would be happier, though that's what I told myself, but so that I could escape the burden of caregiving and grief that weighed far more than I could carry.

The first thing I had to do was to turn Pat's life over completely to the care of God, who loves him more profoundly than I do. The same God who had given me to Pat so that he would have someone in his time of need, as he himself had been there for so many others in theirs. The same God who had given Pat to me so that I could experience being loved and accepted for exactly who I am.

Surrender is another term I don't like very much, but surrender is at the heart of this lesson in right and spiritual service. The key to serving this way is comradeship. You can only do it by seeking and accepting the help of others. By recognizing that collaboration is the one way that anything truly succeeds. We don't create the best outcomes through being selfless solitary heroines giving all or by being Howard Roarks in our own Randian universes. I was shocked to find that I have absorbed this cultural Lone Rangerism to such a degree that it actually kept me from picking up the phone and asking for help when I was desperate.

Coming out of isolation in my role as a caregiver and admitting that God has a plan for Pat that isn't entirely dependent on me has taught me profound lessons about work. First, it doesn't serve us or the organizations we work for to accept assignments that isolate us from colleagues. Second, it's okay not to know all the answers, not to be the smartest kid in the room. Third, service is humbling. It's supposed to be. If everyone in a workplace dedicates him- or herself to serving each other and letting go of frantic ego-driven activity, then service becomes exchange, collaboration, right livelihood.

Finally, I've learned that I work for God. Something I try to practice now is to sit quietly at the beginning of the day and ask for my marching orders. What steps are necessary this day? Who could help me take them? What serves my goal of taking the best care of Pat that I can, of being responsible but not isolated, and of widening the circle of good work in this world?

This is where I try to start now. Then I ask for help in doing the next right thing. I pick up the phone or send the email. And grace abounds.

Happy New Year, dear friends. Thanks for being part of the great circle of service and support.